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Why the Disability Rights Movement Needs to Find Its Way Back to the Grassroots — Before the Next Fight is Lost
By Bruce Darling
In 2017, Disabled people stopped a Republican Congress from gutting Medicaid. We did it from the floors of Senate offices, in wheelchairs, in zip ties, chanting words that needed no translation: “Our homes, not nursing homes.” “Rather go to jail than die without Medicaid.” The bill died. Nobody who watched footage of that fight needed a policy brief to understand what was at stake.
In 2025, Congress passed the largest Medicaid cuts in American history. Nearly a trillion dollars. No Democrats voted for it, and disability organizations issued strong, well-researched statements opposing it — statements full of words like “work requirements,” “redeterminations,” “eligibility checks,” and “provider taxes.” The bill passed anyway.
I don’t think that’s a coincidence, and I don’t think it’s only about tactics. I think it’s a symptom of something the disability rights movement needs to name honestly – Our national leadership has drifted from the grassroots that built this movement, and in the process, we have lost the language, the framing, and the organizing muscle that once made us formidable.
This isn’t a new story. It’s the same story that has played out inside the Democratic Party over the last two decades — a professional, credentialed, donor-dependent leadership class gradually losing its ability to hear, represent, and mobilize the people it exists to serve. I believe the disability rights movement is now living through its own version of that dynamic, and I want to walk through the evidence, because I think it matters enormously for what comes next – The fight over the June 2026 OLC opinion, the future of Olmstead enforcement, and the survival of the Latonya Reeves Freedom Act and everything built alongside it.
This piece is long because the pattern is real and it shows up in more places than one example could prove. I’ve organized it in four parts: what the pattern looks like across several current fights inside our own movement; what happened when we changed how we talked about Medicaid between 2017 and 2025; what the scholarly literature on nonprofit and NGO drift tells us about why this happens; and what I think we need to do about it, starting now.
Part I: A Pattern Inside Our Own House
The disability rights movement was built on a small number of hard-won, freedom-centered principles. The right to live in the community, not an institution. The right to make our own decisions about our own bodies and our own lives. The right to be free from discrimination based on diagnosis rather than actual capacity or actual risk. “Nothing about us without us” wasn’t a slogan — it was a description of how the movement was supposed to make decisions.
Over the last several years, I’ve watched national disability organizations — organizations I respect, organizations full of good and committed people — quietly set those principles aside in at least four places, each time because holding the principle consistently would have put us in tension with the broader progressive coalition our leadership is now embedded in. I want to walk through all four, because the pattern only becomes visible when you see it more than once.
1. Assisted Living and the Blurring of “Institution”
For decades, this movement drew a bright line between institutional placement and home and community-based services (HCBS). Assisted living facilities sat on the institutional side of that line in everything but name — what many of us have called, informally, “institutions on training wheels” or “nursing facilities on training wheels.” The whole point of HCBS was that it was supposed to mean something different from congregate, facility-based care.
The HCBS Access Act — a bill I have supported and have advocated for — nonetheless its current version treats assisted living as a legitimate HCBS setting. The mainstream coalition behind it (ASAN, The Arc, the Center for Public Representation, the National Health Law Program, and others) frames the bill entirely around ending Medicaid’s institutional bias and the well-documented, catastrophic COVID death toll in congregate settings. That framing is correct as far as it goes. But it doesn’t engage the obvious tension. Including assisted living as HCBS blurs the exact distinction the movement spent decades establishing.
And there is a detail here that should trouble anyone who cares about this movement’s independence: the senior housing industry — Argentum, the American Seniors Housing Association — is actively lobbying in favor of the HCBS Access Act, because the bill would expand assisted living’s access to HCBS funding. Argentum has called assisted living “a proven part of the HCBS continuum.” That is an industry with a direct financial stake in blurring precisely the line this movement was founded to defend, sitting inside the same coalition as the organizations that are supposed to be defending it.
2. Prenatal Screening and the Critique We Stopped Making
There is a serious, decades-old, self-identified pro-choice body of disability studies scholarship — built by people like Adrienne Asch and Marsha Saxton — that draws a sharp distinction between abortion generally and disability-selective abortion specifically. Asch called it the “any/particular” critique: it is not “any” pregnancy being ended, it is “this particular” pregnancy being ended because of the disability. Asch herself sat on the board of NARAL. This was never a fringe, anti-abortion position smuggled in from outside the movement. It came from inside disability studies, from people who were unambiguously pro-choice, and it asked a question the rest of the reproductive rights movement was uncomfortable with: “What does it mean when a society builds increasingly sophisticated tools to screen a category of people out of existence before birth?”
