When Your Life Is in a Stranger’s Hands:

One of the most complicated aspects of Cerebral Palsy is relying on other people to help you live. I often wonder what it would be like to shower in total privacy. I am fortunate to have a devoted, trustworthy PCA. It is difficult to find home healthcare staff. I’m required to allow others into places and situations most people consider private.

It’s challenging to feel comfortable in your own body when you’re constantly being looked at and touched by people assisting you or taking measurements of the range of motion in your joints.

At times, the healthcare system is also frustrating to me. Two years ago, I received a new power wheelchair. The process took eighteen months. My insurance denied the chair entirely at first.

However, they denied the seat elevator as well. According to Health New England, I didn’t need it. They saw it as more of a convenience. The people who made this decision have never met or spoken to me. I am more than a letter of medical necessity or a diagnosis, but that is how they see me.

I was grateful that my community paid for it through donations. However, nobody should have to rely on donations to pay medical bills. I was overwhelmed by the kindness my community showed me. The seat elevator allows me to reach items on shelves, access my kitchen, and get a drink.

It often feels like the presumably non-disabled people who make these decisions mustn’t think that disabled people live life. At 18, I had to request more PCA hours from Medicaid to attend college. I had to appeal their initial decision.

The next challenge was finding PCAs. Unfortunately, I went through three PCAs in three semesters of college. There were times my mother or a friend had to rearrange their schedules because my PCAs didn’t show up.

I want health insurance companies to understand that people’s lives are affected by their decisions. PCA hours allow me to live in my apartment. Without my PCAs, I might be forced to live in a nursing home.

Without a new power wheelchair, I would have continued using my old one. I used my old chair in September, and sitting in it for a few hours caused severe pain. My current wheelchair offers more postural support.

Cerebral Palsy means that I am at the mercy of everyone around me sometimes. My disability doesn’t mean I am stripped of my autonomy. Disabled people deserve to make their own decisions because we are human.

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