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Atinuke ‘Tinu’ Abayomi-Paul, The Disabled Empress of Twerk, Mama, Writer, Activist, Advocate, Speaker, Founder of Everywhere Accessible has transitioned. 

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Atinuke ‘Tinu’ Abayomi-Paul, The Disabled Empress of Twerk, Mama, Writer, Activist, Advocate, Speaker, Founder of Everywhere Accessible has transitioned. 

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Jennifer White-Johnson on Instagram: “Tinu. @asktinu I’m heartbroken. Atinuke ‘Tinu’ Abayomi-Paul, The Disabled Empress of Twerk, Mama, Writer, Activist, Advocate, Speaker, Founder of Everywhere Accessible has transitioned. I just found out last night that she passed last Thursday at her home. Through her cancer diagnosis, treatments, chemo, and dealing with #LongCovid she continued to advocate for others spearheading and sharing Mutual Aid campaigns, threads and witty content that made us Disabled folk feel validated and seen. This is such a huge loss to the Disability advocacy community, especially those of us that counted on the support of our comrades to share our heart work, our art and more. When Twitter was a place for immense Disability advocacy for me, her voice carried a lot of us! I was once invited to a Twitter Voices online event that prioritized the Disabled community and perspective and to hear and see her speak her truth though the pain as many of us do was powerful to witness. I know a lot of us will miss her humor, style, and unapologetic wit. But I know her memory will continue radicalize and revolutionize us. You are now our disabled ancestor. 🌺🌸🌺 Main image description: Digital collage of a black disabled woman. Tinu is smiling brightly. Her her curly bold red copper curls frame her cocoa brown skin. Her smile radiates as she’s nested and surrounded by white, and periwinkle flowers, and a purple halo behind her Photos and Tinu Selfies are from her X and IG accounts. The in loving memory graphic is also from her family’s IG post about her transition More info via the families GFM: In 2022 Tinu was hospitalized with COVID pneumonia which led to a resurfacing of her cancer. She also had Long COVID & ME/CFS. Her family needs our help for funeral, medical expenses, housing, loss of income and other costs. Please share this fundraiser with the hashtag #ForTinu Also, please help advocate for and enact public health policies that center the people who are most impacted by and high risk for COVID, especially people like Tinu. As Tinu wrote, “if you would wear a ribbon for a cancer patient, you should be wearing a Mask for Everyone”.”

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1,528 likes, 33 comments - jtknoxroxs on September 30, 2024: “Tinu. @asktinu I’m heartbroken. Atinuke ‘Tinu’ Abayomi-Paul, The Disabled Empress of Twerk, Mama, Writer, Activist, Advocate, Speaker, Founder of Everywhere Accessible has transitioned. I just found out last night that she passed last Thursday at her home. Through her cancer diagnosis, treatments, chemo, and dealing with #LongCovid she continued to advocate for others spearheading and sharing Mutual Aid campaigns, threads and witty content that made us Disabled folk feel validated and seen. This is such a huge loss to the Disability advocacy community, especially those of us that counted on the support of our comrades to share our heart work, our art and more. When Twitter was a place for immense Disability advocacy for me, her voice carried a lot of us! I was once invited to a Twitter Voices online event that prioritized the Disabled community and perspective and to hear and see her speak her truth though the pain as many of us do was powerful to witness. I know a lot of us will miss her humor, style, and unapologetic wit. But I know her memory will continue radicalize and revolutionize us. You are now our disabled ancestor. 🌺🌸🌺 Main image description: Digital collage of a black disabled woman. Tinu is smiling brightly. Her her curly bold red copper curls frame her cocoa brown skin. Her smile radiates as she’s nested and surrounded by white, and periwinkle flowers, and a purple halo behind her Photos and Tinu Selfies are from her X and IG accounts. The in loving memory graphic is also from her family’s IG post about her transition More info via the families GFM: In 2022 Tinu was hospitalized with COVID pneumonia which led to a resurfacing of her cancer. She also had Long COVID & ME/CFS. Her family needs our help for funeral, medical expenses, housing, loss of income and other costs. Please share this fundraiser with the hashtag #ForTinu Also, please help advocate for and enact public health policies that center the people who are most impacted by and high risk for COVID, especially people like Tinu. As Tinu wrote, “if you would wear a ribbon for a cancer patient, you should be wearing a Mask for Everyone”.”.

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Sick Times: Tinu Abayomi-Paul, writer, disability advocate, and person with Long COVID, dies at 52

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Sick Times: Tinu Abayomi-Paul, writer, disability advocate, and person with Long COVID, dies at 52

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The Sick Times - Chronicling the Long Covid crisis

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Tinu Abayomi-Paul, writer, disability advocate, and person with Long COVID, dies at 52 - The Sick Times

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Atinuki “Tinu” Abayomi-Paul, a prominent writer and disability advocate, died on September 26 at home in Texas. She was 52. Abayomi-Paul was well known in the Long COVID and disability community for her writing, speaking, and mutual aid organizing. She was the founder of Everywhere Accessible, an advocacy organization which she launched in 2019 to

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Still Here, October 11: Links and transcript

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Still Here, October 11: Links and transcript

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Atinuki “Tinu” Abayomi-Paul was “so funny … and so clever” and “wonderful at supporting disabled people in a beautiful and authentic way.” Several of those who loved and cared for Tinu reflect on her legacy and life in this episode of Still Here.

Before the segment of the episode dedicated to honoring Tinu, co-hosts Miles Griffis and Betsy Ladyzhets talk with podcast producer James Salanga about the latest COVID-19 numbers. And they share a brief hopeful update about beginning analysis that could help lead to repurposed drugs as treatment for Long COVID.

Find our podcast on Spotify, Apple Podcasts, Pocket Casts, Amazon Music, iHeartRadio, or listen below and jump to the start of the podcast transcript.

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The Sick Times - Chronicling the Long Covid crisis

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Summary

Atinuki "Tinu" Abayomi-Paul was "so funny ... and so clever" and "wonderful at supporting disabled people in a beautiful and authentic way." Several of those who loved and cared for Tinu reflect on her legacy and life in this episode of Still Here.

