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Orient patient and provider advocates to disability justice and its core principles.

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Orient patient and provider advocates to disability justice and its core principles.

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Outline how various systems marginalize disabled people and impact their health.

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Outline how various systems marginalize disabled people and impact their health.

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Identify ableism, disability stigma, and other biases in the provision of care for high-risk pregnancies.

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Identify ableism, disability stigma, and other biases in the provision of care for high-risk pregnancies.

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Center disabled people in advocacy around high-risk pregnancies.

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Center disabled people in advocacy around high-risk pregnancies.

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"Refusing to perform neurotypicality is a revolutionary act of disability justice. It's also a radical act of self-love.”-- Devon Price

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“The peculiar drama of my life has placed me in a world that by and large thinks it would be better if people like me did not exist. My fight has been for accommodation, the world to me and me to the world.”-- Alice Wong

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“The disability is not the problem, the accessibility is the problem”-- Mohamed Jemni

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“When other people see you as a third-class citizen, the first thing you need is a belief in yourself and the knowledge that you have rights. The next thing you need is a group of friends to fight back with.”-- Judith Heumann

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Changing The Way We Talk About Disability | Amy Oulton | TEDxBrighton

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Changing The Way We Talk About Disability | Amy Oulton | TEDxBrighton

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Changing The Way We Talk About Disability | Amy Oulton | TEDxBrighton

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The Psychology of Ableism | Kathleen Bogart | TEDxUofW

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The Psychology of Ableism | Kathleen Bogart | TEDxUofW

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The Psychology of Ableism | Kathleen Bogart | TEDxUofW

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Pass the Mic: Dr. Jewelles Smith on Reproductive and Sexual Care for Persons with Disabilities

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Pass the Mic: Dr. Jewelles Smith on Reproductive and Sexual Care for Persons with Disabilities

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International Confederation of Midwives (ICM)

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Pass the Mic: Dr. Jewelles Smith on Reproductive and Sexual Care for Persons with Disabilities

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The Curb-cut Effect and Championing Equity

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Centering the needs of underserved people often has a broader impact on the community. The same is true in schools.

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Rebuilding a Reproductive Future Informed by Disability and Reproductive Justice

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Rebuilding a Reproductive Future Informed by Disability and Reproductive Justice

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Reproductive Justice for Disabled Communities

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Reproductive Justice for Disabled Communities

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Reproductive Justice for Disabled Women: Ending Systemic Discrimination

Jeremy and Taylor Ellis, who are both visually impaired, stand with their baby in Cockeysville, Maryland, on July 24, 2020. (Getty/Andrew Mangum)

Introduction and summary

Authors' note: The disability community is rapidly evolving to use identity-first language in place of person-first language. This is because it views disability as being a core component of identity, much like race and gender. Some members of the community, such as people with intellectual and developmental disabilities, prefer person-first language. In this report, the terms are used interchangeably.
Access to reproductive health care continues to be eroded in the United States. In 2022 alone, 41 states have introduced more than 500 abortion restrictions,¹ and the U.S. Supreme Court is slated to decide a case² that will determine the fate of Roe v. Wade. Attacks on reproductive health care have a disproportionate impact on certain individuals and communities-particularly the disability community.

Reproductive and disability justice are both human rights-based frameworks that, at their core, share fundamental similarities: They both prioritize the right to bodily autonomy and self-determination; the right to raise children-if one chooses to have them-with dignity and in a safe environment; the right to access the health care one needs, free from political interference or stigmatization; and the right to community care. Yet even with such overlaps, the reproductive justice and disability justice movements have rarely interacted due to misunderstanding and miscommunication, particularly around abortion. Through the leadership of LGBTQ, Black, and Indigenous activists and visionaries,³ reproductive and disability justice communities are reframing the conversation to be more inclusive of multimarginalized individuals. Exploring the intersection of the disability and reproductive justice communities is not only necessary to better understand how current societal structures hinder or restrict people with disabilities from making reproductive health decisions that are right for them, but also what policy solutions must be crafted in order to ensure reproductive justice is a reality for all.

This report reviews the historical context of the disability and reproductive justice movements, discussing how racism, sexism, and ableism have built discriminatory structures-from barriers to accessing reproductive health services to issues around forced sterilization, sex education, guardianship, parenthood, and sexual violence-that have kept disabled people, particularly disabled people of color, from achieving reproductive equity and justice. It then discusses the work done by the Disability Justice Initiative at the Center for American Progress, which is an interdisciplinary team that utilizes a disability justice framework to study structural discrimination and its impacts on policy. Lastly, this report outlines future plans, emphasizing the importance of collaboration between the two movements.

Historical context

Racism, anti-Blackness, and misogynoir affect both the quality of life and actual lives of disabled people of color in the United States, particularly Black disabled women. These elements affect the way members of the disability community are able-or unable-to access culturally competent health care, education, and other systems; such disparities are profound with compounding identities such as race, gender, and disability.

