Beyond Community Integration
Beyond Beautiful: Disability, Liberation, Love
Season 3, Episode 12 - Beyond Community Integration
🧭 Episode Summary
What happens when the right to live in community becomes a legal question?
In this episode, Mandi explores Texas v. Kennedy, Olmstead v. L.C., and the history of Willowbrook State School to unpack the fight for community integration.
She names Lois Curtis and Elaine Wilson, the two women at the center of Olmstead, and reflects on what Willowbrook teaches us about institutionalization, segregation, choice, and belonging.
Because needing support should never mean losing your right to belong.
“My need for support doesn’t erase my right to belong.”
⚠️ Content Notes
This episode discusses institutionalization, abuse and neglect, medical experimentation, and disability segregation.
💬 Key Themes
Community Integration
Disability History
Interdependence & Belonging
🚨Partnership
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📜 Full Transcript
Mandi: Welcome to Beyond Disability Liberation Love. I'm Mandi, your Queer Christian Disabled host.
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Mandi: I'm interrupting today's regularly scheduled interview episode because something really important has come up for the disability community that I must talk about. Before we begin, I want to offer a content note. Today's episode talks about institutionalization, disability segregation, abuse and neglect of disabled people, medical experimentation, and the history of Willowbrook State School. Some of the history I'm going to discuss is difficult. I'm going to talk about children who were institutionalized, people who experienced neglect and dehumanization, and what happens when disabled people are treated as problems to be managed instead of people with rights, autonomy, relationships, and full lives. If this is a difficult topic for you to listen to, please take care of yourself. You can pause this episode, come back another time, or skip it altogether. Your access to this conversation matters.
On September 23rd of this year, 2026, a federal judge entered a final judgment in a case called Texas v. Kennedy. If you're someone who follows disability rights closely, you've probably seen people talking about it. You've probably heard people saying that Section 504 is under attack. And you've probably seen people talking about the integration mandate and the word institutionalization. Maybe you've wondered, what does this actually mean? So that's what we're going to talk about today. But I don't want this episode to simply be a legal explainer. If we talk about Texas v. Kennedy only as a court case, we miss several important pieces. We miss the history, we miss the people, and we miss why the disability community fought so hard for the right to live in our communities in the first place. If we're going to have a conversation about the right to live in community, we need to remember what happens when society decides to that disabled people belong somewhere else.
So today we'll talk about the court case Texas v. Kennedy, and we'll talk about Section 504 and Olmstead v. L.C.. We're going to also talk about Willowbrook let's start with the case itself. Texas v. Kennedy, which was previously known as Texas v. Becerra, challenged regulations issued by the U.S. department of Health and Human Services, or HHS, in 2024 implementing Section 504 of the Rehabilitation Act. Section 504 is a really important piece of disability civil rights history. It was enacted in 1973 and prohibits discrimination on the basis of disability in programs and activities receiving federal financial assistance. I strongly encourage you to see the film Crip Camp to learn more about the disability advocates and the work that went into ensuring that Section 504 was implemented. The 2024 HHS regulations updated and clarified the protections provided by Section 504, including provisions concerning disability discrimination and community integration.
Community integration matters. When I say community integration, I'm talking about something very basic, the idea that disabled people should be able to live their lives in their communities, not automatically separated from everyone else because we're disabled, not automatically placed in an institution because we have access needs and not told that the only way to receive care is to leave our homes, our families, our neighborhoods, our jobs, our schools, our churches and our relationships. Community integration says we belong here. And that's where Texas v. Kennedy becomes much bigger than a regulation. The lawsuit originally involved 17 states and challenged several aspects of the 2024 Section 504 regulations. The case was later narrowed and several states withdrew. By the final stages, the federal government and the remaining states were aligned in asking the court to remove the community integration provisions from the regulations. On September 23, a judge granted this request. The court vacated the community integration portions of the 2024 section 504 regulations and closed the case. It's important to note that while only several states were part of this case, the ruling applies nationally.
Now, I want to pause here because this is where social media can get confusing. Section 504 was not repealed, the Americans with Disabilities act or the ADA was also not repealed, and Olmstead v. L.C. was not overturned. Those laws and that Supreme Court precedent remain in place. What has changed is that specific federal regulatory language reinforcing community integration under HHS's Section 504 regulations was removed. This distinction matters, but so does the context surrounding it. Earlier this year, the Department of Justice's Office of Legal Counsel issued an opinion taking the position that neither Section 504 nor Title 2 of the ADA imposes an integration mandate on states. In the way disability advocates and previous federal enforcement policies have understood it, this was a significant shift in the federal government's legal position. The Department of Justice or DOJ's June 18 opinion specifically argued that Section 504 and Title II do not require states to provide services in the most integrated setting appropriate. And in July, DOJ also withdrew its previous guidance concerning enforcement of Olmstead, while emphasizing that the Supreme Court decision itself had not been overturned. In August, DOJ and the remaining states filed a joint motion asking the court to enter final judgment and remove the community integration provisions. And in September, the court did exactly that. So when disability advocates are talking about this case, part of what they're talking about isn't just the text that was removed. They're talking about what it means when federal policy and enforcement priorities change around community living, because rights on paper matter. But enforcement matters, too, and implementation matters, and as we know, access matters.
