Poster Child Has-Been – New Mobility

The following is an excerpt from Johnson-Wright’s forthcoming memoir, The Earthbound Tomboy.

A young Heidi Johnson-Wright inspires potential donors with pitiful tales about the miseries of growing up with juvenile arthritis.
A young Heidi Johnson-Wright inspires potential donors with pitiful tales about the miseries of growing up with juvenile arthritis.

I’m sitting in a wooden chair four feet above the ground. The chair is moving, and in a rather unsteady fashion. My hands are sweating and I’m a nervous wreck. I don’t like traveling in a levitating chair, especially in a narrow stairwell up four flights of stairs. And I really don’t like traveling in a chair held aloft by four strange men in various states of intoxication. As we arrive at the landing between flights two and three, a door flies open unexpectedly and smashes into two of the men, nearly sending all of us tumbling down the stairs in some perverse, real-life version of Chutes and Ladders. I shriek and the sound echoes throughout the stairwell. The men curse, then laugh in relief that no one has fallen to their death.

Finally, we arrive at our destination: a gym in a building in New Sphincter, Ohio. My parents climbed the stairs before I traveled upwards in my low-rent Popemobile, so they are there when I make my grand entrance. I’m less than thrilled to give up my Friday night when I could be in our family room at home, watching some forgettable movie on television. But I feel suddenly giddy, flooded with relief that I have arrived in one piece.

As a teenaged poster girl, Johnson-Wright had a smile calibrated to get those wallets to open up.
As a teenaged poster girl, Johnson-Wright had a smile calibrated to get those wallets to open up.

I am here because I am a poster child — in the literal sense. The Arthritis Foundation in the State of Ohio was adopted by the Fraternal Order of Ferrets as its official charity. For the Foundation, this means a steady stream of cash generated by fundraisers from the organization’s many chapters. For me, this means that I will make many appearances throughout the state as the sad, little face of arthritis. I have prepared a speech for tonight about arthritis, the incurable affliction that devastates lives. What I will say is very personal, because that is what my uncompensated “job” requires. I will tell them about my pain, my devastated joints, my personal struggles — things I should be discussing with a mental health professional instead of a motley crew of semi-functional alcoholics.

Before my speech come the pleasantries. I visit the buffet table with my mom, who places samplings of various Ohio hillbilly cuisine dishes for me on a Chinet plate: Watergate salad made with Cool Whip, a gray-green cabbage roll cooked into submission, potato salad of an unnatural neon-yellow hue. I nibble at the food, taking in the decor: wilting crepe paper streamers, plastic tablecloths, fake-flower centerpieces off-gassing a funky odor. The coolest thing by far is the sparkly vintage disco ball suspended from the ceiling, perhaps a relic of an earlier time when live bands performed for couples doing the twist. Tonight, though, the music is strictly of the pre-recorded country and western variety.

As the evening wears on and the crowd grows increasingly plastered, I develop a strange fascination for the activity approximating dancing of the couples. Some try to adapt ballroom-type moves to lively tunes, then lean on each other during the slow songs. Others stick to 1970s disco moves, often intermingling the hustle and the bump during the same song.

One couple stands out. The husband moves around the edge of the dance floor, progressing via side-to-side or spinning moves. His wife follows behind, struggling to keep up. Their motions are awkward but frenetic. Their reddened faces wear mixed expressions of surprise and determination, as if someone is in possession of their bodies. They’re at the mercy of a mad pied piper that only they can hear, yet they’re resolved to see it through, wherever it may lead.

Finally, it’s time for my speech. A high-ranking Ferret introduces me, and I step to the mic and give my spiel. Some listen with well-intentioned but patronizing smiles, their expressions conveying something like, “Isn’t it sweet that that crippled little girl can talk without pooping her pants?” Others stare in wide-mouthed wonder; the remainder doesn’t seem to register that I’m there at all.