Before the segment of the episode dedicated to honoring Tinu, co-hosts Miles Griffis and Betsy Ladyzhets talk with podcast producer James Salanga about the latest COVID-19 numbers. And they share a brief hopeful update about beginning analysis that could help lead to repurposed drugs as treatment for Long COVID.

Find our podcast on Spotify, Apple Podcasts, Pocket Casts, Amazon Music, iHeartRadio, or listen below and jump to the start of the podcast transcript.
Jump to a specific part of the transcript:
Still Here is an abridged version of The Sick Times' newsletter, which publishes weekly.
Mentioned in this episode (in order of appearance):
Additional audio in this episode:

Your support helps The Sick Times continue to chronicle the ongoing Long COVID crisis.

Transcript
[Instrumental snippet of theme song, the Rude Mechanical Orchestra's rendition of "Which Side Are You On?" begins playing.]
James Salanga: This is Still Here, a podcast from The Sick Times.

Miles Griffis: I'm Miles Griffis.

Betsy Ladyzhets: And I'm Betsy Ladyzhets. We're the co-founders of The Sick Times.
[Instrumental ends]
James: I'm James Salanga, and I'm Still Here's producer.

Miles: Many public health authorities are ignoring the ongoing COVID-19 pandemic.

Betsy: But here at The Sick Times, we're not. That's why we've been chronicling the impacts of the Long COVID crisis.

Miles: Disabled people are still here. So is COVID.

Betsy: So we're bringing you the latest Long COVID news and commentary each week ...

Miles: Without pandemic denial, minimizing, or gaslighting.

James: This podcast is typically an abridged version of our newsletter. But today's episode will be a little different from the format you can typically expect from us. First, we'll talk about the latest COVID levels in the U.S. and share some research updates.

Miles: This week in research, we have a milestone. The federal initiative CURE-ID, which comes from the Food and Drug Administration, reached 500 reports of Long COVID treatment experiences and will begin preliminary analysis. More on what that means soon.

James: And the rest of our episode will uplift the voices of those grieving Atinuki "Tinu" Abayomi-Paul ... a writer, disability justice advocate and person with Long COVID beloved by many in Long COVID and disability communities.

Before that, I'll hand it over to Betsy for a quick recap of this week's COVID levels.
[Sound of thunderclap and light rain]
COVID-19 forecast (1:34)

Betsy: Yeah, so COVID levels in the United States have been going down for a few weeks now.

And that pattern has continued this past week. We're really seeing declines across all regions.

And that is consistent across all of the wastewater data providers that I've been looking at. So Northeast, South, West Coast, Midwest, all seeing declines.

Of course, it's important to remember that wastewater numbers are a proxy for COVID cases. They're not a perfect measurement. So it's tough to say exactly how many people are sick with COVID in a given location or at a given time from these data.

But it does give us a very good indicator of what direction and sort of what magnitude cases are happening. And the CDC actually has a office within it that does modeling work for infectious diseases, including COVID - [it] and the flu are the two main ones they're focused on.

And in their most recent update where they provide estimates of whether COVID spread is increasing or decreasing in every state, they actually found that COVID spread is, as they put it, declining or likely declining in 45 states. And the other states, it is either they don't have enough data to estimate it or it's stable.

So that's pretty good. Usually there's at least a few states where it's increasing.

Of course, we will likely only get a few weeks of this before everybody anticipates a winter surge, given changing variants, behaviors with people traveling for the holidays or spending more time indoors as the weather gets colder, all of that kind of thing.

James: Yeah. You can find out more about the way we develop our COVID forecast and trends on our website. We have a research update.
[Miles' voice echoes the word "Research" accompanied with a horn sound excerpted from the theme song]
Research (3:23)

Miles: Yeah, so as I was saying earlier, CURE ID, it's run by the Food and Drug Administration. It's basically a long survey that is trying to suss out viable existing treatment options for people with Long COVID. It does this for other diseases as well, but it has a specific Long COVID arm.

They reached a milestone of 500 experiences with Long COVID, which is great. So they're going to now start an analysis - they'll go through the data and see if there's any common trends.

And hopefully it'll put together some options that will likely give people some relief. These obviously aren't going to be extensive cures, these are things that are already available, but they will tell us potentially more about the pathophysiology of Long COVID and give us an idea of what people are responding to.

CURE ID worked with patient groups to develop the survey for people with Long COVID. CURE ID doesn't have the resources to run clinical trials themselves, but will share the data when it compiles [it] with the FDA and other NIH officials.

Some patients have found it difficult to navigate, [since] it's a longer survey. So there is a shorter option now that is making it a little bit more accessible and easy to share your results.

So, uh, people with Long COVID, if you have the spoons, this is a good way to share some things that have helped you. Even if they're just small things, you know, those can be a great help as we sort of dig through and find out more about Long COVID.

Betsy: Yeah, I think they initially - initially, they said 1,000 was the number of reports they needed before they could start doing analysis.

But the level of detail that people have been sharing as they fill out the survey has been so extensive and comprehensive that they actually decided they could go ahead with 500 [reports] and start doing analysis.

So that was pretty cool to see, I think. Though, of course, they're still saying, you know, as many, you know, anyone who can share who has the spoons to fill this out, it's appreciated.

I would also say just having followed this for the last few months since I wrote a story about it in the spring, the CURE ID program has been pretty responsive to feedback from patients.

Like, as Miles mentioned, it's pretty hard to fill out. The online form is not particularly intuitive.

I poked around with it - not to submit my own data because I do not have Long COVID - but just to kind of find out how it works. And it is really, it's a little tricky.

So they, in response to the challenges people are having, there are now some accessibility options you can request. So if you reach out to the CURE ID team, you can set up a phone call with one of their team members where they will essentially talk to you and then fill out the survey on your behalf.

And I believe you can also do that through emails or other text kind of communication. So that's definitely something folks should look into if they're interested or if it would be helpful for them. I've also found their team is very responsive on Twitter.

So they really are, you know, paying attention and trying to improve it and iterate it over time to make it easier for people to share their data.

And hopefully this will point to some clinical trials of repurposed drugs and/or as Miles said, more looking into the underlying biology of Long COVID.

James: In terms of clinical trials, it was a big topic of discussion at the RECOVER-Treating Long COVID meeting two weeks ago. So if you want to hear more about that, we do have coverage up on our website, and we also have our previous podcast episode - [it] was also about that.

