I had a cousin who was born with a disability in the late 1950s. We never learned what the disability was, or even the gender of the unnamed baby. At birth, the doctors told my great-aunt and uncle, “you should forget this baby and have another one.” It was common practice at the time, and they followed the doctors’ advice. Their baby was sent to an institution and forgotten; a letter arrived 18 years later with a death notice.

People often think of disability as something that happens to others, when in reality, most of us will become disabled at some point. Whether through accident, illness, or simply old age, we will all eventually join the largest minority in the country (one in 10 people are disabled). When I became disabled as a teenager and began focusing on disability rights, my mother told me the story of my cousin; it resonates deeply, still. Did that baby ever get a name? What family traits did we share?

I don’t know where my cousin was institutionalized, but I know the practice continued for decades. Not until 1972, when Geraldo Rivera blew the lid off Willowbrook State School and exposed its many abuses, did the deinstitutionalization movement begin to receive national attention and gain momentum. Willowbrook was horrific, and its squalid, overcrowded, and abusive conditions were not unique. Here in western MA, the specter of Belchertown State School looms large, even though there isn’t much left of the actual buildings. The graveyard remains – each grave marked with a number. My cousin is certainly buried in a grave like that, somewhere in New England.

Over time, the work of thousands of powerful disability activists and their allies saved us from that horrific fate. Throughout the 1960s and 70s, we developed support systems to assist people with disabilities in living on their own. With the help of our PCAs (personal care assistants), we work, shop, and are involved in the community. People like Ed Roberts, who founded the Independent Living Movement, and Judy Heumann, who fought for Section 504, continue to inspire disability activism to this day. But some of the things they fought for are now under serious threat.

The current administration risks cutting $2.3 trillion from Medicaid – not only cuts to healthcare, but for the disability community, cuts to a lifeline. In 2021, 7.5 million people used Home and Community Based Services (HCBS) through Medicaid. HCBS allows disabled people to live independently, employing PCAs to help with daily tasks like food preparation or mobility assistance. They now have the freedom to live with dignity in their own homes.

If Medicaid and HCBS are cut, institutionalization rates will rise, as we lose the supports we need to live independently. And this isn’t just about us, it’s also about you. When, not if, you become disabled, will you want to live at home with assistance, or in an institution? Without Medicaid, we won’t have a choice.
Medicaid needs your support now – tell your local representatives, senators, and anyone who is willing to listen. We need them to fight for Medicaid, Home and Community Based Services, and the PCA program.

- Rachael Cowan is a Systems Change Advocate at Stavros Center for Independent Living. She holds a BA in Medical Ethics and Disability Justice from Hampshire College and has worked in the disability field for over 10 years.