Spring 2025 Semester in Review

The Massachusetts Special Commission on State Institutions is 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. In June, 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."

HPOD Self-Advocacy Associate Anne Fracht, who co-chaired the Commission, and the Commission's vice chair, Alex Green, a Harvard Kennedy School Lecturer and HPOD fellow, have played critical roles in the Commission's historical human rights work. Their work has shone a light on the pain of family members who have sought in vain to understand the lives of loved ones who were institutionalized. As Ms. Fracht and Professor Green wrote in The Boston Globe, Massachusetts' denial of public access to and mishandling of institutional records have forestalled "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." Importantly, the Commission's work has generated momentum for legislative reforms.

Accountability for Mass Institutionalization of Persons with Disabilities

Anne Fracht Appointed to Special Commission on State Institutions

HPOD's work and personnel alike have been recognized in recent months. Notably, Harvard Law Today (HLT) profiled Professor Green, whose book on Walter E. Fernald explored how his views on institutionalizing persons with disabilities shaped our nation's thinking for generations.

Several HPOD team members were recognized for their contributions to the field. Executive Director Professor Stein received the STAR award from Living Independently Forever, Inc. (LIFE), a non-profit disability service provider in Massachusetts, while Ms. Fracht was honored with a career achievement award from the Massachusetts chapter of the Association of People Supporting EmploymentFirst (APSE)—a national, non-profit membership organization dedicated to promoting competitive integrated employment for persons with disabilities. 

HLT also recently featured a Q&A with HPOD's co-founders, Professors Alford and Stein, who reflected on HPOD's ethos and evolution over the past 20 years, in addition to highlighting the work of other HPOD colleagues, including Senior Advisor, Luis Gallegos, who, as Ecuador's Ambassador to the United Nations, was central to the drafting of the UN Convention on the Rights of Persons with Disabilities and who now is playing a leading role in its work on older persons' rights.

Recounting the struggle to care for people with disabilities in the U.S.

Promoting the Dignity of Persons with Disabilities throughout the World

‘Living — and dying — with dignity are both important’

Amid unprecedented major changes in U.S. disability law and policy, Director of Advocacy Initiatives Hezzy Smith provided a timely roundup and practical advice for people likely to be affected. Also, Professor Stein co-authored an article in the Journal of the American Medical Association on the adverse effects of cuts to critical federal programs on which persons with disabilities rely. Mr. Smith, together with Ms. Fracht, and colleagues from Massachusetts Advocates Standing Strong, shared preliminary findings from an ongoing research study to illustrate how Medicaid cuts will jeopardize the ability of persons with intellectual disabilities to live in their homes and communities, in addition to Ms. Fracht's evocative essay on how she and many of her peers may personally be affected by them. 

This year's Petrie-Flom Center for Health Law Policy, Biotechnology, and Bioethics' annual conference focused on aging. Professors Stein and Leslie Francis of the University of Utah presented a paper outlining model statutory protections for older persons' decision-making rights, while Mr. Smith made the case for clearer recognition of a right for older persons to use forms of delegated decision-making, such as durable powers of attorney. 

Senior Associate Dr. Penelope J.S. Stein collaborated with the United Nations Children's Fund (UNICEF) to produce a vital educational resource that presents compelling accounts from youth with disabilities in the Global South experiencing the differential effects of climate change. As with HPOD's Easy Read primer on climate action for persons with disabilities, HPOD is seeking to use accessible informational resources to empower persons with disabilities to more effectively advocate for themselves. In addition, Professor Stein and Mr. Smith published a book chapter describing how climate litigators can use disability rights legal protections to help advance disability-inclusive climate action, on the heels of the Inter-American Court of Human Rights'  decision on governments' climate-related human rights obligations.

Senior Director for East Asia Dr. Fengming Cui continued HPOD's longstanding engagement with the region. She continued her work in China with local partners and also her scholarship, which included the publication of the fourth volume of Oral History of Special Olympics in China (with Professors Alford and Liao Mei) in addition to a sole-authored book chapter on the right to accessibility. Also, as part of its ongoing support for disability scholarship in East Asia, HPOD hosted Dr. Hong Qi as a Visiting Scholar to further her book project on the rights of women with psychosocial disabilities to be free from exploitation, violence, and abuse. A Lecturer at the China-EU School of Law at the China University of Political Science and Law, Dr. Qi teaches family law, nonprofit organization law, and civil law.

What to Know and Do about Ongoing Changes to U.S. Disability Law and Policy

Ensuring Older Persons’ Human Rights

Throughout the spring, HPOD held a series of events on emerging issues, including a webinar co-organized with the Petrie-Flom Center for Health Law Policy, Biotechnology, and Bioethics and the GlobalMentalHealth@Harvard Initiative on the effects of climate change on the mental health of persons with disabilities, which featured Pat Dudgeon, a Research Fellow at the Poche Centre for Indigenous Health, School of Indigenous Studies, University of Western Australia; Asha Hans, former Professor of Political Science & Director of Women's Studies at Utkal University; Leo Goldsmith, a Ph.D. student at the Yale School of the Environment; Walid Yassin, Assistant Professor of Psychiatry at the Harvard Medical School, Beth Israel Deaconess Medical Center; and Lise van Susteren, a psychiatrist & environmental activist.

HPOD also hosted two in-person events on the Harvard Law School (HLS) campus: a book talk featuring Professor Green, which addressed the enduring legacy of mass institutionalization of persons with disabilities and the historical figures who helped craft these policies, and a talk by Professor Celeste Arrington of George Washington University (co-organized with the East Asian Legal Studies program) on the critical role played by cause lawyers to advance disability rights in East Asia.

Beyond the HLS campus, HPOD continued its collaboration with a broad coalition of prominent civil society and intergovernmental organizations to raise awareness of older persons' rights, including the rights of older migrant, refugees, and stateless persons, as well as the rights of older persons to access health systems in conflict through the United Nations Institute for Training and Research's 4th yearlong virtual roundtable series. HPOD again participated at the 18th annual Conference of States Parties to the CRPD in New York, with Professor Stein joining a panel of civil society experts and government representatives from Austria, Dominica, and Uzbekistan to take stock of the disability-inclusive climate solutions ahead of the the Second World Summit for Social Development. 

From Awareness to Action: Ensuring climate and crisis response that works for all

Mental Health and Climate Change: When a global crisis and planetary emergency collide

Tracing the Origins of Mass Institutionalization of Persons with Disabilities in North America 

Disability Rights Advocacy and Legalism in South Korea and Japan