It’s creeping up on 11 p.m. and we have a two-hour drive home. My parents and I are exhausted and ready to leave. It suddenly dawns on me that I now face being carried back down four flights of stairs. Downward movement typically requires less effort for the load bearers, but they’re now three hours drunker. As I’m returning to my hillbilly version of Cleopatra’s litter, I tell them to keep the chair tilted slightly backwards, so I don’t pitch forward out of it. They assure me — “we got you, honey” — as they raise me aloft.

I close my eyes and pray.

The Angelic and Pathetic Dog and Pony Show

The days of telethons and tote boards and sad-eyed tots in wheelchairs are fading. Now money for charities is raised via 5K runs and craft beer tastings and endowments. It’s becoming less socially acceptable to hold kids up as objects of pity. But when I was a kid growing up with juvenile rheumatoid arthritis in 1970s and ’80s, it was a different story.

I don’t recall precisely how my career as a poster child got started. I seem to remember that it was born out of two things: my parents’ volunteer work with the Arthritis Foundation and an article written about me that appeared in the local newspaper. The lengthy feature accompanied by multiple photos (here’s Heidi laughing with girls who are her “friends” because they feel sorry for her; here’s Heidi in her wheelchair, looking sad) detailed my struggle with the disease and my determination to persevere. It was a classic gutsy-gimp-triumphs-over-adversity story with just the right amount of — as I call it — “inspiration porn,” along with manufactured quotes that made me sound both angelic and pathetic.

I was interviewed for a few more media stories. At some point, the Arthritis Foundation saw me as a face of arthritis: a presentable kid with obvious joint deformities who could speak and connect with an audience. In short, I cleaned up well and was both articulate and undeniably “crippled.” Soon, I was booked on a local morning talk show, my first TV appearance. I was terrified leading up to it, but found the experience exhilarating. Afterwards, I couldn’t believe I’d been a guest on a show that my family had watched for years during breakfast on our six-inch black and white kitchen counter Sony.

Today Heidi Johnson-Wright, an accomplished advocate and writer, doesn’t have to smile at anyone if she doesn’t want to — she can comp her own trips.
Today Heidi Johnson-Wright, an accomplished advocate and writer, doesn’t have to smile at anyone if she doesn’t want to — she can comp her own trips.

My poster child career began in earnest my sophomore year of high school. When I wasn’t recovering from a surgery, it seemed I was shilling for the Foundation. Most appearances were in-state and decidedly unglamorous: speaking at Fraternal Order of Ferrets’ events and public education conferences, or interviews on local TV. The best part was getting to skip school for a day, with parental sanctioning.

What I really looked forward to was the occasional trip to a big city, such as Washington, D.C., or New Orleans. These would coincide with Foundation events at which I’d deliver a canned speech and be interviewed by local media. I found that public speaking and schmoozing came pretty naturally to me, because they generated attention that I could control. And not only was it OK to be a gimp, it was essential. I didn’t mind people looking at me when I was working a room. It sure as hell beat the wide-eyed stares at the mall.

The Foundation booked us at first-rate hotels. Our evenings were typically free. Predictably, we went to the most touristy attractions and restaurants, but I enjoyed every moment. No one ever came out and said, “Look, kid, you get to visit the National Gallery or eat at Café du Monde in exchange for your dog-and-pony show.” But I understood, in life, there were no free lunches — or beignets. I had to give in order to get.

But no matter how many appearances I made, I would get butterflies just before I stepped up to every podium, the coppery taste of fear on my tongue. Seconds later, I’d be gazing out at a sea of faces, all looking back at me, expecting something. To be informed? Entertained? To be sated with inspiration porn?

I tried not to think about those moments ahead of time because it could send me into a panic attack. I would tell myself all I had to do was read the speech that had been written for me, the same speech I’d rehearsed for days. Once I’d begin — smiling, enunciating clearly, making eye contact — I was on poster child autopilot. Before I knew it, I could exhale and take my leave to the sound of applause. Bring on the beignets.

