A Resurgence of Disability Institutions?

On November 3, 2025, the Harvard Law School Project on Disability (HPOD), in collaboration with the Disabled Law Students Association (DLSA) and the Boston Center for Independent Living (BCIL), brought together legislators, advocates, scholars to discuss ongoing risks to the right of persons with disabilities to live independently and be included in their communities. At the event, speakers assessed the pioneering historical human rights work of the Massachusetts Special Commission on State Institutions in the context of national-level developments that augur a possible return of outmoded policies that promote institutionalizing persons with disabilities.

Hezzy Smith, HPOD’s Director of Advocacy Initiatives, set the stage for the discussion by underscoring the convening’s central aim: to “spotlight disabled leadership and center community voices in the struggle over policy and practice” around models of service delivery for persons with disabilities. Among the varied efforts throughout the country to reckon with the legacy of mass disability institutionalization, the example set by the Special Commission on State Institutions stands out as perhaps the world’s first truth commission on disability institutions led by persons with disabilities. Smith commended its members for holding the Commonwealth to account for having impeded "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." 

The featured speakers, Senator Mike Barrett and Representative Sean Garballey, were two sitting state legislators, both of whom are recognized disability rights champions in the Massachusetts legislature and played indispensable roles in establishing the Commission and enabling its work. Also, following the model of the Commission, which was led by persons with disabilities, two advocates, teachers and researchers with disabilities moderated the dialogue. HPOD’s Self-Advocacy Associate Anne Fracht posed incisive questions on political strategy and the lived stakes of policy choices, alongside Alex Green, HPOD Fellow, Lecturer at the Harvard Kennedy School of Government, author of A Perfect Turmoil, and drafter of the legislation establishing the Commission.

State Senator Mike Barrett: Movement-Building, Institutions and History

Senator Barrett reflected on how both personal experience and long involvement in disability policy shaped his commitment to the Special Commission’s work. He spoke about his early encounter as a college student volunteering at a state institution, where he realized how easily a child could be “misplaced or misassigned” in settings that were supposed to provide care.

Decades later, his experience raising two daughters who were born deaf deepened his understanding of disability as an evolving part of life, not a static condition. As he put it, “Disabilities are coming for all of us. It’s only a matter of when.” With the realization that everyone who lives long enough will likely become part of the disability community, “you start to build a very powerful advocacy movement.” For him, that simple truth is an invitation to build political solidarity across lines of age, health, and circumstance.

Barrett emphasized that this solidarity is not just philosophical — it is political, and it requires vigilance. He warned that success is fragile: “Success to date guarantees nothing about the future.” He traced how deinstitutionalization mobilized families and communities and built the disability rights movement’s political power, but he argued that today the Commonwealth must also look backward to reckon with what was left unexamined in the rush to close institutions. “We fled so quickly,” he said, “that we forgot even to record the history.”

That history matters urgently, he stressed, because the reappearance of calls for re-institutionalization shows how quickly harmful ideas can return. Barrett concluded that there is no permanent solution, only sustained commitment:

“Eternal vigilance is the price of everything — not just liberty, but quality of life.”

State Representative Sean Garballey: On Dignity, Policy, and Threats

Representative Garballey traced the roots of his advocacy to a stark encounter with disability bias early in his legislative career. He recalled being implored by a prominent expert not to file a bill opening pathways to higher education for students with intellectual and developmental disabilities because it would supposedly “downgrade the education of every other student.” Although he filed the bill regardless, the moment left him “numb” and taught him how entrenched ableism can be even among professionals who claim expertise. That bill has helped make Massachusetts a pioneer in inclusive higher education.

That experience also shaped his understanding that disability rights work is long, difficult, and essential. It prepared him for the emotional weight of confronting the history of state institutions: cemeteries filled with people buried without names, birthdates, or identities — only a letter for religious affiliation and a number. For Garballey, the Commission’s work centered on “restoring dignity for these individuals who were forgotten by history.” As he put it,

“These individuals were treated horribly and then buried with no name — literally cast aside by history. We need to make this right.”

He argued that Massachusetts must openly acknowledge the harm it caused, insisting that “there needs to be an apology for what happened, so we can move forward together.” The Commission’s deep dive into the history of harms caused by large-scale, segregated disability institutions will help the general public to “educate themselves in terms of what happened in these state institutions so they can never happen again.” For Garballey, the Commission’s focus on giving voice to the “uncomfortable stories” of “real people” affected by institutions, even if they “make your skin crawl,” was “absolutely essential for people to really understand what took place.”

He also warned that today’s threats are not abstract: cuts to Medicaid and home- and community-based services, he said, “absolutely undo a lot of the services that are critically important for individuals with disabilities to succeed in their communities.” Re-institutionalization, he cautioned, can take many forms, including the quiet funneling of persons with disabilities into nursing homes or the erosion of the safety nets that enable community living. After all, as Green’s biography of Dr. Walter E. Fernald shows, the road to mass institutionalization was in many ways paved by good intentions.

“We need to make sure that we never, ever whisper about going back to that again.”

Confronting the Past to Meet the Present

The conversation traced the evolution of disability policy, examining what drove the original mass institutionalization, how calls for “reform” or for “choice” are being re-employed to push for more segregated settings, and how the disability community can respond in a time of political uncertainty. Green explained how his historical research reveals not just mistakes, but enduring patterns: the same rationales—efficiency, order, protection—keep resurfacing, even though institutions have failed generations.

Fracht pressed the panel on practical leadership: How do we get more people with disabilities in elected office? How do we make sure the laws being passed aren’t just about us, without us? Senator Barrett and Representative Garballey responded with recommendations for inclusive leadership pipelines, support for candidates with disabilities, and safeguarding records from state institutions to ensure transparency and public accountability. They also acknowledged the need to learn the lessons of the not-so-distant past in order to prevent institutionalization in new and different forms.

In the face of these threats, Senator Barrett and Representative Garballey previewed the ongoing fight that will play out in the next legislative session over bills that aim to limit unnecessary institutionalization, change home and community-based services (HCBS), and protect disabled residents’ records and personal rights. The speakers urged community members to make their voices heard, so that state-level policies adopted to meet the challenges of the present do not inadvertently repeat past mistakes.

As Smith reminded attendees at the event’s outset, while the Commission has helped shine a light on hidden and enduring effects of mass institutionalization, it also serves as a reminder of “how incomplete our nation’s deinstitutionalization project remains,” despite the enormous shift in national- and state-level policies in recent decades towards supporting people with disabilities to live independently in their communities. In this way, the “extraordinary” work of this “extraordinary” commission may be focused on the past, but it is also very much about the present.

Sahar Khan is a Class of 2026 LL.M. Candidate at Harvard Law School.

---