DREDF’s public advocacy on abortion is substantial and serious — but it engages only the access side of the issue, barriers Disabled people face in obtaining abortion care themselves. It does not engage the selection side at all. That absence becomes even more striking when you look at the organizations founded specifically to represent the population most directly implicated — the National Down Syndrome Congress and the National Down Syndrome Society. NDSC’s current position is that selective abortion for Down syndrome “borders on eugenics,” but its actual policy is procedural: oppose state bans, support better information for parents. NDSS goes further, listing termination as one of three equally legitimate options alongside adoption and “advanced awareness,” stating plainly that the choice belongs to the parents. Neither organization issued a public statement when Roe was overturned, despite weeks of advance notice from the leaked draft opinion.
“Believing in bodily autonomy means you have to support the idea that other people — your friends, your peers, your siblings — may choose to abort a pregnancy because their child could be like you. But that’s why it’s a conversation we have to have, because if we don’t, decisions about us and our futures get made by others, without us.”
— Rebecca Cokley, Disabled advocate, writing as an individual
That quote is the sharpest, most direct restatement of Asch’s critique I could find anywhere in current circulation — and it comes from an individual writing a personal essay, not from any institution’s official position. As far as I can tell, the critique now survives almost entirely in academic literature and in individual advocates’ personal writing. It has essentially disappeared from institutional advocacy, cross-disability or condition-specific, because taking it seriously in public would put disability organizations in uncomfortable tension with the broader pro-choice coalition they depend on.
3. Due Process and the Gun Rights of People with Psychiatric Histories
This movement’s founding legal principle — established in cases like Wyatt v. Stickney and O’Connor v. Donaldson, cases the Bazelon Center for Mental Health Law itself litigated — is that you cannot strip someone of fundamental rights based on psychiatric diagnosis alone. You need an individualized, factual basis. Due process, not status-based exclusion.
That principle applies just as much to Second Amendment rights as it does to civil commitment, and at moments the movement has held the line consistently. In 2017, the ACLU fought a federal rule that would have added Social Security recipients with representative payees to the gun background-check database, explicitly on due-process grounds, even though the ACLU is not typically associated with defending gun rights. In 2019, a coalition of 110 organizations, including Bazelon, publicly affirmed that mental illness does not predict gun violence and that people with psychiatric disabilities must not be scapegoated for mass shootings.
But there is a live test happening right now, and the movement has gone quiet on it. In 2025, the Department of Justice proposed a rule to restore firearms rights to people previously barred, including those “adjudicated as mental defectives,” through an individualized relief process — an application of the movement’s own founding due-process logic. The response from the public-health-aligned gun violence prevention research community was cautious at best. And Bazelon’s own public advocacy calendar, which is extremely active right now — fighting the same administration over the OLC memo, ADA compliance deadlines, veteran guardianship overreach, Medicaid cuts — has nothing to say about this rule at all, in either direction.
This is not an organization that has gone quiet out of caution or exhaustion. It is an organization fighting hard on nearly every other front against the same administration, right now, and simply not applying its own founding principle to the one place where doing so consistently would mean agreeing with that administration about something.
What ties these together
These three cases share a specific shape, and it is worth naming precisely, because the shape is what makes this more than a list of complaints:
A Fourth Case, Not Yet Confirmed: Assisted Suicide
There is one more place I looked for this pattern, and I want to report honestly that I did not find it — not yet, at least not in the United States. But I think it belongs in this piece anyway, as something to watch closely, because of what I found just across the border.
Opposition to legalized assisted suicide is, historically, the single most unified position this movement has ever held. DREDF’s current roster of national organizations opposing legalization — AAPD, ADAPT, APRIL, ASAN, AWN, DREDF, NCD, NCIL, TASH, The Arc, United Spinal, World Institute on Disability, and Not Dead Yet — is essentially unchanged from lists going back nearly two decades. The Arc’s position statement remains unambiguous: physician-assisted suicide “must be prohibited for people with intellectual disabilities due to the inherent risk of undue influence.” As of this writing, no organization on that list has reversed position, and Not Dead Yet, working with DREDF and others, is actively litigating against new state laws in Colorado, Delaware, Illinois, and New York right now.