So let's back up for a minute because you might be hearing the phrase integration mandate and thinking, Mandi, what the heck does that actually mean? Fair question. The concept became especially important because of a 1999 Supreme Court case called Olmstead v. L.C.. In Olmstead, the Supreme Court considered the cases of two women with mental disabilities who were institutionalized even though their treatment professionals determined they could live in community settings. And before we talk about what Olmstead means as a legal precedent, I want to name the women at the center of this case. Their names were Lois Curtis and Elaine Wilson. Sometimes when we talk about disability rights history, we turn people into court cases. We stay Olmstead and section 504 and ADA. And it's easy to forget that behind those names were actual disabled people whose lives were being profoundly affected.
Lois Curtis was a woman with developmental and cognitive disabilities who was also diagnosed with schizophrenia. She had spent much of her life moving in and out of institutions. In 1992, she was voluntarily admitted to Georgia Regional Hospital in Atlanta. Eventually, her treatment professionals determined that she could be appropriately supported in a community based program, but she remained institutionalized. So in 1995, Lois filed a lawsuit against the state of Georgia, arguing that keeping her in an institution when she could appropriately live in the community violated the Americans with Disabilities Act.
And then there was Elaine Wilson. Elaine also had developmental disabilities and a mental health diagnosis. She had spent significant portions of her life in state institutions. She was admitted to Georgia regional Hospital in 1995. And like Lois, her treatment professionals eventually determined that she could be supported in the community. But she remained there. Elaine joined Lois's lawsuit. Together, these two women challenged something that had been treated as normal for generations, the idea that disabled people could be placed in institutions simply because the systems around Them weren't prepared or willing to support them in the community. Their attorney was Sue Jamison, a lawyer with the Atlanta Legal Aid Society. She had been advocating for people confined in Georgia institutions, and she represented Lois and Elaine. And in what would ultimately become one of the most important disability rights cases in American history, in 1999, the Supreme Court ruled in Olmstead v. L.C., and the court held that under Title 2 of the ADA, unjustified institutional isolation of people with disabilities can constitute discrimination. The court's ruling wasn't that every disabled person must live in the community or that residential services are inherently wrong. The ruling was about people who could appropriately receive services in the community, wanted that community placement, and could be reasonably accommodated. In other words, Lois and Elaine weren't asking for some extraordinary privilege. They were asking to live in their communities. They were asking for the opportunity to receive support without being segregated from everyone else. They were asking for something that many nondisabled people never have to ask permission for. Where am I going to live? Who am I going to live near? What does my life look like outside of an institution?
And I think it's really important that we remember their names. Lois Curtis, Elaine Wilson. Because Olmstead isn't just a legal doctrine. It came from two disabled women saying, in essence, there has to be another way to live. When the court held that unjustified institutional isolation of people with disabilities can constitute discrimination under Title ii of the ADA, this became known as the ADA's integration mandate. And this was a really significant shift. We know that disability rights isn't just about can I enter the building? It's also about knowing where you can live, knowing where you can receive care, knowing if you can work and generally how you can belong. If you tell me you're welcome in society, but only if you can live somewhere separate from society, that is not really inclusion. And this is why community integration matters so much.
This is where I want to talk about Willowbrook. If you're listening to this and thinking, okay, but why are disabled people so concerned about institutionalization? I want you to understand that this concern did not come out of nowhere. There is history behind it. And one of the clearest examples is right here in New York, Willowbrook State School. Willowbrook opened on Staten island in 1947 as a state institution for children with developmental disabilities. By 1965, its population had grown to approximately 6,000 children, making it the largest state institution in the country for people with developmental disabilities. It had originally been designed for far fewer residents. Willowbrook became synonymous with overcrowding poor sanitation, neglect and abuse.
But I want to be careful about how I tell this story. Sometimes when we tell the story of Willowbrook, we turn it into a story about a bad institution, as though Willowbrook was an aberration, as though the problem was simply that this particular institution was poorly managed. But I think the deeper lesson is about the system itself. Willowbrook existed because society had decided that. That disabled children could be separated from their families and communities, that institutionalization was an acceptable answer to disability, that children who had access, needs could be sent away, that their lives could happen somewhere else. And once you've separated people from the broader community, it's much easier for the broader community to stop seeing them. That is part of what makes institutionalization so dangerous.
