I’m going to take you through a day in my life. It was a day not long ago when I was by myself in public at the University of Southern California (USC).
I woke up around 8:30 a.m. as usual, and my morning caregiver got me ready. I got into my Access paratransit vehicle and I was off to USC.
I went to the bookstore to purchase some things, but as I was shopping, I dropped some items due to the fact that I am in a wheelchair. I spent two hours in the bookstore because it takes me a little while to do everything.
After that, I went to an event where we watched a wonderful film about a food critic. During the film, I was so excited that because of my cerebral palsy (CP) and spasticity, my feet slipped off the footrests of my wheelchair. As I was trying to lift my foot up, my shoe and the books I use for side support fell off.
I also have neuromuscular scoliosis of the lumbar spine, which meant I was leaning to the right throughout the rest of the film, and since I did not have any caregivers that day, I had to rely on the help of the professor and my peers. That was a real struggle because they did not know how to help someone with a physical disability. But they got it done and I went on my merry way. After the film and some pizza, my books fell off again, and I needed help to put them back in.
Then I went to the USC Village to get some food. I was never taught to read in elementary school, and I wanted to go to this restaurant that had seafood. I went into several different restaurants trying to figure out where in the world the one I was trying to get to was. When I finally got there, I needed help reading the menu. Someone was able to read it to me and I was able to get my food.
But I realized that in that moment, after a crazy day of trying to navigate the world by myself, the world was not designed for people with physical disabilities. I had to cross the street and seek help because I could not see well enough to read the signs or find the curb ramp.
It made me a little upset to realize that, unfortunately, I will never be fully independent, because the world was designed for people who can read and see. Maybe the world — or at least the U.S. — is accessible for people with mobility impairments, such as people in wheelchairs, but in my opinion, it is not designed for people like me who have multiple disabilities.
I wish there were devices for people who cannot see or read that would give them audio feedback for signs that tell us what restaurant we’re in front of or when to cross the sidewalk. I also wish the curb ramps leading from the sidewalk to the crosswalk had tactile pavement, as they are required to in places such as Japan.
This is just an example of a day in my life. Yes, it is true that I did not request my caregiver on that particular day, but if the world was a little more accessible, it wouldn’t be as much of a problem. Sometimes I don’t want a caregiver with me because I want to live my life on my own terms and not have a shadow following me. I like to be independent as much as possible, but the harsh reality is that I will never be fully physically independent.
This column might come off as an ungrateful rant or a pity story, but I just want you to see the reality of life with CP and how, sometimes, we try to live as normal a life as we can, but certain things just won’t work normally for us. The reason I wrote this is to draw attention to my harsh reality and to explain what I go through daily.
Note: Cerebral Palsy News Today is strictly a news and information website about the disorder. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Cerebral Palsy News Today or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to cerebral palsy.
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