After a quick musical break, we will talk about and honor Tinu.
[instrumental portion of theme song plays]
Honoring Tinu (7:38)

James: Atinuki Abayomi-Paul, known as Tinu, was a prominent writer and disability justice advocate, who died on September 26 at home in Texas. She was 52.

I wanted to let Tinu a chance to introduce herself in her own words. The clip you're about to hear is from an interview she did with Rooted in Rights in 2020.
[Tinu: I'm Tinu Abayomi-Paul. I live in Arlington, Texas. I am the founder of Everywhere Accessible. The idea that I like to talk about a lot because it's something that's accessible to people, that they have heard a lot, is this idea of a "productive member of society." So I think that's one of the examples of medical ableism that's widespread, and what that evolves into now [in the pandemic] is people saying, you know, it starts out with, well, only the disabled and only the elderly are going to have problems with this virus. Hi, that's me, [laughs] okay? ... My life is priceless. I shouldn't be called upon to sacrifice my life when we have the resources to save as many people as we can.]
Miles: As soon as I heard the news - I heard it on Sunday, the 29th - I just started seeing so many people in the Long COVID and greater disability community honoring Tinu through just beautiful words through tweets, through posts, making mur- a beautiful mural of her.

So I wanted to start just to kind of record this, make sure that something was written in a timely manner. So I started sort of just compiling different things that people had said.

James: I mean, I'm really glad that we were able to publish this story about Tinu and to archive what folks were - how folks were honoring her. Here are some of her community members and friends:

Brooke Crume, or ZenMeow on social media...
[Brooke: She was so funny, and if there's one thing I would love for people to know about Tinu, it's that she was so clever.]
James: Jermaine Greaves, founder of Black Disabled Lives Matter...
[Jermaine: I believe that she was wonderful at supporting disabled people in a beautiful and authentic way.]
James: And Claudia Alick, producer of Calling Up Justice, a disability and racial justice transmedia practice...
[Claudia: We built so much access intimacy together, and also across our practices. Sometimes it was like we lived in the same digital neighborhood, and I would say something cooperative on their Twitter thread, or they would repost my Twitter thread.]
Miles: I remember reading an essay that she wrote for Creaky Joints in 2022.

The quote that really stuck out to me was, "I hope my story humanizes the experience of having COVID for people. Those of us at high risk aren't abstract people you've never met. They're people you know and love and might die because you don't wear a mask."

Along with speaking about disability, Long COVID, other chronic conditions that she was living with, one of the things that I noticed a lot of people speaking about was just sort of how she broke down a lot of the stigma around being immune-compromised and really talked about it.

James: Here's Tinu in an National Disability Rights Network interview again, talking about a 2022 hospitalization.
[Tinu: People are not getting proper care for COVID in the hospital and it is more difficult when they look like me. People ask me what it feels like, what does Long COVID feel like? It feels like - I used to read these books when I was little, some of them romance novels, you know, about people in the Victorian era or, you know, rich people in Europe or whatever - it was stuff that my mom read, and they were leftover books. And every now and then I would read about a woman who had malaise and for some reason I just pictured this woman lounging somewhere, not happy but relaxed somewhere, resting, perpetually resting because she had malaise and everybody understood, well, "Lady Beth has malaise so you simply cannot bother her." Only to grow up as an adult and have malaise myself and I'll tell you it's no picnic.]
James: She really wanted to draw attention to the disparities in treatment that happen for Black people of marginalized genders, especially, and the impact that, you know, class and money has on your access to healthcare.
[Tinu: So when people are fundraising for their healthcare, it's because they've already done all the things that society would have you believe will save you if you get sick. And it's not enough.]
James: Tinu really believed in solidarity with the most marginalized among the disability and Long COVID communities. Jermaine Greaves says ...
[Jermaine: She was a strong supporter of Black Disabled Lives Matter when it started. ... She will be greatly missed because she stood for community, mutual aid, and the peace of community.]
James: And, you know, she also worked tirelessly to share her experiences and even while managing, you know, symptom flares and a relapse with her cancer, she was always kind of working or she was always working to boost others' mutual aid.

I think I remember probably the first few times that Tinu was on my timeline, it was her, you know, boosting other folks' mutual aid ... something also noticed by her friends, like Brooke Crume.
[Brooke: If you have Googled her, if you looked at her social media, then you know that when she had $100, 20 of it was going to go to somebody in the community so that they could eat that day. Even when she was having a really hard time affording her cancer treatment, she always made sure that her community was taken care of the best that she could.]
Miles: To me, one quote that stuck out was from Sarah Renee, she stated that Tinu advocated with spoons she didn't have not just for herself, but for the entire community. She was always looking out for other people as she went through so, so much herself.

James: Her advocacy was just one of many ways she aimed to create access for disabled people...She founded Everywhere Accessible in 2019, right before the pandemic hit and was working on several different initiatives to increase access everywhere.

One of Everywhere Accessible's partnerships was with Calling Up Justice. Claudia Alick describes...
[Claudia: One of our projects ended up creating Why Mask?, which is now an international program that encourages people to embrace masking for each other's safety.]
James: A part - a big part of her advocacy was, you know, as you mentioned before, [Miles], ensuring that the message got out there that people who are immunocompromised, people living with Long COVID, they're not abstract people, and that, you know, there is real material harm associated with not masking.

Um, while, you know, her cause of death wasn't stated, she did write on August 3 that "people not masking is literally killing me. If I do die, this is what killed me - people not masking or believing Long COVID lowers your immunity."

And it's really sad and frustrating that, you know, there continues to be this, I don't know, that there continues to just be - a lack of empathy, a lack of understanding of how, how, like, materially helpful it is to put on a mask to, you know, protect people.

How many more people who are loved have to die in order for people to take it [COVID and Long COVID] seriously?

Betsy: We know, obviously, in Tinu's case, as you said, the cause of death is not something that has been publicly shared, but we know people have died from and with Long COVID. And I think there is a real need for research and for, like, public health institutions to recognize this and to take it seriously.

The CDC has counted around 5,000 deaths with Long COVID, but everybody knows that is a really, really big undercount because it is just not being tracked at the level it should be tracked. Like you said, James, it shouldn't have to add up for us to take it seriously, but I think there also is a lack of recognition of the scope of the problem.

