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The Vanguard: A Conversation with the Black Maternal Health Caucus & Reproductive Justice Leaders

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The Vanguard: A Conversation with the Black Maternal Health Caucus & Reproductive Justice Leaders

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Black Mamas Matter Alliance

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Black Mamas Matter Alliance @BlkMamasMatter

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Black Mamas Matter Alliance (@BlkMamasMatter). We envision a world where Black mamas have the rights, respect, and resources to thrive before, during, and after pregnancy.

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From the Critical Design Lab

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Dr Arrianna Planey in conversation with Dr Aimi Hamraie

[Start of recording]

00:00:09 INTRO [Various overlapping voices] Contra* is friction. Contra* is nuanced. Contra* is transgressive-good trouble. Contra* is questions. Contra* is collaborative. Contra* is a podcast. It's a space for thinking about design critically. Contra* is subversive. Contra* is texture.

00:00:32 Contra* You are listening to Solidarity Chats: a special section of the Contra* podcast on disability, design justice, and the life world. These episodes, recorded during the COVID-19 pandemic, focus on disability, eugenics, and mutual aid. We're hoping to capture some of the conversations that disabled people, and our allies, are having about issues such as healthcare infrastructure, medical triage, eugenics, and technology as it is unevenly distributed across the population. These episodes are also going to come out at a different rate than the regular Contra* episodes, so please make sure to subscribe on Google, Apple, or Stitcher so that you don't miss any.

00:01:29 Aimi This is Aimi Hamraie, and I'm thrilled to be here with Arrianna Planey, who is a medical geographer, a deafblind Black woman. She is finishing her PhD at the University of Illinois, and in July 2020 will be starting a new job as Assistant Professor of Health, Policy and Management at UNC Chapel Hill. Arrianna's work studies equity, health, specifically in the areas of race, disability and class. Welcome, Arrianna.

0:01:57 Arrianna Thank you for having me.

0:01:59 Aimi Yeah. I'm so excited that we get to talk, because we have known each other for a few years through the Disability Geography group at the Association of American Geographers, and also through social media and stuff. And I always just feel like you have really smart takes on everything that's happening, especially in the worlds of social determinants of health, disability, health geography. So, you were one of the first people I thought of when I started this, sort of, sub-series of the podcast. Because I'm really curious, what's your take on what's happening right now with coronavirus, in terms of disability and race?

00:02:43 Arrianna I would just say, first, we can't understand the disproportionate impact of, you know, COVID-19, coronavirus, on, you know, Black people, Latinx people and people with certain kinds of disability. We can't understand that without understanding the inequity that preceded the pandemic. Because we're seeing a lot of takes from people who are, you know, experts in some way, and they're just expressing shock and dismay at the fact that people who are already disproportionately pre-disposed to poor health outcomes because of these social arrangements, because of these inequitable distributions of social resources that, you know, foster and preserve and enable life, right? But deep inequitable distribution preceded the pandemic, and now there are worsening outcomes for the people who were already disadvantaged before the pandemic. 00:03:45 So, I would say, first, we have to understand that this-that the-the people who are bearing the brunt-or the people who are-the people bearing the brunt of the coronavirus, are also the people who were bearing the brunt before this pandemic. So, we can't just suddenly care, you know? Like, that care shouldn't stop when the pandemic ends. And I'm not sure-quite sure we are seeing care. Especially when we're talking about the-you know, when we started, the number of cases among older adults and disabled people in Italy, there was this emergent discourse of, "Oh well, we had to make this ethical choice to ration healthcare." And it's very frustrating because, one, the choice to ration healthcare isn't merely ethical. 00:04:44 Ethics is not outside of, or above, the social arrangements that do predispose particular groups to shorter lives, and-or, you know, heavier comorbidity, or however you want to define it. And two, the need to ration also arises from pre-, you know, conditions, or, you know, arrangement that preceded the pandemic. But what we're seeing in Italy with the, you know, reduced healthcare capacity-that was before the pandemic, that was because of these, you know, IMF, World Bank, the sort of like arrangements that punish countries that have lower income. You know, they'll-these also... countries that have had to take out loans, often the conditions to these loans include reduced-reductions in healthcare expenditures and also public health expenditures. 00:05:46 And that means that you also see cuts in benefits to people with-who are disabled, and this is even in relatively generous social welfare states. So, I mean, that was the-that was the groundwork before the pandemic hit. So, now we're seeing, like, people using the example of Italy, you know, the COVID cases in Italy, as reasoning or justification for rationing care here in the United States or elsewhere, with the idea that older adults have fewer good years left. Or the idea that disabled patients have-well, are already less productive or, you know, economically viable people, right? So, the idea is that, "Well, we should prioritize the lives of people who can go back to work after they recover." 00:06:39 And then there's a third assumption embedded there, where-there's the assumption that recovering means returning to a state of being non-disabled or able-bodied. The problem is, we're also seeing-it's not quite a problem, I wouldn't say it's a problem; it's something we should adjust our expectations and anticipate.... We're seeing that people who are recovering from this virus, even people who had mild symptoms, are having protracted recoveries. And we're also, like, in front of prospective insurance companies, right? They're going to-these are people who are going to be undesirable, in terms of, you know, the profitability of insurance companies. So, you know, if it's like occupational or disability insurance, ...we're going to see a lot more claims, and then we're also going to see insurance companies asking for bail-outs, because the-you know, these people are a burden on their business model. 00:07:40 So, I think that there's just so much happening, and it just all goes back to... the fact that eugenics never went away. We just see it encoded in new and, well, new and different ways that are coming back to haunt us in times of, you know, scarcity, and because the scarcity is born of these neo-liberal policies. So, it's kind of-it's almost like, self-reinforcing, it's like the snake eating its own tail. So it's like... I guess I always-I kind of, like, the first thought when anyone asked me what my thoughts on the coronavirus, disability and race-related inequity-racial or racism-related inequities and outcomes, it always goes back to the macro-structure, because... that's what we're going to have to address if we want anything to be better. 00:08:41 It's not that there's anything wrong with the people who are being disproportionately affected or harmed by this pandemic. It's that social structures have set people up to be more-well as a lot of people say, "vulnerable," or "susceptible" to worse health outcomes and worse, like, overall outcomes. Because this is going to affect people's ability to maintain their, you know, maintain their housing, keep their job, and especially when we're-employment is the main means for getting healthcare coverage. That's... I would-I know that was a long answer. [chuckles]

00:09:21 Aimi Thank you so much for that analysis. I mean, I think your answer really revealed why we need health geographers to help us understand what is happening. Because, it is occurring at multiple scales, and there are histories and structures at play that are largely elided in this moment, or they're not at the forefront of analysis. And so, you know, you're the first person I've ever heard talk about, like, the IMF loans, and the effects on Italy's healthcare infrastructure. That's not really an analysis I've heard anywhere else, so thank you so much for that. I want to go back to something that you said that was also very interesting about Italy, which is that, essentially the epidemiological findings about older people and disabled people being increasingly vulnerable in Italy, have led to policy decisions and triage decisions and kind of bioethical decisions in other places. So, can you just say something about this relationship between epidemiological calculation, and, kind of, projections of data, and then, you know, outcomes as they get applied in other places? Because, I think we've seen a few different versions of this during COVID too, with, like, different groups of people as well.

00:10:41 Arrianna Yeah, I would say first everyone should read Michelle Murphy's work. I mean, just how we conceptualize and define 'population' should not go unquestioned. I'm-I mean, just-I can't do justice to her work, but understanding that fundamentally, population is a calculative concept. And, as we understand it now in statistics, in epidemiology and economics and social sciences, how we define population is often aligned with how states define population, and they're very instrumental applications. Because, they think a state's borders build-are understood to bound economies. And people who are in, within those economies, you want to have-optimize that population within that economy, right? So, you want to-this is why you see such stringent restrictions on who can immigrate into a country. 00:11:42 So, like, Canada and the U.S., we're seeing barriers erected to prevent disabled people from entering those countries. And, like, we're seeing multiple iterations of the public charge laws that try to prevent people who might take more out of the public pool of social resources than they would put in. And it's a very narrow idea of what a contribution is. So, I will say, first, we need to understand what a population is, we need a critical understanding of 'population'. Because it's not just the number of people within a bound-border, because that's never been true. Every census excludes people who are low-income. Every census excludes people who are-who do not have-who are not citizens or who do not have documentation that proves their right to be in that-in the country. So, we cannot make the argument that a population is just simply the number of people within a nation's boundary. 00:12:44 Two, there's also the... I couldn't do justice to explaining it, but there's a concept of 'disability-adjusted life years' which is used pretty heavily by both countries. It's used for health planning, it's used for insurance and actuarial purposes. And it's basically the idea that certain conditions reduce one's quality of life, and also one's likelihood of living to a certain life expectancy. And the idea is also that, those same conditions also reduce the number of years that you can be productive in an economy, or as-within a labor force. So, the-so that imputes an economic value to one's life on the basis of one's disability and health status. 00:13:39 And for these measures the default person is often a twenty-five year-old, white man, who's considered to be non-disabled. Non-disabled and doesn't have any, you know, chronic condition. So, the idea that this default person is a young, able-bodied, male person. So, you know, already we're seeing that most people would deviate from that norm. So, these populations are being made based upon the disability-adjusted life years, and also... to quality-adjusted life years, which is also-penalizes older people. So the idea that.... Well, for the purpose of triaging or rationing healthcare-I like to say rationing because people like to make that talking point of, "Oh well under capitalism, we don't ration healthcare, we'd only ration healthcare in a communist state," and it's like, No no, that's not true! 00:14:40 You're rationing healthcare when you make people pay for it. You're rationing by the ability to pay. I mean, there are just so many ways of rationing healthcare, but that's the one that people overlook the most. So, these are being used to argue for rationing healthcare on the basis of disability status, age, prog-types of diagnosis. Because we're even seeing this emerging discourse where, "Oh well, if you have diabetes-if you have underlying conditions like diabetes and asthma, you're more likely to die of COVID." And it's just like, well, what are the environmental and social conditions that predispose people to diabetes and asthma? Both of these are inflammatory conditions. Both of these are born of environmental exposures. Both of these are also born of-well you can think of, like, poor food environment as also an environmental exposure. 00:15:37 Environmental pollution, environmental racism, racism-related stresses that increase our cortisol levels and disrupt our, you know, our body's ability to function. I heard a metaphor for chronic stress that made a lot of sense. It's like, if you have a car, and you're constantly revving the engine. You're putting stress on the system, and the system will eventually break down. And you can think about our bodies being under, you know, chronic and in constant stress, right? You can think about how that affects our-how we can function as people, as, you know, not just as bodies, but people. So, because that's already the backdrop, it goes back to what was already... how was life distributed already, before the pandemic? 00:16:44 So, now we're seeing people, in a bleak way, saying that people who are sick and disabled, people who are Black, people who are Latinx, people who are already predisposed to poor health outcomes because of social conditions-because, we are already seeing them saying, "These people are less deserving of life. These people should not be given an intervention." And we're-I've already heard of a couple of cases, I don't remember where, where doctors presumptively put a DNR in patient's files. And the idea being that, "Oh, well, this person has, you know, this person's autistic, you know, what quality of life would they have if they, if they have to recover from COVID?" You know, "Well, is the intervention worth it?" And these are the wrong questions. Doctors should not be asking these questions, that's not their job.

00:17:48 Aimi Yeah, for sure. I want to repeat something that you said that was-to me, it's like the central question here, is, "How was life distributed prior to the pandemic?" So, can you say more from your perspective as a health geographer, for people who are maybe, like, not as familiar with ideas about health equity and distribution on the basis of race and disability, and also region and things like that, about how life was distributed prior to the pandemic?

00:18:22 Arrianna Yeah, before the pandemic, we saw what should be pretty damning inequities in health status and healthcare quality and access. At the axes of... you know, assigned race, ethnicity, citizenship status, disability status, even on the basis of where you live. I know there's a-there's a popular refrain in public health circles where, you know, disparity has become this sort of hot buzzword, you know? Where they say, "Oh, your zip code determines your life expectancy." And that's not true. It reflects a sort of ahistorical and sort of mechanistic understanding of the relationship between places and health, and health outcomes. Because when we're talking about zip codes too, we're also talking about postal routes, which don't necessarily reflect neighborhoods, they reflect how one particular arm of the government demarcates space. 00:19:29 It's not the same thing as a neighborhood, it's not the same thing as a place. But, the idea that your zip code determines your life expectancy completely elides all of these underlying structural factors that shape health, you know, health inequities, or that produce health inequities. Like... majority Black zip codes; those are there by design, for the most part. You know, you have this history of red-lining, restrictive covenants and other forms of discrimination housing, that socially sorted people by race, ethnicity, class, in space. So it's like this social sorting in space by design, to maintain a social structure. 00:20:23 A racist-white supremacist, capitalist social structure-white supremacist, capitalist-I guess racist, if you want to make it clear-racist social structure. So, and then along with that, you also have healthcare systems that plan their distribution of the facilities around who lives where. Because healthcare systems, they locate their facilities where there's higher household incomes, generally healthier populations. The term they'll often used is "payer mix". So they want a mix of commercially or privately insured patients, mostly patients who have insurance through their employer, so they're generally working-age people. So there's also a bias against areas that have older populations. 00:21:17 Because Medicare, which covers people over sixty-five in the U.S., has lower reimbursement rates, compared with commercial insurance funds. So, people who are working-age are much more desirable patients-much more desirable patient base for healthcare systems. That's like-that's two examples: housing and healthcare. And then on top of that, where you see there's shortages of healthcare facilities, or, you know, inaccessible healthcare facilities, you also see far fewer grocers that carry healthier foods. And, you know, this is all the just, sort of, compound disadvantage. And so, just imagine, you know, I mean, some of us-many of us listening don't have to imagine. But, you can think about-think it through, you know, these are people who have, who are more predisp-and also I'm going to circle back to the example of racial segregation, racial and ethnic segregation. Racial and ethnic segregation is very closely linked with environmental racism. 00:22:23 So this is where you get, like, the siting of, you know, facility locations for companies in the industry that are known to pollute. You get displacement of landfills or factories or-so, wherever any of these, any number of facilities-or incinerators is a big one, because landfills are becoming full, are nearly full in the United States, so the incinerator industry is becoming a-one way that is going to catch-one industry that's going to actually catch the excess from landfills. So-but those are disproportionately located in Black and Latinx neighborhoods. And that means they're exposed to those, you know, particulate pollution 00:23:13. And that means, you know, worse outcomes, worst respiratory outcomes, asthma, and so forth. 00:23:18 So, we can't talk about health and place, without understanding these historical and socio-political processes that sort people in place by race, ethnicity, class, and also distribute resources in place, relative to where people are. And that's the underlying, sort of-that's the sort of-that's what's patterning the outcomes that we're seeing in terms of this pandemic, too. You know, the people-we're seeing more severe cases in people who have respiratory conditions. We're also seeing more severe cases in places that have histories of environmental racism. We're seeing more severe cases in people who already have chronic conditions, who may have, or may have been, immunocompromised, and that's also associated with environmental racism. 00:24:18 So, like, there's all these ways that the-that place-making, policy, discrimination-You know, these ways that discrimination by group membership, or different-you know, how we are differentiated it on the basis of race, ethnicity, class, disability status. There's all these ways that it's manifesting as worse outcomes amid this pandemic. So, I don't know if that touched-answered the question?

00:24:44 Aimi Yeah, that was perfect, thank you. So, one of the things I'm wondering about too is, in terms of who-like going back to these eugenic ideas-like, whose death is taken for granted, or vulnerability is taken for granted, and whose is treated as, like, not inevitable? And something I've been thinking about a lot, and this goes to something you said very clearly earlier too, is that, you know, this is a case where a lot of people are becoming disabled, if they weren't disabled already. And yet the issue of disability is so decentered, in, like, the analysis, right? So, like, what can you-do you have any thoughts about that?

00:25:30 Arrianna I have lots of thoughts. What I'm seeing is, particularly among healthcare workers, physicians especially, I'm seeing... it's a-it's sort of like two sides of the same coin. One, there's this emerging discourse that treats patients who have COVID, who are maybe asymptomatic, but not-you know, so they may be have been exposed to COVID, or maybe infected with COVID-sorry, SARS-Cov-2, the virus that causes COVID-they may be infected, but they do not have-they do not display the symptoms. And so there's this emerging discourse that treats these patients as a threat to these healthcare workers. But they don't necessarily think it through and think about the facility, the healthcare facility, healthcare system as an eco-system, where some of these people were already disadvantaged and left behind by these healthcare systems. 00:26:34 And two, care provision is a relation-is a relationship. So, our wellbeing is inextricably related. So, you can't just say that patients are a danger to healthcare workers' health. How can-I mean, it goes the other way. The hospital-acquired infections that come from contact with healthcare workers, and because healthcare workers are the common point of contact between everyone in the healthcare facility. So, the idea that patients are a special danger to healthcare workers is self-serving and self-centered. I know some are not going to like that I've said that but.... And then related to that is another discourse I'm seeing, where healthcare workers who contracted the virus and, you know, have now-now recovered from COVID, are telling their stories. 00:27:34 They're telling their stories of having acquired these disabilities, even though they don't name it as a disability. But the story is one of betrayal. Because the idea that physicians-particularly physicians-are not disabled. It's already difficult to enter that profession if you're a disabled person. The idea that, you know... these physicians have acquired this virus, in part, possibly because they are in contact with patients who had the virus, and now they are sick people. Now they inhabit this sick role that they've never really had to think much about as physicians. And now they have to navigate a system that is hostile to sick and disabled people, and now they feel betrayed. 00:28:23 And there's almost this-maybe we're not there yet, but, almost a refusal to recognize their role as physicians in perpetuating that system that punishes or puts more work on sick and disabled people to prove that they're sick and disabled, to prove that they're deserving of, you know, certain social supports. You know, there's this concept of desert-like, you have to deserve the social investment that you-that you draw from. So, I mean that's-I know this is a fairly narrow slice, but this is what-these are two narratives, that, kind of-two sides of the same coin that I've noticed.

00:29:07 Aimi Thank you so much for pointing those out. I've noticed them in a way, but the way that you frame them is really helpful then for also understanding how medical ableism continues to be so pervasive and deadly and harmful, in ways that then bounce back into those structures that we were talking about before, and kind of shore them up. And so, I really hope that people who are listening to this podcast and reading the transcript take that to heart as, you know, this shouldn't be a story that's just about the uncomplicated and unproblematic work of healthcare workers, like in this moment. It really should be about paying attention to the relationships between healthcare systems and people who are put at risk by healthcare systems, and-as a matter of ableism and, like, labor issues, and things like that. So, I'm wondering if we can kind of go in a more hopeful direction. Are there any projects, networks, solidarities, that you want to signal boost, that you think are doing a good job right now, and that could be things to learn from?

00:30:23 Arrianna Yeah, one of my favorite people on the planet, Miriam Kaba. She is-her-on Twitter her handle is @prisonculture. She's been organizing, or at least sort of organizing but also signal boosting a lot of mutual aid projects. And so, like, these involve bail bonds-bail bond funds-bail funds, food-what is it?-food bank funds, housing. So, like, all these different dimensions of how people have been affected in the wake of this pandemic. Because it's not just the virus, it's the job losses, insecurity, you know? Because we're seeing-rather than absorb these uncertainties, we're seeing a lot of institutions just shake off the people who are considered, you know-who are already contingent or otherwise marginalized. 00:31:26 You know, conditionally accepted, even. So, there's a lot of really important mutual aid work that's going on and I would recommend-I've been signal boosting a lot of projects from @prisonculture-or Miriam Kaba's Twitter account, and supporting a few of them myself. But... really it's been really great to see this outpouring of-it was already there, but it's really great to see this outpouring of work in mutual aid, because we are all we have. I mean, if we don't have each other, who has us?

00:32:08 Aimi Yeah, absolutely, thank you for signal boosting that. A few episodes after yours, in this series will be two folks from the Disability Justice Culture Club, who have been doing mutual aid in the Bay area around wildfires, and now around COVID-19, and it really is a moment where, as you say, our interdependence and necessity for interdependence is so highlighted. And we have all these great examples to learn from. Are there any final thoughts that you want to share, anything we haven't covered yet?

00:32:44 Arrianna I think I've talked enough? I mean, thank you so much for having me on your podcast. I mean, you've had some really amazing guests, or co-hosts on your show, so-

00:32:56 Aimi Oh, it's been such a pleasure to have you on, and I'm always just so thrilled by-your analysis is so sharp, and also you do such a good job of synthesizing things in a way that helps make them make more sense, and-I wish I could just, like, record you talking about everything, and then give that as a reading to my students, because it would be-that would be really good. And I'm sure that your students at UNC Chapel Hill, in the coming semesters, will be very excited to have you as a professor too... yeah. Well, that might be a good place for us to wrap up, thanks so much Arrianna, it's been great having you.

00:33:39 Arrianna Thank you.

00:33:39 OUTRO You've been listening to Contra*, a podcast about disability, design justice and the life world. Contra* is a production of the Critical Design Lab, learn more about our projects at mapping-access.com, and be sure to follow us on Twitter and Instagram. If you've enjoyed this episode, please head over to Apple podcasts to subscribe, rate and leave a review. The Contra* podcast is licensed under a Creative Commons attribution, non-commercial, share/like, international three-point-o license. That means you can remix, repost or recycle any of the content, as long as you cite the original source, aren't making money, you don't change the credits, and you share it under the same license.

Transcripts produced by Academic Audio Transcription Ltd (@aat_transcribes on Twitter), by disabled people, for disabled people (and everybody else). Tell us about your transcription or closed caption needs at hello@academicaudiotranscription.com - we'd love to hear from you.

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Solidarity Chat 1: Arrianna Planey - Critical Design Lab

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Dr Arrianna Planey in conversation with Dr Aimi Hamraie [Start of recording] 00:00:09 INTRO [Various overlapping voices] Contra* is friction. Contra* is nuanced. Contra* is transgressive-good trouble. Contra* is questions. Contra* is collaborative. Contra* is a podcast. It's a space for thinking about design critically. Contra* is subversive. Contra* is texture.

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The 100th episode of the Disability Visibility podcast will be published on April 4, 2021, can you believe?!? This episode will feature a conversation with the three co-audio producers of ... Continue Reading Celebrate the 100th episode of the Disability Visibility podcast with us!

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The 100th episode of the Disability Visibility podcast will be published on April 4, 2021, can you believe?!? This episode will feature a conversation with the three co-audio producers of ... Continue Reading Celebrate the 100th episode of the Disability Visibility podcast with us!

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Poetry by T. S. Banks

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T.S. Banks' first book of poems, Call Me Ill, is a feeling archive of what it means to be at the mercy of the medical industrial complex and to be caught up in these interlocking systems of oppression - of race, gender, ability, capitalism - and despite physical and emotional trauma, deadening medications, cultural imperatives to suck it up and tough it out, T somehow maintained both a critical eye and a hunger for joy.

This is the poet, the one who feels all of it (the cries of "too sensitive" come from those ignorant or afraid of this power), the poet who can't help but hold these depths of pain and imperative to love and live - the depths of joy! T gives us all of this. It's "why my smile is so big," he writes. "To know something wrecked can stand again."

The poems now come from a person who, more often than not, lives in his "happy place," who has survived and is thriving but does not move past or leave behind trauma and who is unwilling to edit it out. These poems are alive in their depth - they are fundamentally in their core alive - made up of these times when T felt least human, was most acutely dehumanized. And yet, he doesn't write from the other side of something, from remembering it. He writes it from the inside out, from inside and not beyond his experience.

The book is organized in five parts: When I Knew it Was Time to Go to the Hospital, Waiting Room, the Emergency Room, B6/5 UW Hospital Psych Ward, and When I Came Home. The poems move through rhythmic flashes, details that come into and out of view, sounds and flashes between fear and terror and pills, injections. Details like the plastic bouquet of flowers, like the magenta of the blood pressure cuff, the child in the waiting room whispering.

Hearing his poems is like hearing the newest song, which is also the oldest story. These poems don't tell a universal story. They are situated. The story of someone who is black, trans, queer, and disabled, and who wrote this book because he wants "other Black folx who live with mental wellness challenges to know, we can talk about these things," and to know "it's never too late to try again." He shares his pain in a way that affirms humanity. These poems show a person caught up in a system that produces madness, that pathologizes human experiences, gives diagnoses and pills to people as a remedy for their oppression, calls confinement a form of treatment, makes societal maladies personal.

Call Me ill is, above all, a work of generosity and love, a willingness to share deeply painful experiences so that others may be heard. The title could be read like a command, "Hey, call me ill," like Ill is a name, or like a challenge, "come on, call me ill, I dare you," but in the end, I believe it's more like an invitation, an introduction. A welcome. "Hi, sit down here. You can call me ill. What's your name?" T's writing makes you feel heard when you're the one hearing it. He has this extraordinary ability to write his own very specific experience while also writing the story of black people in the United States, in the medical establishment, and the story of trans people, queer people, people with disabilities, and all of these stories intersecting.

T's triumph in this book is his relentless commitment to tell the truth. It's in his poem "August: Trans* People Murdered in 2017," a list of names. They read like a poem, held like they are in the book. We are surrounded by lists of death and trauma, lists that are a step up from statistics. In these pages, though, this list of names, of trans people murdered, their chosen names like so many beautiful birds, hard-fought beings, triumphant, now gone. Stacked in their brilliant humanity, stacked in their demise. These poems are of T's experience. These trans people are people he didn't get to know, but a poem felt as deeply as the others here, an accumulation of violence and death waiting upon any coming home. These people are not left out or suffered in silence but marked on the page because their lives, and their loss, is wrapped up so tightly with our own. This is in the fabric of T's being - love and deep feeling for human beings - and these poems are a testament to his connection to the world even in times when speech fails.

These poems are full of voices - doctors and nurses and family and God and T - and now, after listening to T read at his release party, they are imprinted in mine the way the truth does when you witness it cutting through the bullshit and sticking with you. I recently heard the poet Jericho Brown talk about how when you read something you love, it feels like someone has given something to you, and you want to give something back - you want to write something back, that's how poetry works. Reading a poem you love is like finding a grandma, he said, an ancestor you didn't know you had. I have not written in months, but when I came home tonight from T's reading, I wrote for hours. I wrote this review. It came out of me like a spilling, or like his work reflected off of my particular mirror. This is what happens when you read something you love. It feeds you, and gives you back your voice, your spirit.

The very last line of the last poem in the book reads, "remind me, I made it."

Remind me, I made it. T, you made it. You made it. And because you did, others will too.
T. will be reading and signing books at the Badger Rock Community Market, 501 E. Badger Rd., on October 1, noon-4 p.m. Copies of Call Me ill are available through T. Banks/Loud and Unchained Theater Co. for $12. They can be reached at lnutheaterco@gmail.com.

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Book Review: "Call Me Ill" a Relentless Commitment to Tell the Truth

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Glitch Feminism: A Manifesto was published by Verso Books in September 2020. The book has been heralded as one of the "best art books of 2020" by The New York Times, "spellbinding" by Artforum, and a "groundbreaking text" by...

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Medicine for stopping.

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Fumbling Towards Repair: A Workbook for Community Accountability Facilitators

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Fumbling Towards Repair: A Workbook for Community Accountability Facilitators

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By Mariame Kaba and Shira Hassan

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Publisher: Project NIA/Just Practice
Format: Book
Binding: pb
Released: June 18, 2019
ISBN-13: 9781939202321

Fumbling Toward Repair is a workbook by Mariame Kaba and Shira Hassan that includes reflection questions, skill assessments, facilitation tips, helpful definitions, activities, and hard-learned lessons intended to support people who have taken on the coordination and facilitation of formal community accountability processes to address interpersonal harm & violence.

Mariame Kaba is the founder and director of Project NIA, a grassroots organization with a vision to end youth incarceration. Mariame is also a co-organizer of the Just Practice Collaborative, a training and mentoring group focused on sustaining a community of practitioners that provide community-based accountability and support structures for all parties involved with incidents and patterns of sexual, domestic, relationship, and intimate community violence. Her writing has appeared in numerous publications including The Nation Magazine, The Guardian, The Washington Post, In These Times, Teen Vogue, The New Inquiry and more. Mariame uses her extensive experience with issues of racial, gender and transformative justice to catalyze various projects.

Shira Hassan is the former executive director of the Young Women's Empowerment Project, an organizing and grassroots movement building project led by and for young people of color that have current or former experience in the sex trade and street economies. A lifelong harm reductionist and prison abolitionist, Shira has been working on community accountability for nearly 25 years and has helped young people of color start their own organizing projects across the country. Shira's work has been discussed on National Public Radio, The New York Times, The Nation, In These Times, Bill Moyers, Scarleteen, Everyday Feminism, Bitch Media, TruthOut and Colorlines.

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A workbook that includes reflection questions, skill assessments, facilitation tips, helpful definitions, activities, and hard-learned lessons intended to support people who have taken on the coordination and facilitation of formal community accountability processes to address interpersonal harm and violence.

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Constructing the Modern Midwife: White Supremacy & White Feminism Collide

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Constructing the Modern Midwife: White Supremacy & White Feminism Collide

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By P. MIMI NILES, and  MICHELLE DREW • October 22, 2020

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Constructing the Modern American Midwife: White Supremacy and White Feminism Collide

By P. Mimi Niles, and Michelle Drew *

The year 2020 marks one of those global tipping points - time divided into pre-COVID and the promise of after COVID, as well as open rallying cries to topple white patriarchal supremacy. Serendipitously, it also marks the Year of the Nurse and the Midwife, per the World Health Organization. We were excited: as two practicing, politically radical midwives of color, this was going to be our year when the world would celebrate, honor, and uplift our work in meeting the essential needs of people all over the world. And then in May, following the death of George Floyd, the fire of civil unrest and collective action and protest around racial injustices was lit. It was the perfect reckoning point for us to look "Beyond Florence." We want to share with you the story of American midwifery and disrupt the narratives of some of our "statues," long-standing symbols of what is now an extremely white female profession.

