Privacy And Cerebral Palsy:

Having Cerebral Palsy means that I require assistance with daily living activities, including showering and toileting. This never gets any easier. I’ve lost track of how many people have helped me use the bathroom. Imagine hiring a perfect stranger to help you get dressed, showered, and use the bathroom. For many disabled people, this is a reality of their lives. It’s always hard to allow someone to help you with such personal tasks.

Occasionally, I experience episodes of incontinence. This is embarrassing, but it needs to be talked about more. No adult wants to have issues with incontinence. However, this does happen, and disabled people shouldn’t feel ashamed. I always feel guilty when my PCA has to help me after I’ve had an incontinence episode. He never makes me feel bad when this happens, which helps me deal with it.

Despite needing help with my activities of daily living, privacy is still important to me. Since moving into my apartment, my friend has been my sole PCA. We agreed to this arrangement, and it works well for us. I’m much more comfortable with him than a stranger I hired off Craigslist. You never know who will respond when you post a job ad on the internet. He knew me for years before becoming my PCA, and we were already familiar with each other. It’s nice to have reliability and consistency when you have personal care assistants. I rely on my PCAs to help me get dressed, use the bathroom, and assist me with transportation. I don’t want just anybody working for me.

In college, I went through a new PCA every semester for my first three semesters. This wasn’t easy. It was hard enough adjusting to college life, let alone dealing with a revolving door of PCAs. I just wanted to get to my classes on time. It felt like this was too much to ask for.

I’ve had PCAs in the past who wanted to get too close to me. Boundaries are essential when you hire PCAs. I had a PCA in the past who didn’t understand that she could let me be alone in my room. I had another PCA who wanted to borrow money from me and wanted to know my friends. Having a PCA ask to borrow money is not appropriate whatsoever. She also wanted to get to know my friends and often asked to meet them. I didn’t want her to meet my friends. In my opinion, this was unprofessional. I’ve never befriended any of my PCAs who have been strangers for this exact reason.

Disabled people are allowed to have privacy in their lives. We already have to deal with so many unfamiliar people and situations every day. Establishing boundaries is okay. We deserve to be treated with respect and listened to. Needing help doesn’t mean we can’t make our own decisions and control our lives.

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