This is also, notably, a position this movement has held even though it puts many of us at odds with our own political home. Not Dead Yet says this about itself, plainly. Most of its members are progressive and left-of-center, and the organization has said openly that it is “dismayed that many friends on the left, and organizations like the ACLU, frame death-dealing practices against people with disabilities as simple personal ‘choice’” and ignore the role of social devaluation and discrimination in that supposed choice. In July 2026, a genuinely bipartisan group of lawmakers — Senators Lankford and Kaine, Representatives Murphy and Correa — pressed HHS and CMS on coercion safeguards, at disability advocates’ urging. That is a real, current example of this movement holding a hard line specifically against pressure from its own coalition, not just from the opposition. If I am looking across this whole piece for the case that shows what it looks like when this movement refuses to trade a founding principle for coalition comfort, this is it.
So why include it here at all? Because of two things I can’t ignore. First, the organization applying the pressure to reframe this as pure personal autonomy is not some outside actor — it is the ACLU, named specifically, an organization this movement partners with constantly on nearly everything else. That is exactly the shape of pressure that preceded drift in the other cases in this piece: not a hostile outside force, but an ally whose own default framing runs the other way. Second, and more concretely, in December 2025, Disability Alliance BC — a serious, cross-disability provincial organization operating since 1977 — formally reversed its prior call to repeal Track 2 of Canada’s MAiD law, moving from outright opposition to a “stronger safeguards” position, using language about “centering Disabled voices” and “true choice” that will sound familiar to anyone who has watched this kind of shift happen elsewhere in this piece. Canada is not the United States, and DABC is not any American organization on DREDF’s list. But it is a real, documented example of exactly this movement’s core position on exactly this issue giving way under exactly this kind of sustained coalition pressure, in a country with a legal and political culture closely related to our own.
New York’s own Medical Aid in Dying Act took effect on August 5, 2026, and is already being challenged in federal court on disability-discrimination grounds. This is not a hypothetical fight for CDR and RCIL. I don’t think the American movement has drifted on this issue yet. I think it is the clearest test case we have of whether the discipline this movement has shown here can hold — and I would rather name that risk now, while the position is still solid, than wait until it isn’t.
Part II: 2017 and 2025 — What Changed When We Changed How We Talked
If the pattern above is about which positions leadership is willing to hold, this part is about something more immediate – what happens to our capacity to organize when the language we use shifts from freedom to systems, and from rights to funding mechanics. I think the clearest evidence for this sits in front of all of us, in the difference between how this movement fought to save Medicaid in 2017 and how it fought to save Medicaid in 2025.
2017: We Spoke the Language of Freedom
When Senate Republicans released their 2017 health care bill, ADAPT did not respond with a policy memo. As the lead national organizer in that effort, what became known as the Summer of ADAPT began on June 22, 2017. It was deliberately timed to the anniversary of the Olmstead decision and ran for thirty-six consecutive days of protest, coordinated across the country, from Arizona to Alaska, Maine to Miami. It was both exhausting and exhilarating. Activists occupied Senator Cory Gardner’s Denver office for fifty-seven hours, lying on the floor in what they called a die-in, live-streaming the whole thing. “Our Homes, Not Nursing Homes” hung from the wall. In Columbus, Ohio, the protest targeting Senator Rob Portman met one of the most violent law enforcement responses of that summer. Police dumped a Disabled woman out of her wheelchair, removed Disabled people from the building, picking us up and hurling us onto the sidewalk. They transported protesters without their wheelchairs to jail lying on the floors of cargo vans. In Washington, more than eighty Disabled people were arrested outside Mitch McConnell’s office, some of us carried out individually, others requiring four or five officers each because we refused to be moved voluntarily. The chant outside his door was simple: “No cuts to Medicaid! Save our liberty!” Weeks later, during a Senate Finance Committee hearing on the Graham-Cassidy bill, ADAPT activists again disrupted the proceedings until Capitol Police removed us.
Every piece of language in that fight pointed at the same thing – freedom. Not funding formulas. Not eligibility mechanics. Freedom — the freedom to live in your own home instead of a nursing facility, the freedom that this movement has organized around since its founding. “Rather go to jail than die without Medicaid” isn’t a sentence that requires a policy background to understand. It requires nothing but attention.
The tactics and the framing were the same thing, not two separate choices. You cannot stage a die-in about a provider tax cap. You stage a die-in about dying. The freedom frame is what made the direct action legible — legible to the press, legible to the public, and just as important, legible to Disabled people themselves, giving ordinary people a reason to physically show up, not just a policy position to agree with from a distance. This was not one national event that generated a single news cycle. It was thirty-six days, in dozens of places, every single day — the kind of sustained, relentless presence that a systems-and-funding message has never been able to sustain in this movement, because nobody stays in the streets for over a month for a provider tax formula.