US exceptionalism in maternity care is marked by the lack of midwives as primary providers. Out of 100 births, only 10 to 12 will be attended by a midwife - and 9 out of 10 of these midwives are white. Yet globally, most childbearing women are attended to by midwives, only turning to an obstetrician if serious complications arise. According to WHO and The Lancet, midwives could help avert roughly two-thirds of all maternal and newborn deaths, while providing 87% of all essential sexual, reproductive, and maternal health services. Midwifery is one of the most ancient of traditions and professions in the world, with roots that can be traced back to the healing traditions of Babylonia, Egypt, Ancient Greece, Vedic India, and the Aztecs. How has this essential role been so obliterated with barely a peep from feminists claiming reproductive liberation and rejecting male domination, pink pussy hats and all? How did we lose our way in this long-standing battle to keep the patriarchy out of our pregnant uteruses? And why is American midwifery so white?

For most of early American history, midwives attended all births, many learning the tradition as apprentices or inheriting a gift for healing and earth-based remedies. For enslaved African women, the traditions of midwifery traveled with them, as birth was considered the domain and realm of women midwives as community healers. In fact, obstetrics was not taught in most medical schools. However, as the business of medicine grew in the 1800s, physicians began to stake a claim. Childbirth was lucrative - a chance to make money while experimenting with emerging technologies like forceps, episiotomies, and surgery.

Coupled with the creeping privatization of American health was the near obliteration of birthing at home. Part of this was the growing narrative that birth was risky, needing constant vigilance for medical interventions. Bringing birth into the hospital was business strategy 101: bring the customer to you, manage more than one labor at time, centralize care, and create a medical birth monopoly completely controlled by male obstetricians.

In the early 1900s, close to 50% of births were attended by midwives, with a much higher percentage of Black births attended by Black midwives. These midwives served their communities diligently, providing care for generations of families - and white plantation owners too. The campaign to rid communities of these Black healers was mired in racist tropes (uneducated, dirty, poor, feeble) and threats of being prosecuted for "practicing without a license." Meanwhile, a report on medical education in America demonstrated that obstetricians were among the most poorly trained physicians, contributing to maternal and infant mortality. But the professionalizing project of medicine in the US resulted in rigid laws, regulations, and procedures and concurrently the overmedicalization of birth. In order to address the "midwife problem," public health nurses were dispatched by order of public health directors - male physicians - to regulate, limit, and surveil these Black "granny" midwives.

The passage of the 19th Amendment was a tipping point, instantly doubling the voting population. In an effort to appease these new voters, Congress developed the Promotion of the Welfare and Hygiene of Maternity and Infancy Act, more commonly known as the Sheppard-Towner Act (1921). Senator Morris Sheppard, the erstwhile father of the Prohibition Act, and Representative Horace Mann Towner proposed and passed legislation that would address the terrible infant mortality by developing a federally-funded public health workforce. They adopted the narrative set by obstetricians that it was midwives, mostly Black, with limited education (ignorant), and poor hygiene (dirty) who were culpable for the high death rate. The twin arms of white supremacy - anti-Black racism and xenophobia - convinced Black women and northern immigrants that midwives were to be bypassed and that a responsible mother would seek out the care of white male physicians, the new arbiters of medical science and experts on the disease of pregnancy.

One direct result of the Sheppard-Towner Act was the creation of a white public health nurse workforce that became the genesis of the modern nurse-midwife. They provided care that was neither culturally congruent nor women-centered, while supervising Black and immigrant midwives on the proper techniques of care. These same white nurse-midwives also became the cudgel that would control, suppress, and eliminate the Black, Indigenous, and immigrant midwifery workforce from 1920 to 1945, both as teachers and as state agents of legal and regulatory enforcement. By this time, only 15% of births were attended by midwives, down 35% from only decades earlier.

That brings us to the "Florence" of nurse-midwifery in the US, Mary Breckinridge. A child of a large, prominent, socially elite, and wealthy southern segregationist family, and granddaughter of a former vice president of the United States, Breckinridge started a demonstration project in 1925 to prove that the midwifery model of care could increase child survival in rural Appalachia. Also a white supremacist and eugenicist, Breckinridge believed that the people of Appalachia were "pure" Americans, descended from Anglo-Saxons, of superior breeding stock needed to grow a feeder population. In 1940, Breckinridge started the Frontier Nursing Service (FNS), an education program that didn't admit a single Black nurse until her death in 1965. Even Black women in the service area of FNS did not receive care from the all-white workforce of nurse-midwives on horseback. FNS nurse-midwives denounced the work of the local granny midwives as a way to uplift their own professional status, while systematically replacing them as the region's birth attendants. The school lives on and is one of the largest nurse-midwifery schools in the country.

In New York, the Lobenstein Clinic and Maternity Center Association (MCA) launched the first US nurse-midwifery education program in 1932. Founded by a group of influential white women, MCA trained hundreds of nurses to become nurse-midwives to work in hospital maternity services to meet the demand of the baby boom. In its first twenty years, only eight Black nurses received midwifery training. Black midwives in the southern United States were publicly characterized as "unsanitary and superstitious," in contrast to the well-trained midwives of Bellevue hospital, who were of European descent. For twenty years, midwifery remained in the control of nursing programs, a reality that continues today.

With the growth of the second wave of white feminism and women's liberation in the early 1970s, newfound interest in midwifery emerged, with sexual and reproductive freedom as part of its ethos. Though hyperfocused on abortion and contraception, this new movement of self-taught mostly white women, created a renewed image of birth, intentionally distancing themselves from the medical establishment that also shunned nursing. There was little acknowledgment of the ancient, expert, and holistic practices of Black, Indigenous, and immigrant healers that birthed nearly twenty generations of Americans of all ethnicities - with midwives like Onnie Lee Logan, Margaret Charles Smith, Mary Francis Hill Coley, and the few Black nurses who overcame the obstacles white supremacy put in place to become nurse-midwives like Maude Callen.

These years of systemic exclusion resulted in the midwifery workforce and midwifery education of today. Of the thirty-nine graduate programs that train certified midwives and nurse-midwives, only two have Black program directors - one permanent and one interim. In 2020, Commonsense Childbirth School of Midwifery founded by Jennie Joseph, a British-trained midwife, was the first certified professional midwife (CPM) education program in the US to be led by a Black woman.

So the question in a country whose foundations remain rooted in white supremacy is whether midwives are ready for a reckoning. Can midwifery uproot themselves from its ties to misogyny and white supremacy in a workforce that currently identifies as 90% white, in a population that has increased from only 150 in 1955 to 12,000 today? If midwifery is to thrive into another century in the United States - in the midst of a deeply racialized maternal health crisis, where Black women are three to four times more likely to die in a childbearing complication - then we need to start looking for a way to invest and support the growth of Black, Indigenous, and immigrant midwives of color to reclaim the legacy of midwifery that existed well before Mary and Florence.

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Constructing the Modern American Midwife: White Supremacy and White Feminism Collide

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The year 2020 marks one of those global tipping points - time divided into pre-COVID and the promise of after COVID, as well as open rallying cries to topple white patriarchal supremacy. Serendipit...

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Person-directed support for aging-in-place

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Eighty-three-year-old Betty Givens welcomes two visitors to the home she shares with her daughter in Riverside, Calif.

"Hi, how are you?" asks Melinda Underwood, an occupational therapist.

"Oh, a little lightheaded," Givens says, almost apologetically.

Underwood and clinical social worker JoJean Harper are concerned, but it's one of many things they can address that will help Givens remain in her home as long as possible.

Underwood and Harper are from a program called CAPABLE: Community Aging in Place - Advancing Better Living for Elders. Givens, like the vast majority of older Americans, wants to age in her own home. The CAPABLE program tries to make that happen.

Sometimes it gets hard for older people to do the things that make independent living possible, such as cook a meal or get in and out of the bath. So CAPABLE targets these obstacles, not just with therapy for the individual, but with some TLC for the home.

For example, during the visit, Underwood explores Givens' home to identify the physical challenges it presents, including making sure the kitchen is functional and that it's not too dangerous for Givens to use the two large steps leading to the laundry.

This is Underwood's third visit, so she's well aware of Givens' challenges.

"Her back starts to bother her when she walks too far," says Underwood. Givens is a Jehovah's Witness, so "she likes to go around to people's houses with other members of the church and that's something that she's kind of limited in lately because she can't walk very far."

In the CAPABLE program, older adults set their own goals, and Givens' goal is no surprise - to walk better. She lives up a steep driveway, so even going to get the mail has become an extreme sport.

"It's as hard going down as coming up," Givens says. "I've never fallen, but [I'm] kind of wobbly."

This is where CAPABLE can make a difference, by both treating Givens' medical issues and transforming her environment. Underwood suggests that Givens needs a railing installed along the driveway so she has something to hold on to. She goes out to take measurements so she can get a quote from a handyman.

Meanwhile, clinical social worker Harper discusses ways that Givens can improve her diet and manage her pain. Harper will also do some strengthening exercises with Givens so that when the railing is installed, Givens is strong enough to use it.

It's rare for a health care plan to include home repair. Sarah Szanton, a professor at Johns Hopkins University's School of Nursing, got the idea for CAPABLE when she was a nurse practitioner treating homebound seniors more than a decade ago.

"I had a 101-year-old patient who got around her apartment in a wheelchair," recalls Szanton, "and the doorway to the kitchen was too narrow to get into her kitchen with the wheelchair. And at 101 she had to get onto her knees to get into her kitchen."

Another patient of Szanton's back then would throw Szanton the keys from a second-story window because she couldn't get down the stairs to open the door. Another would crawl to the door to let Szanton in.

"I was looking at their diseases, like diabetes, heart failure, arthritis," says Szanton, "and I realized we needed to do something more to help older adults age independently at home."

Today there are 29 CAPABLE programs in 15 states. Some are offered by private insurance Medicare Advantage plans, like the one that Givens has. Others are run by Meals on Wheels, Habitat for Humanity or local aging organizations. In most programs, an occupational therapist and a nurse make home visits over four months. Depending on the patient's goals, they figure out what home improvements are needed. Szanton says that while the programs differ slightly from place to place, studies show that CAPABLE makes a difference.

For example, one study showed that the number of difficulties patients had with the activities of daily life were cut in half. "So they go from not being able to bathe to being able to bathe or not being able to get dressed to be able to get dressed," says Szanton.

CAPABLE is also cost-effective.

"Evaluators for the government have found that it saves $22,000 on average per person, and it only costs [per patient] $3,000."

"CAPABLE is a great example of a proposal that is very creative," says Len Nichols, a health care economist at George Mason University. "A lot of stuff outside the normal medical sphere affects health and ultimately [affects] cost," he explains.

Nichols was until recently a member of a committee that makes recommendations to Medicare on new ways of offering services and new ways of paying for them. The committee evaluated CAPABLE last spring, "and we all were unanimous in supporting it going forward," says Nichols.

That's no guarantee that Medicare will someday pay for services like CAPABLE, though it would make them easier for older adults to access.

But right now, Givens is convinced it's going to work for her "with the help of the girls coming. This is motivating to me," she says.

So if you live in Riverside, Givens and her church friends may be ringing your doorbell someday soon.

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Program Offers TLC To Older Adults And Their Homes So They Can Stay Put

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Eighty-three-year-old Betty Givens welcomes two visitors to the home she shares with her daughter in Riverside, Calif. "Hi, how are you?" asks Melinda Underwood, an occupational therapist. "Oh, a little lightheaded," Givens says, almost apologetically. Underwood and clinical social worker JoJean Harper are concerned, but it's one of many things they can address that will help Givens remain in her home as long as possible.

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by Sara Ahmed, Author of the Feminist Killjoy blog

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Webinar | Courageous Conversations: Complaint, Diversity and Other Hostile Environments

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Significant pain and trauma during pelvic care like Pap smears is not & should never be "normal". Care requires continuing consent.

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[Correction added on December 7, 2020: The spelling of the name Em Rabelais was corrected in the Acknowledgements section.]

Abstract

Consent is a clear dialogue between individuals to engage in a specific activity. Expectations for consent to intimate examinations in health care should be equal to, if not exceed, expectations for intimate interactions in society. In reality, current definitions of consent in health care vary. These blurry definitions lead to individualized interpretation, incomplete fulfillment, and opportunities for misunderstanding by both patient and health care provider. If a patient does not believe they have consented to an examination or procedure, they are likely to rightfully identify with one of consent's antonyms, assault. Within the field of gynecology, a history of misogyny, racism, and classism illuminates abhorrent contexts of assault disguised as care. Similar practices persist in the modern application of pelvic care, ranging from overt sexual assault to coercion disguised as guidance. Health care providers and students who seek to improve consent practices can look to evidence‐based frameworks such as trauma‐informed care and shared decision making, both of which are embraced widely by professional organizations. These approaches often take precedence during the first pelvic examination; care for people who are lesbian, bisexual, queer, transgender, or nonbinary; and care for anyone with a known history of sexual assault; they can be easily extrapolated to all intimate examinations. Beyond obtaining consent for the examination itself, health care providers must also intentionally obtain consent to include students in care and openly discuss new universal recommendations for chaperone presence. Scripting for common procedures, such as bimanual examinations for pelvic care or cervical examinations in labor, allows health care providers to practice trauma‐informed language, include evidence‐based guidance, and avoid unintentional bias. Contemporary providers of intimate pelvic care must work to understand and strengthen the definition of consent and ensure its realization in practice.

"The pelvic offers a fascinating window into the dynamics of the relationship between doctors and patients, as well as the blurred boundaries between sexuality and medicine. Though the procedure itself is routinely performed on healthy women in a supposedly sterile environment divorced from outside context, it is in reality loaded with context and meaning."

Wendy Kline, Bodies of Knowledge: Sexuality, Reproduction, and Women's Health in the Second Wave

INTRODUCTION

Definitions of consent in health care vary across sources and organizations, and subsequently implementation depends on the health care provider. This individualized application creates opportunities for unintentional misunderstandings between provider and patient, space for coercion disguised as consent, and experiences of assault within the health care setting. Nuances and assurance of consent are especially important in pelvic care and care of sexual and reproductive anatomy. Consent is a concept mirrored across intimate personal lives and intimate examinations, and the same language in both spaces stresses its analogous importance in both experiences for patients: in both circumstances, consent implies an intention to do no harm. Expectations for consent in health care settings should be parallel to, if not exceed those of, expectations in society, where the hierarchical knowledge and power of health care providers over patients must be addressed for consent to be informed and freely given. This higher burden is especially applicable for patients who are not cisgender men: namely, cisgender and transgender women, transgender men, and gender nonbinary people, given similarly experienced intersections of power and bodily autonomy across other social institutions. (This review uses the gender‐inclusive terms person and patient, given that people of all bodies and identities access pelvic care. Quoted resources maintain language of the original version).

In health care settings, actions that would be considered coercion or assault in social settings are often erroneously labeled as clinically or medico‐legally rational. The actions are, however, equivalent from the standpoint of a definition of consent: if someone does not consent to something, the actions against them constitute assault. Because health care providers and institutions apply ambiguous definitions of consent in health care, it is ethically challenging to ensure that complete and informed consent is obtained consistently in practice. Vague terminology can lead to inconsistent implementation and risk for assault, or the experience of assault, within the health care setting. Ultimately the onus of ethical informed consent rests on the health care provider, as the more powerful entity in the interaction, and the person seeking consent. For the well‐being of patients entrusting providers with pelvic care needs, consent must be held to the highest standard.

HISTORICAL AND CONTEMPORARY CONTEXT

In order to holistically consider current experiences of gynecologic health care consumers, health care providers must acknowledge the profession's historical origins. The field of gynecology built its foundation on assault and nonconsent, beginning with forced examinations and nonanesthetized surgical experiments on enslaved people wholly unable to decline. This occurred as white men, in designing modern medicine,

QUICK POINTS

✦ Consent is a process that equalizes the ability to respond either yes or no.

✦ The reasonable patient standard, shared decision making, and trauma‐informed frameworks are emerging as standards of care for informed consent.

✦ Pelvic health care mirrors people's consensual and forced sexual experiences: when providing clinical care, health care providers must intentionally choose language and approach during consent processes and examinations to decrease iatrogenic trauma and lessen the risk of triggering past trauma.

✦ If someone declines recommended care, further attempts by the health care provider to obtain acquiescence are coercion unless a new consent process is initiated because of change in clinical circumstances.

✦ Chaperones are recommended in all health care settings for all intimate examinations regardless of the health care provider's sex or gender identity.

destabilized historical knowledge held by Indigenous and Black healers. The context of forced and nonconsensual pelvic care continued into the 20th century with practices of quarantining and forcing internal examinations on people suspected of venereal infections, sterilizing people of color and people who were poor without their knowledge, unnecessarily requiring pelvic examinations for oral contraceptives, and hymen inspection for virginity testing. Examples persist in current practice, including medical students performing covert pelvic examinations on patients under anesthesia without their explicit consent, decades of abuse by Larry Nassar, and fear of retribution when declining care recommendations.

People's current lived experiences also affect their interactions in health care spaces. Outside of health care, issues of consent and safety are nonexistent or not able to be assumed for all people across similar social institutions. Examples include inadequate investigation into sexual assaults on college campuses or within religious communities; lack of political and legal support for queer, transgender, and nonbinary people in their struggle to find restrooms; limited or no accountability for politicians who admit to sexual assault, including of minors; and documented rape of migrant people seeking refuge or asylum. One out of every 6 American women reports an attempted or completed rape in their lifetime, with many more attacks going unreported to authorities or dismissed by the survivor as not meeting criteria for assault because of rape culture myths.

Thus, people's own expectations of safety in health care cannot be assumed, as safety has not been the historical context in gynecology, is not currently the societal context in similar social institutions, and is not, even now, guaranteed within health care. This is all despite, in spite of, and beyond the reach of the health care provider's best intentions to create safe spaces. Given the implications of people's lived experiences of consent and safety prior to engaging in health care, especially in intimate circumstances, the process for ensuring informed and active consent in pelvic care must be transparent.

CONSENT IN HEALTH CARE

Consentis defined as a "process of communication between a clinician and a patient that results in the patient's authorization or agreement to undergo a specific medical intervention." The simplicity of this definition carries significant weight in health care settings, where situational power, unequal knowledge, and a patient's own potentially traumatic experiences as a health care consumer elevate the importance of the process. Informed consent in health care is both a legal and ethical framework through which patients receive information and ask questions to lead to a decision about their care. The above broad definition reflects the 4 common pillars of medical ethics: autonomy, or freedom of choice and bodily integrity; justice, or equal application across all people; beneficence, or acting in the person's best interests; and nonmaleficence, or doing no harm.

Professional Standards

This definition and the 4 ethical pillars are reflected in contemporary documents developed to guide pelvic care providers. The Joint Commission highlights that informed consent is an ongoing process, not merely a signature on a form. The American College of Nurse‐Midwives' (ACNM) Hallmarks of Midwifery Practice highlights "advocacy for informed choice, shared decision making, and the right to self determination." Within the midwifery Code of Ethics, key concepts for informed consent are (1) disclosure of information, including risks, benefits, and care options; (2) clarification that the patient understands that information; and (3) assurance of the voluntary nature of the consent. The midwifery Code of Ethics also details various individual circumstances that might affect the voluntary component of the consent process, such as health insurance status, income, privacy, limited access to other health care providers, and relationship safety. The American College of Obstetricians and Gynecologists' (ACOG) Code of Ethics also reflects the above, as well as the importance of presenting medical facts and recommendations "in reasonably understandable terms and include alternative modes of treatment and the objectives, risks, benefits, possible complications, and anticipated results of such treatment."

ACNM and ACOG both use the term shared decision making interchangeably with informed consent. The ACNM Position Statement "Shared Decision Making in Midwifery Care" emphasizes patients as authoritative decision makers, uplifts the importance of effective communication between patients and health care providers, and "maintains right to informed refusal." The ACOG Committee Opinion "Informed Consent" similarly reflects on the "moral right to bodily integrity, to self‐determination... and freedom to make decisions within caring relationships." A separate ACOG resource details that shared decision making occurs when "decisions about interventions should incorporate the woman's personal values and preferences and should be made only after she has enough information to make an informed choice." Both organizations highlight the importance of consumers' active involvement in their health care decision making and are similar in themes and approaches.

Health care provider practice is guided by the concept of standard of care, or what a reasonable provider would do in a similar circumstance. This concept aligns with the traditional informed consent model of a reasonable provider standard, or what a reasonable provider would share as part of the consent process in the same situation. In shifting power to shared decision making, the model also shifts toward a reasonable patient standard, or what a reasonable patient would need to know to make an informed decision. The reasonable patient standard is emerging as standard of care and in many ways overlaps with the more broadly known shared decision‐making model. Because the patient themselves would define their own parameters of a reasonable patient, this transition to a reasonable patient standard highlights the responsibility of health care providers to individualize the consent process and consider the patient holistically within cultural contexts and contemporary identities. For pelvic care, this specifically applies to sex and gender identities and requires all health care providers in practice to understand how a unique person's identities and experiences broaden expectations of what should be disclosed, how to disclose it, how to ensure comprehension, and how explicit the consent should be.

Consensus across organizational and ethical resources is that a complete process of consent requires disclosing the information that a reasonable provider would share and/or a reasonable patient would want to know, and that the information be tailored to the patient's literacy and numeracy levels, in the patient's preferred language, and through the patient's preferred delivery system, whether verbal or through decisional aids or interactive models. The process should be free from coercion by the health care provider or the patient's family and documented completely in the health record. (Table 1).

Disclose the information that a reasonable provider would share and/or a reasonable patient would want to know in a similar situation, including the following:

diagnosis or condition prompting the recommendation or treatment

benefits, and probability that the treatment will succeed

risks and complications

available alternatives, and their risks and benefits

possible consequences of forgoing treatment

Share information through the patient's preferred delivery system: verbal communication, decision aids, surveys, checklists, or interactive online models

Ensure the decision can be made free from bias or coercion by the health care provider or the patient's family

Document all processes of consent, including information shared and the patient's questions and answers, in the clinical record

Power Dynamics

The sensitive nature of intimate pelvic examinations calls for an understanding of not only recommendations for informed consent but also the power imbalances between patients and health care providers, which often mimic power imbalances in assault outside of health care. Health care providers, who hold power and knowledge, are tasked with obtaining consent; patients, who by nature of power dynamics in health care are disempowered in both knowledge and role, are tasked with consenting. Overlapping patient‐provider discordances of race, sex or gender identity and expression, language, educational status, disability, and class further highlight the imbalance. Although trust in health care providers or deference to authority may guide decision making when patients are otherwise neutral or unsure, 2 validated indicators of respectful care are a patient's comfort in declining care and lack of coercion in decision making. If a patient requests the health care provider's recommendation and the counsel given supports ongoing consent processes and continues shared decision making, free from coercion or provider bias, then such guidance still aligns with consent.

Critically important to the process of obtaining consent is equalizing the patient's ability to say yes or to say no. If a health care provider simply expects a patient's acquiescence to the recommended plan, true informed consent does not happen. Patients must be explicitly informed of their right to refusal. Informed refusal is in fact a corollary of informed consent, and health care providers must anticipate and respect both outcomes. Documenting that someone declines or decides against, rather than refuses, care may be a word choice more indicative of respect for the patient's decisional authority and may be better perceived by patients when accessing their own health records. Nonetheless, patients who wish to decline a recommendation may be acutely aware of the provider's negative feelings or concerned it will change the therapeutic relationship. Health care providers must thus consider their tone and language when a patient declines a recommendation in order to maintain shared power in the therapeutic relationship. Providers should embrace the consent process as an opportunity for patients to take control of their own care and be empowered within the patient‐provider relationship.

Directed Counseling, Coercion, and Force

Consent by any other name is not consent. Any attempt by health care providers to indicate a preferred approach or desired outcome, defined interchangeably across resources as nudging, directed counseling, pressure persuasion, or forced compliance, cannot by definition be consent, as the sway of the provider cannot supersede a patient's decisional authority. If a health care provider weaves their own preferences into recommendations in an effort to guide patients toward a decision that the provider determines best for their welfare, that is not consent. Such tactics are not free from bias and may be ethically congruent with coercion. Although coercion is often defined as involving threat or force, a fine line exists between consent and coercion that can be crossed in practical implementation, especially in emergency circumstances when decisions need to be made quickly (Table 2). Importantly, ACOG asserts that "pregnancy is not an exception to the principle that a decisionally capable patient has the right to refuse treatment, even treatment needed to maintain life." The legal or liability implications of a patient's right to decline recommended care, even when there are emergent risks to the well‐being of themselves or their fetus, conflicts with standard medical obligations, or affronts to the health care provider's personal values, are outside of the scope of this article and are covered elsewhere.

INTIMACY OF PELVIC CARE

Clinicians maintain a clinical environment in pelvic care by modifying language and palpation to avoid any parallels with sexual intimacy. This acknowledges the lived proximity of a pelvic examination to the patient's experience of physical intimacy and sexuality. Health care providers must recognize that some patients view pelvic examinations as an experience they would define as intimate. Negative experiences during pelvic examinations may lead patients to delay or avoid future care, which ultimately eliminates any health benefits of gynecologic care. Thus, "engaging patients in the decision‐making process can improve patients' comfort with intimate touch."

The Trauma‐Informed Framework

Trauma‐informed care, the standard of care for all sexual assault survivors, is now considered the standard for all health care and especially for intimate examinations, given that patients may not disclose an assault history or identify previous health care examinations as traumatic. This evidence‐based framework assumes that all people have experienced trauma, may be currently experiencing it, or will experience it in the future. It embraces the range of effects that trauma may have on one's physical and mental health and guides tone, approach, response, and process at both individual and organizational levels. Health care providers may already consider trauma‐informed care consent processes as uniquely relevant in scenarios like the first pelvic examination, care for sexual assault survivors, and care for patients of diverse sexual orientation and gender identities. The Engage, Motivate, Protect, Organize, Self‐Worth, Educate, Respect (EMPOWER) Clinic for survivors of sex trafficking and sexual violence in New York details a thorough approach to trauma‐informed health care, which can be easily extrapolated to empower and engage all patients regardless of disclosed history.

First Pelvic Examination

Acceptance of pelvic care as central to sexual and reproductive health care may lead to assumptions about what is normal or expected; this was seen in the assaults by Larry Nassar. The first pelvic examination establishes long‐term understanding of what the examination entails and imprints experiences on gynecologic health care going forward. Health care providers must take careful steps to obtain consent for the first pelvic examination, including clear discussion about each step, how to notify the provider of discomfort or how to rescind consent, and explanation that the examination is not mandatory. Providers should be attuned to power transfer throughout, reminding the patient that the examination can stop at any point and ensuring that the patient is in control. The first pelvic examination also serves as a learning opportunity to discuss when different examination components may be appropriate or recommended, including the purposes of external visual examination, internal speculum visualization, and bimanual palpation: differentiation of each step allows informed consent, and informed refusal, as necessary.

History of Sexual Assault

A known history of sexual trauma, regardless of the type of assault, compels health care providers to modify the approach to pelvic care. The experience of the assault itself and subsequent pelvic examinations can intertwine in the survivor's memories. Avoiding common verbiage that mimics sexual innuendo or common assault language, such as "spread your legs wide" or "just relax," decreases possible misinterpretation of the pelvic care provider as partner or assailant and maintains a supportive clinical environment. Individualized accommodations, such as deferring portions of an examination, giving anticipatory guidance on possible sensations like pressure or temperature, and stepwise consent processes, are also sensitive components of care for survivors. Health care providers staying attentive to and supportive of effective coping mechanisms, such as distraction with music or social media and deep breathing techniques, can facilitate patient resilience during difficult examinations.

Lesbian, Gay, Bisexual, Queer, Transgender, and Nonbinary Communities

Any recommendation for pelvic care that includes insertion of a speculum or test swabs or evaluation by bimanual examination must take into consideration the patient's intimate lived experience. Lesbian, gay, bisexual, transgender, and nonbinary people are more likely than their cisgender or cisgender heterosexual counterparts to never have, or vary engagement in, penetrative intercourse. Pelvic health care may be the only time someone experiences something inserted into their vagina or rectum, thus exponentially increasing the sensitivity and physical intimacy, or trauma, of the examination for that individual. In addition, it is important to recognize that a history of sexual assault is higher in queer communities, compounding the need for deliberate trauma‐informed care. Finally, transgender and nonbinary individuals may have language for their bodies that differs from medically gendered language. Health care providers should inquire about the individual's anatomical language and use this in consent processes as well as during the examination itself.

Consenting Beyond the Examination Itself: Chaperones and Students

Chaperones

Even with all guidelines for informed consent and shared decision making in place, patients may misinterpret or experience appropriate health care through traumatic lenses. ACOG now recommends the presence of chaperones for all breast or chest, genital, and rectal examinations; this is irrespective of the sex or gender of the person performing the examination and includes all examinations performed in outpatient and inpatient settings, including labor and birth units, as well as during diagnostic studies such as transvaginal ultrasonography. These recommendations occur in the context of significant publicity surrounding Larry Nassar's sexual assault of patients, as well as with increased reporting and disclosure of misconduct among nurses and physicians. Chaperones are medical staff trained in clinical best practices and patient privacy, are able to identify misconduct, and have an immediate uncensored pathway to report concerns. Because of these criteria, friends and family of the patient, trainees, and students cannot serve as chaperones, although at the patient's discretion they can be present as advocates or support people. Patients should receive anticipatory guidance regarding the new standard for the presence of chaperones to ensure consensual and appropriate pelvic care; however, they can decline chaperone presence as part of their consent process, and health care providers can then document this decision in the chart.

