CW: Ableism
Today is the last day of Cerebral Palsy Awareness Month. I have had CP my whole life. For me, the physical symptoms are difficult, particularly the spasticity. However, there are ways to help manage the physical symptoms, such as therapy and medications.
The emotional toll can also be overwhelming. There are times when I wish I didn’t have cerebral palsy so that I wouldn’t have to fight for everything I need. I feel like I am constantly fighting bureaucracy.
It’s never an easy process to get a new walker or wheelchair. I need my equipment. It’s not a luxury. I wish more people understood just how important medical equipment is.
My challenges haven’t just been medical or bureaucratic; they’ve also shown up in the classroom. Growing up, I often had to fight just to get the education I deserved. Whether it was getting the right accommodations, dealing with buildings that weren’t accessible, or facing people who doubted my abilities, school was rarely fair. I spent a lot of time pushing for basic supports—extra time, assistive technology, physical access—and it sometimes felt like I had to work twice as hard just to be on the same level as others.
Unfortunately, these struggles didn’t end when I got to college. In 2023, the former director of disability services at Greenfield Community College told me that notetakers weren’t available for remote classes. When I pointed out that my accommodation agreement said differently, I was told I had “misinterpreted” it.
By March 2024, after the office kept failing to meet my needs, I emailed the college president directly. She forwarded my email to the provost in charge of the office. Two months later, I was shocked by his reply: instead of helping me get the accommodations I was legally entitled to, he suggested I transfer to another college. These experiences made it painfully clear how much our systems still struggle to see disabled students as fully capable learners—and how often we have to carry the burden of fixing those failures ourselves.
As if these barriers weren’t enough, people with cerebral palsy are now confronting cuts that threaten our ability to live in our own homes. Like millions of other people nationwide, I am currently dealing with the effects of Medicaid cuts. In Massachusetts, a working group has proposed approximately $32 million in cuts, including lowering the weekly PCA overtime limit from 66 to 60 hours and cutting back on time for tasks like meal preparation.
These changes may seem inconsequential on paper, but they have serious consequences. The PCA workforce is already stretched thin, and many disabled people find it hard to get the hours they need. Reducing overtime means people may have to find additional PCAs, which is often impossible. For me, it would mean my live-in PCA would lose thousands of dollars in wages, making it harder to retain reliable support.
Many people worry that if cuts continue, the program that has allowed disabled people to live in their communities could gradually disappear. There’s a painful irony here: the PCA program was created to prevent people from going into nursing homes. Nursing homes cost the state much more and are far more restrictive for us. Cutting home and community-based services may save money now but could lead to greater costs—both financially and humanely—in the future.
These issues are not just abstract policy issues for me. They affect my everyday life. They decide if I can get out of bed safely, go to school, take part in my community, and live with dignity. When support gets cut, it’s not just some numbers on a spreadsheet—it’s real people like me feeling the impact.
Cerebral palsy is a disability that lasts a lifetime, but the obstacles I face don’t have to be. They come from choices: choices about funding, priorities, and whose needs get attention. I don’t expect life to be easy, but I hope that the systems will honor the humanity of every disabled person.
As Cerebral Palsy Awareness Month ends, I hope awareness doesn’t stop there. I want people to keep listening, learning, and speaking up. I hope that policymakers and insurance companies understand that supporting home and community services means supporting freedom, stability, and the right for disabled people to live the lives we want.
I’m proud of who I am. I’m proud of my community. And I’ll keep advocating—because our lives and independence matter every day of the year.
Sources:
Laughlin, Jason. “MassHealth Is Losing Billions. Cuts May Be Guided by Those It Serves .” The Boston Globe, Boston Globe Media , 5 Mar. 2026, http://www.bostonglobe.com/2026/03/05/metro/masshealth-pca-program-cuts-trump/?
Parsons, McKenzy. “March Is National Cerebral Palsy Awareness Month.” KPTM, Sinclair Broadcast Group, 15 Mar. 2022, https://fox42kptm.com/news/local/march-is-national-cerebral-palsy-awareness-month.