The bill failed. In These Times ran the story under the headline “How ADAPT Activists Blocked the GOP Healthcare Bill” — not “how advocacy groups influenced the vote,” but blocked it, with our bodies, in the building.
2025: We Spoke the Language of the System
Congress cut nearly a trillion dollars from Medicaid — the largest cuts in the program’s history. The disability community’s public response was thorough, well-documented, and almost entirely written in a different register. “Work requirements.” “Biannual redeterminations.” “Eighty-hour monthly reporting.” “Provider tax restrictions.” This is accurate language. It is the language a policy shop uses when it is talking to another policy shop, or to Hill staff, or to a reporter who already understands the Medicaid financing structure. It is not language built to be chanted, and it is not language that gives an ordinary Disabled person — someone without a policy background — an obvious, visceral reason to get on a bus to Washington.
Disability Rights California’s CEO, Andy Imparato, with decades of experience in this field, called it “the most harmful bill for Disabled people” he had ever seen — and he was right. But the visible organizing activity described alongside that statement was calls with congressional staff, rallies, and storytelling campaigns. I could not find anything resembling the 2017 die-ins, the sixty-hour office occupations, or the mass, planned arrests. The most visible protest images from the 2025 fight that I found belong to SEIU, a labor union, not to a disability-led direct action group.
The bill passed. No Democrats voted for it, but that opposition wasn’t enough, and disability-led mobilization does not appear to have been the deciding factor the way it demonstrably was in 2017.
I want to be careful here, because I am not arguing that the 2025 fight was lost purely because of framing, or that the people who fought it did anything less than their best. The political terrain was genuinely different. But I don’t think framing is incidental either. Freedom language produces a different kind of organizing than systems language does, because it demands a different kind of participation. “Save our liberty” asks a Disabled person to show up as themselves, with their own life at stake. “Oppose the 80-hour work requirement” asks them to understand and relay a policy position. The first is available to everyone in this movement. The second is available mainly to the professionalized wing of it — the wing most disconnected, per Part III below, from the base.
We Said This Directly
In a 2025 organizing memo written with fellow ADAPT organizer Dawn Russell, we compared the 2017 and 2025 Medicaid fights, putting it plainly – “We need to fight for freedom… not just funding.” The reasoning we gave then is worth repeating in full, because it is sharper than how I put it above: “Medicaid funds some things Disabled people don’t want, such as institutionalization. Saving funding for nursing facilities does not motivate Disabled people to put our bodies on the line.” Funding language cannot distinguish between the dollars that let someone live in their own home and the dollars that could just as easily pay to lock them away — which means funding language, by its nature, can never generate the kind of personal urgency that freedom language does.
That same memo named the LGBTQ+ movement directly as a model for something else this movement has gotten backward: the difference between playing offense and playing defense. “Advocates in the LGBTQ+ Community are masters at this strategy,” we wrote. “When the Supreme Court ruled in support of same sex marriage, they immediately called for passage of the Equality Act in the press statements praising the court’s decision.” We have spent most of the last decade playing defense — responding to attacks, protecting the status quo — rather than using our wins to demand more, immediately, while we have the momentum and the attention. Sixteen Republicans supported the Latonya Reeves Freedom Act in the last Congress. None supported legislation expanding Medicaid to cover long-term services and supports. That is not a coincidence. It is what happens when one message asks people to defend a system and the other asks them to expand freedom.
The same memo also makes a point I think is easy to misread, so I want to state it precisely. “Solidarity does not mean uniformity” was never an argument against a disciplined message inside this movement. It was permission for Disabled organizers to stop mirroring our allies’ talking points — the labor movement’s framing, the health-access coalition’s framing — and instead speak in our own authentic register, as Disabled people, about what Medicaid actually means for us: freedom, not a jobs program or an insurance statistic. Different messengers, each telling their own true story about the same underlying demand, are harder for opposition to counter than one script recited by everyone. That is not the same thing as this movement lacking a clear, unified ask. We can hold “freedom, not funding” as our core demand while still giving every Disabled person permission to say it in their own words, from their own experience.