Students

Clinical education programs must provide structured content around ethics and consent in the context of gynecologic care. Two recently published textbooks offer specific guidance about consent and trauma‐informed gynecologic care and are relevant for all learners who will provide pelvic care. Standard curricula around bioethics and medical ethics can be designed to evolve based on student‐identified concerns; this allows opportunities for incoming generations of health care providers to affect the contemporary ethics discourse. Patients must give consent for student involvement as well as receive anticipatory guidance regarding what the student's role will entail: what type of student will be involved in the care, how many students will be present, their capabilities, how many examinations will be performed if the student is involved, and whether the preceptor or attending health care provider will be present at the same time. On that theme, patients should be fully permitted to decline student involvement even in educational institutions: presence within a teaching facility is not explicit consent for student involvement, as even in this case the assumption of consent in any capacity does not meet the definition of consent as a standalone concept. Furthermore, not all patients may understand that they are seeking care in a teaching facility, so transparency as to student involvement must be the standard. Preceptors and attending physicians must prioritize patient consent and care over student learning. This models respect for patient autonomy and decision making by specifically seeking informed consent for the care process as well as the student's involvement. Unfortunately, failure to appreciate this is reflected in the continuation of unconsented pelvic examinations on patients under anesthesia. Every few years a medical student publishes a report of being pressured by attending or resident physicians to perform covert bimanual examinations on patients under anesthesia, without the patient's explicit consent, for the student's learning benefit. These reports fail to detail if patients are notified of the examinations when awakened from surgery, if they ever question the presence of medical gel intravaginally, or if they express a sense of penetration. These reports substantiate patient's own accounts of the same. Such violations parallel drugged rape experiences and rightfully compromise trust of gynecologic care providers. ACOG specifically mandates consent for these examinations.

CLINICAL CONTEXT

Informed consent and shared decision making not only seek to equalize the patient as an active participant in their health care experience but also aim to eliminate experiences of misunderstanding, mistreatment, assault, and abuse. Health care providers must take the time to reconcile aspects of their practice that diverge from what was and continues to be the informed consent process in order to eliminate a patient's experience of abuse within health care settings. Examining common clinical intimate examinations such as the annual pelvic examination or routine cervical examinations in labor provides an opportunity for providers to reflect on their typical consent process. Both scenarios cut across the nexus of patient experience, provider preference, institutional norms, and evidence‐based practice as part of consent processes. Every health care provider has their own opinion about whether an annual pelvic examination is needed or how often cervical examinations should be done during labor. Common language used in each scenario can illuminate areas for improvement in these cases and across all health care consent processes (Table 3).

Consent and the annual pelvic examination

Nudging, directed counseling

Health care provider preference for routine annual pelvic examination in asymptomatic people

"I would prefer to do the exam because in my clinical experience..."

"What I would want my daughter, mother, spouse, or friend to choose..."

"Given the evidence, having a pelvic exam is your decision. We can defer the exam until the point in time when you might notice a symptom, or can start with an external exam or a speculum exam, and depending on what is visualized we can discuss whether an internal exam is needed."

Coercion

After completing counseling and informed consent, if the patient says "No," the health care provider continues to ask for consent with no change in clinical circumstance

"I hear you saying no, but want I want to emphasize is..."

"Okay but that means I cannot provide contraception, referrals, or testing today."

Complete consent with all risks and benefits the first time. Discuss during this first consent process that if clinical circumstances change, you will be revisiting the conversation as risks and benefits change. Do not bring up risks for the first time, or emphasize them repeatedly, after a "no" as part of working toward obtaining a "yes."

Force, assault

Patient consents to one part of the examination, like an external or speculum examination, and health care provider proceeds with internal bimanual examination or rectal examination

"I know you said no before but now what I'm seeing leads me to continue the next step as your provider so I am going to start that now."

"It is my job to make decisions in your best interest so I am going to proceed with the next step in the exam."

Only proceed with portions of examination that patient has explicitly consented to, while all other parts of consent process are being met.

If clinical scenario changes and health care provider finds need for further examination, restart the consent process before moving forward.

Consent and cervical examinations in labor

Nudging, directed counseling

Patient questions the need for an examination

"This is what we do for everyone."

"How else will we know if labor is progressing?"

"Often we check the cervix every few hours in labor, just to see how labor is progressing..." Then start the consent process outlined above.

Coercion

Cervical examination is needed, health care provider completes consent process, and patient declines

"So I hear you declining, but what I want to emphasize is..."

"I have to do this, or your baby will die."

"Trust me, I know what's best."

Ensure all risks and benefits were included in the first consent process, not added on at the end. Then ask when it is okay to revisit the conversation.

Force, assault

Patient asks for cervical examination to stop, and health care provider is almost done

Starting a cervical examination without explicitly obtaining consent

"You're doing great."

"Just another second."

"Almost finished."

"I am doing this for you."

"You will thank me later."

"I just need to check."

Stop the examination immediately. The patient rescinded consent.

Never start any examination without the patient's consent.

Evidence recommending against the screening pelvic examination in asymptomatic patients is still very new for patients and health care providers. Both patients accustomed to an annual external or internal examination and health care providers who may continue their preferred practice despite the evidence may struggle or disagree with possible changes to practice. Shared decision making is the posited standard of care, especially in such a circumstance when perhaps no perfect answer exists and when the decision regarding a plan of care is thus best made through sharing information and values.

Routine cervical examinations in labor, whether based on clinical circumstances such as labor induction or rupture of membranes, patient request, or hourly recording guidelines mandating scheduled documentation, should be examined for their bias toward health care provider preference and away from patient preference or evidence. Lack of informed consent, including lack of consent prior to vaginal examinations in labor, is now detailed extensively throughout the World Health Organization typology of mistreatment in childbirth as failure to meet professional standards of care. The same classifications were also used for patients' own reports of mistreatment in care in the Giving Voice to Mothers Study. This lack of consent includes when patients perceive health care providers as merely going through the motions of the consent process.

Example Scripting: Consent in Outpatient Pelvic Care

Complete informed consent for a pelvic examination, whether for an annual visit or during labor, includes the reason for the examination, benefits, risks, alternatives, and time for questions. Gynecologic pelvic care, particularly in outpatient settings, is rarely emergent; thus it affords plentiful opportunities to individualize care. As consent is an ongoing process, pelvic care providers should continue to modify language throughout an examination to continue to transfer power and afford opportunities to consent or decline during the examination itself. Communicating flexibility and alternatives can be done efficiently in language crafted beforehand and chosen by each health care provider for their comfort as well as for that of the patient.

Scripting for common examinations allows students and health care providers to practice language around power transfer, eliciting a patient's concerns as well as prior lived experiences, and anticipating a supportive response if the examination needs to stop unexpectedly for any reason. The following are possible scripts for informed consent for a pelvic examination with a trauma‐informed care framework (ellipses indicate pauses when the health care provider waits for the patient to respond before continuing; xxx indicates patient‐specific information).

For Someone Who Is Asymptomatic

"Based on your history and current lack of symptoms like pelvic pain, pain with sex, irregular bleeding, or significant pain with your periods, a pelvic exam is not indicated today. Research shows that performing an exam for someone without any symptoms could actually find something that is normal but requires further evaluation that could be unnecessary or harmful. Testing for infections could be completed by urine or self‐collected sample, and your Pap test will next be due xxx. I can talk you through how to collect your own samples if you'd prefer. I want you to feel comfortable with your care, and if you believe an exam would be best or if you'd prefer that I collect the swabs, please let me know..."

For Someone Who Is Symptomatic or Someone Who Is Asymptomatic But Requests an Examination After the Above Script

"How have your pelvic examinations been in the past?... Is there anything I can do to make today's exam more comfortable?... When you experienced pain in the past, was it on the outside or the inside?... How would you feel about inserting the speculum yourself?... It is important that you know we can stop at any time for any reason. I may ask you throughout the exam to let me know when you are ready, so that I never start something without your knowing. Language that works for many of my patients is 'pause,' which will cause me to stop moving until you tell me you are ready for me to continue, or 'out,' which if I hear that I will take away my hands or swabs or the speculum immediately. Will those words work for you?... Or would something nonverbal, like raising your hand work better?... Today's exam includes an external exam where I examine the vulva including the labia and clitoris to ensure the skin and structures are normal. Please let me know of any pain or discomfort so I can change what I am doing or be alert to a concerning area. Next I will place gel on the speculum, which looks like this and might feel cold, and insert to the end of your vagina. This commonly feels like pressure. If you feel any pulling, pinching, or pain, please let me know at any point so that I can change what I am doing during the exam, or can be alert to the symptoms you are concerned about. When I open the speculum it can sound like clicking, which is normal. The swabs look like this, and when I collect the sample from inside of your cervix it might feel dry or like scratching. When I take the speculum out it might feel like lower pelvic cramp. After I take out the speculum, then I will change my glove and put on gel to do the internal exam. I will then insert 2 fingers to the end of your vagina and put my other hand on your pelvis. By pressing my 2 hands toward each other, first on the center of your abdomen, and then on each side, I can check the size, movement, and normalcy of your uterus and ovaries. Then I take my hand out and the exam is done. I will check in with you to debrief how everything went. At any point in the process we can stop or wait to do a part of the exam until the next visit. If you decide you want to decline this entire exam we can talk about other ways to get the information needed today. A trained medical chaperone will be in the room for your and my safety. Do you have any questions about anything?... Is there anything you'd like more information about before we continue?..."

This script includes reasonable accommodations for accessible and trauma‐informed care to offer anyone during their pelvic care, including describing parts of the examination before and during, reviewing a patient's prior experiences and modifying practice appropriately, offering self‐swab or self‐speculum insertion, stopping or delaying any portion of an examination for any reason, and debriefing afterward A stepwise process for a trauma‐informed pelvic examination after this initial consent process can be found in the textbook Gynecologic Health Care.

CONCLUSION

In contemporary society, people who seek gynecologic care unfortunately face several realities. Certain genders and identities may be considered legally and socially second class to others. There are marked power imbalances between patients and health care providers. Patients of color are subjected to racist infrastructures. Some health care providers may assume consent de facto by presentation to care, whereas patients who anticipate informed consent do not follow the same assumptive framework. The intimate nature of people's bodies in health care overlaps with social and legal sexual assault parameters. The real‐life implementation of consent often does not match its theoretical intentions. Consent in health care scenarios remains fraught with misinterpretation and open to individualized implementation. The implications for clinicians who do not seek and obtain adequate consent in pelvic care may be minimal, perhaps no more than a regret in hindsight and apologetic debrief with the patient about how to improve communication going forward. However, the implication for a patient who is not appropriately or fully consented, who then experiences forced, coercive, or rough gynecologic and pelvic care, is an experience of assault within health care, by no means minimal or fleeting. Such a discrepancy in experience demands improvement in the process.

Although there are explicit and essential differences between a health care provider knowingly assaulting a patient and a health care provider believing to have adequately consented someone who disagrees with that conclusion, providers must strive toward zero similarity between consent and assault in the context of care provision. A holistic review of consent in pelvic care challenges health care providers to take a personal account of their practice, eliminate language that nudges or coerces patients into a decision, and immediately stop any practice that could be interpreted as, or is, assault. When possible, pelvic care providers should standardize a consent process for common examinations, to ensure consistent application and manage expectations for patients.

It is worth the time, for the bodily autonomy and safety of patients in health care, to build ethical processes and to practice intentional language around trauma‐informed frameworks for consent and shared decision making in pelvic health care.

CONFLICT OF INTEREST

The author has no conflicts of interest to disclose.

ACKNOWLEDGMENTS

The author would like to thank Patty Aikins Murphy, CNM, DrPH, and Em Rabelais, PhD, MBE, MS, MA, RN, for their support in editing this review.

Continuing education (CE) is available for this article. To obtain CE online, please visit www.jmwhce.org. A CE form that can be mailed or faxed is available in the print edition of this issue.

Abstract

Consent is a clear dialogue between individuals to engage in a specific activity. Expectations for consent to intimate examinations in health care should be equal to, if not exceed, expectations for intimate interactions in society. In reality, current definitions of consent in health care vary. These blurry definitions lead to individualized interpretation, incomplete fulfillment, and opportunities for misunderstanding by both patient and health care provider. If a patient does not believe they have consented to an examination or procedure, they are likely to rightfully identify with one of consent's antonyms, assault. Within the field of gynecology, a history of misogyny, racism, and classism illuminates abhorrent contexts of assault disguised as care. Similar practices persist in the modern application of pelvic care, ranging from overt sexual assault to coercion disguised as guidance. Health care providers and students who seek to improve consent practices can look to evidence‐based frameworks such as trauma‐informed care and shared decision making, both of which are embraced widely by professional organizations. These approaches often take precedence during the first pelvic examination; care for people who are lesbian, bisexual, queer, transgender, or nonbinary; and care for anyone with a known history of sexual assault; they can be easily extrapolated to all intimate examinations. Beyond obtaining consent for the examination itself, health care providers must also intentionally obtain consent to include students in care and openly discuss new universal recommendations for chaperone presence. Scripting for common procedures, such as bimanual examinations for pelvic care or cervical examinations in labor, allows health care providers to practice trauma‐informed language, include evidence‐based guidance, and avoid unintentional bias. Contemporary providers of intimate pelvic care must work to understand and strengthen the definition of consent and ensure its realization in practice.

"The pelvic offers a fascinating window into the dynamics of the relationship between doctors and patients, as well as the blurred boundaries between sexuality and medicine. Though the procedure itself is routinely performed on healthy women in a supposedly sterile environment divorced from outside context, it is in reality loaded with context and meaning."

Wendy Kline, Bodies of Knowledge: Sexuality, Reproduction, and Women's Health in the Second Wave

INTRODUCTION

Definitions of consent in health care vary across sources and organizations, and subsequently implementation depends on the health care provider. This individualized application creates opportunities for unintentional misunderstandings between provider and patient, space for coercion disguised as consent, and experiences of assault within the health care setting. Nuances and assurance of consent are especially important in pelvic care and care of sexual and reproductive anatomy. Consent is a concept mirrored across intimate personal lives and intimate examinations, and the same language in both spaces stresses its analogous importance in both experiences for patients: in both circumstances, consent implies an intention to do no harm. Expectations for consent in health care settings should be parallel to, if not exceed those of, expectations in society, where the hierarchical knowledge and power of health care providers over patients must be addressed for consent to be informed and freely given. This higher burden is especially applicable for patients who are not cisgender men: namely, cisgender and transgender women, transgender men, and gender nonbinary people, given similarly experienced intersections of power and bodily autonomy across other social institutions. (This review uses the gender‐inclusive terms person and patient, given that people of all bodies and identities access pelvic care. Quoted resources maintain language of the original version).

In health care settings, actions that would be considered coercion or assault in social settings are often erroneously labeled as clinically or medico‐legally rational. The actions are, however, equivalent from the standpoint of a definition of consent: if someone does not consent to something, the actions against them constitute assault. Because health care providers and institutions apply ambiguous definitions of consent in health care, it is ethically challenging to ensure that complete and informed consent is obtained consistently in practice. Vague terminology can lead to inconsistent implementation and risk for assault, or the experience of assault, within the health care setting. Ultimately the onus of ethical informed consent rests on the health care provider, as the more powerful entity in the interaction, and the person seeking consent. For the well‐being of patients entrusting providers with pelvic care needs, consent must be held to the highest standard.

HISTORICAL AND CONTEMPORARY CONTEXT

In order to holistically consider current experiences of gynecologic health care consumers, health care providers must acknowledge the profession's historical origins. The field of gynecology built its foundation on assault and nonconsent, beginning with forced examinations and nonanesthetized surgical experiments on enslaved people wholly unable to decline. This occurred as white men, in designing modern medicine,

QUICK POINTS

✦ Consent is a process that equalizes the ability to respond either yes or no.

✦ The reasonable patient standard, shared decision making, and trauma‐informed frameworks are emerging as standards of care for informed consent.

✦ Pelvic health care mirrors people's consensual and forced sexual experiences: when providing clinical care, health care providers must intentionally choose language and approach during consent processes and examinations to decrease iatrogenic trauma and lessen the risk of triggering past trauma.

✦ If someone declines recommended care, further attempts by the health care provider to obtain acquiescence are coercion unless a new consent process is initiated because of change in clinical circumstances.

✦ Chaperones are recommended in all health care settings for all intimate examinations regardless of the health care provider's sex or gender identity.

destabilized historical knowledge held by Indigenous and Black healers. The context of forced and nonconsensual pelvic care continued into the 20th century with practices of quarantining and forcing internal examinations on people suspected of venereal infections, sterilizing people of color and people who were poor without their knowledge, unnecessarily requiring pelvic examinations for oral contraceptives, and hymen inspection for virginity testing. Examples persist in current practice, including medical students performing covert pelvic examinations on patients under anesthesia without their explicit consent, decades of abuse by Larry Nassar, and fear of retribution when declining care recommendations.

People's current lived experiences also affect their interactions in health care spaces. Outside of health care, issues of consent and safety are nonexistent or not able to be assumed for all people across similar social institutions. Examples include inadequate investigation into sexual assaults on college campuses or within religious communities; lack of political and legal support for queer, transgender, and nonbinary people in their struggle to find restrooms; limited or no accountability for politicians who admit to sexual assault, including of minors; and documented rape of migrant people seeking refuge or asylum. One out of every 6 American women reports an attempted or completed rape in their lifetime, with many more attacks going unreported to authorities or dismissed by the survivor as not meeting criteria for assault because of rape culture myths.

Thus, people's own expectations of safety in health care cannot be assumed, as safety has not been the historical context in gynecology, is not currently the societal context in similar social institutions, and is not, even now, guaranteed within health care. This is all despite, in spite of, and beyond the reach of the health care provider's best intentions to create safe spaces. Given the implications of people's lived experiences of consent and safety prior to engaging in health care, especially in intimate circumstances, the process for ensuring informed and active consent in pelvic care must be transparent.

CONSENT IN HEALTH CARE

Consentis defined as a "process of communication between a clinician and a patient that results in the patient's authorization or agreement to undergo a specific medical intervention." The simplicity of this definition carries significant weight in health care settings, where situational power, unequal knowledge, and a patient's own potentially traumatic experiences as a health care consumer elevate the importance of the process. Informed consent in health care is both a legal and ethical framework through which patients receive information and ask questions to lead to a decision about their care. The above broad definition reflects the 4 common pillars of medical ethics: autonomy, or freedom of choice and bodily integrity; justice, or equal application across all people; beneficence, or acting in the person's best interests; and nonmaleficence, or doing no harm.

Professional Standards

This definition and the 4 ethical pillars are reflected in contemporary documents developed to guide pelvic care providers. The Joint Commission highlights that informed consent is an ongoing process, not merely a signature on a form. The American College of Nurse‐Midwives' (ACNM) Hallmarks of Midwifery Practice highlights "advocacy for informed choice, shared decision making, and the right to self determination." Within the midwifery Code of Ethics, key concepts for informed consent are (1) disclosure of information, including risks, benefits, and care options; (2) clarification that the patient understands that information; and (3) assurance of the voluntary nature of the consent. The midwifery Code of Ethics also details various individual circumstances that might affect the voluntary component of the consent process, such as health insurance status, income, privacy, limited access to other health care providers, and relationship safety. The American College of Obstetricians and Gynecologists' (ACOG) Code of Ethics also reflects the above, as well as the importance of presenting medical facts and recommendations "in reasonably understandable terms and include alternative modes of treatment and the objectives, risks, benefits, possible complications, and anticipated results of such treatment."

ACNM and ACOG both use the term shared decision making interchangeably with informed consent. The ACNM Position Statement "Shared Decision Making in Midwifery Care" emphasizes patients as authoritative decision makers, uplifts the importance of effective communication between patients and health care providers, and "maintains right to informed refusal." The ACOG Committee Opinion "Informed Consent" similarly reflects on the "moral right to bodily integrity, to self‐determination... and freedom to make decisions within caring relationships." A separate ACOG resource details that shared decision making occurs when "decisions about interventions should incorporate the woman's personal values and preferences and should be made only after she has enough information to make an informed choice." Both organizations highlight the importance of consumers' active involvement in their health care decision making and are similar in themes and approaches.

Health care provider practice is guided by the concept of standard of care, or what a reasonable provider would do in a similar circumstance. This concept aligns with the traditional informed consent model of a reasonable provider standard, or what a reasonable provider would share as part of the consent process in the same situation. In shifting power to shared decision making, the model also shifts toward a reasonable patient standard, or what a reasonable patient would need to know to make an informed decision. The reasonable patient standard is emerging as standard of care and in many ways overlaps with the more broadly known shared decision‐making model. Because the patient themselves would define their own parameters of a reasonable patient, this transition to a reasonable patient standard highlights the responsibility of health care providers to individualize the consent process and consider the patient holistically within cultural contexts and contemporary identities. For pelvic care, this specifically applies to sex and gender identities and requires all health care providers in practice to understand how a unique person's identities and experiences broaden expectations of what should be disclosed, how to disclose it, how to ensure comprehension, and how explicit the consent should be.

Consensus across organizational and ethical resources is that a complete process of consent requires disclosing the information that a reasonable provider would share and/or a reasonable patient would want to know, and that the information be tailored to the patient's literacy and numeracy levels, in the patient's preferred language, and through the patient's preferred delivery system, whether verbal or through decisional aids or interactive models. The process should be free from coercion by the health care provider or the patient's family and documented completely in the health record. (Table 1).

Disclose the information that a reasonable provider would share and/or a reasonable patient would want to know in a similar situation, including the following:

diagnosis or condition prompting the recommendation or treatment

benefits, and probability that the treatment will succeed

risks and complications

available alternatives, and their risks and benefits

possible consequences of forgoing treatment

Share information through the patient's preferred delivery system: verbal communication, decision aids, surveys, checklists, or interactive online models

Ensure the decision can be made free from bias or coercion by the health care provider or the patient's family

Document all processes of consent, including information shared and the patient's questions and answers, in the clinical record

Power Dynamics

The sensitive nature of intimate pelvic examinations calls for an understanding of not only recommendations for informed consent but also the power imbalances between patients and health care providers, which often mimic power imbalances in assault outside of health care. Health care providers, who hold power and knowledge, are tasked with obtaining consent; patients, who by nature of power dynamics in health care are disempowered in both knowledge and role, are tasked with consenting. Overlapping patient‐provider discordances of race, sex or gender identity and expression, language, educational status, disability, and class further highlight the imbalance. Although trust in health care providers or deference to authority may guide decision making when patients are otherwise neutral or unsure, 2 validated indicators of respectful care are a patient's comfort in declining care and lack of coercion in decision making. If a patient requests the health care provider's recommendation and the counsel given supports ongoing consent processes and continues shared decision making, free from coercion or provider bias, then such guidance still aligns with consent.

Critically important to the process of obtaining consent is equalizing the patient's ability to say yes or to say no. If a health care provider simply expects a patient's acquiescence to the recommended plan, true informed consent does not happen. Patients must be explicitly informed of their right to refusal. Informed refusal is in fact a corollary of informed consent, and health care providers must anticipate and respect both outcomes. Documenting that someone declines or decides against, rather than refuses, care may be a word choice more indicative of respect for the patient's decisional authority and may be better perceived by patients when accessing their own health records. Nonetheless, patients who wish to decline a recommendation may be acutely aware of the provider's negative feelings or concerned it will change the therapeutic relationship. Health care providers must thus consider their tone and language when a patient declines a recommendation in order to maintain shared power in the therapeutic relationship. Providers should embrace the consent process as an opportunity for patients to take control of their own care and be empowered within the patient‐provider relationship.

Directed Counseling, Coercion, and Force

Consent by any other name is not consent. Any attempt by health care providers to indicate a preferred approach or desired outcome, defined interchangeably across resources as nudging, directed counseling, pressure persuasion, or forced compliance, cannot by definition be consent, as the sway of the provider cannot supersede a patient's decisional authority. If a health care provider weaves their own preferences into recommendations in an effort to guide patients toward a decision that the provider determines best for their welfare, that is not consent. Such tactics are not free from bias and may be ethically congruent with coercion. Although coercion is often defined as involving threat or force, a fine line exists between consent and coercion that can be crossed in practical implementation, especially in emergency circumstances when decisions need to be made quickly (Table 2). Importantly, ACOG asserts that "pregnancy is not an exception to the principle that a decisionally capable patient has the right to refuse treatment, even treatment needed to maintain life." The legal or liability implications of a patient's right to decline recommended care, even when there are emergent risks to the well‐being of themselves or their fetus, conflicts with standard medical obligations, or affronts to the health care provider's personal values, are outside of the scope of this article and are covered elsewhere.

INTIMACY OF PELVIC CARE

Clinicians maintain a clinical environment in pelvic care by modifying language and palpation to avoid any parallels with sexual intimacy. This acknowledges the lived proximity of a pelvic examination to the patient's experience of physical intimacy and sexuality. Health care providers must recognize that some patients view pelvic examinations as an experience they would define as intimate. Negative experiences during pelvic examinations may lead patients to delay or avoid future care, which ultimately eliminates any health benefits of gynecologic care. Thus, "engaging patients in the decision‐making process can improve patients' comfort with intimate touch."

The Trauma‐Informed Framework

Trauma‐informed care, the standard of care for all sexual assault survivors, is now considered the standard for all health care and especially for intimate examinations, given that patients may not disclose an assault history or identify previous health care examinations as traumatic. This evidence‐based framework assumes that all people have experienced trauma, may be currently experiencing it, or will experience it in the future. It embraces the range of effects that trauma may have on one's physical and mental health and guides tone, approach, response, and process at both individual and organizational levels. Health care providers may already consider trauma‐informed care consent processes as uniquely relevant in scenarios like the first pelvic examination, care for sexual assault survivors, and care for patients of diverse sexual orientation and gender identities. The Engage, Motivate, Protect, Organize, Self‐Worth, Educate, Respect (EMPOWER) Clinic for survivors of sex trafficking and sexual violence in New York details a thorough approach to trauma‐informed health care, which can be easily extrapolated to empower and engage all patients regardless of disclosed history.

First Pelvic Examination

Acceptance of pelvic care as central to sexual and reproductive health care may lead to assumptions about what is normal or expected; this was seen in the assaults by Larry Nassar. The first pelvic examination establishes long‐term understanding of what the examination entails and imprints experiences on gynecologic health care going forward. Health care providers must take careful steps to obtain consent for the first pelvic examination, including clear discussion about each step, how to notify the provider of discomfort or how to rescind consent, and explanation that the examination is not mandatory. Providers should be attuned to power transfer throughout, reminding the patient that the examination can stop at any point and ensuring that the patient is in control. The first pelvic examination also serves as a learning opportunity to discuss when different examination components may be appropriate or recommended, including the purposes of external visual examination, internal speculum visualization, and bimanual palpation: differentiation of each step allows informed consent, and informed refusal, as necessary.

History of Sexual Assault

A known history of sexual trauma, regardless of the type of assault, compels health care providers to modify the approach to pelvic care. The experience of the assault itself and subsequent pelvic examinations can intertwine in the survivor's memories. Avoiding common verbiage that mimics sexual innuendo or common assault language, such as "spread your legs wide" or "just relax," decreases possible misinterpretation of the pelvic care provider as partner or assailant and maintains a supportive clinical environment. Individualized accommodations, such as deferring portions of an examination, giving anticipatory guidance on possible sensations like pressure or temperature, and stepwise consent processes, are also sensitive components of care for survivors. Health care providers staying attentive to and supportive of effective coping mechanisms, such as distraction with music or social media and deep breathing techniques, can facilitate patient resilience during difficult examinations.

Lesbian, Gay, Bisexual, Queer, Transgender, and Nonbinary Communities

Any recommendation for pelvic care that includes insertion of a speculum or test swabs or evaluation by bimanual examination must take into consideration the patient's intimate lived experience. Lesbian, gay, bisexual, transgender, and nonbinary people are more likely than their cisgender or cisgender heterosexual counterparts to never have, or vary engagement in, penetrative intercourse. Pelvic health care may be the only time someone experiences something inserted into their vagina or rectum, thus exponentially increasing the sensitivity and physical intimacy, or trauma, of the examination for that individual. In addition, it is important to recognize that a history of sexual assault is higher in queer communities, compounding the need for deliberate trauma‐informed care. Finally, transgender and nonbinary individuals may have language for their bodies that differs from medically gendered language. Health care providers should inquire about the individual's anatomical language and use this in consent processes as well as during the examination itself.

Consenting Beyond the Examination Itself: Chaperones and Students

Chaperones

Even with all guidelines for informed consent and shared decision making in place, patients may misinterpret or experience appropriate health care through traumatic lenses. ACOG now recommends the presence of chaperones for all breast or chest, genital, and rectal examinations; this is irrespective of the sex or gender of the person performing the examination and includes all examinations performed in outpatient and inpatient settings, including labor and birth units, as well as during diagnostic studies such as transvaginal ultrasonography. These recommendations occur in the context of significant publicity surrounding Larry Nassar's sexual assault of patients, as well as with increased reporting and disclosure of misconduct among nurses and physicians. Chaperones are medical staff trained in clinical best practices and patient privacy, are able to identify misconduct, and have an immediate uncensored pathway to report concerns. Because of these criteria, friends and family of the patient, trainees, and students cannot serve as chaperones, although at the patient's discretion they can be present as advocates or support people. Patients should receive anticipatory guidance regarding the new standard for the presence of chaperones to ensure consensual and appropriate pelvic care; however, they can decline chaperone presence as part of their consent process, and health care providers can then document this decision in the chart.

