Lately, I’ve been thinking about my childhood. Growing up, I had big dreams. I had dreams of going into the medical field. I wanted to help people like me. I have been fascinated by the human body since childhood.
As a child, most of the time I felt like I belonged in the world. Inclusion was part of my life. I attended public schools, and participated in a variety of extracurricular activities.
As I grew up, I began to realize that some people didn’t have many expectations for me. My family and friends encouraged me to follow my dreams.
I was determined not to let CP stop me from achieving my goals. I quickly learned that this was unrealistic. There’s nothing in my life that my disability doesn’t affect. As much as I wanted to become a surgeon, it wasn’t possible due to my lack of fine motor skills.
Physically, getting older has been difficult. Cerebral Palsy does not progress in the traditional sense. Yet, it does change with age. Once I reached adolescence, I no longer had the same level of movement and function.
The past few months have been hard for me. I’ve been experiencing increased spasticity, particularly in my lower extremities. Spasticity is uncomfortable, and frustrating.
These days I can’t walk long distances and experience more involuntary movements, particularly in my legs. Besides being annoying, the involuntary movements make activities of daily living such as showering and toileting more challenging.
I am due to receive a new walker soon. My PT has already written the letter of medical necessity and submitted it to my insurance company. I then have to wait for the health insurance company to approve the request.
While I am grateful that my PT is willing to help me get what I need, it is frustrating to know that my insurance likely won’t cover it immediately. Unfortunately the appeal process is also lengthy. However, because my equipment costs thousands of dollars, it is untenable for me to pay for it out of pocket.
It is baffling to me that I have to go through a lengthy process to continue being able to walk. Sometimes, I wish the health insurance company could spend a day in my shoes. For me, my walker and wheelchair are more than just medical equipment. Without my equipment, I’d be stuck in bed all day.
At 24, I am currently unemployed and looking for work. Most people my age have already worked for several years. Unfortunately, I have only had one paid work experience, writing for a magazine.
The U.S. Bureau of Labor Statistics found that 21.3 percent of disabled people were employed last year, up from 19.1 percent in 2021. However, the unemployment rate for disabled people is still triple that of non-disabled people.
Living with Cerebral Palsy is hard, no matter how old you are Disabled children grow up. Adulthood shouldn’t mean that these same children are forgotten about.
Source:
Ceron, Ella. “Remote Work Helps Push Disabled Employment to a Record High of 21%. but the Gain Is Imperiled by Return to the Office Mandates.” Fortune, Fortune Media Group Holdings, 25 Feb. 2023, https://fortune.com/2023/02/24/remote-work-disabled-employment-record-high-remote-work-office-mandates/.