And that same 2025 memo is where I want to correct something in my own account. Elsewhere in this piece, I’ve described this movement’s leadership drifting from its founding principles under pressure to stay comfortable with progressive allies. But on Olmstead specifically, the record is starker than drift — it is documented refusal, and it happened almost immediately after our movement’s biggest recent win. After the Summer of ADAPT protests were widely credited with saving Obamacare in 2017, many of us believed the Disability Community had earned the right to be, in our own words, “emancipated from institutions” — that Democrats would acknowledge what we had done for the broader progressive coalition and finally back the Disability Integration Act. Instead, by direction of Democratic House Leadership, no Democrat in the House of Representatives was willing to reintroduce the Disability Integration Act in January 2019. It had to be introduced by a Republican, Congressman Jim Sensenbrenner. Staff for Minority Leader Jeffries later confirmed the same posture continued into the fight over the Latonya Reeves Freedom Act. Despite widespread support from rank-and-file Democrats, House caucus leadership would not back it.
I raise this here, and not just in the piece I’ve written specifically about voter mobilization, because it belongs in both places. It is evidence of the grassroots-leadership disconnect this piece is about, and it is the clearest, most direct answer to why the acknowledgment this movement needs has never come.
Part III: This Isn’t Unique to Disability Rights — and That Should Worry Us
None of what I’ve described above is a mystery, and it isn’t unique to this movement. There is a well-developed body of nonprofit and civil society scholarship that names this exact dynamic. The term of art is NGO-ization: “the donor-driven professionalization and bureaucratization of civil society, in which managerial accountability and project logics displace locally defined priorities and political mobilization.”
It is worth being precise, because the literature itself is careful here – NGO-ization is distinct from plain professionalization. Having skilled staff, lawyers, and policy experts is not the problem — it is often necessary. Professionalization “can strengthen voluntary transparency, and when members remain closely engaged, need not displace grassroots influence.” The problem is a specific combination: professionalization plus donor and funder dependency plus weak structures for the base to actually direct the organization, rather than simply be represented by it rhetorically.
The mechanism the literature describes reads like a diagnosis of what I’ve laid out above: “as [organizations] expand, they often feel pressure to avoid topics that might be seen to be controversial, since these could make donors uncomfortable,” and funding dependency “gradually transforms an organization’s mission, sometimes so much so that the initial drive for change is overshadowed by what’s ‘fundable.’” That is DREDF and the Down syndrome organizations going quiet on selective screening. That is Bazelon staying silent on gun rights due process while fighting on every adjacent front. That is a housing industry’s lobbying interest sitting comfortably inside a coalition that is supposed to be defending the line between institution and community.
That is a structural account of the exact gap I am describing — leadership whose actual professional incentives run through funder relationships, coalition partnerships, and Hill credibility, even when an organization’s mission statement still centers the people it was built to serve.
This is also, not coincidentally, the standard diagnosis of what has gone wrong inside the Democratic Party over the same period – a professional, consultant-class, donor-primary leadership that has grown steadily less able to hear or represent people who are not already inside its institutional and social apparatus. I am not the first person to draw that parallel, and I don’t think it’s a coincidence that the disability rights movement, which has built much of its modern advocacy infrastructure in close partnership with the Democratic Party and its donor and foundation ecosystem, would begin to show the same symptoms. We have, to a real extent, organized ourselves in that party’s image — including its institutional weaknesses.
The literature also offers something more useful than a diagnosis: a specific question to ask of any organization in this movement, including my own. Does the base have real structural power to direct the organization — votes, elected leadership, chapter governance with actual authority — or is “disability-led” primarily a hiring credential and a mission statement, with the actual decisions made by staff and boards whose real accountability runs to funders and coalition partners? Where the answer is the former, professionalization and grassroots responsiveness coexist. Where it is the latter, drift is close to inevitable, regardless of how sincerely the people involved believe in the mission.
Two Organizations, Two Different Answers to That Question
I don’t think this question is abstract, and I don’t think the answer is the same everywhere in this movement. It is worth looking at two real, concrete cases — one a cautionary example, one I think is closer to what we need.
NCIL was built, deliberately, with a strong membership infrastructure. For years it operated with a robust array of issue subcommittees — standing structures that gave members across the country a real channel to shape the organization’s positions from the ground up, not just receive them from national staff. NCIL eliminated that subcommittee structure, consolidating decision-making power at the leadership level. Whatever the operational reasons offered for that change at the time, the structural effect is exactly what the NGO-ization literature predicts: a formally membership-based organization lost one of the key mechanisms that made “membership-based” something more than a name on the letterhead.