Students

Clinical education programs must provide structured content around ethics and consent in the context of gynecologic care. Two recently published textbooks offer specific guidance about consent and trauma‐informed gynecologic care and are relevant for all learners who will provide pelvic care. Standard curricula around bioethics and medical ethics can be designed to evolve based on student‐identified concerns; this allows opportunities for incoming generations of health care providers to affect the contemporary ethics discourse. Patients must give consent for student involvement as well as receive anticipatory guidance regarding what the student's role will entail: what type of student will be involved in the care, how many students will be present, their capabilities, how many examinations will be performed if the student is involved, and whether the preceptor or attending health care provider will be present at the same time. On that theme, patients should be fully permitted to decline student involvement even in educational institutions: presence within a teaching facility is not explicit consent for student involvement, as even in this case the assumption of consent in any capacity does not meet the definition of consent as a standalone concept. Furthermore, not all patients may understand that they are seeking care in a teaching facility, so transparency as to student involvement must be the standard. Preceptors and attending physicians must prioritize patient consent and care over student learning. This models respect for patient autonomy and decision making by specifically seeking informed consent for the care process as well as the student's involvement. Unfortunately, failure to appreciate this is reflected in the continuation of unconsented pelvic examinations on patients under anesthesia. Every few years a medical student publishes a report of being pressured by attending or resident physicians to perform covert bimanual examinations on patients under anesthesia, without the patient's explicit consent, for the student's learning benefit. These reports fail to detail if patients are notified of the examinations when awakened from surgery, if they ever question the presence of medical gel intravaginally, or if they express a sense of penetration. These reports substantiate patient's own accounts of the same. Such violations parallel drugged rape experiences and rightfully compromise trust of gynecologic care providers. ACOG specifically mandates consent for these examinations.

CLINICAL CONTEXT

Informed consent and shared decision making not only seek to equalize the patient as an active participant in their health care experience but also aim to eliminate experiences of misunderstanding, mistreatment, assault, and abuse. Health care providers must take the time to reconcile aspects of their practice that diverge from what was and continues to be the informed consent process in order to eliminate a patient's experience of abuse within health care settings. Examining common clinical intimate examinations such as the annual pelvic examination or routine cervical examinations in labor provides an opportunity for providers to reflect on their typical consent process. Both scenarios cut across the nexus of patient experience, provider preference, institutional norms, and evidence‐based practice as part of consent processes. Every health care provider has their own opinion about whether an annual pelvic examination is needed or how often cervical examinations should be done during labor. Common language used in each scenario can illuminate areas for improvement in these cases and across all health care consent processes (Table 3).

Consent and the annual pelvic examination

Nudging, directed counseling

Health care provider preference for routine annual pelvic examination in asymptomatic people

"I would prefer to do the exam because in my clinical experience..."

"What I would want my daughter, mother, spouse, or friend to choose..."

"Given the evidence, having a pelvic exam is your decision. We can defer the exam until the point in time when you might notice a symptom, or can start with an external exam or a speculum exam, and depending on what is visualized we can discuss whether an internal exam is needed."

Coercion

After completing counseling and informed consent, if the patient says "No," the health care provider continues to ask for consent with no change in clinical circumstance

"I hear you saying no, but want I want to emphasize is..."

"Okay but that means I cannot provide contraception, referrals, or testing today."

Complete consent with all risks and benefits the first time. Discuss during this first consent process that if clinical circumstances change, you will be revisiting the conversation as risks and benefits change. Do not bring up risks for the first time, or emphasize them repeatedly, after a "no" as part of working toward obtaining a "yes."

Force, assault

Patient consents to one part of the examination, like an external or speculum examination, and health care provider proceeds with internal bimanual examination or rectal examination

"I know you said no before but now what I'm seeing leads me to continue the next step as your provider so I am going to start that now."

"It is my job to make decisions in your best interest so I am going to proceed with the next step in the exam."

Only proceed with portions of examination that patient has explicitly consented to, while all other parts of consent process are being met.

If clinical scenario changes and health care provider finds need for further examination, restart the consent process before moving forward.

Consent and cervical examinations in labor

Nudging, directed counseling

Patient questions the need for an examination

"This is what we do for everyone."

"How else will we know if labor is progressing?"

"Often we check the cervix every few hours in labor, just to see how labor is progressing..." Then start the consent process outlined above.

Coercion

Cervical examination is needed, health care provider completes consent process, and patient declines

"So I hear you declining, but what I want to emphasize is..."

"I have to do this, or your baby will die."

"Trust me, I know what's best."

Ensure all risks and benefits were included in the first consent process, not added on at the end. Then ask when it is okay to revisit the conversation.

Force, assault

Patient asks for cervical examination to stop, and health care provider is almost done

Starting a cervical examination without explicitly obtaining consent

"You're doing great."

"Just another second."

"Almost finished."

"I am doing this for you."

"You will thank me later."

"I just need to check."

Stop the examination immediately. The patient rescinded consent.

Never start any examination without the patient's consent.

Evidence recommending against the screening pelvic examination in asymptomatic patients is still very new for patients and health care providers. Both patients accustomed to an annual external or internal examination and health care providers who may continue their preferred practice despite the evidence may struggle or disagree with possible changes to practice. Shared decision making is the posited standard of care, especially in such a circumstance when perhaps no perfect answer exists and when the decision regarding a plan of care is thus best made through sharing information and values.

Routine cervical examinations in labor, whether based on clinical circumstances such as labor induction or rupture of membranes, patient request, or hourly recording guidelines mandating scheduled documentation, should be examined for their bias toward health care provider preference and away from patient preference or evidence. Lack of informed consent, including lack of consent prior to vaginal examinations in labor, is now detailed extensively throughout the World Health Organization typology of mistreatment in childbirth as failure to meet professional standards of care. The same classifications were also used for patients' own reports of mistreatment in care in the Giving Voice to Mothers Study. This lack of consent includes when patients perceive health care providers as merely going through the motions of the consent process.

Example Scripting: Consent in Outpatient Pelvic Care

Complete informed consent for a pelvic examination, whether for an annual visit or during labor, includes the reason for the examination, benefits, risks, alternatives, and time for questions. Gynecologic pelvic care, particularly in outpatient settings, is rarely emergent; thus it affords plentiful opportunities to individualize care. As consent is an ongoing process, pelvic care providers should continue to modify language throughout an examination to continue to transfer power and afford opportunities to consent or decline during the examination itself. Communicating flexibility and alternatives can be done efficiently in language crafted beforehand and chosen by each health care provider for their comfort as well as for that of the patient.

Scripting for common examinations allows students and health care providers to practice language around power transfer, eliciting a patient's concerns as well as prior lived experiences, and anticipating a supportive response if the examination needs to stop unexpectedly for any reason. The following are possible scripts for informed consent for a pelvic examination with a trauma‐informed care framework (ellipses indicate pauses when the health care provider waits for the patient to respond before continuing; xxx indicates patient‐specific information).

For Someone Who Is Asymptomatic

"Based on your history and current lack of symptoms like pelvic pain, pain with sex, irregular bleeding, or significant pain with your periods, a pelvic exam is not indicated today. Research shows that performing an exam for someone without any symptoms could actually find something that is normal but requires further evaluation that could be unnecessary or harmful. Testing for infections could be completed by urine or self‐collected sample, and your Pap test will next be due xxx. I can talk you through how to collect your own samples if you'd prefer. I want you to feel comfortable with your care, and if you believe an exam would be best or if you'd prefer that I collect the swabs, please let me know..."

For Someone Who Is Symptomatic or Someone Who Is Asymptomatic But Requests an Examination After the Above Script

"How have your pelvic examinations been in the past?... Is there anything I can do to make today's exam more comfortable?... When you experienced pain in the past, was it on the outside or the inside?... How would you feel about inserting the speculum yourself?... It is important that you know we can stop at any time for any reason. I may ask you throughout the exam to let me know when you are ready, so that I never start something without your knowing. Language that works for many of my patients is 'pause,' which will cause me to stop moving until you tell me you are ready for me to continue, or 'out,' which if I hear that I will take away my hands or swabs or the speculum immediately. Will those words work for you?... Or would something nonverbal, like raising your hand work better?... Today's exam includes an external exam where I examine the vulva including the labia and clitoris to ensure the skin and structures are normal. Please let me know of any pain or discomfort so I can change what I am doing or be alert to a concerning area. Next I will place gel on the speculum, which looks like this and might feel cold, and insert to the end of your vagina. This commonly feels like pressure. If you feel any pulling, pinching, or pain, please let me know at any point so that I can change what I am doing during the exam, or can be alert to the symptoms you are concerned about. When I open the speculum it can sound like clicking, which is normal. The swabs look like this, and when I collect the sample from inside of your cervix it might feel dry or like scratching. When I take the speculum out it might feel like lower pelvic cramp. After I take out the speculum, then I will change my glove and put on gel to do the internal exam. I will then insert 2 fingers to the end of your vagina and put my other hand on your pelvis. By pressing my 2 hands toward each other, first on the center of your abdomen, and then on each side, I can check the size, movement, and normalcy of your uterus and ovaries. Then I take my hand out and the exam is done. I will check in with you to debrief how everything went. At any point in the process we can stop or wait to do a part of the exam until the next visit. If you decide you want to decline this entire exam we can talk about other ways to get the information needed today. A trained medical chaperone will be in the room for your and my safety. Do you have any questions about anything?... Is there anything you'd like more information about before we continue?..."

This script includes reasonable accommodations for accessible and trauma‐informed care to offer anyone during their pelvic care, including describing parts of the examination before and during, reviewing a patient's prior experiences and modifying practice appropriately, offering self‐swab or self‐speculum insertion, stopping or delaying any portion of an examination for any reason, and debriefing afterward A stepwise process for a trauma‐informed pelvic examination after this initial consent process can be found in the textbook Gynecologic Health Care.

CONCLUSION

In contemporary society, people who seek gynecologic care unfortunately face several realities. Certain genders and identities may be considered legally and socially second class to others. There are marked power imbalances between patients and health care providers. Patients of color are subjected to racist infrastructures. Some health care providers may assume consent de facto by presentation to care, whereas patients who anticipate informed consent do not follow the same assumptive framework. The intimate nature of people's bodies in health care overlaps with social and legal sexual assault parameters. The real‐life implementation of consent often does not match its theoretical intentions. Consent in health care scenarios remains fraught with misinterpretation and open to individualized implementation. The implications for clinicians who do not seek and obtain adequate consent in pelvic care may be minimal, perhaps no more than a regret in hindsight and apologetic debrief with the patient about how to improve communication going forward. However, the implication for a patient who is not appropriately or fully consented, who then experiences forced, coercive, or rough gynecologic and pelvic care, is an experience of assault within health care, by no means minimal or fleeting. Such a discrepancy in experience demands improvement in the process.

Although there are explicit and essential differences between a health care provider knowingly assaulting a patient and a health care provider believing to have adequately consented someone who disagrees with that conclusion, providers must strive toward zero similarity between consent and assault in the context of care provision. A holistic review of consent in pelvic care challenges health care providers to take a personal account of their practice, eliminate language that nudges or coerces patients into a decision, and immediately stop any practice that could be interpreted as, or is, assault. When possible, pelvic care providers should standardize a consent process for common examinations, to ensure consistent application and manage expectations for patients.

It is worth the time, for the bodily autonomy and safety of patients in health care, to build ethical processes and to practice intentional language around trauma‐informed frameworks for consent and shared decision making in pelvic health care.

CONFLICT OF INTEREST

The author has no conflicts of interest to disclose.

ACKNOWLEDGMENTS

The author would like to thank Patty Aikins Murphy, CNM, DrPH, and Em Rabelais, PhD, MBE, MS, MA, RN, for their support in editing this review.

Continuing education (CE) is available for this article. To obtain CE online, please visit www.jmwhce.org. A CE form that can be mailed or faxed is available in the print edition of this issue.

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Correction added on December 7, 2020: The spelling of the name Em Rabelais was corrected in the Acknowledgements section.] Consent is a clear dialogue between individuals to engage in a specific activity. Expectations for consent to intimate examinations in health care should be equal to, if not exceed, expectations for intimate interactions in society.

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An on-going project of Nurse Manifest, centering the lived experiences of nurses impacted by white supremacy cultures & white feminism in nursing and society.

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Summary of current activities

Past Actions/Events

Background

This initiative was launched in September 2020 to open discussion that focused on coming to terms with racism in nursing - a "reckoning" that acknowledges the reality and begins a process of healing and change. Racism in nursing has persisted far too long, sustained in large part by our collective failure to acknowledge the contributions and experiences of nurses of color. The intention of this project is to bring the voices of BILNOCs (Black, Indigenous, Latinx and other Nurses Of Color) to the center, to explore from that center the persistence of racism in nursing, and to inspire/form actions to finally reckon with racism in nursing.

The events that are now in place to continue this initiative grew out of the initial discussions in the Fall of 2020, when nurses of color shared their experiences and hopes for the future. These discussions gave rise to each of the events and activities that are now in place!

Principles of Reckoning

All of the activities related to "Overdue Reckoning" are guided by our Principles of Reckoning, which take a bold anti-racist stand for nursing. Our principles are:

We claim the courage to join together through the experience of building our anti-racist capacity nursing.

We cherish the contributions and honor the voices of Black, Indigenous, Latinx and other Nurses of Color (BILNOC), and yield the floor to their voices throughout our time together.

We recognize that we cannot move forward without a deep understanding of Black, Indigenous, Latinx and other nurses of color experiences with racism.

The insights and recommendations of Black, Indigenous, Latinx and other nurses of color are vital to ground our thinking, and to guide our actions.

We pledge to listen deeply and with respect to any and all expressions of anger, rage, despair and grief arising from racism.

We commit to healing those harmed by racism.

We commit to challenging, resisting and ending the voices and actions that sustain white privilege.

We seek to nurture authentic anti-racist awareness.

We will inspire and nurture action, as we boldly claim an anti-racist identity for nursing.

BILNOC Zoom Meetings: Last Saturday every month

The BILNOC Reckoning Zoom Meetings bring together Black, Indigenous, Latinx and other Nurses of Color to explore avenues for further antiracism actions. These discussions will include ideas for personal, family, workplace, and larger community and organizational change. All are welcome to join with the understanding that BILNOC nurses will take the lead in these discussions. Register here.

Ongoing "Overdue Reckoning on Racism in Nursing" discussions every first Saturday

Lucinda Canty

Mark your calendar for the first Saturdays starting on February 6, 2021! Time 4 - 5:30 pm Eastern. When you register you will receive a confirmation notice and email providing the Zoom login information. The format for these discussions will evolve over time, but we will begin with discussions led by Lucinda Canty and other nurses of color and focused on a particular issue and/or reading to be announced in advance.

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Ongoing: Overdue Reckoning on Racism in Nursing

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Additional ResourcesZoom-Keeping Summary of current activities BILNOC Reckoning with Racism - Every last Saturday of the month, 4 - 5:30 pm Eastern Daylight Time Register here!Ongoing 1st Saturday "Overdue Reckoning" Discussions - 4 - 5:30 pm Eastern Daylight Time Register here! Past Actions/Events Moving Beyond "White Fragility for Nurses" January 2021 Feedback from participantsInitial "Overdue...

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Shared by Dr. Wanda Montalvo

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Theorizing as Emancipatory Action; Emancipatory Action as Theorizing

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Theorizing as Emancipatory Action; Emancipatory Action as Theorizing

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From Peggy Chinn's blog on Nursology

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Over the past year those of us managing the Nursology.net website have experienced two unintended consequences - growing awareness of the importance of fundamental nursing/ public health knowledge and action, and the imperative to examine the structural and interpersonal dynamics of racism. As the web manager of this Nursology.net site as well as the NurseManifest.comwebsite, the home of " Overdue Reckoning on Racism in Nursing," I have had a front-row seat from which to witness and participate in these two complimentary processes.

From the NurseManifest sphere, we have addressed (explicitly and implicitly) questions such as: "How does our activism contribute to our discipline?" "What are the fault-lines in nursing created by our failure to address racism in nursing?" "How can we engage in authentic reckoning with racism in nursing?" "How can this reckoning shift nursing to more fully engage in facilitation of humanization for those who have historically been harmed by racism?" "How can nursing knowledge be decolonized to fully embrace the knowledge and wisdom of Black, Indigenous, Latina/x, and other nurses of color?"

From the Nursology.net sphere, we have addressed (explicitly and implicitly) questions such as: "What does decolonization of nursing knowledge mean?" "What dynamics have persisted to bring us to this point in history where the scholarship and theorizing of Black, Indigenous, Latina/x and other nurses of color are strikingly absent from our historical record?" "How can we move away from performative action, to fully abandon white privilege in nursing, and to welcome nurse scholars of color to the center of our discourse?"

I do not have direct answers to any of these questions. In fact I believe there are no specific "action" prescriptions that can provide "answers." The response to all of these questions is what I believe to be critical emancipatory process - a process that begins with a recognition of the fundamental realities of racism and dedication to the hard work of deepened awareness and action for change. In the first chapter of the text "Philosophies and Practices of Emancipatory Nursing,"(1) Kagan, Smith and Chinn identified the following characteristics of emancipatory knowledge and critical theory that informs emancipatory action, as revealed by the chapter authors who contributed to the text:

What is "critical' -

Unpacking hegemonies

Upstream thinking

Interrogating historical/social context

Framing/anticipating transformative action

What is "emancipatory"

Facilitating humanization

Disrupting structural inequities

Self-reflection

Engaging communities

Taken together, these characteristics point to a deep understanding of what it might mean to bring knowledge and action together as one - the process and understanding that emerges from "knowing what we do, and doing what we know." In my experience growing up and becoming an "elder" as a fully colonized white woman, I know all too well the experience of separation of mind and body, of understanding and experience. But there is a glimmer of recognition when I encounter instances - my own and those revealed to me in stories others recount - when experience and understanding come together as one - when we recognize the importance of personal knowing and doing. And, recognize when that unified experience reveals new knowledge, new understanding. This process of action/reflection is theorizing at its best. African American scholar Anthony James Williams described this process of theorizing that he observed in his mother and grandmother:

Everyday black women theorists are often forgotten, undervalued and rarely considered theorists due to their lack of formal training and scholarly publications. But for my maternal lineage, the social patterns they observed became lessons. Those lessons then became theories about the social world they incorporated into their daily lives. Keen observation on their part lead to mental maps of where it would be safe to walk as black women, raise their children and avoid white violence. As the wife of a man in the military, my grandmother inevitably had her own theory of residential redlining based on her lived experience well before any academics published on the topic. ⁽²⁾

Now is the time to engage in the critical emancipatory act of centering the voices of nurses of color who have been undervalued and discounted, only rarely recognized as theorists. The privileged white gaze from which nursing scholarship views the world recognizes only that which appears consistent with white experience, white culture. To face the realities surrounding white complicity that perpetuates racism is a possibility that is either far too frightening, or simply not comprehensible. But comprehend we must if we are to ever move to a reality where all experience is celebrated as valid and valuable, where skin color is not a determinant of whether you live or die.

The time has now come for all in our discipline - nursologists, nurses, students, educators, administrators, policy-makers - to make a strong and unequivocal turn away from all words and actions that render advantage for those whose skin is "white" and that disadvantage all of those with dark skin. It is time to abandon performative words and actions that claim to care for all, and turn instead to dismantle dehumanizing forces of racism and restore full humanization for all. For those who have white skin, it is time to reckon with your own complicity, unveiling the fault-lines (rifts, splits) created by the persistence of racism, and engage in the healing that must be done. For those who have dark skin, it is time to gather the courage to speak your truth, calling on your keen capabilities to discern injustice. For all of us together, it is time to form strong bonds of connection and support for this difficult path. It is a difficult path, but it is the path that will lead us to mental maps - to theorizing the healing that must take place. As we have experienced in our " Overdue Reckoning on Racism in Nursing " journey, it is also a path that is lined with moments of pure joy!

Sources:

1. Kagan, P. N., Smith, M. C., & Chinn, P. L. (2014). Introduction. In P. N. Kagan, M. C. Smith, & P. L. Chinn (Eds.), Philosophies And Practices Of Emancipatory Nursing: Social Justice As Praxis (pp. 1-20). Routledge Taylor & Francis Group.

2. Williams, A. J. (2018, June 15). Who Teaches Academics to Theorize? Inside Higher Ed. https://www.insidehighered.com/advice/2018/06/15/theorizing-black-scholars-differs-white-western-academic-standards-no-less-valid

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Theorizing as Emancipatory Action; Emancipatory Action as Theorizing

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Over the past year those of us managing the Nursology.net website have experienced two unintended consequences - growing awareness of the importance of fundamental nursing/ public health knowledge and action, and the imperative to examine the structural and interpersonal dynamics of racism. As the web manager of this Nursology.net site as well as the NurseManifest.com...

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A framework to guide planetary health education

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A framework to guide planetary health education

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From The Lancet

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A framework to guide planetary health education

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Eve Tuck & K. Wayne Yang

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Stop Talking about A.I. Ethics. It's time to talk about power. 

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Stop Talking about A.I. Ethics. It's time to talk about power. 

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By Karen Hao, interviewing Kate Crawford.

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We need to acknowledge both the politics and the physical impact that AI has on the planet, says scholar Kate Crawford in her new book.

At the turn of the 20th century, a German horse took Europe by storm. Clever Hans, as he was known, could seemingly perform all sorts of tricks previously limited to humans. He could add and subtract numbers, tell time and read a calendar, even spell out words and sentences-all by stamping out the answer with a hoof. "A" was one tap; "B" was two; 2+3 was five. He was an international sensation-and proof, many believed, that animals could be taught to reason as well as humans.

The problem was Clever Hans wasn't really doing any of these things. As investigators later discovered, the horse had learned to provide the right answer by observing changes in his questioners' posture, breathing, and facial expressions. If the questioner stood too far away, Hans would lose his abilities. His intelligence was only an illusion.

This story is used as a cautionary tale for AI researchers when evaluating the capabilities of their algorithms. A system isn't always as intelligent as it seems. Take care to measure it properly.

COURTESY OF KATE CRAWFORD

But in her new book, Atlas of AI, leading AI scholar Kate Crawford flips this moral on its head. The problem, she writes, was with the way people defined Hans's achievements: "Hans was already performing remarkable feats of interspecies communication, public performance, and considerable patience, yet these were not recognized as intelligence."

So begins Crawford's exploration into the history of artificial intelligence and its impact on our physical world. Each chapter seeks to stretch our understanding of the technology by unveiling how narrowly we've viewed and defined it.

Crawford does this by bringing us on a global journey, from the mines where the rare earth elements used in computer manufacturing are extracted to the Amazon fulfillment centers where human bodies have been mechanized in the company's relentless pursuit of growth and profit. In chapter one, she recounts driving a van from the heart of Silicon Valley to a tiny mining community in Nevada's Clayton Valley. There she investigates the destructive environmental practices required to obtain the lithium that powers the world's computers. It's a forceful illustration of how close these two places are in physical space yet how vastly far apart they are in wealth.

By grounding her analysis in such physical investigations, Crawford disposes of the euphemistic framing that artificial intelligence is simply efficient software running in "the cloud." Her close-up, vivid descriptions of the earth and labor AI is built on, and the deeply problematic histories behind it, make it impossible to continue speaking about the technology purely in the abstract.

In chapter four, for example, Crawford takes us on another trip-this one through time rather than space. To explain the history of the field's obsession with classification, she visits the Penn Museum in Philadelphia, where she stares at rows and rows of human skulls.

The skulls were collected by Samuel Morton, a 19th-century American craniologist, who believed it was possible to "objectively" divide them by their physical measurements into the five "races" of the world: African, Native American, Caucasian, Malay, and Mongolian. Crawford draws parallels between Morton's work and the modern AI systems that continue to classify the world into fixed categories.

These classifications are far from objective, she argues. They impose a social order, naturalize hierarchies, and magnify inequalities. Seen through this lens, AI can no longer be considered an objective or neutral technology.

In her 20-year career, Crawford has contended with the real-world consequences of large-scale data systems, machine learning, and artificial intelligence. In 2017, with Meredith Whittaker, she cofounded the research institute AI Now as one of the first organizations dedicated to studying the social implications of these technologies. She is also now a professor at USC Annenberg, in Los Angeles, and the inaugural visiting chair in AI and justice at the École Normale Supérieure in Paris, as well as a senior principal researcher at Microsoft Research.

Five years ago, Crawford says, she was still working to introduce the mere idea that data and AI were not neutral. Now the conversation has evolved, and AI ethics has blossomed into its own field. She hopes her book will help it mature even further.

I sat down with Crawford to talk about her book.
The following has been edited for length and clarity.
Why did you choose to do this book project, and what does it mean to you?

Crawford: So many of the books that have been written about artificial intelligence really just talk about very narrow technical achievements. And sometimes they write about the great men of AI, but that's really all we've had in terms of really contending with what artificial intelligence is.

I think it's produced this very skewed understanding of artificial intelligence as purely technical systems that are somehow objective and neutral, and-as Stuart Russell and Peter Norvig say in their textbook -as intelligent agents that make the best decision of any possible action.

I wanted to do something very different: to really understand how artificial intelligence is made in the broadest sense. This means looking at the natural resources that drive it, the energy that it consumes, the hidden labor all along the supply chain, and the vast amounts of data that are extracted from every platform and device that we use every day.

In doing that,, I wanted to really open up this understanding of AI as neither artificial nor intelligent. It's the opposite of artificial. It comes from the most material parts of the Earth's crust and from human bodies laboring, and from all of the artifacts that we produce and say and photograph every day. Neither is it intelligent. I think there's this great original sin in the field, where people assumed that computers are somehow like human brains and if we just train them like children, they will slowly grow into these supernatural beings.

That's something that I think is really problematic-that we've bought this idea of intelligence when in actual fact, we're just looking at forms of statistical analysis at scale that have as many problems as the data that it's given.

Was it immediately obvious to you that this is how people should be thinking about AI? Or was it a journey?

It's absolutely been a journey. I'd say one of the turning points for me was back in 2016, when I started a project called " Anatomy of an AI system " with Vladan Joler. We met at a conference specifically about voice-enabled AI, and we were trying to effectively draw what it takes to make an Amazon Echo work. What are the components? How does it extract data? What are the layers in the data pipeline?

We realized, well-actually, to understand that, you have to understand where the components come from. Where did the chips get produced? Where are the mines? Where does it get smelted? Where are the logistical and supply chain paths?

Finally, how do we trace the end of life of these devices? How do we look at where the e-waste tips are located in places like Malaysia and Ghana and Pakistan? What we ended up with was this very time-consuming two-year research project to really trace those material supply chains from cradle to grave.

When you start looking at AI systems on that bigger scale, and on that longer time horizon, you shift away from these very narrow accounts of "AI fairness" and "ethics" to saying: these are systems that produce profound and lasting geomorphic changes to our planet, as well as increase the forms of labor inequality that we already have in the world.

So that made me realize that I had to shift from an analysis of just one device, the Amazon Echo, to applying this sort of analytic to the entire industry. That to me was the big task, and that's why Atlas of AI took five years to write. There's such a need to actually see what these systems really cost us, because we so rarely do the work of actually understanding their true planetary implications.

The other thing I would say that's been a real inspiration is the growing field of scholars who are asking these bigger questions around labor, data, and inequality. Here I'm thinking of Ruha Benjamin, Safiya Noble, Mar Hicks, Julie Cohen, Meredith Broussard, Simone Brown-the list goes on. I see this as a contribution to that body of knowledge by bringing in perspectives that connect the environment, labor rights, and data protection.

You travel a lot throughout the book. Almost every chapter starts with you actually looking around at your surroundings. Why was this important to you?

It was a very conscious choice to ground an analysis of AI in specific places, to move away from these abstract "nowheres" of algorithmic space, where so many of the debates around machine learning happen. And hopefully it highlights the fact that when we don't do that, when we just talk about these "nowhere spaces" of algorithmic objectivity, that is also a political choice, and it has ramifications.

In terms of threading the locations together, this is really why I started thinking about this metaphor of an atlas, because atlases are unusual books. They're books that you can open up and look at the scale of an entire continent, or you can zoom in and look at a mountain range or a city. They give you these shifts in perspective and shifts in scale.

There's this lovely line that I use in the book from the physicist Ursula Franklin. She writes about how maps join together the known and the unknown in these methods of collective insight. So for me, it was really drawing on the knowledge that I had, but also thinking about the actual locations where AI is being constructed very literally from rocks and sand and oil.

What kind of feedback has the book received?

One of the things that I've been surprised by in the early responses is that people really feel like this kind of perspective was overdue. There's a moment of recognition that we need to have a different sort of conversation than the ones that we've been having over the last few years.

We've spent far too much time focusing on narrow tech fixes for AI systems and always centering technical responses and technical answers. Now we have to contend with the environmental footprint of the systems. We have to contend with the very real forms of labor exploitation that have been happening in the construction of these systems.

And we also are now starting to see the toxic legacy of what happens when you just rip out as much data off the internet as you can, and just call it ground truth. That kind of problematic framing of the world has produced so many harms, and as always, those harms have been felt most of all by communities who were already marginalized and not experiencing the benefits of those systems.

What do you hope people will start to do differently?

I hope it's going to be a lot harder to have these cul-de-sac conversations where terms like "ethics" and "AI for good" have been so completely denatured of any actual meaning. I hope it pulls aside the curtain and says, let's actually look at who's running the levers of these systems. That means shifting away from just focusing on things like ethical principles to talking about power.

How do we move away from this ethics framing?

If there's been a real trap in the tech sector for the last decade, it's that the theory of change has always centered engineering. It's always been, "If there's a problem, there's a tech fix for it." And only recently are we starting to see that broaden out to "Oh, well, if there's a problem, then regulation can fix it. Policymakers have a role."

But I think we need to broaden that out even further. We have to say also: Where are the civil society groups, where are the activists, where are the advocates who are addressing issues of climate justice, labor rights, data protection? How do we include them in these discussions? How do we include affected communities?

In other words, how do we make this a far deeper democratic conversation around how these systems are already influencing the lives of billions of people in primarily unaccountable ways that live outside of regulation and democratic oversight?

In that sense, this book is trying to de-center tech and starting to ask bigger questions around: What sort of world do we want to live in?

What sort of world do you want to live in? What kind of future do you dream of?

I want to see the groups that have been doing the really hard work of addressing questions like climate justice and labor rights draw together, and realize that these previously quite separate fronts for social change and racial justice have really shared concerns and a shared ground on which to coordinate and to organize.

Because we're looking at a really short time horizon here. We're dealing with a planet that's already under severe strain. We're looking at a profound concentration of power into extraordinarily few hands. You'd really have to go back to the early days of the railways to see another industry that is so concentrated, and now you could even say that tech has overtaken that.

