As I’m getting older, I find myself slowing down because of my cerebral palsy getting tired, and I’m not too fond of this about myself. In my mid-40s, there are days I feel like my body is in its mid-80s, but then that is what a person’s life is like when you have cerebral palsy. I have pushed myself my whole life to be able to enjoy life and not feel left out in life, and at times, I over-push myself and end up injuring myself, which in turn puts me where I put myself in a place where I left out.
Growing up, I felt so behind my peers because of my disability that when I tried to be on the same take as 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 keep doing this to myself, but I need to teach myself how to slow down doing this to myself.
Understanding and meeting our needs is all about listening to our bodies. When my body says I need to slow down, my mind says I’m giving up, and I’m old and intelligent enough to know I should listen to my body. By listening to my body, I’m meeting my needs because it’s saying 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, and my mind has always won out regarding my whole being.
I have a PCA that comes in a few days a week because I can take some of the pressure off me and have more energy for other things. My ego felt hurt when I had a PCA, and I gave up my freedom and had just gotten my space because I had moved on my own and wanted to be fully independent while doing everything on my own.
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 having support and days of rest. I need to start wrapping my mind around the fact that I need to slow down and ask for more help because 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 who we are. Taking who we are as a person with a disability is challenging because the world doesn’t see disabilities as the “NOR.” At least for m,e there has always been some pressure; within feel like I’m not part of the “NOR” Growing up, it wasn’t like it is today when people are all about being proud/embracing their uniqueness. Still, so many communities are open to being proud/embracing their identity that social media picks up and makes a big deal of their identity. However, when it comes to disabilities, we don’t get as much social media acknowledgment as we should.
Not getting the right kind of acknowledgment can be tough on a person, and interns make them not feel worth being a part of anything. That’s why it’s hard for me to slow down in some ways. I have gotten over the shame of being different and accepted it. However, in another way, I haven’t because when it still comes to physical disabilities, there is still astigmatism of what a person with a physical disability looks like on the outside and does not see what they are 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 is still why the disability community gets seen as just a label because the world can’t see past what the eyes see.