The lack of data and research on the intersection of disability, gender, and race has impeded the creation of comprehensive reproductive policies. For every atrocity inflicted upon the disability community-eugenics,⁴ forced sterilization,⁵ a segregated education system,⁶ institutionalization,⁷ guardianship,⁸ sexual violence,⁹ and more-people of color endured heavier hardships that were lesser known due to centering disability only and not recognizing intersecting identities and realities. This lack of inclusion fostered distrust, whitewashing, and racism within the disability community,¹⁰ which isolated and excluded disabled people of color from painting a fuller picture of their experience.

The current generation of disabled activists, scholars, policymakers, and others is ensuring that the misdeeds of the past are not forgotten and is relentlessly pushing for more intersectional perspectives. As Black disabled ancestor Fannie Lou Hamer is famously known to have stated, "Nobody's free until everybody's free."¹¹ Freedom depends on truly creating the space and opportunity for all disabled people to be recognized, valued, protected, and supported-without exceptions or conditions.

Past misunderstandings

The reproductive rights movement has historically fought for the legal right to abortion. In connection to disability, this has occurred in an environment dense with misinformation and stigma about prenatal diagnoses of disability.¹² Disability-selective abortions, which are based on a diagnosis of disability before birth, are fueled in part by eugenics-with ableist assumptions about disability and lifespan, quality of life, and the "desirability" of raising a disabled child, among others.¹³ With high rates of abortion after a prenatal diagnosis of Down syndrome, for example, it is clear that the disability and reproductive justice communities must coordinate responses to the relationship between disability and abortion.¹⁴ Often, politicians and anti-abortion groups co-opt a disability rights argument to ban abortions based on disability diagnoses, but disability justice and reproductive justice are not mutually exclusive; these movements depend on each other.¹⁵

As a multi-issue think tank with deep expertise in disability, racial, and reproductive justice, CAP fosters enhanced collaboration between the disability rights and reproductive rights movements. CAP has facilitated roundtable events that centered Black disabled women, participated in forthcoming qualitative research on the experiences of women of color in reproductive health access and abortion, and published several articles on various topics, including health care access,¹⁶ police violence against Black disabled people,¹⁷ prevalence of sexual violence against disabled people,¹⁸ and the experiences of Black disabled women¹⁹ and others.

Key issues that must be addressed

There are several key issues essential to ensuring reproductive equity and justice for disabled women: access to reproductive health care; forced sterilization; guardianship; sex education; parenthood; and sexual violence. These are explored in further detail below.

Accessing reproductive health care

People with disabilities face numerous barriers to accessing reproductive health care, including:

Accessible facilities and resources. Health clinics may not have universal access or appropriate equipment to ensure that all people-including disabled people-can use their services, despite federal requirements that all health facilities comply with federal laws protecting the rights of people with disabilities and preventing discrimination, including the Americans With Disabilities Act, Section 504 of the Rehabilitation Act, and Section 1557 of the Affordable Care Act.²⁰ Barriers²¹ to care²² may include unaccommodating physical infrastructure, such as narrow doorways or examination tables, or nonadjustable chairs, as well as other inadequate equipment, including scales, x-rays, and mammography machines that cannot be used by people who have difficulty or who cannot to stand. Clinic forms that patients must fill out or written materials with information about the health services or condition can also be inaccessible to patients with intellectual and developmental disabilities or do not address the specific needs of disabled people.²³

Accessible transportation. Even if reproductive health care is available and covered by health insurance, physically accessing such services also poses challenges to people with disabilities. The problem is worse in rural areas,²⁴ where a lack of physical infrastructure-such as sidewalks and a limited accessible public transit system-make transportation to health care appointments incredibly challenging.

People with disabilities also encounter barriers to accessing specific types of reproductive health care

Access to abortion services. Medicaid is a critical source of insurance coverage for people with disabilities. More than 1 in 3 adult Medicaid enrollees²⁵ under age 65 has a disability. That is why restrictions such as the Hyde Amendment,²⁶ an annual appropriations rider that prohibits Medicaid dollars from going toward abortion services, have a disproportionately large impact on a person with a disability having access to the abortion services they want and need. Additionally, disabled and nondisabled women must have access to accurate information about disability after receiving a prenatal disability diagnosis.

