Living with a physical disability means that I spend my days with PCAs, doctors, therapists, family and friends. I have to let people into the most intimate moments of my day such as when I need a shower or need to get dressed. I’m required to invite others into places and settings you believed were private out of necessity. Every time I have to use the bathroom or take a shower. My current PCA knows little things about me. Such as the fact that I like the smell of Old Spice body wash more than the other kinds I’ve tried and what flavor of fruit juice is my favorite. My PCA knows me very well. There are very few things you don’t share with someone who helps you put your clothes on and helps you shower. It’s not easy to allow someone with such personal tasks.
I do, however, enjoy being alone with my thoughts whenever I get the rare opportunity to do so. There are few things I enjoy more than watching TV with my bedroom door closed or reading a book on my iPad using Bookshare. Assistive technology such as Bookshare allows me to read books independently. I have access to thousands of books at the click of a button. Nobody can criticize my choice to watch Big Bang Theory on repeat or read Murder On The Orient Express or read articles about Major League Baseball, The Pittsburgh Penguins, or history when I am by myself. It is refreshing not to have somebody question me about every mundane decision.
During my first year of college, I decided what I wanted to eat for lunch one day. I chose to have a grilled cheese with butternut squash soup. My PCA at the time wondered why I liked this. The person next to me was eating two big bowls of frozen yogurt, and I politely pointed out that nobody was asking him why he liked it or hadn’t chosen a more nutritious lunch. I was so embarrassed that I never ordered grilled cheese and soup again. It shouldn’t have been my PCA’s business what I ate for lunch that day. I was 19-years-old and could eat whatever I pleased. I felt infantilized that day. I wasn’t five years old and learning about healthy eating for the first time.
Loneliness can be less of a concern for disabled people like myself who require hands on care rather than a profound and unfulfilled emotional and spiritual need for isolation. While some disabled people require a great deal of assistance and care, others may require less assistance than we or others believe. Some of us have to ask to be left alone. Some caregivers are scared to let a disabled person be alone. I had a PCA in the past who didn’t like it if I was away from her. Disabled people are allowed to desire solitude and to make their own decisions whenever they wish.