First, I need to acknowledge that I am not the first person with a disability to write about the problems related to telethons and poster children or what is now called "Inspiration Porn." In fact, several other HuffPost bloggers have written on how they feel about being someone else's inspiration. I might, however, be the first person to examine the impact on my own life of being used as an inspiration tool.
It started in preschool. I was the kid chosen to sit on my principal's lap as he talked about the benefits of coming to my school. There is video evidence of my debut. According to several people, I stole the show. I've also been a favorite as a test patient at PT conferences. I remember doing that, as a small child. I was also in an adaptive equipment magazine, as a model.
By high school, there was a full story on me in the K-12 magazine of my local newspaper, which focused on me and my use of assistive technology, because I had won the 2005 Yes I Can Award. That led to more opportunities to be the center of attention.
In college, one of my first-year professors found out about my high school newspaper column, and then took most of one class period to have a personal discussion with me in front of the entire class and let me answer their questions. I never could find that in the class syllabus.
I was invited to speak at the NC Council on Exceptional Children the following year. I inspired a crowd of 250 people that day. Most poster children stop when they stop being cute. I guess I must still have some cute appeal left, because even now that I have a full beard, and look my age, I still have opportunity to be a non-paid spokesperson for a multitude of organizations. While I am always honored and I like to try to control the message, having to be so inspiring all the time has had its consequences.
The first consequence I already mentioned. I'm never paid, despite the fact that it takes my time, energy, travel expenses, preparation -- and sometimes I have to dress up or give a speech about why the organization I am representing is important to the community. There are far worse consequences I've experienced.
I don't always know what real praise is from some people. When I was younger, some people thought everything I did, no matter how poorly or well done, was great and wonderful. Who knew that finishing sixth in a competition designed to honor the top five would merit a rules change, so that I would get a limo ride? I'm also pretty sure that I got some special treatment from the vice principal -- and I get free stuff. Until recently, people who used wheelchairs and their families got to skip to the head of the line at Disney.
I saved the worst consequence for last. Since way back, I've battled perfectionism. I never allowed myself to make a B in school. I had straight As in high school. I spent most of my time keeping up with the homework. I would start it when I got home and finish at bedtime or sometimes the next morning. These behaviors continued into my college years. One professor still calls me the "King of Drafts," because of my openness to editing things over and over, so they would be perfect.
My perfectionism finally caught up with me in my first semester, when I took journalism. I was so hyper-focused on doing well, that I did little else. I didn't know how to shut this off. I didn't go outside or even open the blinds. Some nights I didn't sleep. Eventually, this led to several episodes of anxiety and depression and about a year and a half of weekly counseling.
I'm proud to say that I am recovering. I'll probably have to monitor myself, because I've been such a high achiever for so long.
I've noticed a big increase in the amount of news stories about people overcoming their disabilities, which, if you think about it, is really impossible by definition. This practice of overachieving and the media's coverage of them is so common that the disability community has dubbed them "Supercrips." Supercrip: The belief that living with a disability is tragic and being able to accomplish any feat, regardless of level of difficulty, is heroic. The implication is that one's worth is determined by what they do "in spite of their disability," rather than what they do "in spite of being human."
It's a personal conundrum. On one hand, I like to see myself as a young leader within the disability field, so I like to use what I have to inspire people and hopefully foster change. I wouldn't have been given these same opportunities, most likely, if I weren't disabled. On the other hand, having to be a constant inspiration can be exhausting and require years of therapy, which is hard to pay for when you inspire for free.
That's how I roll.