So we have to contend with ways in which we can pluralize our societies and have greater forms of democratic accountability. And that is a collective-action problem. It's not an individual-choice problem. It's not like we choose the more ethical tech brand off the shelf. It's that we have to find ways to work together on these planetary-scale challenges.

Update: The description of the AI Now institute has been clarified.

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Author
Karen Hao

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Stop talking about AI ethics. It's time to talk about power.

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Skip to Content We need to acknowledge both the politics and the physical impact that AI has on the planet, says scholar Kate Crawford in her new book. At the turn of the 20th century, a German horse took Europe by storm.

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Amplify Nursing podcast with Dr. Teresa Brockie

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Amplify Nursing podcast with Dr. Teresa Brockie

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A member of the White Clay Nation, Dr. Brockie’s research focuses on achieving health equity through community-based interventions for the prevention of suicide, trauma, and adverse childhood experiences among vulnerable communities. We talk with Dr. Brockie about health inequity among indigenous populations, her crucial work in this area, and the importance of having diverse representation in the profession.

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Amplify Nursing: Season 3 Ep 01: Teresa Brockie

On this first episode of season 3 of the Amplify Nursing podcast, we talk with Dr. Teresa Brockie, an associate professor at Johns Hopkins University School of Nursing. A member of the White Clay Nation, Dr. Brockie's research focuses on achieving health equity through community-based interventions for the prevention of suicide, trauma, and adverse childhood experiences among vulnerable communities. We talk with Dr. Brockie about health inequity among indigenous populations, her crucial work in this area, and the importance of having diverse representation in the profession.

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Amplify Nursing: Season 3 Ep 01: Teresa Brockie - Health Podcast Network

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On this first episode of season 3 of the Amplify Nursing podcast, we talk with Dr. Teresa Brockie, an associate professor at Johns Hopkins University School of Nursing. A member of the White Clay Nation, Dr. Brockie's research focuses on achieving health equity through community-based interventions for the prevention of suicide, trauma, and adverse childhood experiences among vulnerable communities.

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Sean Michael Morris

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Are you there?

I recently found myself divorced, and back on the singles scene. It's a strange new world these days. The last time I was single, mind you, was at a time before the iPhone. Before apps. Before Instagram and Tik Tok. And before dating services like Tinder, eHarmony, and Grindr. As a 52-year-old gay man whose past partnerships were based on what could be described as a slow courtship, the notion of meeting someone just as quickly and on the same device as I can post a tweet on Twitter-well, it's novel. And not a little troubling in its novelty.

There are conversations you can have on these apps-conversations that can go any number of directions, depending on who is on the other side of the screen. In some apps, you get to know how close or how far away the person is that you're talking to. Sometimes, that's a matter of a few hundred feet, sometimes it's only an acknowledgement that you're both in the same city. That gives the interaction a sense of being visceral, of being physical and close. And yet the interaction remains (until it doesn't) fundamentally digital. A selection of still photographs, brief text exchanges, emojis. And there's never any telling what is happening behind the screen, for the person you're talking to. They could be having multiple conversations while also talking to you. They could be showing your conversation to a roommate. Or they could be making dinner, inattentive to your latest message. A pause between messages could mean anything. The longer the pause, the more likely the conversation will pass into oblivion.

As physical, visceral, sensory people, digital technology raises in us a primordial fear of the unknown. No matter how good we get at delivering ourselves via text, or how well we perfect our Zoom persona, and no matter how well we master all the apps, when our interactions are distant, they are subject to silences. And reaching out into that silence to say "Are you there?" feels vulnerable and risky.

In education too often, instead of being vulnerable and taking risks, we implement rules of engagement. We require students to turn their cameras on. We compel discussion by browbeating students with post once, reply twice-type rubrics for interaction. We implement remote proctoring software so that, no matter where we are or no matter where they are, we can ensure that students keep their heads down when taking tests. We find all manner of methods to guarantee they won't cheat.

If we did that when we were dating someone, it wouldn't go over very well.

Which is why part of the secret to humanising the digital is asking "Are you there?" and waiting, sometimes on tenterhooks, for the answer.

Critical Digital Pedagogy

Put briefly, critical digital pedagogy is an educational philosophy based on the work of Paulo Freire, first outlined in Pedagogy of the Oppressed, and on how that work encounters digital education. So as I go on, I'm going to freely interchange "critical pedagogy" and "critical digital pedagogy" because I want to recognise that the principle qualities of each are the same.

Critical pedagogy, and subsequently critical digital pedagogy, should not be understood as teaching methods. First and foremost, these are pedagogies focused on the understanding of power, agency, oppression, and how change happens. Best practices associated with critical pedagogies are vague, more in line with the notion of ethos rather than practice. Which is not to say that critical pedagogy is entirely theoretical. On the contrary, critical pedagogy-and critical digital pedagogy-are wholly concerned with action. It may seem that the pedagogist sits back and scans the horizon of education for new things to talk about, but that could not be farther from the truth. The critical pedagogist is one whose practice undergoes constant revision in the interests of creating greater and more effective means for students, and other humans, to thrive.

Chandra Mohanty has said that critical pedagogy "attempts to link knowledge, social responsibility, and collective struggle. And it does so by emphasizing the risks that education involves, the struggles for institutional change, and the strategies for challenging forms of domination." The necessity for education is key to the practices of critical pedagogy, but it's important to see that traditional educational models are often what the pedagogist resists. Paulo Freire specifically addresses what he calls the "banking model" of education. He writes in chapter two of Pedagogy of the Oppressed,

The teacher talks about reality as if it were motionless, static, compartmentalised, and predictable. Or else he expounds on a topic completely alien to the existential experience of the students. His task is to "fill" the students with the contents of his narration...

Narration (with the teacher as narrator) leads the students to memorise mechanically the narrated content. Worse, it turns them into "containers," into "receptacles" to be "filled" by the teacher. The more completely she fills the receptacles, the better a teacher she is. The more meekly the receptacles permit themselves to be filled, the better students they are.

Education thus becomes an act of depositing, in which students are the depositories and the teacher is the depositor.

Here what we are witnessing is Freire's critical analysis of the roles of teacher and student-roles which are perpetuated by both classroom methodologies and educational technologies today. He later goes on to advocate for a problem-posing education, one which actively involves the learner in a process of understanding the world around them.

In this case, Freire argues for a solution to the power relationship between teacher and student, suggesting that each become each: student-teachers and teacher-students.

One important thing to note, though, is that throughout his argument, Freire is not calling for the dismantling of schools, but the dismantling of the patterns of power in schools. Those relationships of power are the most interesting to the critical pedagogist, and to the critical digital pedagogist. Power both in terms of who is dealt it, and in terms of how it is wielded.

I want to return to the idea of silence and silences. Silences online are moments of relative powerlessness. Unless we create rules and punitive consequences for engagement, we cannot force a response faster than it will come. Here again, I'll compare how we behave toward someone we're chatting up on a dating app and students learning at a distance. While the quality of the communication is different, and the responsibility behind the engagement not at all the same, the very human uncertainty while waiting in silence for an answer can be very similar. Writing a discussion prompt or sending an email to a student and then waiting on a reply is, in this way, not so very different from waiting by the phone for someone to message you.

Silence, in the banking model of education, would most likely indicate either incomprehension or rebellion on the part of the student. I'm going to return to this shortly, but it bears mentioning now that there is no room for silence-other than obedient silence-in the banking model of education.

Silence has power and silence has vulnerability. That person maintaining the silence wields the power, and that person waiting on a response is subject to that power. Knowing that, critical pedagogy looks at the relationship between the silent person and the person listening for an answer for clues about agency, oppression, and what change might be needed to make that relationship more democratic.

And the answers aren't always what you might expect. Traditional teaching methods would do everything possible to remove the student's power to be silent, giving control of dialogue to the teacher. But critical pedagogy might reflect on the meaning of silence, the power that the listener can have, such that, just as Freire advocates for teacher-students and student-teachers, we might see a new configuration of power where silence and listening share something in their anticipation of the other.

I say all of this because the goals of critical pedagogy, and also critical digital pedagogy, are often mistaken as advocating for tearing everything down and starting over, burning down the institutions that wield power and building up something new in their place. What this assumption about critical pedagogies overlooks, though, is that burning down an institution is also an act of wielding power without regard for those who might suffer from its use. Taking power away is not the goal of critical pedagogy; rather, understanding and making democratic patterns of power is the goal.

The banking model of education can be dismantled without getting rid of the lecture. A teacher can remain at the front of the room and also empower students to grasp hold of their agency and take control of their learning. In fact, differential relationships of authority-those where both student and teacher do and do not have authority-provide the most fertile environment for agency.

Thinking in these more nuanced ways, in terms of critical digital pedagogy we can look at the banking model of education in a couple of ways. First, we can see it as Freire witnessed it: a teacher dispensing knowledge to empty-vessel students whose only job is to absorb the teacher's expertise. And that certainly happens often enough in digital learning. But we can also look at the banking model in terms of the technologies we use to deliver education at a distance.

Take for instance the learning management system. In " Reading the LMS against the Backdrop of Critical Pedagogy," I spend some time analysing the Canvas learning management system, or LMS, looking at how it reinforces the banking model of education. I write:

In some of my talks with leadership at Instructure in the early days of their Canvas LMS, they seemed very much in agreement with me about ideas like student agency, identity, empowerment, student-centred classrooms, and the like. They hoped that their LMS made room for teachers to adopt all kinds of pedagogies, including critical pedagogy. These were exciting discussions, and the first I'd heard of an educational technology company that was truly interested in education and not just technology.

However, in those discussions we were skipping upon the surface of the water. In order for an LMS-or any educational technology-to function, it must assume itself integral to the learning process, must operate as a determinant in education. The makers of Canvas couldn't look at their product as optional, nor could they build a container for learning that invited students to question the notion that learning can be contained.

In other words, the very existence of this particular educational technology obfuscates or entirely wipes out the opportunity for any but a banking model of teaching.

The technology itself dispenses information through its design; put another way, technology instructs the teacher how to teach. All digital technologies do this: tell us how to use them. Their designs are either arbitrary (why is a tweet 240 characters? why do we "swipe" right or left on dating apps?), or, if not arbitrary, they are derivative of other, similar technologies. Either way, we don't get to have any say in how they work.

Technologies are the teachers at the front of the room when it comes to digital education, and they are filling our own empty receptacles with instructions about how to interact in digital spaces. And we have no choice but to believe in their functionality, which stands in for expertise.

Over the past year, as we've all had to turn to remote and online teaching because of the pandemic, educational technologies have been adopted rapidly and without looking critically at how they impact teaching and learning. Most of us have literally had to take it on faith that these technologies would solve the problems that surprised us over a year ago, and even when they failed to do that, we've had to persevere.

One thing that has been a crucial factor in our struggles over the past year has been this concept of silence that I keep talking about. Of a lack of answer from the other side of the screen. And this is where the existential crisis for education in the pandemic arises. If students are meant to be the receptacles of the narration of education, if they are only "good students" insofar as they allow themselves to be filled by that narration, then what happens when educators are no longer witness to that exchange? This has been, honestly, the crisis for online learning since the beginning, and for correspondence education before that.

How do I know, asks the teacher, that students are learning if I can't see them? How do I know they are listening, or reading, or viewing my video lectures? And if they are not doing that, how can they be learning anything?

Taking a Different Approach

What the pandemic brought to the foreground of digital learning was not that there needed to be better tools for surveilling students, for checking up on them to be sure they were being good little receptacles-although there was a vigorous interest in those tools-but rather that we, as educators had no idea how to reach out across the distance to students we couldn't see. And even that the very idea of reaching across the distance imperilled our notions of how learning happens-how it must happen if it's to follow the rules of education.

As a response, then, many of us made more rules. Rules about turning on cameras. Rules about "attendance" in digital space. Rules about taking tests and rules about engaging in discussion. These rules utterly ignored the distance and its attendant silence, which was the greatest lesson we could have learned.

Because those of us who were able to bear through the distance and stand against the silence, discovered that students were not okay. We discovered that the real challenges facing education were not whether the rules were being followed or the receptacles being filled. We discovered that the real peril lie in:

Problems with accessibility and considerations of disability that are specific to online teaching and learning;

The way in which traditional teaching methods and approaches tend to gloss over trauma or ignore it completely;

The fact that so many college students are hungry or homeless while still trying to get good grades;

The general lack of good digital pedagogies that reinforce and hold up the human person and their needs;

The overall dearth of solid, meaningful professional development available to faculty-professional development that goes beyond the advice about putting images in your course and creating video lectures, and that really tries to tackle what it means to teach online.

And these revelations came from putting aside the need to surveil and replacing it with the need to check in. To ask "Are you there?" and listen to the silence, anticipating an answer.

What we've learned is that we need a different approach, one which, frankly, we haven't yet imagined. But one which doesn't require students to be the receptacles of the narration of education, that doesn't insist they are only "good students" insofar as they allow themselves to be filled by that narration. We need some way of teaching across distance, of teaching through the screen, that allows for students to capably live their lives while integrating their education into those lives.

I've often wondered what would happen if we switched the metaphor and made school the receptacle which should be filled by students? What would that do to power and agency?

One thing that I am often asked is the question of how. How do we do this humanising education thing? How do we learn to reach out across the silence, through the screen, and change the way we teach? So, despite my resistance to providing best practices, I have come up with a few that might be helpful going forward from where we are now.

But ultimately, my best advice for teaching online is: Stop thinking about being online. No learning happens online. It all happens in a real place somewhere, where there are hands and fingers, feet and toes, a breathing person with a heartbeat whose eyes blink more slowly when they think hard. Put space in your teaching, because there is space in your relationship to students. The immediacy of the classroom is no longer an affordance, so take the most advantage you can of the more gentle continuity that distance provides.

Also, don't believe the tools you are given. There is no technology that knows how to teach, or how to build a relationship. We have never coded for kindness or understanding or compassion or compromise, and those things are vital when establishing the connection between student and teacher. Students need to be more than faces on an app that we can swipe left or right and give them a grade.

And finally, I encourage you to think about how education itself is a technology that needs constant maintenance. We shouldn't have needed a pandemic to point out certain weaknesses or flaws in the system, and we shouldn't have needed a pandemic to remind us to humanise education. But now that we've learned these lessons, let's keep an eye on the machine, and perhaps as Henry David Thoreau might say, let our work be a counter friction to that machine. For students' sake, and for the sake of our own humanity.

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I recently found myself divorced, and back on the singles scene. It's a strange new world these days. The last time I was single, mind you, was at a time before the iPhone. Before apps. Before Instagram and Tik Tok.

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The Rise of Black Feminist Intellectual Thought and Political Activism in Perinatal Quality Improvement: A Righteous Rage about Racism, Resistance, Resilience, and Rigor

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The Rise of Black Feminist Intellectual Thought and Political Activism in Perinatal Quality Improvement: A Righteous Rage about Racism, Resistance, Resilience, and Rigor

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By Karen A. Scott

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Resource Guide: Creating Disability Justice Mutual Aid Fund

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Portraits by — and for — the trans and nonbinary community.

By Elly Belle P

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Candice. Photo: Salgu Wissmath

Yet Wissmath makes it clear that the series isn't solely about dysphoria. On the contrary, it's also about gender euphoria, which they also asked about when interviewing individuals for their portraits. "Certain clothing might really give you gender euphoria, but other clothing might cause gender dysphoria," they said, adding, "With this project, my goal isn't to focus only on unhappy feelings, but to focus on the feelings and experiences that have allowed people to understand their own identity."

Many of the scenes the photographer captured were especially personal in nature. Before taking the images, Wissmath interviewed each trans person about their gender identity, their experience with gender dysphoria, and what dysphoria means to them. Based on those conversations, together they would style a photo that would best represent their experience. "Sometimes we tried to illustrate a specific incident they shared with me, sometimes we just tried to show a general situation where they would often experience dysphoria, or sometimes we tried to represent a specific feeling," they say. All of the clothing and poses were intentionally selected to illustrate those experiences and bring each individual's feelings of gender dysphoria to life.

One of their favorite images in the series is the one of delfin. "delfin was the LGBT center director at Ohio University when I was in grad school and they were the first nonbinary professional I had ever met, so they were a big role model for me," Wissmath says. "delfin told me about this time they had to attend a black-tie event, and they shared what went through their head: Well, they said I had to wear a tie. They didn't say what I had to wear a tie with. Then they told me about this outfit they had worn to a wedding they were in: a button-up shirt and tie with a beautiful ball gown dress. So that's the outfit we picked for that photo."

Whether people see this project and feel affirmed or learn something new about their own identity, Wissmath wants their main audience, the queer community, to feel hopeful. Second to that, they want to show the general public more nuanced stories than what you find in mainstream media, which doesn't often present the full range of transness and the trans experience.

"While there is an increasing awareness of transgender identities, there is still a continued misunderstanding and lack of acceptance that contributes to high rates of suicide, discrimination, and barriers to health care in the trans community." Wissmath references that trans women of color - specifically Black trans women - continue to die at alarming rates, and that in 2020, at least 37 trans or gender nonconforming people were killed in the United States alone. In America, trans youth are twice as likely to attempt suicide compared to cisgender kids. The rise in violently anti-trans bills proposed in legislatures throughout the country - including HB1570 in Arkansas this week, which would essentially criminalize health care for trans people - has taken its toll on the community, too.

Showing instead of simply talking about these experiences is vital, because, as Wissmath notes, "individuals who experience gender dysphoria need to see themselves reflected in art and media." Through this project, they hope that trans and nonbinary people see a more specific and authentic representation of their own thoughts and feelings. "Our society still has a long way to go to fully understanding and accepting all forms of gender identity and expression across the gender spectrum."

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Candice. Photo: Salgu Wissmath Yet Wissmath makes it clear that the series isn't solely about dysphoria. On the contrary, it's also about gender euphoria, which they also asked about when interviewing individuals for their portraits.

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Deconstructing the evidence-based discourse in health sciences: truth, power and fascism

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Deconstructing the evidence-based discourse in health sciences: truth, power and fascism

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By Dave Holmes, Stuart J Murray, Amélie Perron and Geneviève Rail

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Holmes Murray Perron Rail 2006 - Deconstructing evidence-based discourse in health sciences-truth power and fascism.pdf

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The compounded burden of being a Black and disabled student during the age of COVID-19

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The compounded burden of being a Black and disabled student during the age of COVID-19

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By Syreeta L. Nolan

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When this pandemic started, I was a Black Disabled student living on campus with four roommates. Suddenly, I found myself living in that same apartment alone and in pain. Due to my chronic illnesses, including fibromyalgia, sciatica, and rotator cuff tears I require frequent treatment, including interventional pain management, acupuncture, and osteopathic manipulation. As the pandemic worsened and pain procedure suites were commandeered, I could no longer receive these interventions, and, predictably, my pain increased. With no other effective treatments available to me, I confronted the daunting realization that I faced many isolated, pain-riddled days.

Full-time virtual classes highlighted the now inaccessible resources and lack of community available to me as a Black, Disabled student on campus. However, in the midst of that loss, I gained perspective. I learned that asynchronous classes feel like binging 'Academic Netflix,' making it harder to remain engaged. I identified a preference for synchronous classes, where the teachers and students engage through real-time discussion and activities. I see now how staying on campus has made online learning easier due to the accommodations I receive in my dorm room like a sit to stand desk, ergonomic chair, and upright mouse. I also learned not being in the classroom environment increased accessibility to my bed to rest throughout the day.

In addition to these new learning experiences, I found myself, a Black student, confronted with continuing and pervasive systematic racism in America, embodied by the killings of George Floyd, Breonna Taylor and so many others. In a student government Zoom meeting, Black students were asked how faculty could be of support during the social unrest. On a 10 out of 10 pain day, I garnered the energy to join the call, and suggested that faculty reach out and check in with Disabled students. As I was speaking, two 'Zoom Bombers' infiltrated the meeting, calling me the 'n' word and spewing expletives, as other attendees responded with an initial shocked silence. In that moment, I felt a visceral connection to every ancestor who was ever called the 'n' word out of hate. As the Zoom room erupted into reactions ranging from despair to rage, I simply stated, 'I reject your words', placed myself on mute, and disengaged in order to preserve my already taxed energy reserves.

Following this incident, I directed my energy towards advocacy for Disabled students, especially those of color. The support of the university leadership and student government was remarkable. I met with members of campus leadership shortly after the Zoom incident, providing me with a safe space to be open and honest with them about my needs and those of other Disabled students following the incident. Student leadership reached out to apologize, which eventually led to my appointment as Underrepresented Student Officer for the University of California Student Association. In this role, I amplify and empower the voices of Disabled students, whose perspectives are often neglected. We are silent and unseen, especially among underrepresented and historically marginalized communities (URM). We are a minority within URM communities without dedicated diversity, scholarship, or mentorship programs, perpetuating continued inequality within diversity, equity and inclusion. This contributes to failures to address the needs of students with multiple marginalized identities- in my case, being both Black and Disabled.

The experiences of Disabled students who are also URMs have varied widely during the pandemic. Some live with family, struggling to keep up with peers, but supported by loved ones. These students may experience limited or unreliable computer or internet access, coupled with pre-existing lack of community, and poor awareness of available resources as a catalyst of powerlessness, complicating the already difficult ordeal of accessing services as a student with disabilities. Educational barriers must be addressed to increase support for accessibility by learning from these students' experiences. The feedback from these efforts could result in identifying new modalities of support for success, especially for Disabled students who are also from URM groups.

Being Black and Disabled results in a heightened risk of racist and ableist slurs and unjust killings along with increased disease burden of COVID-19, including magnified effects of health inequities, barriers to accessing COVID tests, and other resources in a timely manner, all contributing to an increased rate of mortality from infection among Black and Brown communities. Fear and delayed care-seeking may play a role in exacerbating these health disparities, given the history of racism and discrimination towards minorities in healthcare. It is clear that while COVID-19 and disabilities themselves do not discriminate on the basis of race, systemic racism, which leads to vast disparities in social determinants of health, causes both COVID-19 and chronic illnesses to disproportionately affect those from URM groups. Indeed, I avoid emergency rooms when my pain flares to avoid being called drug seeking because of my disability and my skin color. Public health and medical systems must work to create systems that support all Disabled individuals, including those from marginalized racial and ethnic groups.

We must enhance access to critical services, including healthcare access for diagnosis and treatment as well as state-sponsored social services, such as food stamps and housing assistance for Disabled students, especially those from URM communities. One critical service is Medicaid, known as Medi-Cal in California. Community health clinics have advocates for Medicaid, but such resources are not available on all college campuses. In 2020, my student health insurance plan covered 143 claims totaling $111,588.41. In the United States, wealth and employment status often determine whether or not one has health insurance and one's ability to afford co-pays, defined as the additional patient cost-sharing required by insurance companies for some health services. Without Medi-Cal, I would have been responsible for $4422.05 in co-pays as a student. Some parts of the world have a socialized medical system where all costs are covered for their care. URM communities in the United States face health inequities, increasing the burden of disability. Disabled students need to be made more aware of Medi-Cal and Medicaid supplemental insurance options. How many Disabled students are suffering under the weight of co-pays without being made aware of the benefits of Medicaid as a secondary insurance?

Disabled students chose their college not just for the school but also for their healthcare. I chose UCSD largely because of UCSD Health. However, I think that most colleges and universities don't realize that their health care system is a potential recruiting tool for Disabled students. Campus health systems must consider how they will support Disabled students. During this pandemic, it is much harder for Disabled students due to the increased risk of serious illness or death if they contract COVID-19. Access to telemedicine appointments must be expanded for Disabled students, especially for mental health, pain management, and rehabilitation services, during this pandemic. For communities without internet connectivity, government programs to improve WiFi and cellular networks along with distribution of free laptops will expand the reach of telemedicine during the pandemic and beyond.

The effects of intersectionality are evident, as minorities and persons with disabilities continue to be disproportionately affected by our pandemic. We must understand that the individual-level barriers of a white male will be different than those of a Black woman, even if they have similar disabilities or chronic illnesses. The process of self-acceptance is a critical consideration, as is awareness of identity-specific barriers that may lead to difficulty accepting help or accessing services. When my Fibromyalgia symptoms began in 2015, I was depressed, overwhelmed, and scared, as I had never before experienced relentless pain. I got through the bad moments by proactively committing each day to do what I can to make my quality of life better through eating healthy, staying as active as possible, and engaging in self-care. The diagnosis with a disability is a drastic change that requires considerable adjustment and psychological healing. It is critical that people, especially people of color, know that they are not alone in this and that healthcare and public health professionals address both physical and mental health.

Public health officials speak about COVID-19 prevention, but what happens if a student recovers from COVID-19 to live with chronic disabilities? Combining the access to mental health treatment, wellness activities, and medical care would aid with integration of the mind and the body that is necessary after such a disease plays havoc on one's mental and physical well-being. When I first saw a clinical psychologist to speak about the constant interplay of my emotions and pain, it was an unnatural conversation that always shifted back to my emotions in absence of the pain due to the psychologist's discomfort and lack of competency with chronic physical illness and disability. I was diagnosed with Fibromyalgia during an abusive marriage and in a way, it is both the worst and the best thing to come from that period of my life. The person I was then is gone, and I have grown to love the resilient, strong survivor that I am today who thrives in spite of the symptoms and barriers that I face. Nevertheless, the transition was difficult. My doctor recognized what I was dealing with, but a referral to pain psychology was severely delayed, as there was no integration of care. Likewise, the diagnosis of a post-COVID related disability may coincide with the loss of loved ones, increased isolation or other trauma; true healthcare integration has the power to bring together the mind and the body in how they move through the therapeutic process.

Supporting the mental health of those of us who are Disabled, such as access to health and rehabilitation psychology, leads to self-acceptance, which aids in self-advocacy to obtain the tools to be successful in college and life. We are never taught as Disabled students that our voices matter, nor how to reclaim our voices, as ableist attitudes have fostered an unspoken belief that we do not belong in higher education. Self-advocacy is critical for newly diagnosed students as they must be transparent with disability services and their care team about their needs. In higher education, disabilities are viewed as problems that require accommodations and not as a community of people who have a unique culture and identity. The educational system has a critical duty to us who identify as Disabled to close the achievement gap while amplifying the perspectives of people with disabilities. The Disabled community has faced a history of discrimination, eugenics, and erasure. This promotes a narrative of exclusion and pity, telling Disabled people they are incapable, and their voices don't matter, thus maintaining ableist systems. This is often exacerbated in the collegiate environment by obstacles in receiving accommodations needed to survive and not having a community we need to thrive.

In public health, the community and the culture of Disabled people should be amplified to give collegiate environments a model to follow. I celebrate who I am in the 'Crip' culture. It is this awareness that allows me to call for change. Supporting Disabled students is not just about matching a student's diagnosis to accommodations, but rather calls for a more holistic model to address housing and health disparities facing this population. This can be achieved through dedicated living and learning communities, Disability cultural centers and Offices of Health Advocacy and Support to connect them to resources they need to thrive. Additionally, peer advocates can help newly Disabled students with concerns ranging from adjustment to accommodations. The time is now to support Disabled students, especially those who are also URM. They need easy access to accommodations, widespread accessibility, and a community which enhances their ability to thrive, furthering their competency to complete their education, enter into their careers, and close the achievement gap. This is more important now than ever to close the gaps in supporting people with disabilities as we look to the survivors of the 'battle of COVID-19'. Once these people are off this 'battlefield', they will be left unknowingly to begin life with the scars of new disabilities. Our actions now will determine the support they will have in the future.

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The compounded burden of being a black and disabled student during the age of COVID-19

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When this pandemic started, I was a Black Disabled student living on campus with four roommates. Suddenly, I found myself living in that same apartment alone and in pain. Due to my chronic illnesses, including fibromyalgia, sciatica, and rotator cuff tears I require frequent treatment, including interventional pain management, acupuncture, and osteopathic manipulation.

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Co-founder of Health Professionals in Recovery, shares his lived experiences in a short video.

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Bill Kinkle built a successful career as a nurse but lost it all to opioid use disorder. Now he's using his experiences to help others.

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Black Mamas Matter Alliance Toolkits & Resources

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Black Mamas Matter Alliance Toolkits & Resources

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First released in June 2016, the toolkit was produced by the Center for Reproductive Rights in partnership with members of the Black Mamas Matter Alliance.

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The Black Mamas Matter toolkit is a resource for advocates who are concerned about the health and well-being of black women and girls. It takes a human rights based approach to maternal health, identifying the rights of pregnant and birthing parents and the corresponding role of government to ensure safe and respectful maternal health care for all. First released in June 2016, the toolkit was produced by the Center for Reproductive Rights in partnership with members of the Black Mamas Matter Alliance.

Download the Toolkit Now

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The Black Mamas Matter toolkit is a resource for advocates who are concerned about the health and well-being of black women and girls. It takes a human rights based approach to maternal health, identifying the rights of pregnant and birthing parents and the corresponding role of government to ensure safe and respectful maternal health care [...]

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Including the documentary film, Fire & Flood, featuring the lived experiences of queer, trans, Two-Spirit and gender-diverse communities of color in Puerto Rico and Northern California, navigating the impacts of climate change.

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Queer Ecojustice Project | Media | Education | Community

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Queer Ecojustice Project organizes media and education at the intersection of ecological justice and queer liberation.

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Alternatives to Surveillant Technologies and Pedagogies in Online Clinical Education

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Alternatives to Surveillant Technologies and Pedagogies in Online Clinical Education

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A collaboratively-written, open-access resource guide.

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"heal?" by atomicity is licensed under CC BY-NC-ND 2.0, Image Description: Photo of a brick wall painted light pink with scattered spackled paint in blue and purple and in dark purple near the center, the hand-painted word "heal?"

