Accountability for Mass Institutionalization of Persons with Disabilities

"Study the past if you would define the future." - Confucius

Past is prologue. This holds true for the nexus between disability history and present-day disability rights. In many instances, differing understandings of disability history have informed divergent approaches to defining the rights of persons with disabilities in the present.

Take, for instance, City of Cleburne v. Cleburne Living Center, where the U.S. Supreme Court declined to recognize disability as a suspect class triggering heightened scrutiny for constitutional equal protection claims. The City of Cleburne, Texas, denied a not-for-profit a special use permit to establish a group home for adults with intellectual disabilities in an area zoned for multi-family residences. The not-for-profit unsuccessfully challenged the city council's denial in district court; on appeal, the Fifth Circuit held that the city council had unconstitutionally discriminated on the basis of intellectual disability.

In doing so, the Fifth Circuit relied in no small part on the "history of unfair and often grotesque mistreatment" that persons with intellectual disabilities have experienced. The Court noted that persons with intellectual disabilities had been systemically denied public education, segregated in "remote, stigmatizing institutions," and targeted for eradication through euthanasia and forced sterilization programs. As such, the Court reasoned that the denial of a special use permit for the purpose of establishing a group home was "likely to reflect the deep-seated historical prejudice" against persons with intellectual disabilities, and thus should be subject to heightened scrutiny. 

That wasn't the last word on the matter. The U.S. Supreme Court rejected the Fifth Circuit's reasoning that persons with intellectual disabilities' historical mistreatment warrants "a more exacting standard." The majority, however, overlooked key moments in disability history; at the very least, it painted a very different picture.

In the majority's view, statutory disability rights protections that resulted from concerted civil society mobilization and agitation instead exemplified legislators' benevolent designs towards persons with intellectual disabilities. Although the Court ultimately agreed with the Fifth Circuit that the city's permit denial impermissibily discriminated against persons with intellectual disabilities, it cast the "plight" of persons with intellectual disabilities as resulting not from societal prejudices but from the technical difficulty of crafting beneficial policies in light of their inherent "reduced ability to cope with and function in the everyday word." 

Justice Thurgood Marshall, a pivotal figure in the civil rights movement, took exception with the majority's revisionism. In his concurrence, he recounted a history of exclusion and marginalization based on nothing more than "ignorance, irrational fears, and stereotyping." He decried the nationwide "regime of state-mandated segregation and degradation" of persons with intellectual disabilities as paralleling "the worst excesses of Jim Crow." He pointed to the "[m]assive custodial institutions" that were "built to warehouse [persons with intellectual disabilities] for life" as a means "to halt [their] reproduction" and "nearly extinguish their race." He catalogued eugenical laws that categorically restricted the rights of persons with intellectual disabilities, particularly women, to marry and procreate. For Justice Marshall, the arc of disability history should bend the courts towards more "searching scrutiny" of decisions like the city council's permit denial, in order to root out the "impermissible assumptions or outmoded and perhaps invidious stereotypes" upon which they rest.

Forty years on, ignorance, irrational fears, and stereotyping of persons with intellectual disabilities persist. One need look no farther than the President's baseless assertions that federal workers with intellectual disabilities were responsible for the lives lost onboard American Airlines Flight 5342. Or the Secretary of Health's eugenical rhetoric about eliminating autism. Or the intentional revival of the "R" word by popular provocateurs.

Those who fail to study the darker chapters of disability history are more likely to take such positions lightly. Put another way, those unfamiliar with the lasting legacy of the Massachusetts School for Idiotic and Feeble-Minded Youth and the complex man for whom it was later named, Dr. Walter E. Fernald, may fail to appreciate how an accessible children's playground on the institution's grounds may represent for others steeped in this history the descrecation of hallowed ground. Thus, visibilizing and publicly reckoning with the darker annals of this history are critically important to shaping attitudes and engendering more inclusive societies today. 

The Massachusetts Special Commission on State Institutions has been doing just that. The world's first truth commission on disability institutions led by persons with disabilities, the Commission was established in 2023 in response to advocates' demands for an official reckoning with the unresolved legacies of mass institutionalization in the Commonwealth. Last month, the Commission released a groundbreaking report where it concluded that Massachusetts has engaged in "a pattern of practices, intentional and unintentional, [that] have prevented the general public from accessing this history, even when the people requesting that access are institutional survivors, their loved ones, and their descendants."

To single out one such troubling practice, Massachusetts officials have routinely invoked patient privacy protections to reject public requests for medical records and hidden burial locations of persons with disabilities who died in institutions. Such pretensions strain credulity, given the state's longstanding failure to secure protected patient information abandoned on the grounds of closed institutions. In the view of the Commission's two co-chairs, Katherine Benson and HPOD's Self-Advocacy Associate, Anne Fracht, alongside the Commission's vice chair and HPOD fellow Alex Green, published in The Boston Globe, such actions also "prevent a long-overdue reckoning with how our continued reliance on government programs for institutionalization disabled people has ripped apart the lives of Americans for nearly two centuries." Barring public access to documents that can tell the full history of mass institutionalization will only make it easier for leaders and communities to paper over the extent to which the "ignorance, irrational fears, and stereotyping" of the past continue to inform the policies of the present. 

The Special Commission is unique in its structure but by no means unique in its purpose to further disability transitional justice. In Massachusetts, advocates successfully lobbied state officials to restore a neglected cemetery on the grounds of the former Danvers State Hospital. In Pennsylvania, the Pennhurst Memorial and Preservation Alliance has advocated to establish and grow a museum on the site of the former Pennhurst State School and Hospital. Three person with disability-led organizations in California actively collaborate to honor those who died in state institutions. Farther afield, researchers and advocates in Australia have worked together to document the history of former institutions on Peat Island to inform the local government's plans for redevelopment the site. 

The Special Commission's historical human rights work is critical because an ignorance of this history makes it more likely that its vestiges will survive. But for the persistence of the kinds of ignorance, fears, and stereotypes about persons with intellectual disabilities that Justice Marshall denounced forty years ago, it is difficult to explain, for example, how in spite of revelations of mistreatment of adults and children with intellectual disabilities, the Judge Rotenberg Education Center has managed to resist repeated calls for closure.

Persons with disabilities have already learned—at incalculable personal cost—what the U.S. Supreme only recognized in Olmstead v. L.C., eight years after Justice Marshall retired, namely, that institutions not only “severely diminish[] the everyday life activities of individuals” but also “perpetuate[] unwarranted assumptions that persons so isolated are incapable or unworthy of participating in community life.” By overlooking the histories being told by the Special Commission on State Institutions and other groups like it, we risk allowing the ghosts of disability history to continue to haunt the present.

As we prepare for disability pride month, we would do well to revisit the lessons that disability history has to teach us. And as we simultaneously brace for the seismic shifts in federal disability policy, in particular, anticipated cuts to critical services and supports for persons with disabilities to live independently in the community, we forget the lessons of mass institutionalization at our peril.