One of the hardest emotions I deal with on a daily basis is guilt. Because of my Cerebral Palsy, I require the help of a PCA to get dressed, shower, and use the restroom. While I’ve been fortunate to have many wonderful PCAs, I haven’t been fond of a couple of them over the years.
In my senior year of high school, the woman who was assigned to me often made it seem like I was a burden. If I ever needed anything other than my usual bathroom break or assistance with my lunch, she often made a fuss over helping me. It came to the point where the longer I went in a school day without needing her help, the happier and more relieved I was. I was happy if I could go six hours without needing her help. The last few weeks of school I stopped asking her for help unless it was time for my daily bathroom break. Instead, I would ask my peers or teachers to help me with my backpack or books. Most of the time, people were willing to help me.
I intentionally limited my fluid intake during school so that I’d require less help. This is something that I still do to this day despite having a reliable PCA. He reminds me that it’s okay to have drinks when I feel thirsty. It was a weird feeling at first.
When I started college in 2018, my first PCA was often late. I didn’t like having to worry about whether or not I would be able to make it to school on time. I was an eager student who wanted to make the most of her college education. It was difficult to explain to professors that if I was late, it was often due to someone else being late. She also made my needs feel like they were a burden. It’s not a good feeling when a caregiver makes you feel like a burden. In my first three semesters of college, I went through three PCAs. My mother and a friend often filled in when PCAs didn’t show up. It saddened me when my mother had to miss work. My parents already sacrificed enough of their lives and resources to raise my sibling and I.
Perhaps the biggest reason I feel guilty right now is because I am unemployed. I want to be able to be a taxpaying member of society and have a job like so many non-disabled people do. However, despite my best efforts I am still unemployed. Being unemployed is not enjoyable. I’d much rather be working than sending out résumés to every employer I can think of. It is hard to watch the rejection emails fill up my inbox. It’s even harder to watch people younger than me working at McDonald’s, Wendy’s and Big Y, all of which I was rejected from. Even when I didn’t disclose my disability, I’d still receive rejections. The hardest scenario is when someone is interested in inviting me to interview until I disclose my disability to them.
I’ve felt like a burden on everyone around me since I was born, but I’m working hard to change that mindset. Everyone is worthy, and has something to offer the world. Even if someone can’t contribute in traditional ways, they still are a valuable member of society.
Grace, do not ever feel bad about not having a job yet. Did you see that I said yet. It is not your fault. It is the fault of all the employers who are insensitive, and uneducated. They are missing out of a human being who is so smart. I have been in the workplace for a long time and have seen it myself. Managers have no patience, have no empathy and just want everything done yesterday. Keep working on finding a job Grace and you will succeed. Also, when it comes to your PCA’s, if they huff at you, “ask them what the problem is?” Tell them that they work for you. Don’t let them give you an attitude. Speak up for yourself! You go Grace….I love you with all my heart.
Love you Aunt Rose!