Willowbrook also became the site of deeply controversial medical research. Beginning in the 1950s, researchers studied hepatitis among children living at Willowbrook. Some children were deliberately exposed to hepatitis as part of research into the disease and possible prevention. Historical accounts describe serious concerns about the consent process and the vulnerability of children living in an institution with very limited alternatives for their families. And I want to sit with that for a second. These weren't simply children who happened to be sick. These were children living in an institution. Children whose disability and institutional status put them in a position of profound powerlessness. And that is part of the lesson. When you create a population that is isolated, segregated, and dependent on an institution for nearly every aspect of life, the power imbalance becomes enormous. Who makes decisions? Who gets listened to? Who gets believed? Who gets to say no? Who gets to leave? Who gets to complain? Who is watching? Who is accountable? These aren't abstract questions. They are disability justice questions.
In 1972, investigative journalist Geraldo Rivera exposed the conditions inside Willowbrook. But I also want to correct something that sometimes gets lost. In the simplified version of this story, Rivera did not create the movement. Families had already been advocating. Parents had already been fighting. People connected to Willowbrook had already been demanding change. The 1972 reporting helped bring what was happening to national attention. But families and advocates had been pushing for better conditions and rights. New York's own historical account recognizes the advocacy of parents and former residents alongside the journalism that exposed the conditions. And this matters because I don't want to tell a story that where a nondisabled journalist comes in and saves disabled people, that is not the story. Disabled people and their families were fighting. Self-advocates were fighting, parents were fighting. And eventually the legal system responded.
In 1972, a class action lawsuit was filed over the conditions at Willowbrook. In 1975, the Willowbrook consent decree required New York to make significant changes, including providing opportunities for community living. And in 1987, the year I was born, Willowbrook officially closed. The closure wasn't the end of the story. It became part of the beginning of the deinstitutionalization movement in New York and nationally. And that's why Willowbrook matters today.
Here's what I really want us to understand. When I say institutionalization, I don't just mean a giant building with thousands of disabled people inside. Institutionalization is a system. It's a way of thinking. It's the belief that disabled people are better off somewhere separate, somewhere controlled, somewhere managed, somewhere where professionals can make the decisions. And sometimes that system can exist even when the building is smaller because you can have a small institution, you can have a group home, you can have a nursing facility, you can have a hospital or a residential program. The question isn't simply, is this a big scary institution? The questions are, do people have choice? Do they have control over their daily lives? Can they leave? Can they choose who supports them? Can they have privacy? Can they have relationships? Can they participate in their communities? Can they make decisions about their own bodies? Are they treated as adults? Are they treated as children? Are they listened to? Institutionalization is fundamentally about power and autonomy.
And this is where I want to be nuanced. I am not saying that every residential setting is inherently abusive. I am not saying that every disabled person who lives in a congregate setting is unhappy. And I'm not saying that people don't sometimes need residential supports. People have different access needs. Some people may choose settings that involve shared living or residential services. The disability justice question is not can disabled people ever live together? The question is, do disabled people have meaningful choices about where and how they live? That is a very different question.
Here's where I think Texas v. Kennedy becomes real. Imagine you're a disabled person who has high access needs. Maybe you need help getting dressed or help with medication. Maybe you need personal care or assistance preparing food. Maybe you need transportation or communication support. Maybe you need behavioral support. Maybe you need 24-hour assistance. Needing that support does not mean you need to surrender your community. It doesn't mean you need to surrender your relationships, your sexuality or your privacy. It doesn't mean you need to surrender your faith community or surrender your home or your humanity. Support should make living possible. It shouldn't become the justification for controlling someone's life. And that distinction is at the heart of disability liberation.
I want to spend a little time on this phrase because it can sound Incredibly bureaucratic, most integrated, setting appropriate. It sounds like something written by lawyers for lawyers, but imagine translating that into ordinary language. It means, don't separate me from everyone else simply because I'm disabled. It means if I can live in my community with appropriate supports, don't automatically put me somewhere segregated. It means my need for support doesn't erase my right to belong. And I think that last sentence is the one I want you to remember. My need for support doesn't erase my right to belong.