James: Still, disabled people including Tinu have been sounding the alarm for public health institutions for years, and practicing community care while they're doing it. Tinu's interview with Rooted in Rights was four years ago, and in it, she says ...
[Tinu: We need better care because it's not just the physical toll on the body, it's not just the emotional toll on the mind, it's not the financial toll on the individual, even. It's the fact that this is going wide, quietly. Soon my problem is going to be everyone's problem.]
James: Those who loved Tinu say her legacy includes the writing she gave the world, like Claudia Alick.
[Claudia: When I found out Tinu had passed, I read their last blog post to an audience in one of our regular live streams, and was comforted by the idea that even in death, Tinu continues to inspire all of us across space and time. She will be missed.]
James: And also the way she moved through life. Here's Cyborg Jillian Weise:
[Cy: Tinu did not care if I was under pseudonym or if I was under my actual name, Cyborg Jillian Weise. Tinu treated me the same with equality, kindness, honor. And Tinu showed up for me over and over and over again. And when Tinu was struggling, Tinu still showed up for me. It's one of the biggest things that Tinu taught me, how to show up for other people.]
James: To honor Tinu - and the disabled rage many feel at a death that shouldn't have happened - her friend Brooke Crume has a call to action:
[Brooke: And so I do ask if you hear this podcast and if you care about Tinu, try to lean into your community, try to protect yourself and high-risk disabled people, try to wear a mask when you're in a really congested area, when you're in an airport, when you're in a doctor's office, anything you can do. Because it wasn't fair that Tinu got a secondary lung infection. It wasn't fair that her body couldn't fight cancer and all of these things at once. And she deserved more time, and she had so many things that she wanted to do.]
James: Tinu's family and friends are currently fundraising for her funeral, medical expenses, and other costs. And we have more about where you can find that link on our website at thesicktimes.org.

Miles: And there's also a virtual memorial this weekend. There's a registration link that was out this week, but it may have closed before the weekend. [Editor's transcript note: The registration link is closed at the time of this podcast's release.]
[Instrumental theme song excerpt plays underneath the rest of the podcast]
James: That's all we have for you this week. Thank you to everyone who shared their memories of Tinu.

This podcast and The Sick Times are supported by you. You can help us keep this work going by donating on our website.

Still Here is a production of The Sick Times, a nonprofit newsroom chronicling the ongoing Long COVID crisis.

Our theme song for this episode is the Rude Mechanical Orchestra's rendition of Which Side Are You On?, originally by Florence Reece. I'm James Salanga and I produced this episode. Our engagement editor is Heather Hogan. Miles Griffis and Betsy Ladyzhets are your co-hosts and The Sick Times' co-founders.

Thanks for listening.

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Still Here, October 11: Links and transcript - The Sick Times

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This episode honors Tinu Abayomi-Paul, who was "so funny ... and so clever" and "wonderful at supporting disabled people in a beautiful and authentic way."

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I was fortunate to know Tinu through our work on the Community Leadership Council of NPAC. I did not know her as well as others did, unfortunately. Her words were always profound, and I was in awe of her talent, expertise, vast knowledge, and compassion for our communities of color and disability communities. At our last meeting, which was truly special, Tinu shared invaluable insights for our upcoming Real Pain Stories campaign. I deeply regret not reaching out afterward to express my gratitude for her contributions, as I didn't want to impose on her given her health struggles. Though I know she wouldn't have seen it as that. Yet, like many in the disability community living with chronic illness, she persevered and brought her unique light to our NPAC meetings and conversations. I'm grateful to have served alongside someone as phenomenal as Tinu. May she rest in power and peace. My thoughts are with her family and loved ones during this difficult time.

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I'll miss being in community with you Tinu

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I'll miss being in community with you Tinu

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I was fortunate to be mutuals with Tinu on various social media accounts. Tinu was such a welcoming person, and I appreciated her being supportive of the work I did.

Tinu deserved so much better than the capitalist landscape that is the United States.

I have been going back to this piece she wrote which was part of a book. https://www.yesmagazine.org/social-justice/2022/02/24/what-black-disabled-women-want

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The basic human rights of proper health care and opportunities through work should be available to everyone.

To be a Black disabled woman in America is to be unwillingly invisible in your greatest time of need. The most visible layer as a Black disabled person is our Blackness, which is constantly under the threat of scrutiny, assumed guilt, and, as logically follows, persecution.

Our pain isn't taken seriously, as is borne out by multiple studies as well as my own experience of chronic pain. We are believed to be able to bear more pain. Some medical devices don't work as well for us due to our skin color. These compounding issues of racism, sexism, and ableism endanger the lives of Black disabled women.

At this point, there are two basic things that disabled people and chronically ill people don't have-upward mobility in alignment with our ability to work and access to proper health care. As a disabled person, you can never be sure you received proper care. Navigating what this country calls a health care system is difficult. If you need to see a specialist, which most chronically ill or disabled people do, you have to go through paperwork or related delays. Then there's everything before the appointment: setting the appointment in coordination with related testing and arranging transportation.

To add insult to injury, disabling conditions can and have contributed to lack of access to equal employment opportunities, which Black people already do not have access to; this can get more complicated for those of us whose symptoms or disabilities aren't apparent by looking at us. Essentially, thousands of eligible people each month d ie waiting for benefits. And if you're lucky enough to get them? We are pretty much taking a vow of poverty, as our ability to acquire assets and generate an income is limited by our disability.

Moving forward, policymakers need to recognize that health care is a human right and not a privilege afforded to those who can afford it. Having affordable or universal health care for all would be a simple way to help solve the problem of chronically ill and disabled people being treated better, partly because being able to fully afford care would stabilize many of us. Even more would not develop the additional conditions that result from not being able to receive stable or proper treatment.

The Centers for Disease Control and Prevention's G uideline for Prescribing Opioids for Chronic Pain, for example, has made it incredibly difficult for pain patients to receive treatment (that is 50 million Americans who used to be able to live and work, albeit in relative discomfort, left in pain). While there is a problem with opiate overdoses, restricting prescriptions has not decreased the rate of overdose and addiction. That's because, despite exciting television plots, overprescribing hasn't been the problem with opiates since the mid-2010s. The problem now is illegal fentanyl being sold to desperate people who try to get their medication without going through the proper channels.

