![\"Kayla](\"http:\/\/disabilityinkidlit.com\/dikl\/wp-content\/uploads\/2013\/07\/kayla-whaley-sister.png\")
<\/a><\/p>\nRight?! I was also articulate, intelligent, sociable, personable.<\/p>\n
In other words, I was the perfect poster child.<\/p>\n
A poster child, to me, is a child with a disability who is \u201cshown off\u201d as a way to generate funds, awareness, understanding, more funds. Mostly funds, in my experience. As the name would imply, one way to do this is to put the child\u2019s face on a poster, but it\u2019s certainly not the only way.<\/p>\n
I want to be clear: I loved<\/em> being a poster child (though I didn\u2019t know the term at the time). Loved it wholeheartedly.<\/p>\n You might be familiar with the Jerry Lewis Labor Day MDA Telethon. If not, every year on Labor Day weekend, Jerry Lewis hosts a telethon to help fund the Muscular Dystrophy Association, which is the largest nonprofit in America dealing specifically with Muscular Dystrophy (MD). (My disease, Spinal Muscular Atrophy Type III or SMA, falls under the massive umbrella that is MD.) There\u2019s a national broadcast that features tons of star-studded performances, massive checks being delivered, etc. There are also cutaways to local broadcasts throughout.<\/p>\n One of the first years after we moved to Atlanta, I was invited to be interviewed for the Atlanta Telethon broadcast. It was a big deal. My whole family stayed at the downtown Hilton where they filmed and I got to hang out with a bunch of my friends with MD. Of course, being six or seven, I was mostly thrilled<\/em> I was going to be on TV. The interview itself was fairly short \u2013 less than five minutes \u2013 and straightforward. They asked about my favorite class in school, my hobbies, my family. They asked what I\u2019d like to say to those watching at home. What their donation could do to improve my life.<\/p>\n I\u2019ll never forget that immediately after, the hundreds of phones in the room all started ringing. I swear, it sounded like every single one, and I knew all those people were all calling because of me. The interviewer, a local news anchor, even told me they hadn\u2019t rung that much the whole weekend.<\/p>\n After that interview, I did several more \u201cposter child\u201d events. I went to a kick-a-thons at karate schools. I went to jump-a-thons at preschools. (It did occur to me even at the time that it was strange to be watching all these kids do something I couldn\u2019t and it was meant to benefit me.) I was interviewed again, for several years in a row, on the Telethon.<\/p>\n I loved it. I felt important. I felt liked. I always liked being the center of attention, and how much more central can a kid get than being on local public broadcasting?<\/em><\/p>\n I didn\u2019t actually do as much promotion as a lot of my friends. Several of them were chosen to be ambassadors for the state of Georgia. One is picked each year, and they travel all around the state doing those same kinds of events. I was happy for them, sure, but I was also SO jealous of them. (I\u2019m pretty sure my mom told them not to pick me; we wouldn\u2019t have had anywhere near the money or time to do it anyway.) I thought, \u201cI\u2019m better at this than they are. I\u2019m funny and people like me and I\u2019m so cute.\u201d<\/p>\n Eventually, around late middle school, they stopped inviting me to \u201cwhatever-a-thons\u201d. They stopped asking me to interview on the Telethon. It made sense. I wasn\u2019t an adorable kid anymore. I was an awkward teenager. The money\u2019s in the little kids.<\/p>\n I was a little hurt, but I wasn\u2019t that upset. I understood. And besides, I wanted MDA to get as much money as they could, with or without me.<\/p>\n I want to be clear again: MDA does, I think, a lot of good work. They help provide flu shots, wheelchairs, other assistive tech, research, etc. The thing they did that most affected me directly, though, was hosting an annual MD summer camp. Camp deserves a whole post of its own, but suffice it to say that that one week each summer was always, always<\/em>, the best week of my year.<\/p>\n So I wanted them to get money. And I wanted to help when I could, and stop when I couldn\u2019t.<\/p>\n