As I’m getting older, I find myself slowing down because of my cerebral palsy – getting tired quickly, and I’m not too fond of this about myself. In my mid-40s, I feel like my body is in its mid-80s on some days, but that is what a person’s life is like when you have cerebral palsy. I have pushed myself my whole life to enjoy life and not feel left out, and, at times, I over-push myself. The result can be that I end up injuring myself, which, in turn, puts me in a place where I feel left out.
Growing up, I felt so behind my peers because of my disability. When I tried to keep up with my peers, I would put myself in a place that would make me so tired that I ended up hurting myself; this made me fall behind more. Doing this to myself led me to put my life on hold because I wasn’t physically or mentally ready to move on with my life. I don’t know why I continue to repeat this behavior, but I need to teach myself to slow down, ignore and change the negative thoughts while I go at my own pace – which means listening to my body.
Understanding and meeting our needs is all about listening to our bodies. When my body says I need to slow down, my mind tells me I’m giving up. This is not true, and I’m old enough/intelligent enough to know I should listen to my body. By listening to my body, I’m meeting my needs because it tells me I need to slow down to give my body some love and care. My mind says I’m missing out on life if I slow down. My mind has always “won” regarding my whole being.
I have a personal care assistant (PCA) who comes in a few days a week, so I can take some of the pressure off me and have more energy for other things. My ego initially felt hurt when I had a PCA; I had just moved to an apartment and wanted to be fully independent while doing everything alone. My mind told me I had given up some independence because I had a PCA. However, I quickly learned that to be fully independent; I must ask for help and take days to rest. Part of me still doesn’t like this idea because my mind still says I’m giving up by having support and days of rest.
I need to start changing my thought pattern by wrapping my mind around the fact that I need to slow down and ask for more help; if I don’t, I will lose my independence and end up depending on people more than I would like.
Understanding and meeting our needs as a person with a disability are about accepting oneself as a whole. Taking who we are as a person with a disability is challenging because the world doesn’t see disabilities as the “NORM.” At least for me, there has always been some pressure within as I feel like I’m not part of the “NORM” Growing up, it wasn’t like it is today: Most people in today’s world are all about being proud/embracing their uniqueness. So many communities are open to being proud/embracing their identity that social media picks up on this and makes a big deal of their identities and diversity. However, when it comes to disabilities, we don’t get as much social media acknowledgment as I believe we should.
Not getting the right kind of acknowledgment can be tough on a person and, in turn, make them feel unworthy of fitting in. That’s why it’s hard for me to slow down in some ways, and I have gotten over my shame of being different and accepted it. Another way I haven’t achieved this ultimately is when it comes to physical disabilities. There is still a stigmatism of what a person with a physical disability looks like on the outside that completely omits who they are on the inside.
When people see me as less than a person, I feel ashamed of who I am. In today’s world, when just about every group/community gets to look past their labels, the disability community still suffers from a label because the world can’t see past what the eyes see.