Being better served in health care also means listening to disabled people. Health care facilities could hire various types of chronically ill and disabled people to give feedback in all areas. It's hard to see what we need if no one asks us.

We're often uncomfortable in pharmacies and waiting rooms, made to stand in line. Meanwhile, the system of taking a number seems to work well in delis, butcher shops, or motor vehicle departments. Moreover, we often don't get the services we need until nondisabled people need them. We have asked for video doctor appointments and telehealth long before the pandemic, but once the rest of the world needed them, they became commonplace quickly.

The problem of the perception of Black disabled women is a long-standing one. It's complicated by intersectionality -we aren't a monolithic group with a one-size-fits-all solution. But if the world doesn't treat white women with the same cookie-cutter approach, why do that for Black women?

With respect to generating access to equitable health care, especially for Black women, part of the answer is self-evident. The recent victories of women like Stacey Abrams, Serena and Venus Williams, Kamala Harris, and the endless list of Black women who excel, some with disabilities, show the world what we already know: that Black women can lead. And so we should let Black women lead, unencumbered, with respect to assisting in equitable health care services for disabled people. Putting more Black women in charge would not be an act of charity. The economy has lost $16 trillion due to racism, so it's hard to avoid the conclusion that subverting racism would be profitable.

Being put in charge isn't the only resolution here. As a Black disabled woman, I would not have to worry about being well enough to work if I could receive the proper accommodations to apply for jobs and still be considered fairly. Thus, workplace accommodations should be the norm and enforced by law.

Begin by including accommodations in job listings. So many job descriptions say that they require sitting, standing, lifting, or driving, but in practice, the majority of those jobs could easily be performed without any of these restrictions. Currently, there's not enough enforcement of the Americans with Disabilities Act (ADA), and if there were, there's a huge loophole in it called undue hardship. If a business can claim that accommodating a disabled person would be too expensive or cumbersome, they can claim undue hardship, which means no accommodation for disabled people or people with chronic illness.

As a small business owner myself, I understand why these guidelines are in place. But perhaps instead of having a loophole that allows businesses not to help disabled people work comfortably, there should be programs that incentivize businesses to remove the obstacles that prevent disabled people from being able to work. The Small Business Administration could be incentivized to fund businesses that are making efforts to hire and serve disabled employees and customers.

Finally, it must be understood that disabled people don't have "special needs." We just have needs that, like everyone else's, differ from person to person. Giving them a separate name makes it sound like we're being given something extra. Then when it comes time for legislation to help change our circumstances, the perception hurts our chances of success. Yes, it is possible that, in the workplace, we may need better chairs, but wouldn't this change benefit all employees?

Give us, the chronically ill, mentally ill, disabled, neurodivergent, deaf, or blind, the same things, beginning with access to proper health care and opportunities for upward mobility in alignment with our ability to work.

Disabled people want the things the rest of the world takes for granted. While it would make life a bit more boring than what we are used to, we would rather be treated as regular people, allowed to fully thrive.

This excerpt by Tinu Abayomi-Paul is from The Black Agenda: Bold Solutions for a Broken System, edited by Anna Gifty Opoku-Agyeman. Copyright © 2022 by the author and reprinted by permission of St. Martin's Publishing Group.

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The basic human rights of proper health care and opportunities through work should be available to everyone.

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Tinu was there for me when I was going through an EXTREMELY dark time and a time where I was being denied peace due to my medical condition. She reminded me how I was allowed to feel what I feel. She don't know cause never got to tell her : I wanted to take my life this day. Her validating me stopped me and saved my life. I will miss you Tinu. I miss you so much.

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I feel so fortunate to have been mutuals on social media with Tinu. I always looked up to her for her kindness, her welcoming personality, her insight, and so much more. I'm grateful to have shared community with her, and I am so thankful for all the warmth she's brought into this world. She was truly a beacon, and her absence is sorely felt.

Tinu deserved so much more than the cards she was dealt, but I hope she's resting well now. I wish we'd had more time together.

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Your last request from me was the chance to Zoom and we never got that. I will forever remember the indelible act of your love upon us all. Thank you for choosing to call me friend, thank you for trying to understand me, thank you for loving me. I will never forget you.

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There will never be another. I love you, Tinu. May the ancestors welcome you with open arms. 

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There will never be another. I love you, Tinu. May the ancestors welcome you with open arms. 

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i am grateful to have been mutuals with Tinu on twitter, she truly was a force to be reckoned with and someone i looked up to. her kindness and no nonsense approach to doing what needed doing (whether that be advocating for herself, her loved ones and community, or sharing her wisdom and her life with others)reminds me of my late aunt who passed last year. the community and mutual aid spaces Tinu created were one of the only things that allowed me to move through grieving my aunt while escaping homelessness, and i owe her so so much. i hope she is resting well.

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I didn't have a close personal relationship with Tinu, but we had many friendly exchanges over the years on Twitter. I followed and respected her as a pillar of the disability community.

Tinu helped many people with her educational posts and her generosity of spirit, boosting mutual aid posts for others (including me) despite her desperate need for mutual aid of her own.

It's not fair that she was infected with COVID in the first place. It's not fair that she had to cope with cancer and Long COVID at the same time. It's not fair that her life was stolen from her.

Her beautiful soul will be missed for the rest of our lives.

Goodbye, Tinu.

Love, Karistina

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There are no words to express how much we are hurting. She is now resting peacefully. 🌸 we all love her so much.

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This is the last photo Tinu sent me in her inimitable way of saying “ Hi.”

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Sending you home with love and gratitude, Tinu.

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Sending you home with love and gratitude, Tinu.

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Tinu was integral to everything we’ve built at National Pain. We quite literally wouldn’t be the organization we are without Tinu. She was fierce and compassionate, generous and passionate. She taught our community so much about advocacy, owning and telling your story, sharing on social media, and how to have an impact.  Tinu and Charis co-lead our last Community Leadership Meeting, where we discussed posting #RealPainStories for Pain Awareness Month in September.  Tinu developed materials for everyone to use, and it especially grieves me that she didn’t make it through September.

I will miss, admire, and be grateful to Tinu always.

