It’s that time a year again. Another Labor Day is coming, a time when I have tended, for most of my life, to reflect upon my own reflection, to look at myself the way that others see me, to explore the realities of disease, hope, disappointment, joy, and even identity. If you remember the long-running Jerry Lewis Labor Day Telethon for MDA, then the reason for my seasonal introspection will begin to unfold. This nationally distributed poster from the late 1970s may help too:
Back in the Day
My motorneuron disease (SMA) falls under the umbrella of the Muscular Dystrophy Association, an association founded in 1950 to bring attention to 40 different neuromuscular diseases, most of which affect children. The Association also raises donations to assist those affected by the diseases and to fund scientific research for cures. In 1980 and 1982, I was the official “Poster Child” for my local chapter of MDA, traveling throughout the state of New Hampshire for events and fundraisers.
The climax of my duties was to appear on our local cutaways of the Jerry Lewis Labor Day Telethon. For those of you who don’t remember, this long-running telethon was broadcast live on television stations across the country for over 21 hours, from Sunday through Labor Day itself. During my time as Poster Child, the Telethon was very popular and successful, with WMUR in Manchester putting up a temporary studio at the Sheraton-Wayfarer Hotel for our cutaways, about 10 minutes every hour. I well remember the bright lights and cameras, the countdown cues from people wearing headsets whenever it was my turn to be “On Air.” Little, blonde, dimpled me, sitting in my manual wheelchair, would then look into the camera, speak into the microphone, and tell people to help fight MD.
That’s a lot of attention on a little girl! Random people out in public somewhere would come up to me and say that they saw me on the Telethon. I was the center of attention throughout the year at various fundraisers as well. With either one of my parents, my sister, or the whole family, I would attend bowl-a-thons, dance-a-thons, skate-a-thons (rollerskating, mind you, when rollerskating rinks still existed), and rock-a-thons (where people would rock in rocking chairs for as long as they could). Smiling strangers would come up to me, sometimes with gifts, teenaged participants would crowd around me, and local newspaper photographers would take my picture as I posed with this person or that group. I would be smiling so long and so often that cheek-ache became a familiar sensation of childhood.
My “job” as a kid seemed to have been to garner attention, to have eyes upon me, to elicit a kind of affectionate concern, sympathy, and generosity. And I was very good at it.
Maybe I still am.
The title “Poster Child” was eventually dropped by MDA and replaced by “Patient Ambassador.” Probably with good reason, as there seems to be a negative association with the word. There have been times, indeed, when I have felt like a poster child — a poster child for disability, a poster child for “it could be worse,” or, more so lately, a poster child for “how to find joy in the midst of suffering. ” People will see me, smiling in my wheelchair, in person or in pictures or videos, or they will hold an image of me as they hear or read my words on radio or in print, and they will think certain things about me. Even though this is natural — we humans do it all of the time, for better or for worse — I can’t help feeling like I’m still a kind of poster child, representing something bigger than myself. Whether I want to or not.
I’ve been called an inspiration since I was a very little girl. A priest once told me that I’m a “Saint Maker” — someone who causes people to be kinder, gentler, and more loving. This is all good. But what does it mean? Throughout my life, I have felt other people’s projections and expectations upon me, just by simply being. I wouldn’t really need to say a word in order to inspire or cause other people to be nicer or holier. In fact, I wasn’t very talkative at all at those MDA events, but rather shy. It was not my wisdom or talent that inspired others. It was my body: the diseased and crippled body that I could do nothing about and the smiling personality that I was also merely born with.
Although I’m no longer a child, although I have grown in real wisdom, which I am able to share through my real talent for words, I still feel like an image sometimes. There’s no sense in fighting it, of course. I’ve actually discovered that, by working with my image, I can use it to garner something that I do want: attention from an audience that I can maybe help by influencing them toward the good, the true, and the beautiful. However, even if my book (or books) became wildly successful, I would question. I would wonder. Are people really seeing me, are people really hearing what I have to say? Or are they, like in my MDA days, being convinced by a one-dimensional image, designed by someone other than me, to manipulate their response?
— Am I God’s Poster Child, fulfilling my role by simply showing up?
Hmm … I’m not sure about that thought.
But … is that maybe what all of us are?
© 2021 Christina Chase
Although crippled by disease, I'm fully alive in love. I write about the terrible beauty and sacred wonder of life, while living with physical disability and severe dependency. A revert to the Catholic faith through atheism, I'm not afraid to ask life's big questions. I explore what it means to be fully human through my weekly blog and have written a book: It's Good to Be Here, published by Sophia Institute Press.