Apparently, I was playing my spokes-urchin role well because the Foundation kept inviting me back. They even hired a professional photographer to capture various moments in my day. (Here’s Heidi in class with her friends. Here’s Heidi in her wheelchair, petting her dog. Here’s Heidi looking crippled enough to elicit your pity, yet not so crippled as to turn your stomach.) The photos were made into the Heidi slide show, a public education presentation designed to put a human face on arthritis. The presentation was used by scores of Foundation chapters across the country.

The New, Improved Product

I’d had a pretty sweet run with the Foundation over several years, but I should have known it wouldn’t last forever. Although I was petite, I was beginning to look like a young adult. I no longer had the cherubic cheeks and guileless grin of a child. The magic was gone; I’d morphed into a sarcastic teenager.

My obsolescence became painfully clear on a trip to Atlantic City to appear on a Foundation telethon being held at Resorts International. We were surprised when we learned we had no room booked there; we’d have to take a cab to another hotel nearby.

Accustomed to upscale accommodations, we thought there had to be a mistake when we arrived at our destination, a motel off the main strip. The room’s door opened directly onto a parking lot. The deadbolt was broken, and the door could be secured only with a cheap sliding chain lock that an emaciated crack whore could have forced open. The rest of the room read like an entry from Trip Advisor’s annual worst list: running toilet, dripping faucet, broken floor tiles, peeling wallpaper, cigarette smoke mixed with some other unnamable stench and stains of indeterminate origin. We stayed 10 minutes, then cabbed it back to Resorts International where my mom demanded we be provided a room.

My role in the telethon was to be a brief interview sandwiched between a couple of the entertainment acts. I arrived on set about 20 minutes before my scheduled time to review the list of classic softball questions. As I mentally prepared myself to go on, I noticed a pair of gorgeous tow-headed twin girls, about 6 or 7 years old. They were backstage, being fussed over by a producer. Both girls were lively and playful, jumping around like typical kids. Were they the producer’s children, simply hanging around because her sitter bailed? Then it suddenly dawned on me: these adorable moppets were to be my successors. They had been hand-picked as the new face of the Foundation. Given how freely they moved, their arthritis must have been confined to a couple of knuckles.

It was like bumping into the guy you thought was your boyfriend while he’s out on the town with a younger, hotter, fitter chick. Or in this case, a chick and her equally hot, fit twin sister.

How could I have been so dumb? How could I not have seen the writing on the wall? I had simply become too old — and perhaps, too gimpy — to motivate people to send in their C-notes or to leave their estates to the Foundation. Like the fashion model who can no longer hide her crow’s feet, I had outlived my usefulness.

I stuffed my emotions down for the moment. My interview went off without a hitch. Because the telethon talent was solidly D-list, we had no desire to linger in the studio. There would be no dinners at fine restaurants on this trip. Instead, we were given vouchers for the hotel employees’ commissary.

We dined on flavorless, anemic-looking chicken and steam table veggies just a table away from falsetto-voiced ’70s singer and ukulele player, Tiny Tim.

Click to enlarge

Dear Friend:

Meet Heidi.
She’s pretty … she’s bright …
and she walks up hill backwards.

Heidi is 16 years old and one of more than 250,000 children in the United States afflicted with arthritis. She faces daily pain with courage and determination. Because of arthritis, her ankles have been fused and to walk uphill forwards is nearly impossible. So, she walks uphill backwards.

Heidi was 8 years old when diagnosed with juvenile rheumatoid arthritis and has undergone five major operations, including shoulder and hip replacements. She doesn’t want other children with arthritis to have to struggle.

When you were recently invited to join the Arthritis Foundation, you didn’t respond. Perhaps we should have introduced you to Heidi before.

Will you please join with us now while Heidi backs up her hills to reach her goals? Help us move forward to our goal of finding a cure for the nation’s number one crippling disease. Make Heidi’s goal your goal. Your membership contribution will smooth the path ahead for Heidi and countless other children and adults.

Remember, arthritis isn’t curable but suffering is.

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