Love,

Kate

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[ID: A Black woman with braids and oxygen tubing wearing a black headband and tank top smiles at the camera. Her right hand is raised, waving].

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I appreciated her presence so so much. She was so determined to make the world a better place for young people, like me. She was so passionate about change and community. I will miss her dearly.

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There are no words to express the sadness and the heartbreak I feel of hearing and seeing that you are gone. You have been my friend, my confidant, and my safe space when I felt I didn't have one. Thank you Tinu. For being such a beautiful human while you were here on Earth. I love you, every inch of your soul, your heart and every part of you.

We will meet again. We will. Until then, rest as much as you can.

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You are already so very missed. I don’t really have words, so I am sharing some work that I have been blessed to collaborate on with our dear sister.

https://youtu.be/ACT1LMagFX0?si=-zCfRTif2w7BRMpt

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Thank you for encouraging me to know that it’s okay to be uncertain and afraid. I wish I had a chance to finish this so that you could have read it, but it will now exist forever in this form…raw and real, just like you.

Soar, sis.

Much love from Morénike Giwa Onaiwu

https://www.whoneedsnormalcy.com/2024/10/untitled-musings-for-tinu.html

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(Before today, the only person who I ever shared this particular piece of writing with was our beloved sister Tinu Abayomi Paul, disability…

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Tinu was a great woman.  I wish she hadn't been forced to be one.  

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Tinu was a great woman.  I wish she hadn't been forced to be one.  

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I didn't want Tinu to be great. I had the privilege of seeing her in the spaces when she wasn't trying to be perfect, because I deliberately helped create spaces where perfection wasn't necessary. When I pitched in to try and help Tinu, with money, with retweets, with everything I could, what I was trying to help her do was create space for her to be mediocre, to be broken, to be beloved, and not to have be worked to death trying to continuously be fucking great. Tinu was great, and with great effort, I was able to help create a few spaces where she didn't have to be great and could just be Tinu. It was all I could do, it wasn't enough, and the only way I will ever be able to honor who she was is by continuing to create and support spaces where people are beloved and don't fucking have to be great.

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Tinu was a wonderful woman, an advocate, a positive beacon of hope, and a force of nature. I didn’t know her well, I loved the engagement and positivity she spread on my Twitter timeline; I loved her energy. My jaw dropped when she decided to follow me on Twitter, I wish I had the energy to converse, unfortunately I didn’t at the time and I’m saddened that I never gave myself that opportunity. Tinu was taken from this world far too soon. I am enraged by her passing. She was such a light, and was able to help so many despite all of the physical and medical problems she faced. My heart is broken, for the disabled community, her family, her friends, and her loved ones. My heart broke when I read the news of her passing. Tinu is loved by so many, myself included.

Tinu, I will miss your smile, laughter, the advocacy you brought to social media platform(s), for disabled individuals when the world was so dark and bleak. Fly high. You will be missed.

Ollie

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Tinu helped in the disabled.social mod chat, and she provided support for our project on Mastodon. We shared kind words of support often. She taught us so much about boundaries, about moderation, and her righteous anger and love a bastion of hope. Her last message to me was one of fierce support, and she reminded me that no matter how poorly others may treat us -- we can rise above and show our truth in a kinder but assertive way.

She taught me so much about how to be assertive and ask for help when I need it, especially as I'm a shy person who lurks more than I post.

I miss her so much. I will continue the fight against ableism, the fight for a better world, the fight for a world where justice, mutual aid, and accessibility are the core of our communities. Much love to you, Tinu. We all love you and miss you.

-- Aidan (Aaidanbird)

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I don't even know what to say. The world lost someone truly important and beautiful in a way I don't know how to put words to. She had a capacity to teach people how to be better at Love and Community and hope and perseverance. She taught me so much and I try to move in a way she would be proud of as I support my community and Mutual Aid.

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My life was very privately terrible between 2016-2019, the time I become Twitter mutuals with Tinu. I had no idea how to process or discuss horrifically painful disabilities that landed me in Palliative Care by age 28. I used to write, but I emotionally and physically lost that outlet. Tinu made an effort to reach out during the years I was just starting to join Disability Twitter. She had that tendency to see people on the periphery going through it hard and bringing us into community. She quickly became one of the only people in media I knew who valued others in media even if we couldn’t work well or work at all anymore. Her warmth and openness made me open to disability communities instead of shutting down and no longer opening up to anyone, during a time I felt very alone, frightened and my doctors were unsure if I’d survive. Tinu was the kind of friend who saw value in everything we are or feel or endure. She’d retweet a shitpost or post venting about symptoms to show her support as often as she’d retweet a medical fundraiser or call for action. Many nights we would be up in painsomnia on Twitter or texts talking, from serious life stuff or just joking and laughing. Especially when things got tougher since Long Covid, and laughing is all we could do sometimes when we could barely think or talk. She connected so many people from overlapping or entirely different communities just by being genuine and supporting others who were genuine. She showed me how showing up even when our symptoms were at our worst still was meaningful, and even necessary. I’ve been a longtime housebound (and bedbound for years) person, and Tinu reminded me that I could still lean into my fundraising background to help others because every little bit helps. Tinu did so much highlighting issues impacting Black disabled women in particular, as much an icon on Black Twitter as Disability Twitter. In the last few years, Tinu talked with me a lot about how we could bolster mutual aid projects and rebuild communities on Disabled Social and other servers on Mastadon, try to do the same on Bluesky and elsewhere. As ill as she was, Tinu offered to help moderate posts on Disabled Social as it grew. She was so focused that nobody would get left behind. I feel indescribable rage and sorrow that US healthcare systems left her behind. Honoring Tinu means holding that rage and sorrow in our hearts with all of the love and compassion for others, just like she did every day. I’m proud of you too, Tinu. I still ride for you. Emily

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Testing COVID-Positive: My Experience as a Black, Disabled, Immunocompromised Woman

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Testing COVID-Positive: My Experience as a Black, Disabled, Immunocompromised Woman

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"I hope my story humanizes the experience of having COVID for people," says disability advocate Tinu Abayomi-Paul, who lives with multiple chronic conditions and cancer. "Those of us at high risk aren’t abstract people you’ve never met. We’re people you know and love, and we might die because you won’t wear a mask."

