CW: Institutionalization
Lately, I’ve been questioning my humanity. For the last three weeks, I’ve been preparing to appeal the decrease in my PCA hours.
Ever since I turned 18, I’ve learned just how difficult it is to live as a disabled adult. I’ve always had high expectations for myself. One of the hardest lessons I’ve had to learn is that society doesn’t share in those same expectations.
As a person with cerebral palsy, independence is difficult to achieve. It is never easy to need help with daily tasks. Sometimes, I wonder what it would be like to shower and get dressed in complete privacy. Imagine hiring a perfect stranger to help you get dressed, shower, and use the restroom. For many disabled people, this is everyday life.
I rely on others every day, and relying on other people is never easy. During my first three semesters of college, I hired three different PCAs (personal care assistants). The constant revolving door left me exhausted and frustrated. Shortly before Thanksgiving 2018, I became so overwhelmed that I broke down in tears. I went to bed upset because all I wanted was the chance to enjoy college.
Instead, I found myself constantly worrying about whether my needs would be met. Would someone show up on time? Would they quit unexpectedly? Would I have enough approved hours to get through the week without sacrificing sleep, hygiene, or basic dignity? These are questions that many disabled people live with every single day.
And even beyond personal care, independence can still feel out of reach. Finding accessible housing is another obstacle many disabled people face. Affordable homes that truly meet accessibility needs are incredibly difficult to find, and waitlists for accessible apartments can last for years.
As a result, many disabled people end up living in places that do not meet their needs. They live in homes or apartments without ramps, elevators, roll-in showers, or enough space for mobility devices or caregivers.
For some, the lack of accessible housing leaves them with no choice but to remain in institutions or nursing homes because there is simply nowhere else safe to live. Even when accessible housing is available, it is often priced far beyond what disabled people can afford, especially while navigating strict income and asset limits tied to benefits.
Housing should be the foundation for independence. Unfortunately, for many disabled people, it is another barrier that limits freedom and full participation in their communities.
This is particularly painful because these services and supports are seen as luxuries when they are not. PCA services are not a luxury. Medical equipment is not a luxury. Accessible housing is not a luxury. These things are the difference between participation and isolation — between surviving and truly living.
When my PCA hours are reduced, it sends a message to me, whether intentionally or not, that my life can be measured in minutes. To them, my need to eat, shower, get out of bed, and live with dignity is in some way negotiable. This appeal has made me relive my most vulnerable moments in life and have to prove yet again that I deserve support.
There’s something utterly dehumanizing about being forced to use paperwork to justify who you are. Society often praises disabled people for being “independent,” but rarely acknowledges the support systems that make independence possible.
For me, independence has never meant doing everything alone. To me, independence means having reliable support so I can be a student, writer, family member, and friend. I am someone who has goals beyond “just surviving.”
I do not want pity; I want understanding. I want people to understand that while being disabled can be frustrating, it doesn’t mean my life is a tragedy. What is really tragic is a society that forces disabled people to fight every single day for the supports and services that allow us to live our lives with dignity.
And yet I still aspire to be what people and systems don’t allow me to be. I want to have a full life. I want to have a career, relationships, and the opportunity to really live. I deserve to live a good life. And I know I’m not the only disabled person who is exhausted from constantly proving their humanity.