COLLABORATIVELY AUTHORED BY:
Rachel K. Walker, PhD, RN, FAAN, University of Massachusetts Amherst

Jess Dillard-Wright, PhD, MA, RN, CNM, Augusta University

Shelley Mitchell, BA, BSN, MS, RN, Austin Community College

Heather Mangino, MSN, RN, University of Saint Joseph

Jaimee Watts-Isley, DNP APRN, University of North Carolina

Anna Valdez, Ph.D., RN, PHN, CEN, CFRN, CNE, FAEN, FAADN, Sonoma State University

Em Rabelais, PhD, MBE, MS, MA, RN, University of Illinois Chicago

Raeann G LeBlanc, PhD, DNP, AGPCNP, CHPN, University of Massachusetts Amherst

Jocelyn C. Anderson, PhD, RN, SANE-A, Pennsylvania State University College of Nursing

This collaboratively-written, interdisciplinary resource guide was created for clinical educators and administrators as a companion to the original article, Surveillant #EdTech Harms Nursing Students, the Profession, and the Public, published on December 23, 2020 by Dr. Rachel Walker, Dr. Jessica Dillard-Wright, Dr. Em Rabelais, and Dr. Anna M. Valdez of the Nursing Mutual Aid Collective.

Clinical professions such as nursing, though framed in terms of values such as caring, inclusion, and social justice, have long histories of applying surveillance and unjust policing tactics in both classroom and clinical settings ( Bell, 2020a; Bell, 2020b; Dillard-Wright, 2019; Dillard-Wright, Hopkins Walsh, & Brown, 2020; Jeffers et al., 2020; Valderama-Wallace & Apeosa-Varano, 2019; Valderama-Wallace & Apeosa-Varano, 2020). Often the expectation and burden of transforming these harmful practices is unjustly placed directly on the persons being harmed, including learners and clinical educators marginalized within their professions and at large.

We acknowledge that clinical education programs are not homogeneous, and educators occupy the varying positionalities of power and privilege (even within the same institution). These differences in power and privilege may result in faculty who are unfamiliar with, or actively prevented from implementing alternatives to surveillant pedagogies and practices.

Advocating for meaningful, truly transformative curricular reforms is an act of courage and not without risk. This guide draws upon theory, research, and resources from multiple disciplines, including the emerging field of critical digital pedagogy, and was designed specifically to support such efforts.

We exhort faculty and administrators who occupy positionalities of greater power and privilege within their institutions to undertake the primary labor of transforming surveillant and oppressive practices and learning environments. Resist shifting this burden onto folks with less power in the system, such as learners (though listening to, believing, and centering their perspectives is critical).

The intention of this resource guide is not to shame or condemn individual faculty members or administrators for their decisions regarding surveillant #EdTech. We recognize the use of surveillant pedagogies is a profound structural challenge for the clinical professions - and therefore a challenge that demands structural solutions. Ultimately, violent tactics in clinical education will not be fully resolved until foundational institutional structures and oppressive cultures that lead us down this path of surveillance are eliminated ( Burton, Gilpin, & Draughon Moret, 2020). As long as clinical education programs such as nursing schools live and die by high stakes, computer-adaptive board examinations like the NCLEX, educators and administrators will mobilize this as a shield to deflect agency and culpability for the choice to purchase and implement surveillent #EdTech. This deflection creates the argument that surveillance tools are essential for clinical education. Instead, use of these tools creates an adversarial relationship with students, and causes moral injury for educators.

Transforming surveillant pedagogies alone will not solve the problems of oppression and injustice in clinical education, though ideas presented here may reduce some harms. As a corollary, educators are obligated to reflect on the streams of power and capital that flow from these kinds of technologies and practices, recognize our own agency, and imagine alternate possibilities for the future of clinical education and thus, the healing professions.

A table of Alternatives to Surveillant Pedagogies and Technologies in Online Education for Clinical Professions is included, starting on page 5:

https://docs.google.com/document/d/e/2PACX-1vSTfBviMaRnuFB8MgebWu4ofFmq6VRdUbQJiIacHRfRojgOhAQfNiFnjVR1iPQCcA/pub (or click on the image below)

Image of first page of electronic resource guide

INFOGRAPHICS:

Technology Is Not the Solution To Cheating, By Dr. Torrey Trust, UMASS Amherst College of Education, https://drive.google.com/file/d/1nY3YwHoq_W_RJcMdLxde_C4ERzFfEUST/view

Rethinking Teaching 2020: Enriching Remote, Online, Hyflex, Blended and In-Person Teaching for Fall 2020, By Dr. Torrey Trust, UMASS Amherst College of Education, https://drive.google.com/file/d/1fGZfTGOWu4vlH_bKnzn1i45i5kuAgh5M/view

Using Video to Assess Student Attention in Virtual Class Meetings, By Dr. Torrey Trust, UMASS Amherst College of Education, https://drive.google.com/file/d/1SbkMafUnixTfHCub3kBgnSeBCLpIUHL_/view

Designing Authentic Online Discussions, By Dr. Torrey Trust, UMASS Amherst College of Education, https://drive.google.com/file/d/1_kF_fnlYGshVIswICqJfttOEDnwzIYKa/view

HOW-TO GUIDES:

Replacing Surveillant Practices with More Meaningful Assessments, By Fred Zinn, UMASS Amherst College of Education, https://docs.google.com/document/d/1t-WLkPpZF__lPX_WSb7qV486Pc8SRda0FutisAJLOiU/edit?usp=sharing
Universal Design For Learning Principle of Engagement: Optimizing individual choice and autonomy, https://udlguidelines.cast.org/engagement/recruiting-interest/choice-autonomy Principle of Engagement: Minimizing threats and distractions, https://udlguidelines.cast.org/engagement/recruiting-interest/threats-distractions
Principle of Engagement: Optimizing relevance, value, and authenticity, https://udlguidelines.cast.org/engagement/recruiting-interest/relevance-value-authenticity

Principle of Action and Expression: Use multiple tools for construction and composition, https://udlguidelines.cast.org/action-expression/expression-communication/construction-composition

BOOKS:

Critical Digital Pedagogy: A Collection, Edited by Dr. Jesse Stommel, Dr. Chris Friend and Dr. Sean Michael Morris, https://hybridpedagogy.org/critical-digital-pedagogy/

Teaching To Transgress: Education as the Practice of Freedom, By bell hooks, https://www.routledge.com/Teaching-to-Transgress-Education-as-the-Practice-of-Freedom/hooks/p/book/9780415908085

Innovative Teaching Strategies in Nursing and Health-Related Professions, Edited by Martha Bradshaw, Beth Hultquist, and Debra Hagler

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Alternatives to Surveillant Pedagogies and Technologies in Online Education for Clinical...

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COLLABORATIVELY AUTHORED BY: Rachel K. Walker, PhD, RN, FAAN, University of Massachusetts Amherst Jess Dillard-Wright, PhD, MA, RN, CNM, Augusta University Shelley Mitchell, BA, BSN, MS, RN, Austin Community College Heather Mangino, MSN, RN, University of Saint Joseph Jaimee Watts-Isley, DNP APRN, University of North Carolina Anna Valdez, Ph.D., RN, PHN, CEN, CFRN, CNE, FAEN, FAADN, Sonoma State University Em Rabelais, PhD, MBE, MS, MA, RN, University of Illinois Chicago Raeann G LeBlanc, PhD, DNP, AGPCNP, CHPN, University of Massachusetts Amherst Jocelyn C.

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An open-access text "for data scientists seeking to learn how feminism can help them work toward justice, and for feminists who want to focus their efforts on the growing field of data science. But Data Feminism is about much more than gender. It is about power, about who has it and who doesn't, and about how those differentials of power can be challenged and changed."

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An open-access textbook on community-led practices to build the worlds we need, by Sasha Constanza-Chock

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An exploration of how design might be led by marginalized communities, dismantle structural inequality, and advance collective liberation and ecological survival.
What is the relationship between design, power, and social justice? "Design justice" is an approach to design that is led by marginalized communities and that aims expilcitly to challenge, rather than reproduce, structural inequalities. It has emerged from a growing community of designers in various fields who work closely with social movements and community-based organizations around the world.

This book explores the theory and practice of design justice, demonstrates how universalist design principles and practices erase certain groups of people-specifically, those who are intersectionally disadvantaged or multiply burdened under the matrix of domination (white supremacist heteropatriarchy, ableism, capitalism, and settler colonialism)-and invites readers to "build a better world, a world where many worlds fit; linked worlds of collective liberation and ecological sustainability." Along the way, the book documents a multitude of real-world community-led design practices, each grounded in a particular social movement. Design Justice goes beyond recent calls for design for good, user-centered design, and employment diversity in the technology and design professions; it connects design to larger struggles for collective liberation and ecological survival.
Chapters of Design Justice will be made OA on a monthly basis.

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An exploration of how design might be led by marginalized communities, dismantle structural inequality, and advance collective liberation and ecological survival. What is the relationship between design, power, and social justice? "Design justice" is an approach to design that is led by marginalized communities and that aims expilcitly to challenge, rather than reproduce, structural inequalities.

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An open-access e-textbook from the Alliance of Nurses for Healthy Environments

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The Alliance of Nurses for Healthy Environments (ANHE) is delighted to announce the publication of Environmental Health in Nursing 3rd Edition - an update to our award-winning open access textbook for nurses and other health professionals.

The third edition represents the latest in environmental health nursing research, education, advocacy, and practice. There were so many excellent chapters that had missed the deadline for inclusion in the second edition, we quickly updated the second edition so that all of you could read them as well. Updated and new chapters include the climate justice chapter, PFAS, and a chapter on climate change and children's health.

We hope you find this e-text useful to expand your own knowledge, educate future and current nurses, and address environmental health.

Download as a PDF

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E-Textbook - Environmental Health in Nursing

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The Alliance of Nurses for Healthy Environments (ANHE) is delighted to announce the publication of Environmental Health in Nursing 3rd Edition - an update to our award-winning open access textbook for nurses and other health professionals. The third edition represents the latest in environmental health nursing research, education, advocacy, and practice.

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A blog maintained by poet Bettina Judd, author of PATIENT. poems.

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In PATIENT., a researcher lives with the ghosts of enslaved women after they visit her hospital bed.

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Towards Abandoning the Masters Tools: The Politics of a Universal Nursing Identity

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Towards Abandoning the Masters Tools: The Politics of a Universal Nursing Identity

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By Blythe Bell

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Blythe Bell - Towards abandoning the masters tools- The politics of a universal nursing identity.pdf

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Social Justice Is a Dream: Tensions & Contradictions in Nursing Education

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Social Justice Is a Dream: Tensions & Contradictions in Nursing Education

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By Claire Valderama-Wallace & Ester Carolina Apesoa-Varano

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Valderama-Wallace Apesoa-Varano 2019 Social justice is a dream-Tensions and contradictions in nursing education.pdf

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Dismantling Racism: Characteristics of White Supremacy Culture

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Dismantling Racism: Characteristics of White Supremacy Culture

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A useful framework for considering how white supremacy manifests in organizations and nursing practices. From Characteristics of White Supremacy Culture by Tema Okun, dRworks.

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On the Media: The Weaponization of white Womanhood

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On the Media: The Weaponization of white Womanhood

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The Weaponization of White Womanhood | On the Media | WNYC Studios

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White women have power that comes from perceived weakness - and that can make it a hard kind of power to talk about.

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The impact of whiteness on the education of nurses

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The impact of whiteness on the education of nurses

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By Susan M. Bonini and Cheryl E. Matias

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Highlights

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Racism in the profession of nursing has produced an over representation of Whites.

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Whiteness exerts its influence on nursing education and practice

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People of Color have difficulty gaining admission into nursing programs

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Diversity in the nursing workforce is key to closing the gaps in health inequities.

Abstract

Racism affects the nursing profession by routinely producing an over representation of Whites. Since the Sullivan Commission on Diversity in the Healthcare Workforce (Sullivan, 2004) reported that people of Color (POC) found it difficult to gain admission into health professions schools, regulatory agencies have made recommendations to the nursing profession to create program strategies to increase diversity. Many strategies were implemented to recruit, educate, retain, and graduate POC from university-based nursing programs, but these have had little effect on diversity in nursing. Simply put, these strategies were only band-aids attempting to heal a much larger issue within the profession precisely because programs do not address the underlying problem: the pervasiveness of whiteness. Whiteness has been normalized and influential in the manifestation of racism in nursing practice. The pervasiveness of whiteness has resulted in nursing education being seen through a White lens (Scammell & Olumide, 2011). This paper explores whiteness and its effect on the profession of nursing and nursing education.

View full text

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The impact of Whiteness on the education of nurses

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Racism in the profession of nursing has produced an over representation of Whites. * Whiteness exerts its influence on nursing education and practice * People of Color have difficulty gaining admission into nursing programs * Diversity in the nursing workforce is key to closing the gaps in health inequities.

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We Have Never Been Nurses: Nursing in the Anthropocene, Undoing the Capitalocene

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We Have Never Been Nurses: Nursing in the Anthropocene, Undoing the Capitalocene

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By Jessica Dillard-Wright, MA, MSN, RN, CNM;Jane Hopkins Walsh, MSN, PNP-BC, RN;Brandon Blaine Brown, MSN, RN-BC, CNL

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Dillard-Wright Hopkins Walsh Blaine Brown 2020 - We have never been nurses -Nursing in the anthropocene undoing the capitalocene.pdf

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Lived Experiences Panel

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What is the IMPACT AD/ADRD Lived Experience Panel?

The Lived Experience Panel reflects a coordinated effort between the National Institute on Aging (NIA) IMPACT Collaboratory and the Alzheimer's Association.

The Lived Experience Panel is a diverse community of people living with dementia or caring for people living with dementia. The panel is composed of 12 people reflecting various perspectives, including:

Four people with a documented diagnosis of early stage Alzheimer's, Mild Cognitive Impairment (MCI) or other early stage dementia.

Four care partners/caregivers representing his or her own experience caring for an individual living with dementia.

Four care partners/caregivers who can represent the perspective of one or more individuals living with middle or late stage dementia or who are deceased.

How does the Lived Experience Panel work?

Members of the Lived Experience Panel participate in quarterly 90-minute conference calls to discuss issues relevant to the development and conduct of research studies for people living with Alzheimer's disease or other dementias. Participants listen to presentations and share thoughts, experiences, and perspectives about living with dementia and contribute to conversations related to improving accessibility and relevance of research efforts. Members of the Lived Experience Panel are asked to share their opinions about what research studies should focus on based on their own experience with Alzheimer's or other dementias.

Areas of focus include:

Identification of research topic priorities

Considerations about study design to make participation easier for people living with dementia and their family members and care partners

Design considerations, such as selection of meaningful outcomes measures and methods of data collection

Commitment:

A one-year commitment is requested. Participation includes:

Training regarding the goals of the Lived Experience Panel

Four 90-minute meetings (one every 3 months)

Review of pre-meeting materials

Evaluation of each meeting soon after it has completed

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The Lived Experience Panel reflects a coordinated effort between the National Institute on Aging (NIA) IMPACT Collaboratory and the Alzheimer's Association. The Lived Experience Panel is a diverse community of people living with dementia or caring for people living with dementia.

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Sex workers want to talk to you about parenting

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Sex workers want to talk to you about parenting

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IRL

Mary Emily O'Hara

Everyone has an opinion on sex workers. Victims or businesspeople? Exploited or empowered? Through all the noise of opinion over Amnesty International's vote in support of decriminalization, it can be hard to remember that there's one group of people who truly know what they're talking about: sex workers themselves.

A newly formed collective is working to spotlight the intersection of parenting and sex work with a blog and forthcoming book called Red Umbrella Babies.

The collective behind the project represents a diverse overview of the people who make up the sex-worker community: women and men of all races, transgender people, and a range from working-class sex workers to high-end call girls. The thing they all have common? Most of them have kids.

The sex workers behind Red Umbrella Babies are still gathering submissions for the anthology they hope to publish next year, but in the meantime, they are already challenging the media to provide fairer representation of sex workers as parents. For example, when NPR's Terry Gross aired a July 21 interview with sex worker turned film star Mya Taylor ( Tangerine), Gross introduced the show with a content warning, saying, "Before I go any further you should know that parts of our conversation will be about sex workers and may not be appropriate for children."

In response, Red Umbrella Babies collective member PJ Starr wrote a letter to NPR, stating that such parental warnings are stigmatizing to the children of sex workers and also perpetuate a stereotype that sex workers are inherently unsafe around children.

Starr also filmed a video response to those who opposed the Amnesty International decision. The video features a sex worker named J who tells opponents of decriminalization, in no uncertain terms, to "mind your own fucking business."

I spoke to two other collective members about the unique struggles and joys of parenting while working in the sex industry. Kini Seawright and Juliana Piccillo come from different worlds, but they're united by the Red Umbrella Babies project.

Seawright is a black ex-inmate who was sentenced to three years in prison after stealing $125 worth of baby formula. She started the Seawright Prison Justice Project after her 26-year-old son was murdered, also in prison. The anthology project is the first time Seawright has worked as an editor, which she called "challenging and exciting."

"People who work 9-5 jobs, who are exhausted and can't necessarily afford all the things for their kids, don't want to hear about how easy and joyful it can be to parent as a sex worker."

She also pointed out that doing sex work can actually provide a lot of parents with the time and freedom they need to be there for their children. "You have the daytime with your kids because you usually work at night when they're in bed," Seawright said. "You have time to make them dinner, to be there for them when they get out of school and help them with their homework."

One other (rare) thing that Seawright and Piccillo have in common: both are publicly "out" as sex workers who have kids. Of this, Seawright says she's "not really concerned [with] what people think."

Piccillo is a white mother of two, a filmmaker ( I Was a Teenage Prostitute), and a former journalist who wrote for the Associated Press. She's currently completing another documentary (Whores on Film) about the depiction of sex workers in Hollywood films. But her public-facing persona as a sex worker didn't come without a price.

"Every sex worker I know who's a parent and has gone through a divorce or separation has had their ex try to use that to take the kids away," Piccillo said over the phone. She said her second husband used her job in a bid to try and get full custody of her children. "He did surveillance and submitted a dossier to the police department and our custody judge, not just to have my custody taken away but to have me put in jail."

A lot of sex workers have been through the horror of custody battles, said Piccillo, whether with ex-partners, courts, or child protective services-all primarily because of their jobs.

"You go to court and you're fighting for custody of your child, and they're throwing around half naked pictures of you from your website. It's irrelevant to your parenting of your child, and you have to stand there and defend yourself to this judge."

blogger Tanaha Koontz is just one former sex worker who lost her kids in a Florida court battle. On the blog, she writes about being pushed into prostitution by her jobless and abusive husband, who then used prostitution to successfully argue for full custody. During the multiyear struggle of trying to get her kids back, Koontz has been raising money for a documentary about sex workers who lose child custody because of their jobs.

Through talking to members of the Red Umbrella Babies collective, it becomes painfully clear that, when it comes to being trusted around children, there are strong parallels between sex workers and LGBT people. Until recently, openly gay men were banned from being leaders in the Boy Scouts and a long-held stereotype painted LGBT folks as "sexual deviants" who are unsafe around children.

"There was this idea that [LGBT folks] were all perverts, like if you could be gay you could do anything," said Piccillo of the gay parallel. "You step outside of this idea of a very restricted sexuality, and [people] think anything goes. I don't think gay people can have their children away by virtue of being gay anymore, but sex workers can have their children taken away by virtue of being sex workers." (It's worth noting that practitioners of BDSM have historically had the same child custody struggles, too.)

But losing custody isn't the only danger to the children of sex workers. With laws across the U.S. criminalizing prostitution, parents are frequently separated from their children by virtue of arrest and imprisonment. Seawright recalled seeing a lot of women in prison for sex-work charges and most were women of color. "I think they're wrongfully convicted by going to jail," said Seawright. "They haven't broke no laws by me. That's their body to do what they want with it."

But it would be inaccurate to claim that all sex worker parents are constantly suffering and afraid. The truth is, according to Piccillo, many are better off because of the financial stability, flexible schedules, and accessibility to their children that working in the industry affords. When the collective began reading the essays submitted for the Red Umbrella Babies anthology, they encountered a few that told stories of desperate single moms who found their way into sex work. But, Piccillo explained, they saw more stories about how doing sex work transformed parents' lives-and the lives of their children-for the better.

"We see people talking about how well [sex work] worked for them as a single parent: This let my kid study abroad or get horseback riding lessons, this allowed me to afford therapy for myself which is important as a single mom. A lot of the stories talk about how great parenting was as a sex worker," Piccillo said.

Of course, not every sex worker in the anthology or in the movement for sex workers' rights is happy with their work. Some have been exploited, criminalized, separated from their kids. But just as many, it seems, wanted to express the relief-and the opportunity-that sex work brought to their lives.

The issue of how to present sex work to a mainstream audience is complicated, Piccillo said. After decades of stigma and criminalization, and myths about all sex workers being drug addicts with no self-esteem, someone had to put forth the image of the "happy hooker with a Ph. D." just to balance out the negativity. But stereotypes persist, and Piccillo had some thoughts on what might be at the root of anti-sex worker discrimination.

Jealousy may be a factor, given that many sex workers-depending on economic status and the market-can make more money in far fewer hours than peers with minimum wage or even middle- and higher-income jobs. "People who work 9-5 jobs, who are exhausted and can't necessarily afford all the things for their kids, don't necessarily want to hear about how easy and joyful it can be to parent as a sex worker," Piccillo said. "I was able to provide for my kids and be with them all the time, so I was happy about it."

Gender roles and even gender discrimination can also be at the root of people's concerns about sex workers. Women are believed to make up the vast majority of sex workers-and women making good money on their own terms might just be too much for some people. "Part of what people don't like is that we're not playing by the rules. And we're getting rewarded for breaking those rules," said Piccillo. "And people don't like seeing women in particular make so much money when we aren't marrying some schmuck and cooking him pork chops. People much prefer stories where we're suffering."
Illustration by Max Fleishman

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Sex worker parents come together for new book

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IRL Mary Emily O'Hara Everyone has an opinion on sex workers. Victims or businesspeople? Exploited or empowered? Through all the noise of opinion over Amnesty International's vote in support of decriminalization, it can be hard to remember that there's one group of people who truly know what they're talking about: sex workers themselves.

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Trans Care Webs: A Review of Hil Malatino's Trans Care

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Trans Care Webs: A Review of Hil Malatino's Trans Care

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By Liz Montegary on Nursing Clio

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Trans Care Webs: A Review of Hil Malatino's Trans Care

By Liz Montegary *

Hil Malatino's asks a seemingly simple question: What does care look like in trans lives? To be clear, Malatino isn't asking how trans people are cared for. This is not a book about institutionalized forms of care or about how to make clinics, schools, social services, or public programs more trans-inclusive. Rather, this is a book about how trans people care for one another - via formal mutual aid projects, as part of informal collectives, and through what Malatino calls a "t4t [trans4trans] praxis of love." Trans Care tries to find new ways of talking about care work and care ethics that can do justice to the communal care practices that sustain trans people on a day-to-day basis.

Trans Care begins and ends with the US medical-industrial complex. As Malatino writes, medicine is the "nexus of care most commonly associated with transness," even as gender-confirming care remains "economically inaccessible, geographically dispersed, and rigorously gatekept." What interests Malatino in this project, however, are the networks of care that trans people have created in response to medical refusals and institutionalized transphobia more broadly. Trans folks create "arts of living that make [their lives] possible" in a world that, at its best, is only "thinly accommodating" and that, more often, is just "devastatingly hostile." Malatino is, of course, referring to the ubiquity of explicitly transphobic policies and the ever-present threat of anti-trans violence, but their focus in this book lies on less overt forms of oppression. Malatino takes great pains to show just how brutal everyday life can be for trans people in the United States as they make their way through a relentlessly cis-centric society. In the process, Trans Care brings into focus the creative and collaborative care practices that enable folks to endure these routine and, often, dehumanizing injustices.

The opening chapter, "Surviving Trans Antagonism," offers an excellent introduction to the theme of "trans care" and to the pace and style of the book. Malatino covers a lot of ground in a mere eighteen pages: starting with reflections on the aftercare they expected to receive from friends following their upcoming top surgery; then shifting into an engagement with queer disability justice approaches to care labor; eventually moving into a critique of the callously alarmist tone of the 2018 New York Times article "'Transgender' Could Be Defined Out of Existence under Trump Administration"; and, finally, wrapping up with a discussion of why Fall Out Boy's misogynistically emo music might appeal to transmasculine youth. In each chapter, Malatino deftly weaves together cultural analyses, personal experiences, and theoretical ruminations. Published as part of the University of Minnesota Press's "Forerunners: Ideas First" series, Trans Care is barely eighty pages. Malatino embraced the spirit of the series and wrote a short book "where intense analysis, questioning, and speculation take the lead." The result: a quick read that leaves you wanting more from Malatino.

This first chapter borrows Leah Lakshmi Piepzna-Samarasinha's crip-femme-anarchist concept of a "care web" to describe the expansive networks of love, friendship, and solidarity on which trans lives depend. Care webs are a strategy for sharing the physical and emotional labor required to care for one another in the face of a shrinking welfare state and dwindling community resources. To avoid becoming alienating or exploitative, these webs must be cultivated intentionally. This is not easy. People must learn to communicate clearly about what they need and what they can offer while simultaneously unlearning the shame that they've been socialized to feel when asking for help. Malatino dedicates the rest of the book to exploring how trans care webs are woven, how they tear or shred, and how they are repaired and rewoven. Notably, Malatino leaves questions of disability behind in this chapter, not considering the particular experiences of sick or disabled trans folks, nor exploring the connections between trans and disability justice.

The next two chapters of Trans Care focus on the limits of existing frameworks for theorizing care labor. The second chapter, "Beyond Burnout," looks at the way we talk about the toll this work takes on the people performing it. Malatino begins with the "voluntary gender work" that most (if not all) trans people habitually do - the largely unpaid labor of sharing referrals and resources, counseling partners and families (and other trans people's partners and families), and educating the lawyers, social workers, and medical professionals who are supposed to be supporting them. This form of care work is exhausting in ways that Malatino feels cannot be captured by the concept of "burnout." This concept comes from organizational psychology (a field primarily concerned with employee productivity) and assumes a hierarchical, nonreciprocal relationship between helpers and recipients. In this scenario, care only travels in one direction: from the professional helper to the dependent recipient. Helpers experience "burnout" when they become fatigued from the work of providing care to recipients. Such a framework cannot make sense of the horizontal exchanges and interdependent relationships that make up care webs - especially "when marginalized subjects engage in the work of making each other's lives more possible." What we need, Malatino insists, is a way of talking about the collective exhaustion experienced when the care work one performs isn't just for others but is crucial to their own and their community's survival.

The third chapter, "Theorizing Trans Care," extends the critique of existing frameworks to feminist theories of care labor. Malatino calls out feminists for presuming a binary gendered division of labor, focusing on women's domestic work, and locating that work within the heteronormative home. If we want to fully understand trans care webs, then we need to start with a "different set of locations and relations." Malatino stresses the importance of paying attention to the places where trans care actually happens (e.g., bars, streets, clinics, classrooms, community centers) and accounting for the labor involved in piecing together familial or domestic units (i.e., the units that feminist thinkers often assume already exist). Moreover, Trans Care encourages us to abandon the fantasy that it is somehow possible to equalize care work. Detailed record keeping of who did what for whom does not guarantee a "fairer" exchange of labor. Instead, Malatino calls for a framework that recognizes how different people have different kinds of needs at different points in times and how a person's capacity for caregiving will fluctuate over the course of their daily lives and across their lifetime. Malatino's critical interventions in these two chapters resonate beyond the realm of trans care and have implications for any racially or economically vulnerable community struggling for liberation. That said, I would've appreciated further commentary on the racialization of care labor and the dynamics of cross-class and multiracial trans care webs.

In the fourth chapter, "Something Other than Trancestors," Malatino shifts gears to reflect on the care ethics guiding their archival research. How can justice be done to the everyday trans lives that flash up in the historical record - through the stories shared in community newsletters or the anonymized case studies written by doctors? Malatino acknowledges the "sense of connection" they've felt with the minor figures they've encountered through their research, but they caution against mistaking a feeling of familiarity for evidence of sameness; these pasts might "slant rhyme" with trans presents, but they shouldn't be claimed as a trancestorial "lineage." Still, Malatino knows these earlier instances of trans worldmaking matter. Trans lives today are, in many ways, possible precisely because of the paths forged by earlier generations. The traces of trans-ness that haunt the archives can serve as a source of hope, a "resource for resilience," and even "a roadmap for another way of being." Feeling an obligation to these "ghosts," Malatino urges researchers to tell the story of these lives with the utmost of care. Tending to the archive can become a gesture of "transtemporal solidarity" and a form of intergenerational trans care.

Finally, the fifth chapter, "Trans Care within and against the Medical Industrial Complex," circles back to medical care. Malatino considers the now common practice of trans people launching crowdfunding campaigns to cover the costs of gender-confirming surgeries. They begin by situating social media and crowdfunding efforts within a longer history of trans organizing and information sharing: from support groups to print newsletters to the early internet's listservs and newsgroups. But Malatino also draws attention to recent studies showing that young white binary trans men with significant social media capital tend to benefit the most from crowdfunding. Hinging medical care on what amounts to a popularity contest risks reproducing dominant hierarchies of "deservingness" - where already privileged folks enjoy a disproportionate degree of access and support. This is not to suggest that an ethical trans care praxis must turn its back on crowdfunding. Rather, Malatino imagines a "dual movement" where crowdfunding is accompanied by critiques of these imperfect workarounds and demands for a radical redistribution of health and wellness resources.

Yet, even as Malatino recognizes the urgent need for concrete institutional reforms, Trans Care puts forth a vision for trans politics that has little interest in mainstream LGBT agendas or calls for expanded rights and recognition. Within the vacuums of care created by institutional abandonment, trans survival and flourishing have come to depend on the weaving of elaborate webs of care and connection. What Malatino wants readers to understand is that these trans care praxes are a kind of prefigurative politics - a way of "building the new world in the shell of the old." With this political vision in mind, Trans Care lays the conceptual groundwork needed for devising strategies to render trans care webs even more resilient and perhaps a little easier to sustain.