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My COVID Story as a Black, Disabled, Immunocompromised Woman

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Learn what it’s like to experience COVID-19 as a Black, disabled, immunocompromised woman navigating a pandemic.

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you were born

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Tinu Abayomi-Paul aka Empress... I think it is important to hear black and disabled voices in higher education and those who have left higher education. Your higher education experience is valid even if you aren't in classes or in a career in academia. 11:10 PM Great so even as a dinosaur lol I am relevant! Yay! 11:11 PM February 27, 2021 LOL, you aren't a dinosaur You are a unicorn, they are far cooler 🦄 LOL 😂 

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Full alt text:

4:34

Tinu Abayomi-Paul aka Empress...

thank you for holding space.

I try so hard to show my ass but they will throw me back up on that pedestal. It's no place for an activist or advocate in my opinion. I don't mind being admired but being idolized is dangerous.

2:09 PM

I could not agree more. I can't live on a pedestal and not just being allowed to be, the spaces where I can just have support without being the leader in the space all the time is important. I think that admiration can walk a fine line to idolizing.

5:44 PM

You said a WORD about not being the leader all the time!!

🔥

Start a message:

Thank you for holding space with me.

Tinu helped me develop as a disability advocate

Tinu helped me to find balance.

Tinu was a human being

Tinu was a friend

Tinu was a daughter

Tinu was more off the pedestal

She was a joy to know

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4:34 Tinu Abayomi-Paul aka Empress... thank you for holding space. I try so hard to show my ass but they will throw me back up on 2:09 PM  that pedestal. It's no place for  an activist or advocate in my  opinion. I don't mind being  admired but being idolized is  dangerous. I could not agree more. I can't live on a pedestal and not just being allowed to be, the spaces where I can just have support without being the leader in the space all the time is important. I think that admiration can walk a fine line…

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Tinu, you are so loved. You will never be forgotten. Miss you.

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As a relatively newly disabled person, I've been catching up on all the incredible work the disability community has already done. Early on, I discovered Tinu on Twitter and I feel like she was standing at a virtual gate to the disability community, welcoming everyone into the community. Showing and exemplifying how generous and loving the disability community can be.

She was also so very funny and just a general light in the hellscape that Twitter can be sometimes.

She helped so many people crowdfund and organize to cover expenses, and inspired me to use the privileged parts of my identity to help others. She was such a presence in online disability spaces and will continue to be with us all as we move forward in the fight for justice and accessibility. #ForTinu <3

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The following is what I wrote for Tinu's HomeGoing service, as well as links to the actual threads so you can read her own words in full, as I did have to paraphrase a bit to fit the speaker time limit.

Thanks everyone, for the chance to memorialize Tinu's bright, bright presence on social media, with her efforts to support, educate, and advocate for others. As much as I can at least, with these 3 threads she reshared before she passed.

The first thread of Tinu's I would like to share is about sleep and rest. She says, "Start praising yourself for sleeping. I used to berate myself for waking up past ten, even though that usually meant I only slept 4-6 hours. Ever since I set a sleep goal of 8 hours and started considering THAT success instead of being awake at a certain hour, I'm much happier."

https://x.com/Tinu/status/1570498205665853440?t=nnmvhfegYgEpWNMic1_wbg&s=19

The second thread is on individualism (and racism) in capitalism, which was a clear part of her advocacy for our community. She asked, "Why does capitalism or white supremacy care about you being an individual?" then tells us, "Groups are harder to gaslight and control, unless that group is reinforcing capitalist and white supremacist programming. Working cooperatively lessens their power. Working outside the prescribed systems lessens their power. Fixing your problems as a community lessens what they can promise you. Marginalized folks won't get safety nets for free." This was why she was so compelled to intertwine our community together to support one another.

https://x.com/Tinu/status/1819146380436472016?t=RCKoRiH3BEZtk5Xy-FdPew&s=19

In the final thread, she talks about doing what you can. She knew that "sometimes fighting feels hopeless because we come from instant gratification programming. It hurts that it takes months or years to get help for ongoing emergencies and genocides." she also said "We are saving who we can as much as we can," and that "Some of us can’t do anything and have to focus on saving ourselves or doing smaller jobs, but there really aren’t smaller jobs. You still mean everything to the people you put your heart into." She said this as she "[mourned with us] over the people we couldn’t save. Senseless, painful deaths of brilliant, exceptional people.Ordinary folks with giant hearts. Kind people who never bothered anyone," in her own words. And now, we devastatingly mourn her too. Now that she's gone, we have to honor her and keep helping each other.

https://x.com/Tinu/status/1764958212481020250?t=kWyYIjdpvPo74WnKDoiKeQ&s=19

thank you.

-Camille

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Suaimhneas síoraí Tinu. Ní fhágfaidh tú ár gcuimhne nó ár gcroí go deo.

Morgan W.

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When looking for a poem to tribute you with I knew Maya Angelou was the way. This poem has a sapphic romantic flair to it haha, which I think you would’ve loved. It’s vaguely flirtatious, but I meant it from a place of respect.

Respectfully, beautiful, you are so loved.

You were there for me when I was so fearful and feeling so alone. I’ll never forget you.

In and Out of Time: by Maya Angelou

The sun has come.

The mists have gone.

We see in the distance... our long way home.

I was always yours to have;

You were always mine.

We have loved each other in and out of time

When the first stone looked up at the blazing sun And the first tree struggled up from the forest floor I have always loved you more.

You freed your braids... gave your hair to the breeze.

It hung like a hive of honey bees.

I reached in the mass for the sweet honeycomb there...

Mmmm...God how I love your hair.

You saw me bludgeoned by circumstance.

Lost, injured, hurt by chance.

I screamed to the heavens...Loudly screamed...

Trying to change our nightmares into dreams...

The sun has come.

The mists have gone.

We see in the distance our long way home.

I was always yours to have And you were always mine.

We loved each other

in and out -

in and out -

in and out of time.

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Graphic of Tinu, surrounded by flowers draped about her bodice, smiling slightly, with red ringlet curs framing her face. 

