CW: Institutionalization
Some political issues hit close to home. When I first read Tim Shriver’s letter to his cousin, Health Secretary Robert F. Kennedy Jr., it felt deeply personal.
Shriver wrote the letter in response to a Justice Department memo that reinterprets the Supreme Court’s Olmstead decision. That decision made clear that disabled people have the right to receive care in their communities rather than being forced into institutions. For many, this might seem like a legal technicality.
However, to me, it’s why I can live independently in my own home. I make my own decisions and maintain the relationships and routines that define who I am. I wouldn’t have the same freedom if I were institutionalized.
As a longtime disability rights advocate, Shriver made clear he wrote the letter from a personal perspective. He has led the Special Olympics since 1996, an organization founded by his mother Eunice. She believed that people with intellectual and developmental disabilities deserve joy, pride, and a sense of belonging.
His family has spent generations fighting for inclusion. In a message to The Washington Post, he wrote. “This is something that is in some ways the central passion of our family. And I hope and believe that Secretary Kennedy understands that.”
I hope he does too, because this isn’t just political for me. I’m twenty-six and live with cerebral palsy. To live in my community, I rely on PCA services.
This spring, MassHealth abruptly cut all my nighttime PCA hours. One day I had the support necessary to live safely; the next, it vanished. What followed was two months of paperwork, appeals, phone calls, and constantly explaining that overnight care is a necessity for me. It was exhausting and dehumanizing
PCA services aren’t a luxury. They are how I get out of bed, prepare meals, and navigate my day with dignity. They represent the difference between living in my community and being forced into a life I don’t want.
When I think about losing that freedom, I don’t envision dramatic moments but rather subtle, quiet losses: waking up someone else wants me to, eating what someone else prepares, asking permission before leaving. I imagine losing the small routines that ground me. I enjoy picking what I want to eat, and watching TV in my room. These details might sound small, but they represent the difference between living and existing.
That’s why this memo matters. It implies states might not be obligated to provide home- and community-based services. If this changes, people like me will lose services. However, we’ll also lose autonomy, dignity, and the ability to direct our own lives.
Advocacy is not abstract, it’s very personal. It’s about protecting the rights of disabled people. It’s about showing that our lives are more valuable than any line in any budget. It’s about ensuring decisions made in Washington don’t take away the independence we’ve fought so hard for.
Shrivers’ hope is real, and so is mine. Hope isn’t enough though. We have to act when our rights are violated. We can’t stay quiet. One thing is clear. We want to be in our communities. We cannot undo decades of progress. Rights aren’t won overnight, and we must continue to fight for them. Disabled people’s dignity and quality of life matter.
Sources:
“Happy Birthday, Eunice Kennedy Shriver.” YouTube, uploaded by Special Olympics, 10 July 2026, http://www.youtube.com/shorts/JcrFPwgl2Fo.
Wu, Daniel. “In Letter to Cousin RFK Jr., Health Advocate Warns of Threats to Disability Care.” The Washington Post, 3 Aug. 2026, http://www.washingtonpost.com/health/2026/08/03/letter-cousin-rfk-jr-health-advocate-warns-about-threats-disability-care/