March 25 is National Cerebral Palsy Awareness Day. I’ve been thinking a lot about what that means as somebody who has had to be aware of CP every day of my life for the past 25 years. How do I talk about awareness, and what does it mean to me?
There isn’t a day of my life, an hour, a minute, or even a second where I am not aware of CP. I am a full-time wheelchair user, and I need help to do a lot of the things most people take for granted. I am aware of CP in the way it affects my life from the moment I wake up to the moment I go to bed. I am aware of it every time I’m late because a caregiver missed their shift, every time I can’t use Metro because the elevators are out, and every time I can’t get into a building because there is no ramp. I’m aware of it every time I look at my amazing friends who come into my life because of our shared experience of disability. I’m aware of it every time my siblings tell me that having me in their life has encouraged them to think differently about what it means to be a person with a disability. I’m aware of it every time I have the opportunity to talk to someone younger than me with cerebral palsy, and let them know even though life with CP can be complicated, it can also be amazing.
So for me, on CP Awareness Day, the question becomes, “what do I want the rest of the world to be aware of when it comes to CP?” “What do I want everyone else to know about the condition that has affected my life?” I’ve thought a lot about this, and I’ve come up with five things I feel are really important for everyone to understand on CP Awareness Day.
- For me personally, living with CP is hard, but I wouldn’t change it for anything: I’m not going to pretend that being a person with a disability doesn’t come with any challenges, of course it does, especially since we still live in a world that is far from fully accessible, but the truth is even though it’s difficult, I’m super proud to be who I am! My disability is part of me, I can’t change that, and I honestly don’t think I would ever want to. Disability changes the way I experience the world around me. I may have to go in different entrances and put up with a lot of the frustrations that come with needing help to do basic things like take a shower or get in bed, but having CP has also given me a lot of good things too. Because of my disability, I have met some of my closest friends, and had some of my coolest life experiences. I can honestly say I don’t think I ever would have gone to Leeds, England to study disability studies had it not been for my CP. I experience the world differently, but it gives me a unique perspective, and over the years I’ve learned to be proud to be different. I would never say having CP is easy, but it’s an important part of who I am.
- My disability is an important part of my identity, but it doesn’t completely define me: As I said before I’m super proud to be a person with a disability, and it has definitely shaped my life experiences, but it doesn’t completely define me. I have hobbies, interests, and talents that have absolutely nothing to do with my cerebral palsy. I love to write, music is one of my favorite things in the world, and I’m a huge fan of a good selfie. In high school I was a radio DJ, I like to ski, and I’m really into fashion. I certainly have a passion for disability rights, but that’s just one facet of who I am. CP is just one of the many things that make me, well, me. I don’t want every conversation I ever have to revolve around my disability. Ask me about my favorite songs, what I like to watch on Netflix, or my favorite type of sushi! I want you to acknowledge my disability, and understand that it’s an important part of me, but don’t make it everything!
- Cerebral palsy is not one-size-fits-all: I have CP and I am a full-time wheelchair user. One of my coworkers, and good friend, walks without any mobility device. CP looks different for everyone, and because of that no two people experience living with CP in the same way. What works for me may not work for another person with CP. It’s super important to remember this when thinking and talking about CP because one person’s experience might be vastly different from someone else’s, and it’s important to realize there’s no magic answer to questions of what’s best when it comes to living with CP, it’s really all about what works for you!
- Mentorship has been super important in my life: I’m the only person in my family with cerebral palsy, which means that my parents and siblings are experiencing all of the things I experience for the first time too. Sometimes they don’t know what to tell me when I experience prejudice or discrimination, or even when I just can’t figure out the best way to hold a coffee cup while driving my power chair! Some of the most important relationships I’ve had in my life have been with older people who also have CP, and other disabilities and are willing to give me advice about how to approach experiences my parents don’t understand. These are the people I went to when I wanted to go away to college, study abroad, and even start working here at UCP. I also love being a mentor. I love meeting younger kids with cerebral palsy, and other disabilities, and getting to tell them the things I wish I had heard growing up. The Internet is amazing because it gives us the ability to connect in ways we were never able to before, and it means that no one has to go through life alone.
- I want to change the world, not myself: Advocacy is super important in my life. I am so grateful to the advocates who came before me and fought for things like the ADA and IDEA. I feel a pang of gratitude every time I go down a ramp, use an elevator, or see an accessible restroom, but I also know the fight is far from over. I’m proud of who I am, and I want to live in a world where everyone has equal opportunities, whether or not they have a disability, and so I’m an advocate! I fight for the changes I want to see in the world, and I fight to make sure every single person has the opportunity to live a life without limits!