Access to contraceptives. Contraceptives are critical for people with disabilities, not only for reasons related to pregnancy prevention but also to assist with menstrual management-particularly for those with physical disabilities.²⁷ However, disabled people have reported having their contraceptive needs dismissed or overlooked by health care providers, some of whom may not consider the difficulties that mensuration may pose to disabled people's everyday lives or who do not consider the sexual needs of disabled people and therefore also overlook the risk of unintended pregnancy.²⁸ Health insurance was also reported as a barrier.²⁹

Access to preventative screenings. Pap smears and mammograms are an essential part of preventative reproductive health screenings. A 2017 study of 290 mobility device users showed that 41 percent of users had experienced accessibility issues with exam or treatment rooms within the pervious 12 months.³⁰ The U.S. Centers for Disease Control and Prevention found within its 2013 National Health Interview Survey data that disabled women were less likely to receive pap tests and mammograms.³¹ Due to this and other barriers, women with disabilities are much more likely to have their cancer caught in later stages and have higher rates of mortality than their nondisabled peers.³²

Access to maternal health services. In recent years, pregnancy rates among women with disabilities have neared those of nondisabled women. Yet, women with disabilities experience much higher rates of pregnancy-related complications than the general population.³³ Specifically, women with disabilities are at higher risk for preeclampsia, thromboembolism (or blood clots in the lungs or legs), gestational diabetes, and hemorrhage. A systematic literature review found that women with physical disabilities typically experience a number of barriers when accessing maternity care, including a lack of provider training and knowledge around how to meet their maternal health needs, accompanied by providers' dismissiveness of patient concerns and inaccessible facilities and equipment.³⁴

Forced sterilization

Forced sterilization is inextricably linked to the eugenics movement, based on ableist and racist ideologies about who should be allowed to have children. In one notable case,³⁵ the 1927 Buck v. Bell decision, the U.S. Supreme Court upheld the forced sterilization of disabled people and people with "perceived" disabilities. The decision and other racialized policies in the United States were later used at the Nuremburg Trials by Nazi defendants to justify eugenics and forced sterilization. Buck v. Bell is still relevant more than 70 years later, as it has never been explicitly overturned. Eugenics, racism, and ableism have historically fueled the forced sterilization of women of color and institutionalized women, including through systematic programs in states such as North Carolina³⁶ and California.³⁷

[E]ugenic 'science' is still a vibrant part of U.S. culture that interacts with and shapes the reproductive lives of disabled women in many ways.- Mia Mingus, Georgians for Choice

According to the National Women's Law Center,³⁸ 31 states and the District of Columbia currently allow forced sterilization-and only three states explicitly prohibit forced sterilization of disabled children. Such laws work in tandem with other barriers to inhibit the full autonomy of disabled women. Previous data³⁹ suggest the "historical remnant of systematic oppression" might explain higher levels of sterilization for women with cognitive disabilities. Women of color are at even greater risk: One study⁴⁰ using data of women "at risk of unintended pregnancy" from the 2011-2015 National Survey of Family Growth found that 41 percent of Black disabled women used sterilization as a contraceptive method, compared with 28 percent of white disabled women. U.S. Immigration and Customs Enforcement (ICE) detention centers became a focal point of immigrant women's reproductive rights over the past several years, with ongoing formal investigations into hysterectomies⁴¹ of women detained by ICE. Therefore, forced sterilization is not only part of historical violence against marginalized communities, but likely continues to this day. As Mia Mingus⁴² notes, "eugenic 'science' is still a vibrant part of U.S. culture that interacts with and shapes the reproductive lives of disabled women in many ways."

Guardianship

Guardianship, or the legal authority⁴³ to make decisions for someone deemed "incapacitated," prevents disabled people and others from exercising their full reproductive freedoms. Despite a widespread lack of data, an estimated 1.3 million adults⁴⁴ are in guardianship arrangements. Several states⁴⁵ allow family members or care providers to request the sterilization of people under guardianship,⁴⁶ which therefore has a large impact on reproductive rights. Guardians also make decisions for the person under guardianship about contraceptives, abortions, sexual education, and other key factors to achieving reproductive freedoms. In one recent infamous example of restricted reproductive freedoms, Britney Spears was reportedly not allowed to remove her IUD.⁴⁷ In group homes and other congregate living facilities, beliefs about sex, intimacy, and sexuality can be imposed⁴⁸ on residents.

Several states are working to provide alternatives to guardianship, including supported decision-making.⁴⁹ Supported decision-making empowers disabled people to choose who will help them make decisions in a collaborative effort. Although still in its infancy, early state pilot programs and new legislation indicate⁵⁰ that supported decision-making has positive impacts on individuals' mental health and self-esteem, making it a viable alternative to guardianship.⁵¹ However, it is essential to study different models of supported decision-making to create more guidance around implementation and create evidence-based policies.

