July is Disability Pride Month. It can be difficult to find pride in your disability when society makes it so hard to exist.
Since the day I was born, my body has not belonged to me. Instead, it has belonged to a seemingly endless catalog of doctors, therapists, and personal care assistants. It isn’t easy to feel comfortable in your own body when you are constantly being looked at and touched by people helping you or by people who have to take measurements of the range of motion in your joints.
Kathleen Downes recently wrote a wonderful blog post about care recipient burnout. An internet search about caregiver burnout will bring up thousands of results. Burnout in caregivers is characterized by physical, emotional, and mental exhaustion. Caregiver burnout may also be accompanied by a shift in attitude, according to Cleveland Clinic.
However, rarely do people talk about how exhausting it is to need help with everyday activities. Imagine hiring a perfect stranger to help you get dressed, showered, and use the restroom. For many disabled people, this is a reality of their lives. Sometimes, I wonder what it would be like to shower and get dressed with complete privacy.
Needing assistance with such personal tasks has made my relationship with my body incredibly complicated. My body feels like it is on public display for therapists, doctors, and PCAs to do whatever they please as long as they deem it to be helpful by their standards.
The thought of being intimate with someone is frightening to me. I don’t particularly enjoy the thought of having my partner help me use the bathroom or get dressed. More than anything, however I wonder if my partner would see me as a burden.
Finding a caregiver can feel like an insurmountable challenge. I had three different PCAs during three semesters of college. Unreliable PCAs hindered my experience in college. My mother or a friend often had to rearrange their schedules because my PCAs didn’t show up.
Growing up, I assumed my adulthood wouldn’t look that different from my peers. I had high expectations for myself. I knew I wanted to go to college to get my bachelor’s degree and therefore increase my chances of finding employment. As a child, I had no idea just how difficult it is to figure out adulthood as someone living with a physical disability.
I shouldn’t fear applying for employment because of my CP, but I do. I have been rejected by Stop & Shop, McDonald’s, and Wendy’s, among many other employers. In some cases, employers have refused to interview me after I have told them I have Cerebral Palsy.
At 23 years old I’ve never had a job. It is hard for me to see my younger sibling working part-time. I should be able to find work, and it is frustrating that I can’t.
Living with Cerebral Palsy is a challenge, but I no longer feel resentful about it. It is part of who I am, and there is nothing wrong with being disabled.
Life with a disability is hard sometimes. Disabled people face numerous challenges every day. We can have bad days, take risks, experience joy, and have fun.
“Caregiver Burnout; Causes, Symptoms & Prevention.” Cleveland Clinic, 13 Jan. 2019, my.clevelandclinic.org/health/diseases/9225-caregiver-burnout.
Downes, Kathleen “When Are We Going to Talk about Care Recipient Burnout?” The Squeaky Wheelchair , 1 July 2023, http://www.thesqueakywheelchairblog.com/2023/07/when-are-we-going-to-talk-about-care.html?m=1.