I love my disabled life, and I am grateful for the community it has allowed me to be a part of. I have had the opportunity to meet wonderful doctors, therapists, and PCAs. Social media connected me to many disabled people with whom I share an unlikely bond. People who have Cerebral Palsy and other disabilities know what it is like to live a disabled life.
For the past several years, I have been struggling with the mental aspects of having Cerebral Palsy. This has led to me developing depression and anxiety. Living with Cerebral Palsy is hard at times. It is difficult to need help taking a shower and using the bathroom. Hiring strangers as PCAs can feel uncomfortable. Someone who is a stranger has to help me use the bathroom.
Sometimes, I feel like my body is on display. It is challenging to be 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.
I am tired of having to fight for everything. I received a new power wheelchair last year, and the process was grueling. I had to appeal my insurance company’s decision twice. It was incredibly frustrating to realize that my insurance company didn’t think I needed a new power wheelchair.
The people who make these decisions have never met me or even spoken to me on the phone. The process is dehumanizing. Insurance companies don’t see people as human beings. After receiving approval for the chair, I created a GoFundMe page for the iLevel technology on my chair. While I am eternally grateful that my community raised money for me, I was also saddened that insurance wouldn’t pay for iLevel. They determined that I didn’t need iLevel for medical reasons. My desire for independence wasn’t enough for my insurance to approve the seat elevator.
Perhaps what worries me the most is that I’ll never be treated as equal compared to non-disabled people. I’ve been looking for work since 2019 and have been unsuccessful. As soon as people find out that I have Cerebral Palsy, they no longer want to hire me. It hurts when people are interested in hiring me until they find out that I am disabled. I can’t help the fact that I have CP. I also wonder if I’ll be able to have a family and get married one day. I wonder if people think my disability would make me a terrible spouse and mother. The thought of being alone for the rest of my life saddens me.
I may not be able to marry somebody either without losing my benefits. Some disabled people who rely on programs such as Medicaid and Supplemental Security Income or SSI still cannot marry without their benefits being impacted or taken away entirely. I hope that I’ll be able to get married one day just like a non-disabled person would.
Disability is hard. I love my disabled life. However, it is hardly an ideal love. It’s a love in need of improvement. With time, I will slowly learn to embrace my life with Cerebral Palsy. I don’t know how long this will take, but I am working on it.
I want to live in a world where everyone is treated equally. Disabled people are the world’s largest minority, and we deserve the same opportunities as anyone else.
Caprino, Kathy. “The World’s Largest Minority Might Surprise You, And How We Can Better Serve Them.” Forbes, Forbes Magazine, 14 Apr. 2016, http://www.forbes.com/sites/kathycaprino/2016/04/14/the-worlds-largest-minority-might-surprise-you-and-how-we-can-better-serve-them/?sh=737aa3ca496f.
Star, Eryn. “Marriage Equality Is Still Not a Reality: Disabled People and the Right to Marry.” Advocacy Monitor, National Council on Independent Living, 14 Nov. 2019, advocacymonitor.com/marriage-equality-is-still-not-a-reality-disabled-people-and-the-right-to-marry/.