Why Cerebral Palsy Can Feel Like A Full Time Job:

Life with Cerebral Palsy requires meticulous attention to detail and planning. For example, today I had to email my physiatrist to ask about a letter of medical necessity, and I had to wait on hold with my primary care physician’s office to check the status of a prescription. I waited on hold for 20 minutes before hanging up.

If I’m going somewhere where I’ve never been, I call ahead to make sure it is accessible. If I plan to take my power wheelchair somewhere, I have to make sure that my wheelchair van has gas in it, and that someone can drive me where I want to go. I consider myself lucky to have a wheelchair accessible van available to me. If I didn’t I would be reliant on paratransit.

While I have never ridden paratransit Kathleen Downes describes riding them as “Paratransit buses, like the “short buses” I rode in high school, are known for being only vaguely reliable, and they usually offer their passengers very large time windows, as though they have nothing better to do all day than wait for buses and leave home at 7:03 for a job that starts at 9am in an office two blocks away.” From my brief experience trying to understand my rural area, you must schedule a paratransit ride in advance. Being invited to see a movie late in the afternoon doesn’t really work out when you have to rely on someone to give you a ride.

Spontaneity doesn’t really exist when you have CP. I have to make sure I have enough medications. I have to schedule physical therapy sessions weeks in advance, and I have to make sure a family member or PCA can take me to school or the supermarket when I need to go. I can’t just run out to get milk or eggs at the last minute.

In a capitalist society like America’s, your value as a person is frequently determined by how much you can do. I’ve discovered that, as a result of this thinking that many people appear to subscribe to, individuals who are at home more often due to disability never meet the productivity expectations that many people have for an adult. I want to work so badly but it’s a challenge to find a job that will meet my needs. I am hoping to start working from home soon. Oftentimes, people don’t want to hire me once they find out I have a disability. However, being unemployed doesn’t make me worthless.

I wish everyone understood just how complex life with a disability can be at times. Next time you see me in public, realize that even if it looks like I’m going slow, I’m just doing the best that I can. If you believe that a disabled person should be “doing something,” I want to remind you that we are doing the best we can with what we’ve been dealt with and, most importantly, to be considerate. After all, we are only human.

Source:

Downes, Kathleen A. “Hey You, My Name Is Not Wheelchair.” The Squeaky Wheelchair , 31 Jan. 2015, http://www.thesqueakywheelchairblog.com/2015/01/hey-you-my-name-is-not-wheelchair.html.

Leave a Reply