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Trans Care Webs: A Review of Hil Malatino's Trans Care

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By Liz Montegary * Hil Malatino's asks a seemingly simple question: What does care look like in trans lives? To be clear, Malatino isn't asking how trans people are cared for. This is not a book about institutionalized forms of care or about how to make clinics, schools, social services, or public programs more trans-inclusive.

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Critical history complicating popular narratives of nursing, from Nursing Clio

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When I suggested the "Beyond Florence" series to the team at Nursing Clio, I didn't set out to "cancel" Florence Nightingale. In my introductory essay, I described the environment that gave rise to my concerns about how nursing history was being represented in both the year of COVID-19 and the International Year of the Nurse...

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Tech & Social Justice Initiatives and Other Resources

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Tech & Social Justice Initiatives and Other Resources

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From Ruha Benjamin, author of Race After Technology: Abolitionist Tools for the New Jim Code

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TECH AND SOCIAL JUSTICE INITIATIVES

JUST DATA Lab: Brings together activists, artists, educators, and researchers to develop a humanistic approach to data conception, production, and circulation through workshops, open access courses, and other collaborations. The aim is to rethink and retool data for justice.

FAIRNESS, ACCOUNTABILITY, AND TRANSPARENCY INITIATIVES

STATEMENTS

INSTITUTES AND CENTERS

MORE

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JUST DATA Lab : Brings together activists, artists, educators, and researchers to develop a humanistic approach to data conception, production, and circulation through workshops, open access courses, and other collaborations. The aim is to rethink and retool data for justice.

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Health Ethics Book Club: A Public Syllabus

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Health Ethics Book Club: A Public Syllabus

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white Feminism & Nursing
Curated by Em Rabelais (they/themme, fae/femme)

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On Labor Day 1978, during a routine self-exam, Audre Lorde detected a lump in her right breast. From that initial discovery, to the eventual harrowing diagnosis of malignancy and the ensuing mastectomy, The Cancer Journals bears witness to Lorde's radical reenvisioning of self, body, and society through the experience of illness, fear, pain, anger, and dawning clarity.

First published in 1980, The Cancer Journals moves between the intimate, unfiltered inner dialogue of journal entries like this one, from March 1st, 1979: "It is such an effort to find decent food in this place, not to just give up and eat the old poison"; and a reading of breast cancer and the industry that surrounds it through the lens of cultural criticism.

That is to say, Lorde moves deftly between an emphasis upon private survival and collective determination. If it was ever uncertain, this volume makes clear that even at its most intimate and vulnerable, Lorde's work is a literature of conscience and revolution.

After her mastectomy, Lorde chose never to hide the fact of her missing breast. Repeatedly, she refused to wear the "wad of lambswool pressed into a pale pink breast-shaped pad" pushed upon her by nurses and medical counselors. And repeatedly, she was scolded for posing a threat to cancer patient "morale."

Lorde's response to this attitude-like her response to the challenges encountered throughout her life-begins in anger and ends in insight. In galvanizing and crystalline prose, she insists:

When Moishe Dayan, the Prime Minister of Israel, stands up in front of parliament or on TV with an eyepatch over his empty eye socket, nobody tells him to go get a glass eye, or that he is bad for the morale of the office. The world sees him as a warrior with an honorable wound, and a loss of a piece of himself which he has marked, and mourned, and moved beyond. And if you have trouble dealing with Moishe Dayan's empty eye socket, everyone recognizes that it is your problem to solve, not his.

Well, women with breast cancer are warriors, also. I have been to war, and still am. So has every woman who had had one or both breasts amputated because of the cancer that is becoming the primary physical scourge of our time. For me, my scars are an honorable reminder that I may be a casualty in the cosmic war against radiation, animal fat, air pollution, McDonald's hamburgers and Red Dye No. 2, but the fight is still going on, and I am still a part of it.

The Cancer Journals is many things. It is a source of comfort and encouragement for those of us living with the specter of breast cancer. It is also an invitation to compassion, fury, reflection, and action for all of us living in a world ravaged by myriad forms of violence, shot through by so many reminders of mortality. Reading these pages now, early in the year 2020, I am keenly aware that the threats Lorde defines-physical and psychic violence against bodies Black, female, queer, and otherwise marginalized-have not been vanquished.

On the contrary, we've seen these very same sources of annihilation, and these very same forces of invisibility, leveraged against a widening circle of outsiders. In light of this, I am inclined to regard The Cancer Journals as a guide to survival for the 21st-century body and soul.

In a journal entry from December 1978, Lorde asks, "What is there possibly left for us to be afraid of, after we have dealt face to face with death and not embraced it? Once I accept the existence of dying, as a life process, who can ever have power over me again?"
According to Lorde, poems don't just deliver truth, they nudge something already alive within us into consciousness.
With her survivor's mind, she interrogates the private implications of illness, the body, and mortality while also aligning her private me with a collective us. Confronted by stakes of life and death, I'm not sure how many writers-or how many human psyches-could make the leap from personal survival to the survival and flourishing of the collective. But Lorde could and she did.

If anything, the questions and urgencies driving her work before her diagnosis-How do we muster the faith, courage, and will to keep living and fighting? What does it mean to claim for ourselves a sense of wholeness and visibility when the world insists on us being hidden or disguised?-are catalyzed by her private, subjective journey through illness and recovery.

One of my earliest encounters with Lorde was through her 1977 essay, "Poetry Is Not a Luxury." I recognized as familiar, and claimed as true, her description of poetry as a form of "illumination." According to Lorde, poems don't just deliver truth, they nudge something already alive within us into consciousness: "for it is through poetry that we give name to those ideas which are-until the poem-nameless and formless, about to be birthed, but already felt."

Lorde's view of poetry and the imagination clarified my own inclination to disappear, at times, into my own head. I wasn't merely daydreaming or escaping from life, I was tapping into places "ancient and hidden" within myself. I was drawing upon "a vital necessity of our existence." I still believe this to be the case.

And of course there is the world of Lorde's poems. Poems that minister to fear while stirring the warrior within. Poems of exquisite tenderness and vulnerability that speak to us as if to a new lover, announcing:

my body
writes into your flesh
the poem
you make of me.

(from "Recreation")

And poems of powerful woman-fury that promise action, revolution:

If you make me stone
I will bruise you.

(from "Journeystones I-XI")

Poems whose purpose is to shake us awake, and summon us to take part in the saving of our culture and ourselves.

It would surely be a failure on my part not to acknowledge, and underscore, the driving force of anger in Lorde's work, which she herself describes as "the anger of exclusion, of unquestioned privilege, of racial distortions, of silence, ill-use, stereotyping, defensiveness, misnaming, betrayal, and co-optation" (from "The Uses of Anger: Women Responding to Racism").

Of course anger, in the internet age, is ubiquitous. We rant at our opponents. We shout them down and clap them back. Doing so appeases us in the instant, though it does nothing to resolve the problems at the heart of our unrest. And so it is immensely valuable to witness Lorde, even in the throes of illness, modeling anger as a dynamic process, a source of growth and change.

The Cancer Journals is a road map to Lorde's remarkable journey, an invitation to take part in the battle for all of our lives.

__________________________________
Excerpted from The Cancer Journals by Audre Lorde. Used with the permission of the publisher, Penguin Classics. Foreword copyright © 2020 by Tracy K. Smith.

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How Audre Lorde's Experience of Breast Cancer Fortified Her Revolutionary Politics

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On Labor Day 1978, during a routine self-exam, Audre Lorde detected a lump in her right breast. From that initial discovery, to the eventual harrowing diagnosis of malignancy and the ensuing mastectomy, The Cancer Journals bears witness to Lorde's radical reenvisioning of self, body, and society through the experience of illness, fear, pain, anger, and dawning clarity.

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The Care Manifesto: The Politics of Interdependence

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The Care Manifesto: The Politics of Interdependence

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The Care Manifesto puts care at the heart of the debates of our current crisis: from intimate care-childcare, healthcare, elder care-to care for the natural world. We live in a world where carelessness reigns, but it does not have to be this way.

The Care Manifesto puts forth a vision for a truly caring world. The authors want to reimagine the role of care in our everyday lives, making it the organising principle in every dimension and at every scale of life. We are all dependent on each other, and only by nurturing these interdependencies can we cultivate a world in which each and every one of us can not only live but thrive.

The Care Manifesto demands that we must put care at the heart of the state and the economy. A caring government must promote collective joy, not the satisfaction of individual desire. This means the transformation of how we organise work through co-operatives, localism and nationalisation. It proposes the expansion of our understanding of kinship for a more 'promiscuous care'. It calls for caring places through the reclamation of public space, to make a more convivial city. It sets out an agenda for the environment, most urgent of all, putting care at the centre of our relationship to the natural world.

Reviews

Read all 10 reviews

The Care Manifesto is a radiant invitation to transform our economy and society, a roadmap for how we can emerge from overlapping crises and weave a new social fabric. The ethic of universal care is an antidote to the spiralling carelessness that our current system shows towards people and the planet. The authors understand that care is not a commodity: it's a practice, a core value, and an organizing principle on which a new politics can and must be built.

Naomi Klein, author of On Fire

Finally a 'care manifesto' that shows how powerful caring can and should be in changing global practices and institutions and in transforming our world! No longer a private concern nor the exclusive preoccupation of moralists speculating about the essential feminine, care is given by this text in the form of a bracing critique of neo-liberal profit-making. The Care Manifesto charts a path toward the transformation of kinship, the gendered division of labor, ecological activism, and secures the principles of interdependence that should guide progressive transnational institutions. The Care Collective writes with a compelling clarity, a capacity for reflection in the midst of urgent times, and remind us that care brings with it a complex history and a promising future. As they note, among the meanings of the Old English caru, are care, concern, anxiety, sorrow, grief, trouble - all terms that resonate with our times. Care implicates our lives in each others lives, mapping and animating a politics of promise for our times.

Judith Butler, author of The Force of Nonviolence

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The Care Manifesto puts care at the heart of the debates of our current crisis: from intimate care-childcare, healthcare, elder care-to care for the natural world. We live in a world where carelessness reigns, but it does not have to be this way.The Care Manifesto puts forth a vision for a truly caring world.

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By Ruha Benjamin. Abolitionist tools for the new Jim Code.

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Race After Technology (Polity) cuts through tech-industry hype to understand how emerging technologies can reinforce white supremacy and deepen social inequity. Benjamin argues that automation has the potential to hide, speed, and even deepen discrimination, while appearing neutral and even benevole

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Policing Without the Police: Race, Technology and the New Jim Code

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Week of Action

Have thoughts on the new AACN Essentials? Share them here!

It's been a year - join a free, therapist-led virtual support circle for nurses at noon EST on May 6th.

This safe space to help process grief and loss is a place where the capes can come off and compartmentalization can come down. Gift yourself an hour where you don't need to hold it all together. During nurses' week, enter a space to feel your shoulders drop and your breath connect with your heart.

Pre-registration required: https://forms.gle/BMbVNMcH2JQo3B4x5

On-going support beyond nurses week may also be offered if the group desires.

Sponsored by: PEAC Institute (Twitter, IG, FB), Nurses You Should Know (Twitter, IG, FB), & Mayo Clinic

NTC and NMA Solidarity Statement for Protection of Transgender and Non-binary Lives

We as nurses and members of The Nursology Theory Collective and Nursing Mutual Aid emphatically condemn and denounce HB 1570, a bill passed by the AK General Assembly on March 30, 2021, and signed into law on April 6, 2021, which bars access to safe health care for transgender and non-binary minors, one of many anti-transgender youth legislation bills that are currently being considered and/or codified into law in many other states including in South Dakota, Georgia, Texas, Mississippi, and Tennessee. According to the American Civil Liberties Union (ACLU), 28 states are currently reviewing over 60 bills to restrict the rights of transgender people. Current bills can be found on the ACLU anti-transgender bill tracker here. The Arkansas bill is the most restrictive to date and blocks any person under 18 years of age from accessing gender-affirming care including puberty blockers and gender-affirming hormone therapy (GAHT), an oppressive structural barrier that puts the lives of transgender youth in serious danger and prevents health care providers from providing protective, affirming, and supportive health care.

(read the entire statement and sign here)

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Calls to Action for Health and Liberation

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Week of Action Join us. Share your email here and we will be in touch. Have thoughts on the new AACN Essentials? Share them here! It's been a year - join a free, therapist-led virtual support circle for nurses at noon EST on May 6th. This safe space to help process grief and loss is...

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#NMA2020 Inaugural Twitter Conference Archived Presentations

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#NMA2020 Inaugural Twitter Conference Archived Presentations

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From April 2020, 12 hours, 75 presentations centering knowledge to nurse our communities

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Here's the Program!

To view archived presentations & Tweets from #NMA2020, go here.
Click here for a PDF of the Presenter Line-Up
https://drive.google.com/file/d/14C94DM8Y30Hg-CXHBcqML3fprZHIIzGQ/view?usp=sharing
Scroll down this page to see this info as well! Click here for Speaker Bios & Abstracts
https://drive.google.com/file/d/1e6nWauMt9btuBYiK_kcxTagqmyQRZ-a-/view?usp=sharing

You can view short videos announcing almost all of our upcoming presenters on this page.
Click here to view a post-conference update & to fill out an evaluation.

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#NMA2020 Twitter Conference Final Program - NursingMutualAid

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To view archived presentations & Tweets from #NMA2020, go here. Click here for a PDF of the Presenter Line-Up https://drive.google.com/file/d/14C94DM8Y30Hg-CXHBcqML3fprZHIIzGQ/view?usp=sharing Scroll down this page to see this info as well! Click here for Speaker Bios & Abstracts https://drive.google.com/file/d/1e6nWauMt9btuBYiK_kcxTagqmyQRZ-a-/view?usp=sharing You can view short videos announcing almost all of our upcoming presenters on this page.

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Gender-affirming care offers a model for all health care

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Gender-affirming care offers a model for all health care

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By Dallas Ducar of Transhealth Northampton

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As a transgender health provider, I've been shocked by the endless barriers that exist for patients seeking to transition. For cisgender individuals, hormone replacement or even puberty blockers are easily accessible and have been used to treat precocious puberty, and hormone replacement therapy has been beneficial for numerous endocrinological, cardiovascular conditions. Transgender people, however, are burdened with paperwork, psychiatric assessments, and insurance pre-authorizations. Cisgender people in power - politicians, clinicians, administrators, academics, and insurance company executives - have traditionally created systems that reduce access to quality gender-affirming care.

As a result, transgender people have been locked out of American society, its norms, its power, its resources. Frequently, politicians argue as to whether transgender Americans shouldexist. But while they play cruel politics with people's lives, there is a quiet revolution below the surface that shows attitudes arechanging.

Transgender people are gaining prominence - from leading roles in Hollywood to senior appointees in the federal government. Those changes are being felt by the next generation of youth, who now identify as transgender in record numbers.

Systems must be built that are dedicated to advancing gender-affirming care, and institutionsmust be createdthat are inclusive by design and sustain this movement.

Gender-affirming health care for transgender people is not a scientific argument; it's a moral argument. Sara and I pleaded to her treatment team for this simple right to be recognized. This eventually was debated and agreed to, but by this time it was too late, she had discharged herself to the street without access to care.

In a country that recognizes that "all are created equal," trans rights must be recognized as human rights, including a right to health care that treats them as they are. This means continuing the trend toward integrated and holistic health care systems that don't pathologize people. It means a system that helps parents understand and support their trans children, one that brings them together. It means having a doctor who understands Sara.

We need systems that center transgender voices, not cisgender individuals arguing about transgender rights. Systems that hire gender-diverse individuals and widen the pipeline into health care. Systems that would have hired and supported Sara, and where health care will become an act of liberation.

Some politicians have dystopian fantasies about a "trans agenda," where we supposedly force boys into dresses, and girls out of them. This misses the truth and beauty of gender-affirming care that affords each human being the freedom to be who they are, and parents the rare insight to better connect with their children. Such care is a rebuke to those who tell others how they need to act and behave. It instead says, "We value you for who you are."

On May 4, Transhealth Northampton is opening a clinic to solve these problems from the ground up. It will be the first standalone trans medical and mental health care organization in the nation. The first to be led by the trans community and for the trans community. The first in a rural landscape. The first to place funding behind clinical care research, education, and advocacy.

We need people dedicated to this at the front line of care. Gender-affirming care requires staff wholly dedicated to noticing new ways in which health care can be liberating.

The victories that lie ahead, big or small, will not be about trans rights specifically but about advancing human rights. These victories will extend far beyond our community. Gender-affirming care offers a model for all of health care, one that is patient-centered and based on the human story.It's time to create a system that includes people like "Sara" and show America what health care can be.

Dallas Ducar is the founding CEO of Transhealth Northampton.

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Gender-affirming care offers a model for all of health care - The Boston Globe

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As a transgender health provider, I've been shocked by the endless barriers that exist for patients seeking to transition. For cisgender individuals, hormone replacement or even puberty blockers are easily accessible and have been used to treat precocious puberty, and hormone replacement therapy has been beneficial for numerous endocrinological, cardiovascular conditions.

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52 Weeks in the Life of a Community Health Center Nurse

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52 Weeks in the Life of a Community Health Center Nurse

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Shared by Wanda Montalvo

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52 Weeks in the Life of a Community Health Center Nurse.pdf

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Nurses should oppose police violence and unjust policing in health care

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Nurses should oppose police violence and unjust policing in health care

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Corresponding author Kristen R. Choi

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Nurses should oppose police violence and unjust policing in health care.pdf

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A Transdisciplinary Conceptual Framework of Contextualized Resilience for Reducing Adverse Birth Outcomes

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A Transdisciplinary Conceptual Framework of Contextualized Resilience for Reducing Adverse Birth Outcomes

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By Tijen Sumbul, Solaire Spellen, Monica R. McLemore

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Abstract

Research in preterm birth has focused on the disparate outcomes for Black, Hispanic, and Latina women as compared with White women. However, research studies have not focused on centering these women in frameworks that discuss how resilience is embodied. This article is a presentation of our transdisciplinary contextual framework of resilience, building on work that centers Black, Hispanic, and Latina women, as well as historical oppression and trauma resilience frameworks developed by transcultural psychiatry, psychology, public health, anthropology, medicine, nursing, sociology, and social work. To develop the model, we reviewed 115 articles and books (1977-2019), which were then evaluated and synthesized to develop a transdisciplinary framework of contextualized resilience to enable a better understanding of the complex interplay of medical and social conditions influencing preterm birth. The framework includes multiple ecological layers that cross the individual, familial and intimate, community, structural, policy and law, and hegemonic domains.

Introduction

"Helplessness and isolation are the core experiences of trauma. Power and reconnection are the core experiences of recovery" ( Herman, 2015).

Embodiment of contemporary and historical trauma has been shown to influence both disease and adverse birth outcomes for Black women ( Prather et al., 2018; Prather, Fuller, Marshall, & Jeffries, 2016; Sealy-Jefferson et al., 2016; Williams & Mohammed, 2013). Exposure to structural violence and threats in the form of discrimination and racism can be embodied as a higher allostatic load, or cumulative "wear and tear" on the body ( Lu et al., 2010), which can result in weathering, an increased susceptibility of disease ( Geronimus, Hicken, Keene, & Bound, 2006; Williams & Mohammed, 2013) and poorer reproductive health outcomes among Black women ( Collins et al., 2004; Nuru-Jeter et al., 2009; Prather et al., 2018; Prather et al., 2016).

Hispanic and Latina women in the United States have been shown to experience birth outcomes similar to White women, even while experiencing more socioeconomic disparities, buffered in part by strong social support systems ( Campos et al., 2008; Hoggatt, Flores, Solorio, Wilhelm, & Ritz, 2012). The "Latina Paradox" has been refuted by past researchers, with researchers reporting foreign-born Latinas have stronger social supports that result in better birth outcomes. While U.S.-born Latinas were more likely to have lower birth weight babies and moderate increases in preterm birth as they become more acculturated ( Campos et al., 2008; Flores, Simonsen, Manuck, Dyer, & Turok, 2012; Hoggatt et al., 2012).

Resilience is a temporal, multilevel processes that varies from context to context-individual, familial, community, local, structural, political, and historical-it involves many trajectories and often actions, inactions, and acts of resistance that are not always positive or advantageous to the individual. To this purpose, we are defining resilience as a strengths-based processes that is impacted by structural violence and historical oppression, including how the intersection of race, class, gender identity, sexuality, and varied abilities are shaped by institutional and social power differences. We define resilience as not only indicating a forward positive trajectory but representing a process of "harnessing key resources to sustain well-being" ( Panter-Brick, 2014) in which political economies, access to power, cultural norms, and expectations are influenced by structural vulnerabilities, historical oppression and the ecological layers and environments of the individual, family, and community.

It is important to note throughout this article that the original terminology used by the cited authors will be maintained; however, ecosocial context encompasses ecosocial theory ( Krieger, 2001, 2012) and ecosystematic approaches ( Burnette & Figley, 2016) and perspectives. In addition, other elements related to our presented contextualized framework will include gendered roles and structural vulnerability, and will focus particular attention to the ways in which women of color survive, manage, thrive, transcend, and heal.

Contextualized Historical Resilience Framework Development

Historically, few research studies have focused on centering Black, Hispanic, and Latina women in conceptual models that describe resilience. The Preconception Stress and Resilience Pathways (PSRP) model, developed by the National Institutes of Health Community Child Health Network, identified both stress and resilience along various ecological levels while focusing on strengths-based processes among women in low resourced communities ( Ramey et al., 2015). The PSRP model provides a simplistic framework for how everyday resilience works on six ecological levels to impact healthy birth outcomes. The model was National Institutes of Health (NIH) funded and was community engaged and developed; however, this model heavily relies on individual factors, while also attempting to assess social and community resources and the psychological stress caused by discrimination and racism ( Ramey et al., 2015). The PSRP model is limited in its approach because it does not place individuals in the context of historical oppression as related to historical racism, oppression and trauma, structural vulnerabilities, and gendered roles and constraints. To address the need for a strengths-based and woman-centered resilience framework and the limited research surrounding the adverse birth outcomes for Black, Hispanic, and Latina women, we developed a preconceptual contextualized resilience model. To address these limitations, this article presents the results of a comprehensive scoping literature review of resilience and our preconceptual model that incorporates existing theories and new concepts from transdisciplinary works to inform and support how resilience is embodied. This preconceptual model supplemented historical oppression and trauma resilience frameworks that have been developed in the fields of transcultural psychiatry, psychology, public health, anthropology, medicine, nursing, and social work ( Burnette & Figley, 2016; Fast & Collin-Vézina, 2010; Hinds & Haase, 2011; Kirmayer et al., 2011 Panter-Brick, 2014, 2015; Panter-Brick & Eggerman, 2017).

A secondary focus of this article is to discuss how the study findings can be applied to better understand the strength-based, dynamic resilience enacted in the everyday lives of women of color, specifically Black, Hispanic, and Latina women in relation to reducing adverse birth outcomes and improving healthy birth outcomes. Although we have borrowed and learned from the extensive previous work on resilience frameworks focused on Native American and Indigenous peoples, we have not focused on Native women's birthing outcomes, as given the context of European colonization and resulting historical oppression Native and Indigenous authors must first do a resilience analysis. While keeping the focus on centered Black, Hispanic, and Latina women within an ecologic context, women are seen as enacting their resilience through action and praxis. Expanding on the work of Bourdieu (1977), we transitioned from an agency/structure binary construct for how resilience is lived and sought to instead understand the processes of resilience as dynamic and in constant flux over time. Furthermore, resilience centers the individual as both influential and influenced within the contextual situations and circumstances managed daily ( Bourdieu, 1977; Kirmayer et al., 2009; Paulle, 2003).

Analytic and Preconceptual Model Development

The preconceptual model that we developed was based on ecological models in public health, social work, and sociology. We then used the theories, frameworks, and concepts gleamed from the scoping literature review ( Kastner et al., 2012). We investigated how resilience interacts within and across ecological layers, and how it is manifested and expressed in the everyday lives of women. The focus on analysis began with an examination of current views of resilience across disciplines while seeking to understand theoretically how issues of power, the legacy of historical oppression, and structural vulnerabilities affects women's lives.

The framework of historical oppression includes historical and contemporary experience of both normalized and internalized oppression, including the experience of inequities, subjection, and structural violence. Historical oppression encompasses an examination of how structural violence and gendered roles intersect to uniquely impact the lives of women ( Burnette, 2015; Burnette & Figley, 2016). Structural vulnerability is an individual's or group's experience of being at risk for adverse health outcomes through their interactions with "socioeconomic, political, and cultural/normative hierarchies" ( Bourgois et al., 2017, p. 3). Embodiment can be understood as to how stressors, inequities, symbolic, and/or literal insults are held, housed, and experienced in the self, as well as how wellness, belonging, and love are experienced ( hooks, 2001; Scheper-Hughes & Lock, 1987; Walters et al., 2011).

Capacity is an overarching term defined as individual characteristics and traits that increase the ability to overcome and experience trauma and hardship without negative outcomes and/or while experiencing growth and can involve support networks and community ( Bonanno, Romero, & Klein, 2015; Kirmayer et al., 2009; Masten, 2001). Capacity changes based on access to power and power dynamics across and within the layers of our ecological framework. Entitlement is a sense of belonging and worthiness that is inherent in the intimate level of how we construct our value, and right to exist compared with the world around us. Entitlement, as we define it, can be profoundly damaged and altered by experienced and embodied trauma, and consequently, healed or buffered by belonging and attunement ( Van der Kolk, 2014). Capacity includes a sense of coherence, the belief that the world and one's existence in it, is logical and consistent ( Antonovsky, 1993), whereby entitlement is our term developed to expand upon and add to a "sense of coherence" ( Antonovsky, 1993; A. Y. Davis, Barat, & West, 2016; Fanon, 1961/1965; Kirmayer et al., 2009; Masten, 2001; Popova, 2015). In addition, an emphasis was added on historical and contemporary power dynamics and how individuals interact, both proactive and, reactively, within inequitable power constraints (see Table 1).

Key Concepts for Contextual Resilience Framework.

Method

A scoping review of the literature was conducted from 2016 to 2019 to support the development of the contextual framework ( Kastner et al., 2012). Search terms in PubMed, JSTOR, Antro Source, Science Direct, Google Scholar, included resilience, resilience and trauma, resilience and women of color, resistance, resistance and Black/African American women, resistance and Hispanic and Latina women, resilience and community, embodiment, preterm birth, adverse birth outcomes, structural violence, communities of color, and women of color. One hundred and fifteen articles from peer reviewed journals and 10 books met inclusion criteria, based on the quality assessment tool, QATSDD ( Fenton, Lauckner, & Gilbert, 2015). Research articles were limited to those that met inclusion criteria. Inclusion criteria were (a) written in English; (b) study outcomes were related to resilience; (c) study outcomes needed to include but were not limited to birth related outcomes; (d) studies that described resilience in Black/African American, Hispanic/Latina women, and communities of color in North America; (e) Articles in the initial search were not limited by age range of participants, but special focus was given to childbearing years. Exclusion criteria were studies that described (a) war-related trauma and resilience; (b) sports-related resilience; (c) studies that exclusively defined resilience as only individual choices, traits, or chronic characteristics; and (d) studies of resilience that only consider trauma or adversity within a singularly adverse event such as 9/11. For the purposes of this review, historical oppressions ( Burnette, 2015; Burnette & Figley, 2016) and structural vulnerabilities ( Bourgois et al., 2017; Quesada, Hart, & Bourgois, 2011) were included as potential stressors that contribute to adverse birth outcomes (see Supplementary Figure S1).

Results

The results of the scoping literature review resulted in major threads from which themes were incorporated into our initial preconceptual model to develop our final contextualized resilience framework ( Supplemental Figure S2). Five major themes were determined from the resulting connecting literature and include, (a) embodiment via biosocial links and biophysiological mechanisms to stress, discrimination, and adverse conditions that increase inflammation, higher allostatic load, and multiple responses that can lead to adverse health and birth outcomes for Black, Hispanic, and Latina women; (b) capacity via access to personal and social supports, socioemotional knowledge, and access to resources and types of capital within various contexts; (c) Entitlement and understanding of one's own worth and belonging in the world based on a sense of safety, control, and attunement with others; (d) Resistance as a transformative mechanism to create better birthing outcomes via improved equity in communities and groups that have been historically discriminated against; and (e) Both historical oppression and structural vulnerability as important contextual reoccurring themes that provide the sociopolitical foundation for our ecological layers and are interwoven within each theme above.

Our contextual resilience framework was designed by integrating the five themes above into our preconceptual model, which consists of six ecological layers. The initial label for each layer represents our ecologically focused preconceptual model, whereas the gleamed corresponding contextual fields and resilience themes are represented via labels we have given them in parentheses after the initial ecological layer ( Supplemental Figure 1). The six layers of our framework represent (a) individual (capacity); (b) familial, intimate, and friends (entitlement); (c) community and collective culture (resistance); (d) structural and institutional (structural vulnerability and reformation); (e) policy (historical oppression and manifesting); and (f) hegemonic discourse (embodiment and transformation) areas. Within the interacting ecological layers as a backdrop, we identified resilience as a strength-based processes, praxis, and symbolic action or belief that women use as a means of claiming sovereignty over themselves ( Supplemental Figure 1).

Our contextualized resilience framework is presented and described in order of the innermost circle to the surrounding overlapping layers. The Individual layer at the center should be understood as moving through, influenced by, and influencing all overlapping layers in the framework.