Because sometimes disability rights conversations get stuck in this false idea that independence is the ultimate goal. And I'm not interested in that. I don't think independence is the measure of human worth. I believe in interdependence. I believe none of us live completely independently. We all rely on people. The difference is that disabled people's dependence is often used as an argument for control. And that's where we need to be careful. I don't need to prove that I can do everything myself to deserve freedom. I deserve freedom because I'm a human being. When I think about Willowbrook along Texas v. Kennedy, I'm not saying this court case means Willowbrook is coming back. That's not what happened, and that's not legally accurate. What I am saying is that Willowbrook gives us historical context for understanding why the right to community living matters so deeply to disabled people. Willowbrook shows us what can happen when disabled people are segregated from society, when they have little power, when families have few alternatives, and when the people inside the institution become invisible to the people outside it. New York now officially describes Willowbrook as a catalyst for reform and a symbol of the importance of community inclusion and living with dignity. And I think there's a reason we continue to tell the story. Because forgetting is dangerous. If we forget why deinstitutionalization happened, we can start treating institutionalization as a neutral solution. If we Forget why section 504 matters, we can start seeing it as bureaucratic paperwork. If we forget Olmstead, we can start treating community living as a luxury instead of a civil rights issue. And if we forget the voices of people who lived through institutions, we can start making decisions about disabled people without disabled people. This is where that disability rights phrase comes in. Nothing about us without us. I don't want disability policy created without disabled people. I don't want decisions about community living made without disabled people. I don't want conversations about institutionalization that don't include people who have lived in institutions. And I don't want conversations about home- and community-based services that only include policymakers, providers and families while leaving disabled people out. We are not just the recipients of policy. We are people living the consequences of policy. And there is something especially important about listening to people with higher access needs. Because historically, the people most likely to be segregated are often the people society considers too disabled for inclusion. The people who need more support, the people who communicate differently, the people who have intellectual or developmental disabilities, the people with complex medical needs, the people with significant mental health disabilities. If our version of disability inclusion only works for disabled people who can perform independence in ways society understands, then it isn't liberation. It's conditional inclusion. It's ableism embedded in our system.
So where does that leave us? Well, first, I think it leaves us with a responsibility to pay attention because disability rights are not self-sustaining. The rights that exist today exist because people fought for them. Section 504 exists because disabled people fought for it. The 504 regulations exist because disabled people fought for them. The 1977 section 504 regulations were preceded by disability activism, including the famous 504 sit ins. The disability rights movement has always involved disabled people, saying, we are here, we have rights, we belong, listen to us. And I think Texas v. Kennedy is another reminder that we cannot assume the work is finished. Second, I think we need to learn our history, learn about Willowbrook, learn about the 504 sit ins, learn about the independent living movement, learn about Olmstead, about disability activists who fought before many of us were born. History gives us context, it gives us language, and language gives us power.
Third, we need to keep asking what real community inclusion looks like. Putting someone physically in a community isn't enough. If you move someone out of an institution and put them in a house where they have no meaningful choices, that is not liberation. If you give someone a home but don't provide the support necessary to keep it, that is not meaningful access. If you technically allow someone to live in the community, but make the services they need impossible to obtain, that is not inclusion. Community living requires support. It requires accessible housing, accessible transportation, accessible health care, accessible personal care, home- and community-based services, communication access, employment opportunities, relationships, and the ability to make choices about your own life.
So here's the question I want to leave you with. What would it look like if we stopped asking whether disabled people are capable enough to belong in the community and started asking what support the community needs to provide so disabled people can belong? That's a different question. Instead of can this person live independently? We ask what supports would allow this person to live the life they want? Instead of can this person work? We ask what accommodations would allow this person to participate? Instead of can this person communicate? We ask, are we providing the communication supports necessary for this person to be heard? Instead of can this person live outside an institution? We ask, what would it take to make community living possible? That is the shift from asking disabled people to prove they deserve inclusion to asking society what it needs to change to make inclusion real.
So what do I want you to take away from today's episode? Well, Texas v. Kennedy is a court case. It's about regulations, it's about section 504, and it's about legal interpretation. And while those things matter, underneath it all is a much more human question. Who gets to live in community? Who gets to choose where they live? Who gets to decide what support looks like? Who gets to have privacy, relationships, a home? Who gets to participate? And who gets to belong?
Because Willowbrook reminds us what happens when disabled people are separated from the rest of society and then forgotten. And the disability rights movement that grew from that history reminds us that disabled people have never simply accepted that separation. We have fought it. Our families have fought it. Self-advocates have fought it. Disabled activists have fought, and we continue to fight for something that should never have been controversial in the first place. The right to live in our communities. Not because we're independent enough, productive enough, or easy enough to accommodate. Not because we've somehow proven our worth, but because we belong.
And I think that's what disability liberation asks us to imagine. Not a world where disabled people have to become less disabled to participate. Not a world where we have to prove that we can survive without help. We imagine a world where needing help isn't a reason to lose freedom. A world where support and autonomy can exist together. A world where interdependence is valued and a world where community isn't something we're allowed to enter only after we've met some invisible standard of acceptability. A world where our homes are our homes, our communities, our communities, and our lives are our lives. And our disability does not disqualify us from any of it.
So today I'm remembering Willowbrook. I'm remembering the people who lived there, the families who fought, the self-advocates who spoke up, the activists who demanded change. And I'm remembering that rights are not gifts. They are things people fought for. And sometimes protecting those rights means remembering exactly why we needed them in the first place. Remember, disability liberation and love are always beyond beautiful.
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