Part 1: Disability Rights: From institution toward independence

By Anne Henshaw
©2026 Telegraph Publishing LLC

For much of American history, people with disabilities were seen as “others;” as problems to be managed. Disabled people were denied access to public schools, barred from employment, denied voting rights, subjected to eugenics laws, sterilized without consent and segregated banished from public life. They were not only invisible — they were intentionally disregarded.

When my son with a disability was born, one of my earliest advocacy mentors came to visit us. When her son had been born decades earlier, her doctor encouraged her to leave him at the hospital, to “tell everyone at home he had passed during birth.” He told her to “go home and, in six months, try again.”

Over the past 13 years of parenting and advocating in the disability community, I have heard multiple versions of this story.

Throughout the 19th and early 20th centuries, disabled children and adults were routinely institutionalized, placed in “state schools” or “residential schools,” often for life.

Large state institutions claimed to provide care but frequently delivered isolation, neglect, abuse and invisibility. Families were pressured to “put away” children who were blind, deaf or intellectually or physically disabled. Many never returned home.

When I began working with autistic adults in Texas on shared legislative advocacy initiatives, I met an autistic woman — I’ll call her Nancy. Nancy told me that she had been placed in five separate institutions by her well-meaning family after a doctor told them, “These people can only be institutionalized.”

Large state institutions claimed to provide care but
frequently delivered isolation, neglect, abuse and
invisibility. Families were pressured to ‘put away’
children who were blind, deaf or intellectually or
physically disabled. Many never returned home.

As she reached adulthood, Nancy began hearing whispers about something called the Independent Living Movement. This was a growing movement of disabled activists who were demanding that the needs of disabled people should be met in their homes or communities instead of behind locked doors and gates on the outskirts of community. More and more of Nancy’s peers were being brought home, many by siblings, so supports could be delivered in the home or community.

Nancy wanted that. So one night, she escaped. Nancy stole a horse from a neighboring farm — as many institutions were and still are built far outside populated areas — and rode for three days until she made it home. She refused to return.

Her story is extraordinary. But it is rare. Across the country, the stories of people being able to leave institutions to receive home and community based supports are not common.

In the 1960s and 1970s, disabled activists began organizing under a shared principle: “Nothing about us without us.” This movement, later known as the Independent Living Movement, fundamentally reframed disability. It rejected the idea that disability was a personal tragedy or a defect to be corrected. Disabled people had rights — and denying those rights was a civil rights violation.

In the 1960s and 1970s, disabled activists began
organizing under a shared principle:
‘Nothing about us without us.’

From this movement came the Rehabilitation Act of 1973, the historic 504 sit-ins of the late 1970s where disabled wheelchair users occupied a federal building in San Francisco to demonstrate how lack of accessibility was a civil rights violation, and ultimately the Americans with Disabilities Act of July 1990. The movement also laid the groundwork for the Supreme Court’s 1999 Olmstead v. L.C. decision, which affirmed that unnecessary institutionalization is a form of discrimination.

The Independent Living Movement insisted:

• Disabled people belong in community.
• Disabled people are experts in their own lives.
• Supports and services should promote autonomy, not control.
• Institutionalization is not the default solution.

The advocates and activists of the Independent Living Movement did not end segregation or ableism. Both remain deeply embedded in our systems. What disability advocates and activists did was fundamentally change the conversation and culture around disability in ways that had never happened before.

Because of the advocates and activists of our past, we now proudly proclaim and insist that disability rights are human rights.  Yet everything disability activists and advocates have fought for — the gains, the successes, the systemic change — is now at grave risk here in Vermont.

April 14: Part 2: Housing, healthcare and mobility challenge Vermonters with disabilities

April 21: Part 3: Building a Vermont for everyone

Anne Henshaw, a Chester resident and member of the board of the Green Mountain Unified School District, is a 2020 graduate of the Partners in Policymaking program, a member of the National Down Syndrome Advocacy Coalition, a 2015-2020 member of the Council of Parent Advocates and Attorneys, certified in Person-Centered Thinking and Planning, and an former IEP consultant. For more than a decade, she and her family have engaged in legislative advocacy and intersectional activism focused on equity, inclusion, and community belonging.