CW: Fluid Restriction & Ableism
July is disability pride month. Disability pride for me, is something that I haven’t felt all of my life. As a child, it was hard to accept that my disability does limit me in some ways.
Sometimes, it feels like I am at a weird place in life because of cerebral palsy. A nondisabled 24-year-old doesn’t usually require help bathing or cooking meals. They’re usually not worried about if they’ll be able to join their friends at a new restaurant, or bar.
Many people fear getting older because it might mean that they will lose their independence. People are often reluctant to give up their driver’s licenses or move out of their homes. For disabled people of all ages, independence is challenging.
Imagine what it would be like to have strangers help you use the restroom or bathe. For many disabled people, this is a reality of their lives. It’s always awkward when I have to hire a new PCA.
I wish I could do mundane tasks like shoveling snow, changing a lightbulb, or raking leaves. Not because, it’s enjoyable but because I cannot do these things.
My disability means I am unable to drive. I remember the jealousy I felt when my peers began to get their driver’s licenses. Sometimes, I wish I could go grocery shopping alone or visit family members for a weekend.
Life with cerebral palsy requires meticulous planning and preparation. Everything is affected by cerebral palsy in some way. The lack of spontaneity in my life often leaves me frustrated.
For many adults my age, life revolves around friends and socializing. However, it is difficult to meet new people when you can’t drive or get into their houses. Finding places to socialize is also challenging. Many bars, restaurants, and music venues are not accessible.
Personal hygiene is another concern. Most bathrooms aren’t accessible to me, which means limiting my fluid intake. Public bathrooms are also challenging for me to use.
Unfortunately, as I’ve gotten older I’ve begun to wonder if the problem isn’t cerebral palsy, or ableism. The problem might be me. As an adult I’ve struggled with self-doubt.
Living with cerebral palsy makes me feel like I’m constantly questioning myself. When an insurance denial notice arrives in the mail for example, I often question whether or not I should appeal. Is it worth fighting for something that they’ll probably deny anyway?
I often wonder whether or not I really need certain accommodations as well. At Greenfield Community College, I’ve never received all of the accommodations I am entitled to. I am tired of fighting for things I need.
I also wonder if I’ll ever have a romantic relationship. Will people find someone who has cerebral palsy attractive, especially when I don’t consider myself attractive? The thought of being in an intimate relationship with somebody is scary.
Having a physical disability means that I have to allow people to assist me with my personal care. I don’t particularly enjoy the thought of having my partner help me use the bathroom or get dressed. More than anything, however, I wonder if my partner would see me as a burden. The thought of being alone for the rest of my life saddens me.
Life with a disability is hard sometimes. Disabled people face numerous challenges every day. We can have bad days, take risks, experience joy, and have fun.