I have been reluctantly thrust into advocacy, at times, in my life when I did not choose to be. I do not like speaking about my CP when I am the only physically challenged person in the room. It feels wrong because every physically challenged person’s experience is so different, and my experience is just that: mine. However, I have come to realize maybe it is my own insecurity that makes me feel this way, and nothing more.
I think I was looking at being an advocate from the wrong perspective. I was looking at advocacy as a spotlight that said to other physically challenged people your story has less value than mine, so I shied away from it. It occurs to me that is a narrow way of looking at my advocacy. I have been given a smart brain and the ability to express myself for a reason: to speak for those who cannot.
The day it occurred to me there might be more in my future than just political science work was new power chair delivery and adjustment day in January 2010. For those who do not know what the process is like: I sit in my new chair for hours getting every little detail of it adjusted. The only thing I can equate it to is what it might feel like to get an artificial limb. It makes me jumpy. I must be completely engaged in the CP monster and always it makes me squirm. Everything feels different and to try to articulate to the person fitting me in my new chair all the changes that need to take place, while trying to get comfortable with myself in it is next to impossible. I always rise to the occasion with lots of prayer and encouragement from my chosen family.
I say all of that to set up how I was feeling when my instincts kicked in as strongly as I’d felt them (until that point) A severely physically challenged gentlemen came in with his father to have some work done on his chair. Taking one look at him, my instincts were screaming “that could have been you.” When we were ready to leave, I noticed that the gentlemen wearing a Reba T-shirt. I knew he must have gone to the show the night before, so I threw him a smile and asked about the show. Seeing him light up let me know my decision was the right one.
A few days later, I was getting ready to take my new wheels for a spin out in public, away from the furniture, when I discovered it wouldn’t fit in the van. I started to cry because I was frustrated and scared. A many thousand-dollar chair that’s useless. After I had switched chairs drying my tears, taking a look at my new chair, while not sitting in it, I discovered the problem. The joystick box stuck out four inches more than the chair I was currently using. Once I discovered this, I called my wheelchair provider and they said they could fix it in a few days, so I made the appointment and my chair got fixed.
After my sigh of relief, I came to a decision. I will speak for those in similar positions who cannot. I am willing, able, and ready to advocate. These wheelchair manufactures must know that they cannot build equipment that is not feasible or makes the user stand out more than they already do. My new mission was clear: to advocate for anyone as needed, and in the process advocate for myself as well.