Being a Poster Child

I was an adorable child. Straight up, I was SUPER cute. Here’s me (on the right, my sister’s on the left) when I was around four:

Right?! I was also articulate, intelligent, sociable, personable.

In other words, I was the perfect poster child.

A poster child, to me, is a child with a disability who is “shown off” 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’s face on a poster, but it’s certainly not the only way.

I want to be clear: I loved being a poster child (though I didn’t know the term at the time). Loved it wholeheartedly.

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’s a national broadcast that features tons of star-studded performances, massive checks being delivered, etc. There are also cutaways to local broadcasts throughout.

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 I was going to be on TV. The interview itself was fairly short – less than five minutes – and straightforward. They asked about my favorite class in school, my hobbies, my family. They asked what I’d like to say to those watching at home. What their donation could do to improve my life.

I’ll 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’t rung that much the whole weekend.

After that interview, I did several more “poster child” 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’t and it was meant to benefit me.) I was interviewed again, for several years in a row, on the Telethon.

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?

I didn’t 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’m pretty sure my mom told them not to pick me; we wouldn’t have had anywhere near the money or time to do it anyway.) I thought, “I’m better at this than they are. I’m funny and people like me and I’m so cute.”

Eventually, around late middle school, they stopped inviting me to “whatever-a-thons”. They stopped asking me to interview on the Telethon. It made sense. I wasn’t an adorable kid anymore. I was an awkward teenager. The money’s in the little kids.

I was a little hurt, but I wasn’t that upset. I understood. And besides, I wanted MDA to get as much money as they could, with or without me.

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, the best week of my year.

So I wanted them to get money. And I wanted to help when I could, and stop when I couldn’t.

It wasn’t until probably college that I figured out there were really problematic aspects to the concept of “poster children”. The concept feels very similar to inspiration porn to me (see last week’s excellent discussion post on that topic), only instead of some fictional character, I’m the one starring.

(Oh man, I’m a porn star. NOBODY TELL MY MOTHER.)

As a poster child, your worth is in your disability. You’re there to inspire the able-bodied audience. To inspire pity, sadness, fear, guilt, etc. You’re the poor, poor cripple whose life would be that much more horrible without their monetary contribution.

I feel like there should be a moral here. That using “poster children” is wrong. And it is. It’s icky and condescending and othering and dangerous, just like inspiration porn is. But I almost don’t feel qualified to make that judgment because I still look back on my own experiences fondly.

And yet I know the things I enjoyed were largely lies. I wasn’t important – my disability was. People didn’t like me – they pitied me. I wasn’t the center of attention – my chair was. It wasn’t really about my benefit (though I did benefit in some ways) – it was about benefitting the organization.

I have a Master’s in nonprofit management now, so I understand even better the financial incentive behind using poster children. But I also now understand that it is WRONG.

Surely, surely, there’s a way children with disabilities who want to be involved can actually be involved, not used. That they as whole humans can contribute to organizations they believe in, not be commodified and sold to the able-bodied.

I think the answer here is simple, as it tends to be. It all boils down to treating with children with disabilities as whole people with dignity, agency, faults, etc.

Simple, and yet, so rarely done.