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I come from a place where if you could hide disability, you did, at all cost. Your family covered for you when your mask slipped. I got so good at masking, that nobody knew, not really. But after being assaulted multiple times, and injured multiple times, those finely honed mechanisms that allowed me to kind of blend into society, crumbled into a million pieces and what was left was a mess of a woman, broken body, spirit, unrecognizable. I didn't know what to do with myself. But God allowed me to find Chronicloaf, and Tinu, and Mae! Tinu spoke about disability like it was the weather and I wasn't used to that, she helped me unlearn the generational shame that shoved me so far into disability's closet that speaking about it felt like dying. I wouldn't be on a path to healing today, had I not met her. I'm gonna miss her, and it feels unfinished, but I realize now that she left us everything we need to be successful. Thank you, Tinu! Thank you Chronicloaf community. You literally saved my life.

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I was there for the Zoom meeting funeral but I waited too long that I missed my turn and I am so sorry to everyone. I feel like I failed Tinu because I really wanted to be there for her and I tried to get my voice but no one was listening.

But that being said, Tinu was always there for me. She believed in me and wanted to help me at every possible step and gave me great advice how to get my tweets for mutual heard.

And I definitely remember one of my proudest moments was I did a live tweet donation drive of Thor: Love and Thunder to get her GoFundMe donated. And she inspired me to do more. Especially when the first one I did was for a mutual of hers and the movie of my choice was A Nightmare on Elm Street 3: Dream Warriors.

But she even helped me directly as despite me worrying about her financial state, she donated 50 dollars to me anyway back in 2021. And I'm forever grateful she did and everything else she's done for me.

The last thing she tweeted to me was when I finally got my ID in West Virginia and I showed a picture of the office to show I'm telling the truth. And she said I didn't need to because she trusts me. And that really meant a lot to me.

So I was hoping I would not see Tinu pass away and yet, it did. And to say I wasn't happy is an understatement. Tinu really meant a lot to me. I haven't had time to properly grieve or anything due to my personal problems but that's neither here or there.

But I know one thing, I promised her, my vow after she passed away that I will keep on fighting. I will keep on finding a home, a job, everything.

Tinu, you really meant so much to me. Especially given we're both autistic.

I will really miss you, my friend. You were always a solid friend.

Sincerely yours,

Sebastian/Sersi

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Read writing from Tinu Abayomi-Paul on Medium. I write short posts laughing about the mess that is me. And long researched essays on being a better citizen of The World. We’re not free until we’re all free.

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Some women leave so much love and peace in the lives they touch. Having any sort of connection with Tinu, even from a distance, felt like being kissed by the sun.

We never met in person, still her warmth always reached me. Tinu showed me that life goes on after abandonment. That there will be people who love you on the other side, and who do so with ease. I am forever thankful to her, for her putting herself out there, and for sharing her mind and heart. Tinu uplifted and spoke about women in our community with such pride. Getting to know women like Tinu is why I look forward to seeing where my future takes me. Tinu showed me that a vibrant enjoyable life is achieved by owning your story, reaching out, and using your voice. That kindness is a lifestyle, it's something you choose, and fight against all odds to exercise. That our boundaries are a vital exercise of kindness towards ourselves. She exemplified that there is no time limit to making new connections, indulging in our hobbies and interests. I miss her so much. Someone who is loved this much, by so many, will no doubt be loved forever. Her thoughtfulness and love moved and grounded people in ways I'm just thankful as fuck to have gotten to experience for myself. My heart goes out to Tinu's family, to her friends she held close, and especially to her children, who she spoke so highly about and loved so much. And for those of us mourning Tinu from a distance, showing up as a community, for the disabled community, and for Black disabled women, is paramount now more than ever. Tinu proved that on the other side of feeling at war with yourself, there is so much love waiting for you. She gave us a tangible example of exactly how to help each other and make change where it counts. We lost such a beautiful warm hearted woman to policy that neglected her, and continues to neglect us all. May we continue to learn, put ourselves out there, take accountability, make changes, and try to have a positive impact on all the lives we touch. We can do so, and so we should. If for nothing else, #ForTinu.

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… for making me feel welcome to the disability community on Twitter back in the day, and for honest interactions. You & many others helped me face my own ableism, but you was an especially bright light in a shadowy pit I never realized I was stuck in… the same energies that try to grind us all to dust & invisibility.

I wish I could have done more for you.

Will try to do what I can, in memory, for love & justice.

May all human & nonhuman systems of lies, oppression, greed, and bigotry be turned over.

May love be healed & this planet have peace… or whatever She needs & wants.

Rest in peace & power, Tinu.

-Christina

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Everyone has said and shared so many things I would say, too.

It's enough to say, Thank you, Tinu.

Heidi Sue Roth

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Tinu said

“Tell me something good that happened today.”

Today was beautiful

for a moment, I swear,

you were everywhere.

In a vibrant Autumn sky, in the gold edging leaves,

in busy midday noises and the quiet in between.

It was beautiful, Beautiful,

you were everywhere.

For a moment.

L. Es.

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I met Tinu at a very hard time in my life. I was struggling with a new and painful physical disability. I didn’t have a community. I was lost. Tinu introduced me to the disability community on twitter. She was kind and gracious to me even in the last days of her life.

She gave me a sense of what disability could look like. She made me care about my life again. She made me into an advocate for myself and disabled people everywhere. She saved my life. That was the last thing I ever got to tell her.

She was my friend.

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Tinu was an incredibly loving, driven individual who was at once gracious and took no nonsense from anyone. Whether you were newly disabled or had been disabled your whole life, whether you had a deep understanding of disability justice or were completely new to things like removing ableist language from your vocabulary and using alt text, Tinu made space for you.

Her mutual aid fundraising work saved countless lives, and gave hope to countless more who had been left to die by the capitalist system once their bodies could no longer keep up with production. She practiced and encouraged intersectionality, prioritizing the most marginalized of society and demanding that we all do the same as her followers.

Tinu’s untimely and preventable loss at the hands of medical negligence leaves a massive hole in the online disability community. The injustice of it must galvanize us all to fight for universal free healthcare and reparations for Black people. It’s the least we can do #ForTinu.

I hope and pray that Tinu is resting in peace, love, joy and power now, singing and dancing with the ancestors. I hope her bereaved family feels the presence of her powerful spirit watching over them as an ancestor and angel now.

Tinu will be missed forever.

-Charlene aka HeironymousBish