Disability Pride Month is almost over, and I’ve been reflecting on how my view of cerebral palsy has changed. I’m comfortable with my disability. I know my body. I know what I need.
I can’t say I’m proud of my disability though. Not in the way people usually talk about pride anyway. Feeling proud of my disability has been especially challenging this year.
In the spring, MassHealth took away my night PCA hours entirely. One day I had the support I needed to live safely, and the next day it was gone. What followed was months of gathering paperwork, writing appeals, calling offices, and explaining again and again that I require overnight care. It was exhausting and dehumanizing.
Although I was successful, my victory felt bittersweet. It’s hard to feel proud when you’ve spent months explaining your needs to organizations that should already understand them. It’s hard to celebrate when the services that keep you alive can be taken away without much warning.
I know I am not alone. Medicaid cuts nationwide have been quietly reshaping disabled people’s lives. States are reducing hours, tightening eligibility, and cutting costs. But the impact is deeply personal. Every budget cut forces someone to fight for care, uproot their life, or go without essential care. You can’t feel proud when you’re watching the services you need disappear.
Then came the recent memo from the Department of Justice. Many people saw it as trying to force disabled people back into institutions. Even if that wasn’t the memo’s intent, the fear it caused was and is real. Disabled people know how quickly “flexibility” can lead to cuts. We also know that policy changes often hurt those who rely on these services the most. The memo felt like a reminder that our rights are always unstable. They are always open to reinterpretation, and something we need to defend. Pride becomes complicated when the systems meant to help you also threaten your stability.
As Disability Pride Month comes to an end, I’m grappling with something quieter and more complex than pride. I’m not ashamed of my disability, and I’m not hiding it. I’m comfortable with who I am. Perhaps the end of Disability Pride Month is a good time to recognize that pride can coexist with exhaustion, frustration, and reality. Maybe advocacy is a form of pride, even when it doesn’t feel celebratory.
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/.