Today is the first day of disability pride month. My understanding of cerebral palsy has changed over time. I am comfortable with my disability.
However, I can’t say that I am proud of my disability. I spent much of the last two months fighting with MassHealth after they took away my night PCA hours entirely. Ultimately, I was successful, but the process made me very sad.
No one should have to spend months collecting paperwork, writing appeals, and demonstrating repeatedly that they require services or equipment to live. I created a 19-page packet of evidence that was submitted to MassHealth. I documented everything I did over two days, including every time I needed help with activities of daily living. I included letters from my primary care doctor, physiatrist, and physical therapist as well.
There are times when I wish I didn’t have cerebral palsy so that I wouldn’t have to fight for everything I need. It’s never an easy process to get a new walker, in-home care, or a wheelchair. This year, those struggles feel even heavier because disability rights are under attack.
The U.S. Department of Justice’s Office of Legal Counsel has issued an opinion that could put the future of community living for disabled people at risk. For disabled people living in the community, it is not about policy. Living in our communities is about our independence and living with dignity. We cannot turn back time and undo decades of progress, and we should not return to a world where disabled people are forced into institutions.
The landmark Supreme Court case, Olmstead v. L.C., required states to end the unnecessary segregation of disabled people. It began with two women, Lois Curtis and Elaine Wilson, who wanted to live in the community rather than a nursing home. The state denied their request. Subsequently, their lawyer, Susan Jamieson, sued and changed the trajectory of disability rights in America.
The DOJ’s opinion states that the federal government has taken the Olmstead decision beyond what the Supreme Court intended. The opinion says the DOJ’s Civil Rights Division has forced deinstitutionalization in states under its guidance through injunctions, settlement agreements, and remedial orders, applying the integration requirement of the ADA. The Office of Legal Counsel says that such a level of enforcement goes beyond the original scope of the Court’s duties.
For many, these are political discussions. For disabled people, it’s personal. Medicaid is more than an insurance program. It is the only insurance program that covers home and community-based services, which are intended to help people remain in their communities.
For me, Medicaid covers the cost of PCA services, which help me get out of bed, go to the bathroom safely, dress, and live at home. If I lose those services, then my independence isn’t guaranteed.
I have already fought for months to retain the care I need. I had to keep proving that my disability wasn’t simply going to go away. I had to explain how and why I deserve to sleep safely throughout the night with the support I need. It was exhausting. It was humiliating. I know I’m not alone. There are millions of people just like me who are exhausted from having to prove their humanity.
Disability Pride Month invites us to celebrate disability. I can celebrate the disability community. I can feel proud of our strength, our advocacy, our creativity, and of the disabled people who came before us.
Yet, I will not celebrate a system that continually expects disabled people to prove that our lives are worth it. I will not celebrate a world where institutional bias is the norm. I will not celebrate budget cuts that threaten the services that millions of people rely on.
Although my disability has always affected me, I have found that the most difficult aspects of life with cerebral palsy have rarely been caused by cerebral palsy itself. They have been caused by barriers, bureaucracy, and policies that force disabled people to prove their worth over and over again.
Physical therapy, medication, surgery, and other treatments can help alleviate many of the physical symptoms of cerebral palsy, including spasticity. While physical symptoms can often be treated or managed, societal barriers cannot be addressed with medical interventions and require meaningful systemic change.
This Disability Pride Month, I hope people don’t just celebrate disabled people. I hope that they stand with us. I hope they understand that independence is not individual but based on the choices that our society makes to support it. And I hope we remember that disability rights are not guaranteed. They were won only by people who fought for them. And they are worth fighting for all over again.
Sources:
Broderick, Timmy. “Why Medicaid Cuts Could Be a ‘crisis’ for People with Disabilities.” STAT, Boston Globe Media, 3 Jan. 2025, http://www.statnews.com/2025/01/06/trump-medicaid-cuts-could-hurt-people-with-disabilities/.
Gabriela, Miranda. “How Disability Pride Month Started and What It Means.” USA Today, 2 July 2021, https://www.usatoday.com/story/news/nation/2021/07/02/how-disability-pride-month-started-and-what-means/7840560002/.
Lynch, Sarah N. “States Aren’t Required to Provide Community-Based Care for People with Disabilities, New DOJ Opinion Claims.” CBS News, 18 June 2026, https://www.cbsnews.com/news/doj-disability-opinion-community-care/