CW: Institutionalization
As a child, I had high expectations for myself. I did not see my disability as an obstacle. However, I did not anticipate possessing the strength, the patience, and the self-advocacy needed to live as a disabled adult.
My life has always been shaped by living with cerebral palsy. It has involved navigating systems that are often rigid and impersonal. Often, I’ve had to explain my needs many times to achieve my goals. The burden lies in always making sure my experiences are something someone will consider.
It takes strength and self-awareness to advocate for yourself. Self-advocacy is something that builds character. It is, however, harder than it should be.
Right now, I am appealing my decrease in PCA hours. I’ve lost 16 hours per week which affects my ability to be independent. They also denied my request for a fair hearing.
A denial isn’t just someone saying no. It can feel like you are being ignored, doubted, or dismissed by people who refuse to see your reality. Right now, amid federal Medicaid cuts, the stakes feel even higher.
For so many disabled and older Americans, these cuts are more than political disputes. They influence whether you continue living at home or end up in an institution, whether you maintain your independence or become isolated from your community.
Anyone who has experienced this process knows just how fragile it feels. You’re asked to disclose the most intimate aspects of your life, you explain what you struggle with, the help you need, and what your routine is like. Then you hope for the best and pray that someone understands you. If they do not, it hurts.
Still, I refuse to give up. I fight back. The system wasn’t made for people to get what they need easily. However, I’m not letting a denial, or the political turmoil surrounding Medicaid, define my worth.
Source:
Hixenbaugh, Mike. “Families Caring for Disabled Relatives Face Unthinkable Choices as Medicaid Cuts Loom.” NBC News, 15 May 2026, https://www.nbcnews.com/news/us-news/trump-medicaid-cuts-threaten-caregivers-disabled-family-members-rcna344930.