CDR faced a version of this same choice in 2010, under real pressure, not a hypothetical one. Monroe County – under County Executive Maggie Brooks – pulled CDR’s CDPAP contract in direct retaliation for the organization’s advocacy against unwanted institutionalization and for accessible public transportation. That was not a subtle threat. The county was using CDR’s own service revenue – $15 million of it – as leverage to try to silence our advocacy. The board had to decide, seriously, whether CDR should step back from that advocacy role to protect the services the organization was providing, and the funding that came with them.
The question came to the membership at the annual membership meeting, and the membership rejected the proposal considered by the board. They were clear. CDR needed to stay true to its primary role as an advocacy organization, and to the principles that started it, even at real financial and personal cost. That is what it looks like when a membership structure isn’t decorative — when the people an organization is supposed to answer to actually have the power to drive staff and board judgment on the question that matters most, at the exact moment the pressure to trade principle for institutional survival is highest.
I raise this not to hold CDR up as beyond reproach — no organization is immune to the pressures described in this piece, mine included — but because it is a concrete, lived answer to the abstract governance question above. The difference between an organization that can do what CDR’s membership did in 2010 and one that can’t is not sincerity, and it isn’t a mission statement. It is whether the structural power to make that choice still sits with the people the organization exists to serve, or whether it has quietly moved to the people who manage the organization’s relationships with funders, coalition partners, and government contracts.
Part IV: What This Means for the Fight in Front of Us
I am writing this now, and not simply as an academic exercise, because I think this movement is heading into the most consequential fight it has faced since the ADA itself, and I do not think we are currently equipped to win it the way we won in 2017.
The June 2026 OLC opinion threatens the Olmstead integration mandate directly — the same legal foundation that underlies everything from HCBS funding formulas to the community-living rights this entire movement was built to secure. That is not an abstraction. We have the data now, in a way we didn’t before – people with disabilities in congregate and institutional settings died of COVID at nine times the rate of people in their own homes, with researchers directly attributing the gap to living in congregate settings and government deprioritization, not disability itself. We are not arguing from principle alone anymore. We have a body count. It is recent. It is documented, and it was preventable.
That is exactly the kind of stakes that produced “Our Homes, Not Nursing Homes” in 2017 and “Silence = Death” in the AIDS crisis before it. It is not the kind of stakes that gets mobilized by a fact sheet about administrative rule changes at the Department of Justice. If we fight the OLC opinion the way we fought the 2025 Medicaid cuts — with careful, accurate, well-researched statements about legal doctrine and enforcement mechanisms — I do not think we will move the people who need to be moved, and I do not think we will bring our own base into the fight the way this moment requires.
So here is what I think leadership in this movement — including me, including CDR and RCIL — needs to actually do, not as a slogan but as a set of concrete commitments:
1. Return to freedom language, deliberately, everywhere
Every piece of public communication about the OLC opinion should be built around the same plain, visceral stakes that built this movement: the freedom to live in your own home, the right not to be locked away, the documented cost in lives when that right is weakened. Save the legal and administrative detail for the material meant for Hill staff and attorneys. The public-facing message has to be built for a Disabled person deciding whether to get on a bus, not for a health policy reporter.
2. Rebuild the capacity for direct action, not just statements
The 2025 fight leaned almost entirely on the professionalized advocacy toolkit — letters, coalition sign-ons, Hill meetings. Those tools matter, but they are not sufficient on their own, and they were not what stopped the bill in 2017. This movement has a living memory of what sustained, Disabled-led, visible direct action looks like. We need to rebuild that capacity, deliberately, rather than assuming it will simply appear when it is needed.
3. Ask the governance question of our own organizations
Before this movement can credibly ask anyone else to change, its own leadership needs to ask honestly whether Disabled people actually direct our organizations, with real structural power, or whether “disabled-led” has become primarily a staffing credential. Where the base doesn’t have real power, we should build it, not just talk about it.
4. Name the internal critiques we’ve been avoiding, out loud
Whatever the right answers turn out to be on assisted living’s place in HCBS, on selective screening, on due process for gun rights, or on any other place where this movement has gone quiet to avoid friction with our allies — the answer is not silence. “Nothing about us without us” has to mean engaging honestly with disagreement inside our own community, not just with the outside world. A movement that cannot hold an honest internal argument is not in a strong position to win an external one.
5. Remember what we are actually defending
Olmstead is not a funding formula. It is the legal expression of the same freedom that ADAPT activists were arrested defending on Capitol Hill in 1990, and again in 2017. If we let the next fight over it get reduced to a conversation about administrative rule interpretation, we will have already lost the thing that made this movement powerful in the first place — not because our facts were wrong, but because we forgot how to make people feel what those facts mean.