Discussion of Results

The five primary theme findings were synthesized to develop our concept of a multilayered contextualized resilience framework. The conceptual framework of contextualized resilience presented here was created to better understand how resilience works via both lived processes and symbolically for women of color, specifically Black, Hispanic, and Latina women to create better birth outcomes. Our framework was purposively developed using transdisciplinarity, as transdisciplinarity is achieved when a group develops an overarching framework that includes but transcends individual disciplines ( Adler & Stewart, 2010). The resulting framework will be vetted and informed by Black, Hispanic, and Latina women based on their personal and community experiences. That said, we also intend our framework of contextualized resilience to expand on existing conceptual transdisciplinary knowledge and offer a starting point of theoretical discussion regarding how an ecological, critically aware, women of color centered resilience framework can be further constructed. A table of strategies to increase resilience was developed from the literature reviewed, and can be expanded through future community involvement and research (see Supplemental table S3).

Layer 1-Capacity

The first resilience layer of the framework is described through the lens of individual capacity and internal abilities. The individual in the framework has been placed at the center and is represented through arrows that move within and throughout the overlapping layers of the framework, indicative of the resilient making praxis of the individual and the field within symbolic and collective bodies in which individual interacts ( Bourdieu, 1977). Social networks and supports have also been factored into the likelihood of an individual to display resilient behavior ( Dunkel Schetter, 2011; Dunkel Schetter & Dolbier, 2011; Dunkel Schetter et al., 2013; Ungar, 2008, 2011a; Ungar, Brown, Liebenberg, & Othman, 2007). We choose capacity as the descriptor to delineate the traits that represent resilience of the self. Although traits such as self-esteem, mastery, self-regulation, positivity, and other coping skills can no doubt build resilience in many environments, centering resilience in an individual's personality or characteristics takes away from understanding how the ecological and social environments influence how individuals shift and negotiate resources as a process of resilience ( Hobfoll, 2014). The primary focus on individual traits and capacity is based on a Eurocentric, dominant culture and western value-laden lens, and can fail to provide a deep understanding of how Black, Hispanic, and Latina women build strength and support in their lives ( Burnette & Figley, 2016; Kirmayer et al., 2011; Ungar, 2011a).

Layer 2-Entitlement

The second layer of entitlement is aligned with family, intimates, and friends. Entitlement includes a sense of coherence, the belief that the world and one's existence in it, is logical and consistent ( Antonovsky, 1993). Entitlement is an essential part of resistance resources where a sense of coherence includes (a) comprehensibility: belief that the world is comprehensible and ordered; (b) manageability: belief that one has the skill, ability, support/help, or resources to face challenges; (c) meaningfulness: belief that life is worthwhile and has purpose. In terms of understanding resilience for Black, Hispanic, and Latina women, we include an important fourth additional element, the sense that one has the right to exist-which is not contested, denied, or ignored in the lived context of other layers in the contextual framework. This addition is important to understand in the context of symbolic violence ( Bourdieu, 1977) and vulnerability via limited opportunities and the racist, classist, and gendered assaults experienced in everyday life ( Michau, Horn, Bank, Dutt, & Zimmerman, 2015). This sense of entitlement is inherent in the intimate level of how we construct our value and right to exist compared with the world around us ( Popova, 2015).

Entitlement involves the processes and symbolic concept of finding belonging, love, and solace in intimate, familial, and friend relationships, while also experiencing a sense of continuity and a right to essential life, belonging ( Antonovsky, 1993), and a notion of self-worth. Women experience and affirm their worth and identities through building relationships which provide belonging through a sense of coherence, which helps to manage a chaotic world ( Bourdieu, 1977; Eriksson, 2017). Family and friends also provide connections to community relationships and supports for women ( Campos et al., 2008). Researched foreign-born and U.S.-born pregnant Latinas benefited from higher levels of social supports via familialism compared with their non-Latina White counterparts ( Campos et al., 2008). Social supports were related to higher birth weights for foreign-born Latinas, as compared with their U.S.-born Latinas and European American counterparts ( Campos et al., 2008). Close relationships build resilience by reflecting back self-esteem and self-love for Black, Hispanic, and Latina women ( hooks, 2001).

Reshaping and struggling against cultural scripts, such as gender roles, stereotypes, and other representations, allows women the movement to create authentic forms of love, solace, and belonging in relationships ( S. Davis, 2014; Mullings, 1997, 2002; Ross & Solinger, 2017).Sociopolitical contexts and economic forces heavily influence gendered roles and cultural scripts. Migration, poverty, and cultural expectations can combine to create gender inequities. Research of Mexican-origin immigrant women in the United States found that gender inequity and, subsequently, reproductive health behaviors linked with unequal distribution of labor at home, family levels of stability, and socioeconomic disparities. Although cultural norms influenced gendered roles, those roles were also influenced by migration patterns and resulting educational and economic opportunities for women ( Coleman-Minahan, 2017).

Black, Hispanic, and Latina women use known forms of cultural capital from their own histories and cultures as well as "dominant" White middle-class culture ( Bourdieu, 1977; Yosso, 2005) to actively build resources through negotiating and navigating community support systems and socioeconomic environments ( Panter-Brick, 2014, 2015; Ungar, 2011b) even among social fields and contexts in which resources have been historically restricted. In terms of birthing experiences, Black, Hispanic, and Latina women manage the sense of chaos that is a consequence of historical oppressions and structural violence by creating order and a sense of meaning via the agency of loving relationships with their own bodies, future children, lovers, and close family members ( hooks, 2001; Mullings, 1997, 2002; Mullings & Wali, 2001). Creating a sense of safety via connection and belonging, produces better social supports, buffers stressful experiences, and may disrupt or negate biosocial mechanisms that influence adverse birth outcomes.

Layer 3-Resistance

The third layer in our resilience framework is community-representing culture, intersectional identities, the local environment, and collective cultures, both historical and contemporary. Communities are complex systems, involving the social-cultural, physical, economic, and built environment ( Pinderhughes et al., 2015), and often contain intergenerational histories of trauma, and structural violence. Collective and intergenerational community trauma and adverse life experiences ( Anda, Butchart, Felitti, & Brown, 2010; Felitti et al., 1998) leads to poor health for all members of the community, including birthing women. Resistance, as an operational term, is used for this third layer and is defined as defying or opposing dominant individuals or institutions in a "context of differential power relationships" and, at times, can involve "refusal," or rejecting unequal relationships to assert new ways in which power is configured ( Seymour, 2006). Resistance activates and embodies resilience in the community. The movement of collective culture resisting inequities has been the basis of many positivist political and human rights movements in recent history, with the civil rights movement being the most famous example ( A. Y. Davis et al., 2016; Quesada et al., 2014). Organizing and giving collective support is restorative at the community, familial, and individual levels ( Kirmayer et al., 2011; Lorde, 1999; Pinderhughes et al., 2015).

Healing collective trauma through social networks, rebuilding broken down built environments, and creating resources to combat socioeconomic barriers allow the act of communal self-caring and engagement to be transformative on an individual level, which directly and positively impacts women's lives, stress level responses, and pregnancies. The individual self, and in this case pregnant and birthing women, can then survive through involvement in collective community ( hooks, 2016a, 2016b) because the process of solidarity provides immunity or a buffer to maladaptive health outcomes ( Pinderhughes et al., 2015; Quesada et al., 2011; Ramey et al., 2015). The internalization of social status and pregnancy-related anxiety among Mexican immigrant women has been shown to predict LBW ( Fleuriet & Sunil, 2015, 2017a), as has the reproductive habitus, defined as the manner of living the "reproductive body, bodily practices, and the creation of new subjects through interactions with people and structures" ( Fleuriet & Sunil, 2015; Smith-Oka, 2012). The embodiment of selfhood via community agency can provide women with the ability to engage in personal practices that bolster self-regulation, self-efficiency, stress management, positive coping skills, and contributes to better social economic resources ( Dunkel Schetter & Dolbier, 2011) that produce an embodied impact on pregnant Black, Hispanic, and Latina women.

Layer 4-Structural Vulnerability

The fourth layer of structural vulnerability describes the economic forces, institutional mechanisms, as well as the local policies that influence the quality of life and health of community members. Black, Hispanic, and Latina women are disproportionately negatively impacted by structural forces, both institutionally, and through local policies that have not been created and managed to serve women of color ( Bourgois et al., 2017; Krieger, 2012; Nuru-Jeter et al., 2009; Sealy-Jefferson et al., 2016; Walters et al., 2011). Structural vulnerability is an operationalized term that strongly aligns along all layers of the framework and can best inform the structural layer. Structural vulnerability ( Bourgois et al., 2017; Green, 2011) describes an individual's or a group's condition of being at risk for negative health outcomes through their interactions with socioeconomic, political, cultural, and normative hierarchies. Individuals are structurally vulnerable when their location in societal interactive reinforcing power hierarchies (e.g., socioeconomic, racial, cultural) and institutional and policy statuses (e.g., immigration status, labor force participation, legal histories) constrain their ability to access health care and pursue healthy lifestyles ( Bourgois et al., 2017, p. 2).

Privilege and access to power in the United States was built through the development of natural and financial resources, while the historical disparity of access to these resources is the foundation of racial oppression and inequity ( Du Bois, 1909). Community trauma involves a lack of resources and opportunity, a disregard for the built environment, and a proliferation of neglected urban social spaces that serve as visual indicators of segregation. These in turn negatively impact the health of the Black, Hispanic, and Latina women and increase stress levels that contribute to adverse pregnancy outcomes ( Bonam et al., 2016; Burton, Kemp, Leung, Matthews, & Takeuchi, 2011; Gravlee, 2009; Mehra et al., 2017 Pinderhughes et al., 2015; Suglia et al., 2010). Claiming power and producing praxis-based agency, which accordingly produces resilience, can reduce biosocial links to stress responses for birthing women.

Layer 5-Historical Oppression

The fifth layer represents the policy, law, and historical legacy of racism and oppression of our framework and highlights the established mechanisms of segregation that perpetuated inequities for communities of color and historically underrepresented groups. The operationalized term we are using that clarifies this process is historical oppression. Historical oppression focuses on "historically situating social problems in their structural causes, rather than inappropriately locating problems solely within the populations who tend to disproportionately experience them" ( Burnette & Hefflinger, 2017; Waller, 2001). This definition also includes the internalization of historical and contemporary oppressions, hierarchical power relationships, and an understanding of the intersectionality of racism, sexism, and colonial histories of U.S. policies ( Crenshaw, 1991; Ford & Airhihenbuwa, 2010; Freire, 1972).

Building social resilience through community and common narratives of belonging can bolster a sense of entitlement across the intimate, familial, and community levels. Building community around healing is a step toward resilience in itself because hope is within the narrative of belonging and the right, or entitlement to exist. The processes of building resilience through active resistance in civil and social activism become more important as a function of hope ( Castañeda et al., 2015; A. Y.Davis et al., 2016).

Understanding how structural violence is normalized within communities in both overt and silent ways helps us demonstrate how resilience is produced via joy, intimacy, and hope, even in spaces where the experience of collective community has been historically under resourced and undervalued ( Abdou et al., 2010; Burnette, 2015, 2017; Kirmayer et al., 2009; Krieger, 2012; Pinderhughes et al., 2016). Daily interactions of indignities with health care personnel add up to increased stress and worry for Black, Hispanic, and Latina women, resulting in increased adverse birth outcomes ( Colen, Ramey, Cooksey, & Williams, 2018; McLemore et al., 2018; Novak et al., 2017; Nuru-Jeter et al., 2009; Suglia et al., 2010). Any fundamental shift in attitude, understanding, and policy toward creating systems of dignity, such as accessible, consistent supportive health care, in addition to informative, culturally humble and respectful health providers, can improve Black, Hispanic, and Latina women's birth experiences by reducing cumulative stress and physiological responses in the body during pregnancy. Increased access to health and preconception care, nutritional fresh foods, economic opportunities, and family supports can also provide an understructure to promote healthy birth outcomes and resilient pregnancies ( Hamad, Collin, Baer, & Jelliffe-Pawlowski, 2019; Lu et al., 2010; Prather et al., 2018).

Layer 6-Embodiment

The final layer of our framework, embodiment, involves the hegemonic discourse and the rejection of oppressive ideological representations, stereotypical norms, and a process of healing by means of developing critical consciousness and resistance around previously naturalized power inequities. The reacquisition of places, memory, self, and history becomes a means of remaking the self ( A. Y. Davis et al., 2016; Freire, 1972). Resilience can be cultivated through the rejection of norms based on stereotypical representations, resulting in ongoing healing and transformation ( Allen et al., 2014; Burnette & Figley, 2016; Panter-Brick, 2014, 2015; Pinderhughes et al., 2016; Ungar, 2012). Embodiment represents this layer of the framework and exists in all overlapping layers. Embodiment represents how stressors, inequities, and symbolic and/or literal insults are held, housed, and experienced in the self ( Scheper-Hughes & Lock, 1987). It is an important concept and highlights how both trauma and resilience can affect the health and well-being of Black, Hispanic, and Latina women, influencing reproductive health and pregnancy outcomes in numerous ways ( Krieger & Davey Smith, 2004; Nuru-Jeter et al., 2009). More specifically, it is crucial to understand how hegemonic discourse shapes and influences the reproductive rights and health of women of color ( Roberts, 1999). Embodiment represents the ways in which resilience, healing, and transformation lives in the symbolic space of thought and action on all layers of our framework.

After experiencing collective or individual experiences of trauma, various types of protective dissociation through the creation of art and cultural narratives can serve as projections of future hope and functional forms of escape. Similarly to art, transformation can be manifested through innovation and community knowledge, producing social action and local systems of positive change ( Akom, Shah, Nakai, & Cruz, 2016). Along historical collective groups, solidarity acts as a transformative element via shared action, hope, and the healing of the larger social body ( Kirmayer et al., 2011; Teufel-Shone, Tippens, McCrary, Ehiri, & Sanderson, 2018). Solidarity through political and social movements also provides witnessing of wrongs and inequities. Constructing narratives around people's collective experiences of inequities influences policy change, reduces health disparities through increased access to care, and lowers experiences of discrimination and stress for pregnant and birthing women.

Conclusion and Future Research

This analysis was conducted using a preconceptual model for a scoping literature review of resilience from various fields relating to the definition, processes, and creation of resilience that resulted in a multilayered contextual resilience framework. The studies included in the review were synthesized by women of color to understand how Black, Hispanic, and Latina women create and cultivate resilience in their lives to influence healthy pregnancies and birth outcomes. However, any assertion of this contextual resilience framework is ineffective and unproductive if not further refined and vetted among communities of Black, Hispanic, and Latina women ( Wallerstein, Yen, & Syme, 2011). The resulting contextual resilience framework was developed with women of color, with intention to women of color scholarship and developing different ways of thinking about resilience and how it is captured in future studies. Thus, our framework identifies the limitations of how resilience has been defined and finds issue with how communities have been engaged or included in determining how to measure and present the information gleamed about them and for them. Although centering Black, Hispanic, and Latina women within the creation and ongoing development of this framework and any measures developed to further its evolution, we also welcome a discussion regarding how a contextualized resilience framework can be better conceptualized with a lived understanding of the multi-dynamic processes that Black, Hispanic, and Latina women manage and negotiate while engaging resiliently. Future research should also consider biosocial links and biopsychological pathways, a viable and important method of research to understand how resilience is embodied among pregnant Black, Hispanic, and Latina women.

This contextual framework is the first step in the development of a praxis-based framework that has been conceptualized with the sole intent of identifying resilient strength-based practices that women of color currently manifest in their lives. The conceptual review was not exhaustive but aimed to cover many major works and fields of thought across different conceptualizations on resilience theory. The strength of our contextual framework is that it pulls from many fields and concepts to build upon our basic premise, and women of color are central to the narrative of their own health, well-being, and transformative strengths. Black, Hispanic, and Latina women in the United States have been navigating and negotiating their ability to survive and thrive for centuries, as well as endeavoring to embody healthy pregnancies and babies. Within this centrally focused view, we must strive to understand the overlapping layers of the ecological system developed by historical oppressions and shaped via structural vulnerabilities ( Bourgois et al., 2017; Burnette & Figley, 2016; Krieger, 2012).

Future research and understanding should focus on how people in diaspora create and interact in resilient communities. Our review also did not include a discussion of trans men and lesbian women of color's experience with pregnancy and birth outcomes, as well as omitted a very relevant discussion of discrimination and its impact on pregnancy and birth outcomes for lesbian, gay, bisexual, transgender, queer, inter- and asexual individuals. We also did not research or discuss the experience of differently abled women's birthing experiences or outcomes, thus falling short of providing an important and more comprehensive understanding of the adverse and different experiences they also have.

Subsequent resilience research should include feedback and opinions of Black, Hispanic, Latina women and birthing people in relation to their pregnancy and birthing experiences. Collaboration with women and birthing people is needed to better understand biosocial links and biopsychological pathways that influence pregnancy outcomes. Suggested activities and research include (a) the creation of contextual resilience measures with community members; (b) further development of narrative definitions for layers of the ecological framework, coauthored with women in represented communities to identify the processes and needs to bolster resilience; (c) implementation of vetted resilience supporting programs, education and structures to build community leadership, wealth, social support systems, and wellness; and (d) educational training for service providers, and community leadership and activism to create supportive health policies and wellness for birthing Black, Hispanic, Latina women, and birthing people's families and communities.

ORCID iD
Tijen Sumbul https://orcid.org/0000-0002-6638-3636

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Author Biographies

# data[].attributes.attachment_link.title
A Transdisciplinary Conceptual Framework of Contextualized Resilience for Reducing Adverse Birth Outcomes - Tijen Sumbul, Solaire Spellen, Monica R. McLemore, 2020

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Abstract Research in preterm birth has focused on the disparate outcomes for Black, Hispanic, and Latina women as compared with White women. However, research studies have not focused on centering these women in frameworks that discuss how resilience is embodied.

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On Racism: A New Standard For Publishing On Racial Health Inequities

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On Racism: A New Standard For Publishing On Racial Health Inequities

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By Rhea W. Boyd  Edwin G. Lindo  Lachelle D. Weeks  Monica R. McLemore

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If the address matches an existing account you will receive an email with instructions to reset your password

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ON “PERSON-FIRST LANGUAGE”: IT’S TIME TO ACTUALLY PUT THE PERSON FIRST

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ON “PERSON-FIRST LANGUAGE”: IT’S TIME TO ACTUALLY PUT THE PERSON FIRST

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by Alex Kapitan

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On "Person-First Language": It's Time to Actually Put the Person First

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The "person-first language" rule was created to put the person first, not a disability or diagnosis. But it doesn't.

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Intersectionality Matters with Kimberlé Crenshaw

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Intersectionality Matters with Kimberlé Crenshaw

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A podcast.

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Intersectionality Matters! is a podcast hosted by Kimberlé Crenshaw, an American civil rights advocate and a leading scholar of critical race theory.

Intersectionality Matters with Kimberlé Crenshaw's tracks

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Intersectionality Matters with Kimberlé Crenshaw

# data[].attributes.attachment_link.title
Intersectionality Matters with Kimberlé Crenshaw

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Intersectionality Matters! is a podcast hosted by Kimberlé Crenshaw, an American civil rights advocate and a leading scholar of critical race theory.

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"Black Futures Lab works with Black people to transform our communities, building Black political power and changing the way that power operates—locally, statewide, and nationally."

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http://criticalresistance.org/

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https://justrecoverygathering.org/
Open letter for just recovery from COVID-19

https://350.org/just-recovery/#letter

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Heeding calls for justice by and for MMIWG

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Heeding calls for justice by and for MMIWG

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Reclaiming Power and Place: The Final Report of the National Inquiry into Missing and Murdered Indigenous Women and Girls

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Treat students as adults and human beings. Recognize some may have been caregivers, worked in the healthcare field, or in an entirely unrelated career. All experiences add value to nursing-stress this, especially in intro classes through collages, short writing prompts etc. -Heather Mangino

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Collaborate with colleagues-share pedagogy, resources, and what has or hasn’t worked. Do you know educators and/or community members who can be accountability partners? Can you network with folks on social media to find them? -Heather Mangino

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How Cancer Treatment Treated Me: A Graphic Story

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How Cancer Treatment Treated Me: A Graphic Story

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By, Cissy White
https://healwritenow.com/how-ovarian-cancer-treatment-treated-me-a-graphic-story/

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https://cpb-us-w2.wpmucdn.com/edblogs.columbia.edu/dist/8/1109/files/2020/02/Guide-for-Inclusive-Teaching-at-Columbia_Accessibility-Revisions_15-January-2020_FINAL.pdf

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https://disabilityvisibilityproject.com/ added by Heather Mangino

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We acknowledge the impact of all nurses in our discipline's history. We amplify the praxis of nurses who have been historically excluded because of racism and white supremacy.

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We centre peace and justice as essential to health, healing and hope within, amongst, across people, communities and nations. We are pro-active and political in our work to co-create new ecosystems.

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We centre peace and justice as essential to health, healing and hope within, amongst, across people, communities and nations. We are pro-active and political in our work to co-create new ecosystems.

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Co-creation. Equal power in the provider-clieny relationship. Absolutely no gradient and humble servitude. That is nursing and what sets this profession apart. With the client and for the client.

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Absolutely. Your client is the absolute master of who they are, what their body does and how it heals. They may not know this or feel confident because they have been taught to self doubt- this is a product of misuse of the medical model. Remind your client of their power then facilitate the process that helps them harness this. That's you, that's the nurse.

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Many out there believe nurses are custodial. Many believe nurses are not scientists. This belief has survived centuries. Advocate, advocate and advocate some more on the true essence of this beautiful profession. Advocate for knowledge transfer

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Something that has been on my mind here lately is the question of who does or does not "get to be.".... You can insert whatever adjective or title that you wish behind that little phrase. I've especially been thinking about this as it relates to my profession, nursing. Particularly on who holds the societal and systemic power to define and decide who "gets to be" and "what "they" get to be in nursing. I want to acknowledge that the idea of "Being" can mean many different things to many people and cultures. As it relates to this post, being, to me, is more than being present or having possession of something that makes you apart of a larger community. Being is not synonymous with existing. Rocks exist but can't necessarily "BE." Being, for me, involves having ownership of oneself as we relate to others and relate various aspects of self in relation to others. I also don't think my definition of being is limited to what I said here.

As a Black man and second-generation nurse, my experiences and positionality have enlightened me to some unpleasant truths about nursing, some bitter pills, you might say, about who "gets to be."Being Black, navigating processes and institutions that question my right to be present and have an opinion, and take up space is a daily aspect of life. As a Black man who is a nurse, I fall into two minoritized or historically excluded (as Dr. Monica McLemore is known to say) groups in nursing; this comes with its own additional challenges. I will outline some of them below:

1. Firstly, we love to guard who does and does not get to be a nurse. So many times, when having discussions about equity and increasing access to nursing education, I hear folks lead with, "well, everyone shouldn't be a nurse." This framing is problematic for several reasons, one of those being that the primary individuals who say such things are those a part of the dominant group in nursing, white women (and men). This framing places gatekeeping at the forefront. Meanwhile, racism and the centering of whiteness continues to be an ongoing issue in nursing education and healthcare at large (Bell, 2020) & (Bailey et a.l., 2017). So in our efforts to weed out folks (see my thoughts on terms and practices like this here), we are still admitting folks, such as racists, misogynists, and bigots, into nursing. We have NOT historically had broad and systemic mechanisms and efforts in place that weed out folks with these deadly characteristics, though folks who have been doing this work certainly exist. So, no, I do not believe in starting a conversation with "well, everyone shouldn't be a nurse" because that statement fails to acknowledge that all nurses aren't inherently "good" for the profession or the people we seek to serve the world. It also fails to recognize our profession's historical (and present) role in UPHOLDING colonialism, racism, and white supremacy (Waite & Nardi, 2017). This mindset also centers the dominant presence in nursing, again white women (and men), as the authority of who does or does not make a "good" nurse or potential nurse. Who or what gives them this power? Why aren't there more of us questioning this more often? The answer to those questions could be a whole other post.

2. When those of us who come from historically-excluded and/or marginalized groups manage to overcome the ever-present barriers to entering and existing in nursing, we then gave a new set of challenges and obstacles. This happens because nursing, like many other disciplines in academia and healthcare, always seeks to create and reinforce hierarchies that allow some to feel more involved or important than "others." Often those "others" are folks who come from historically-excluded or oppressed groups. We see this manifest in the ceaseless war on accessible nursing education. An example of this is the pitting of the associate degree in nursing (A.D.N) versus the bachelor of science in nursing degree (B.S.N), both of which produce registered nurses (RNs). Further, we see minimization of the importance of licensed practical/vocational nurses (LPNs/LVNs), and the versus battles goes on up to doctoral nursing degrees, Doctor of Nursing Practice (D.N.P) versus Doctor of Philosophy in Nursing (Ph.D.). When degree options have been exhausted, we then search for other things to demonstrate superiority. What school did you attend? Was your program online or in-person? The search for superiority is never-ending and tiresome.

3. We jealously guard who gets to be viewed as a scholar, scientist, theorist, leader, innovator, and change-maker on nursing. This is particularly disturbing, as our profession itself battles with external persons and institutions who try to limit whether we get to be viewed as scientists, scholars, leaders, or even autonomous. The ability to be considered to be a scientific discipline undeniably comes with a measure of societal power and influence, to paraphrase the Pew research group (2015). In addition to the esteem that comes with being designated a science, the designation also impacts funding and money allocated to nursing. In efforts to establish itself as a science in the eyes of the world, nursing often leaves behind many in our profession, as well as the communities we serve, in my opinion. Nursing and the academy often do a poor job of acknowledging ways of knowing and understanding that are outside of the historically white norm. Ph.D. candidate Anthony James Williams wrote an important article for Inside Higher Ed that discusses how the act of theorizing by Black Scholars can differ from their white counterparts, yet is no less valid (2018). A dear friend of mine, Dr. Jess Dillard-Wright, introduced me to the idea that all nurses theorize all the time and are theorists in their own right. This shocked me, but it also makes A LOT of sense. However, because this thinking is not shared or validated by the academy, many nurses don't feel this way about themselves or their work. From the perspective of science, another conundrum arises in my mind. If we assert that nursing is science (also an art), then this science must belongs to us all. By all, I mean from the advanced practice registered nurse (APRN), to LPN colleagues, and those with or without a graduate-level nursing degree. Nursing science must belong to us all, but sadly this sentiment is not evident throughout the profession, in my experience. Nursing science is, as with many other profession, made to feel distant and out reach for many of us. It seems to be only for those with certain positions or certain letters behind their names.

4. The power of deciding what is a priority for the various aspects of the professions is not equally distributed. We have evidence that tells us of the disproportionate number of Black nurses in leadership (Jefferies et a.l., 2018). Those in nursing leadership positions or education hold an undeniable influence over nursing, even if it is localized to a particular unit or shift within an organization. Because of the "power" and influence that people in these roles have, it's no surprise that historically excluded folks (read: Black Indigenous People of Color (BIPOC)) continue to be found scarcely in these roles in nursing (Kolade, 2016). Particularly in academia, I rarely see myself reflected in the academic and nursing education settings in which I exist as a Black person. Considering my identity as a Black Man, the deficit is even more pronounced. This has many reasons, which have been discussed by others and which I hope to delve into more myself one day.

5. The "how" in all of these conversations about who "gets to be" matters too. A part of the tax of being a part of a historically excluded group is having our ways of expressing our truths, and knowledge FREQUENTLY questioned, delegitimized, and stigmatized. The urge to assimilate our ways of knowing and fit what academia tells us are acceptable forms of knowledge building and dissemination. This means that even when writing an informal blog post where I'm sharing my opinion, I battle with the urge to "sound more scholarly," something I'm still working to overcome at the time - being more comfortable with being heard in my own, in all of its manifestations from African American Vernacular English (AAVE) to my love for uncommon words that express precisely what I want to say.

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Something that has been on my mind here lately is the question of who does or does not "get to be.".... You can insert whatever adjective or title that you wish behind that little phrase. I've especially been thinking about this as it relates to my profession, nursing.

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Patient-centered care is a buzzword in modern healthcare. It's the idea that we shift care from being driven by clinicians and institutions to being driven by the needs of the people whom clinicians and institutions serve-our patients and their community of support.

Long-gone are the days of healthcare professionals independently dictating the care plan and expecting patients and their families to unquestionably "fall in line." Now, we know that patients are leaders and partners in care. However, we're still developing our ability to consistently and optimally create processes and resources that genuinely place patients and their families at the center of care.
The real issue
Clinics and hospitals seek to be places of healing, but they can also cause much disruption in the lives of patients and their families. It could be argued that a measure of disruption is necessary, but how can we minimize this? Shouldn't we be continually asking ourselves and colleagues how we can make care even more patient- centered?

Patients come to us in vulnerable states, often for things out of their control. Once they're admitted to the hospital, their control their environment and schedule is even more limited. We dictate when they eat, rest, get their medications, and much more. As a nurse, I see how patients interact with many facets of hospital life, from nutrition services delivering food to scheduling and transportation for diagnostic testing and procedures.

"This isn't the time I take this medication at home," is a common comment I hear in the pre-dawn hours when I give medication. Another is, "I didn't sleep well." Some might assert that "hospitals are just busy," but is that thinking from a truly patient-centered perspective? We can't avoid all disruptive aspects of care that occurs. However, we can pause to think about how to minimize the disruptive and intrusive aspects of healthcare in the hospital.
3 things we can do to create truly patient-centered care in the hospital: 1. Avoid creating overwhelming situations or those that exacerbate a patient's vulnerable position.
When rounding, think about how entering the room with numerous people could make patients feel exposed. This is particularly critical when their body will be touched, examined, or on display in some way.
2. Get to know patients as people.
Ask patients about their life at home-their family, friends, neighbors, hobbies, passions, and favorite foods.
3. Take time to communicate effectively.
Ask what you can do to improve their stay in the hospital.
This piece expresses the views solely of the author. It does not represent the views of any organization, including Johns Hopkins Medicine.

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Patient-Centeredness in The Hospital - CLOSLER

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Patient-centered care is a buzzword in modern healthcare. It's the idea that we shift care from being driven by clinicians and institutions to being driven by the needs of the people whom clinicians and institutions serve-our patients and their community of support. Long-gone are the days of healthcare professionals independently dictating the care plan ...