Sex education

Access to comprehensive sex education increases sexual freedom and dignity in sexual experiences. However, Robin Wilson-Beattie,⁵² a Black disabled sex educator, notes that doctors' offices or sexual education lessons often do not consider accessibility. The lack of competent and accessible sex education for disabled people places them in great peril of having their sexual autonomy and expression suppressed or invalidated. The ableism surrounding sexuality and access to education makes disabled people vulnerable to abuse and violence at higher rates than their nondisabled counterparts.⁵³ This ableism includes myths that disabled people are either nonsexual individuals or hypersexual and incapable of controlling sexual urges-and that sex is a luxury that disabled people do not have a right to access.⁵⁴ These conditions contribute to the desexualization of disabled people and the lack of urgency to ensure that they understand their bodies and the support needed to make consensual and fulfilling decisions in sexual exploration and interactions.

In practice, sexual education is often not comprehensive and rarely includes disabled people of color, LGBTQI+ people, and people at the intersection of multiple identities. Comprehensive sex education can range from discussing accommodations⁵⁵ during sex to dismantling ableist assumptions about disability and sexuality. Currently, access to sexual education varies greatly by state⁵⁶ and continues to be under attack. The Individuals with Disabilities Education Act's requirement⁵⁷ of free and appropriate public education includes comprehensive sexual education for disabled people. However, only about half of students who receive services have any reproductive health education. Among those who do receive sexual education at school, Black students are more likely⁵⁸ than white students to receive abstinence-only programming. Additionally, because incarcerated women and girls with disabilities are overrepresented, a lack of comprehensive sexual education only increases the vulnerability of girls entering the school-to-confinement pipeline.⁵⁹

Parenthood

The right to parent is a disability rights issue. About 4.1 million parents⁶⁰ in the United States have some type of disability. Disabled people deserve to have access to supportive programs and services that will ensure that they are able to parent to their fullest capability. But disabled people are still fighting for this right. Many states⁶¹ have policies in place that authorize the removal of children from the home solely based on the fact that one or both parents are disabled. In these occurrences, there are typically no suspected or proven accounts of abuse or neglect toward a child; the only rationale is a parent's disability.

The systemic barriers for disabled people to parent with full agency and dignity creates a ripple effect of trauma for disabled parents, children, and families. These overarching obstacles also impede disabled people from accessing appropriate and competent reproductive health information and services, in addition to family planning options such as adoption or fostering. These obstacles are heavily tied to ableism about who has the right to parent and express self-determination over decisions about their body and the life they envision for themself. This right is inherent because it is a part of the human experience-and disabled people deserve to take part in any aspect of humanity that is fulfilling to who they are in their personhood.

Sexual violence

The statistics are clear: Women and girls with disabilities face disproportionately higher rates of sexual harassment and assault compared with the general population. Indeed, people with disabilities are more than three times⁶² as likely as people without disabilities to experience rape or sexual assault, and women with disabilities are 40 percent⁶³ more likely to experience intimate partner violence than nondisabled women.

Research demonstrates that underlying power dynamics can contribute to a heightened risk of sexual violence against people with disabilities. For example, researchers⁶⁴ have found that people with disabilities form and rely on strong support systems in their daily lives-but the very people who make up those support systems, from family members to acquaintances to service providers, are also more likely to be the perpetrators of sexual abuse. Moreover, this abuse often goes unreported to law enforcement, creating a vicious cycle of unaccountability and violence that is often difficult to break for a variety of reasons, including a lack of trauma-informed reporting or resources to report.⁶⁵

Conclusion

While the reproductive justice and disability justice movements share several fundamental goals surrounding enhanced bodily autonomy, self-determination, and community care, ableist assumptions contribute to a deep-seated distrust or cynicism among the disability community toward the reproductive rights movement. Instances of state-sanctioned eugenics campaigns only further cement such distrust. Health care providers and other authority figures must work to address the ableism in their fields and rebuild trust within the disability community in order to ensure that people with disabilities have access to the reproductive health care they need.

Focusing on the intersection of disability and reproductive justice has important policy implications. Understanding the specific barriers that prevent disabled women, particularly disabled women of color, from accessing reproductive freedoms is a prerequisite to policymaking. More research is necessary, and CAP's Disability Justice Initiative will further explore the barriers outlined in this report and their policy implications in future publications.

Acknowledgments

The authors would like to thank Kyle Ross for fact- and data-checking assistance; Nicole Ndumele, Khalilah Harris, Akua Amaning, and Emily Gee for their reviews; and CAP's Editorial and Art teams for their guidance.

The positions of American Progress, and our policy experts, are independent, and the findings and conclusions presented are those of American Progress alone. A full list of supporters is available here. American Progress would like to acknowledge the many generous supporters who make our work possible.

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Reproductive Justice for Disabled Women: Ending Systemic Discrimination

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Reproductive Justice for Disabled Women: Ending Systemic Discrimination Introduction and summary Authors' note: The disability community is rapidly evolving to use identity-first language in place of person-first language. This is because it views disability as being a core component of identity, much like race and gender.

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Reproductive Health Care Accessibility Act

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Reproductive Health Care Accessibility Act

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Example of policy initiative focused on ableism in reproductive care