Lois Curtis' Legacy Under Attack

Portrait photo of Lois Curtis standing behind a chain-link fence. She is looking off into the distance with her hands open and pressed against the fence.

July 13, 2026, the day before what would have been Lois Curtis’ 59^th birthday, Assistant Attorney General for the Civil Rights Division of the federal Department of Justice, Harmeet K. Dillon, dispatched one of the worst, but unsurprising, birthday gifts a disability advocate could receive. In a short and succinct Federal Register Notice, Dillon signaled the federal guidance developed after Lois’ historic victory for disabled people in the Olmstead case is no longer the position the Department of Justice will take when evaluating disability discrimination complaints under Section 504 of the Rehabilitation Act or Title II of the Americans with Disabilities Act.

Lois Curtis was born July 14, 1967. She would have been six years old when the Rehabilitation Act was passed; eight years old when the Education for All Handicapped Children (later the IDEA) was signed into law. Lois was 21 at the time of the 1988 Amendments to the Fair Housing Act (FHAA) that addressed disability discrimination in housing. She was 23 years old when the Americans with Disabilities Act (ADA) was passed. With the legal case filed on her behalf wending its way through the court system, Lois would be almost 32 by the time the Olmstead decision was handed down. In the years following the decision, Lois would continue to cycle in and out of the community; not until she was 42 would she score another legal victory and establish the network of services and supports that allowed her to live her remaining 13 years free.

The June 18, 2026, Department of Justice memorandum opinion referenced by Dillon’s Federal Register notice is bad. Bad mostly for the disabled people who have found safe harbor under the Department’s past activities. It is dangerous to those same people because it points adroitly at some of the unresolved problems with the rights-based focus of the ADA that disability advocates have chosen to ignore because the people who have benefitted from the law are more afraid of losing what they have than they are concerned about those who have not benefitted from the law.

For years, there has been press from Black and brown disabled agitators to shift #BigDisCo’s advocacy paradigm from “rights-based” advocacy to a truly integrative, “justice-based” agenda. When the Lois Curtis Center’s co-founder, Reyma McCoy Hyten, addressed the National Council on Independent Living (NCIL) as their incoming Executive Director in 2021, she set out a vision for the organization that would have shifted this paradigm, essentially proposing that replacing the rights-based approach would build towards a shared liberation that would fortify a shared resistance when inevitable adversity appeared.

The 2021 NCIL conference had not so much as updated the incoming board of directors on its website before pushback began from advocates who had used rights-based advocacy to maximize the benefits of the disability rights movement for those who enjoyed the most privilege and status in the first instance. When Reyma left the organization in early 2022, efforts to course-correct toward an intersectional version of disability advocacy retreated back to the same, tired demands for more money for federally-funded service providers, the termination of a “Diversity, Equity & Inclusion” board position, and an emphasis on the funding of the Home and Community Based Services white disabled people access with relative ease while their Black and brown disabled neighbors are left behind to “figure it out” in the community or seek out services in institutions.

The ADA specifically and intentionally left some types of disabled people behind. This vulnerability was exposed as the rationale for filing the Texas v. Becerra, now Texas v. Kennedy case, which springboarded from an attack on people with gender dysphoria who the ADA specifically left behind to a wholesale attack on Section 504 of the Rehabilitation Act. Even after we pointed out the suspicious timing of any advocacy on this issue, and the disability advocacy community’s problematic “fallback” position that if the language trying to offer protections to people with this particular disability were jettisoned the case would become moot, not a thing has been done to try to correct the exclusion of this group of disabled people in the ADA. The disability advocacy community HAS dedicated substantial resources to convince state attorney generals to withdraw from the lawsuit, now that the Administration has not just removed protections, but doubled down with prohibitions against Medicaid-paid medically necessary care for people seeking gender-affirming health care. The case only needs one attorney general to move forward. It will now do so without any “persuasive authority” from the Department of Justice, and armed with the arguments outlined in the June 18, 2026, memorandum.

The disability community has similarly elected to stand on the sidelines in many of the court cases the Department of Justice uses in their memorandum for withdrawal of their support for community integration. Advocacy against the rollback of Voting Rights Act protections for black communities in Shelby County v. Holder was never incorporated into disability voting initiatives. Students for Fair Admissions elicited little more than an eyebrow raising by #BigDisCo when status-based school admissions were determined to be illegal. The Loper Bright reversal on the authority of administrative agencies to use regulatory processes to create clarity in the laws they are designated to enforce spilled very little ink. And of course, the Texas v. Becerra/Kennedy case, filed in the last days of the Biden Administration, did not warrant the concern of even a flag raising, at least until a Republican Administration had been installed in the White House.

This memorandum, working in concert with July 24, 2025’s Executive Order 14321, and the well-established fascination Secretary Robert Kennedy and many of the staff who have returned to the Administration (Mary Lazare, Julie Hocker, et al) have with wellness camps, “homelike” farms and other group care facilities, lays more foundation for what is to come. Advocates can argue that this is not a foregone conclusion, but the economic reality of the current Administration’s fiscal policies is itself a real and present danger for continued funding for the services disability rights efforts have secured and associated funding streams disability service and advocacy agencies have so richly enjoyed.

The Lois Curtis Center was formed in anticipation of these eventualities. While national disability advocacy organizations scrambled to give the appearance of caring about members of the disability community who require gender-affirming care, have conveniently added “intersections” to their public-facing identity, or have surrounded themselves with one or two marginalized people to provide assurance of the commitment they have to all people, we quietly steeped ourselves in the reality that never went away for Black and brown disabled people. Commitments to dismantling systemic racial oppression made following the murder of George Floyd in 2020 have been quietly removed from organization websites.  Black and brown disabled people have never categorically benefited from disability rights. Navigating community-based services has always meant we have to first overcome the bias in white-dominated disability service spaces to gain entry, and if granted, nearly always accept the less robust services those spaces will make available to us.

Lois’s life was marked by the passage of arguably the four most important civil rights bills for disabled people. She was able to access legal services to help enforce those rights, twice. And still, the overwhelming majority of her years on this planet were spent in segregated, institutional settings. The enactment of civil rights legislation did not give her a free, appropriate public education, or vocational rehabilitation services, or services from a center for independent living, or accessible housing, or support in an “integrated setting.” Ultimately, she was forced to navigate all these systems on her own and build the structures needed to make community living a reality for herself.

So while it is disappointing to see the continued unfurling of the pathway back into institutions for people with mental health disabilities as the first to go, the ultimate impact will be felt hardest by the people who benefitted most in the first instance. #BigDisCo advocacy will become turbo-charged efforts to “carve out” the most palatable disabled community members while the rest of us will be implored to join their efforts, urged to action by Fannie Lou Hamer’s exhortation that “nobody’s free until everybody’s free.” We will be assured that no one will be left behind, which will be true so long as folks are the right kind of disabled, and a good cultural fit.  

And for those of us who are not these things – like Lois, we cannot be left behind in a system that never let us get ahead in the first place. We will continue to figure things out. Access and community integration will not be found in the text of civil rights laws, or in $100.00 gift cards, or a new page on a national organization’s website. The time for meaningless gestures is over. Lois’ legacy will live on in the networks and support we build ourselves.