Living with Cerebral Palsy means that I am frequently frustrated. Life with a disability presents challenges daily. Recently, I have been experiencing more chronic pain than usual. For me, pain is one of the most difficult parts of having Cerebral Palsy. It can make getting through the day a challenge. Chronic pain also affects my mood and mental health.
As I’ve grown older, I’ve also experienced functional shifts. All of my life, I have been told that Cerebral Palsy won’t change. While I will never truly understand what it is like to have a progressive condition, CP does change as you grow older. This first happened when I started puberty. Puberty was an extra challenging time as an adolescent with CP.
Changes in my level of function and fatigue led me to decide that I needed a power wheelchair. I was mad for a long time after the chair came. I saw needing it as defeat. It felt like I was giving up my ability to walk. At the time, I didn’t realize how helpful a wheelchair would be. My power wheelchair has allowed me to be more independent.
Most of all, I am frustrated by how society treats those with disabilities. According to the Bureau of Labor Statistics, 19.1 percent of people with disabilities worked in the United States in 2021. In the United States, 80.9% of people with disabilities were unemployed last year. What are disabled people supposed to do all day? I want to work for a living rather than relying on an SSI check.
I’ve filled out hundreds of job applications in the past three years. I am still unemployed. Employers often don’t want to interview me once they find out that I have a disability. Discrimination is supposed to be illegal, but it happens all the time.
I also rely on Medicaid to pay for my PCAs. Unfortunately, Medicaid imposes asset and income limits. In other words, if I made too much money, I could lose Medicaid coverage. Without Medicaid, I wouldn’t be able to work. My PCAs help me with activities of daily living, such as dressing, showering, and toileting. They also assist me with transportation, meal preparation, and shopping. Medicaid needs to remove the prohibitive income and asset limits so that disabled people can work without losing their health insurance.
People are often surprised when I talk about my hopes for the future. They are surprised that I want to work, and get married someday. For a non-disabled adult, these hopes and dreams aren’t unusual. People are encouraged to think about their future from the time they are young. Does society have such low expectations for adults with disabilities that wanting to work and get married is too much to ask for?
Often, people talk down to me as well. People don’t treat me like a 22-year-old. They often speak to me like I am a little kid. Sometimes, people don’t even talk directly to me. Instead, they speak to my non-disabled friend, family member, or personal care assistant. A non-disabled adult would be able to speak for themselves; please don’t assume adults with disabilities can’t.
I want to live in a world where disabled people are treated equally. Disabilities can affect people of any age, race, sexual orientation, and gender. People can also become disabled at any time due to illness, accident, or injury. Disabled people deserve the same opportunities as everybody else!
“Persons with a Disability: Labor Force Characteristics Summary – 2021.” U.S. Bureau of Labor Statistics, U.S. Bureau of Labor Statistics, 24 Feb. 2022, https://www.bls.gov/news.release/disabl.nr0.htm.