PARENT TO NONE, MOTHER TO MANY

Heidi Johnson-Wright with her friend, actor Bruce Campbell, on the set of Burn Notice in Miami

PARENT TO NONE, MOTHER TO MANY

By Heidi Johnson-Wright

I have lots of kids in my life. But I’ve never given birth or adopted a child or become a foster parent. I’m not a teacher or similar professional who works with young people.

And though my regular contact with young people is born out of necessity rather than choice, I cherish it. I enjoy it. It enriches my life.

I’m a forty-something married professional with dual careers as an attorney and writer. The other major descriptor, the other category that defines who I am is “physically disabled.”

I have had severe rheumatoid arthritis since age 8. Consequently, I have lived with chronic pain – sometimes severe – and serious mobility limitations for more than three decades.

• I use a power wheelchair most of the time.

• I have a specially-equipped minivan to transport my chair and me.

• I am the proud owner of two total shoulder, two total hip and two total knee replacements, plus various and sundry other implanted pieces of metal -- enough to stock a small hardware store.

• I sometimes measure my life in a few labored steps across a room, in independent trips to the bathroom, in the number of garments I own that I can put on and remove by myself.

Little acts of autonomy, tiny feats I can accomplish when my husband or personal care attendant are not around to help me.

Speaking of attendants, I’ve had a few. When I began college as a timid freshman, I hired my first non-family member caregiver. I became an employer at age 18, before I ever held a job myself.

Ever since then, my attendants have typically been college students between the ages of 20 and 22. At first, they were my peer group. After a while, I could refer to them as young people, and it was clear we were no longer in the same demographic group.

Besides benefiting from the obvious services they provide – housework and assistance with personal care – I also receive an intangible reward that is just as important. I’ve come to know the joy of being a mentor, confidante and friend.

Nicole worked for me for three years, an eon in the high-turnover world of caregivers. In that time, I was vicariously transported back to my insouciant college days. I received an education in au courant slang, all the richer for knowing the precise definition of “booty call.” While she shaved my legs, I got filled in on the best episodes of Jenny Jones and Ricki Lake.

Beth, my attendant for two years, often remarked that she enjoyed the few hours each week she got to spend in a “real house” as opposed to a worse for wear campus-area rental. From Beth I learned the iconic role of Tommy Hilfiger or Abercrombie & Fitch in twenty-something culture. My “hipness” has made me a hit with my nieces and nephews at Christmastime. When graduation rolled around, Beth and I spent an evening drafting her resume and brainstorming job ideas. We connected like girlfriends at a slumber party.

My other “kids” – and I use the term with affection and respect – are even younger. They are the teenage clerks who work at the supermarket and discount stores where I shop. Though I can get myself to the stores and cruise the aisles independently in my wheelchair, I often need help removing items from shelves, checking out and the stowing my purchases in the hatch of my minivan.

Joe was a friendly, talkative 17 year old who was my grocery store assistant for months. First a bagger, then a cashier, he’d jump at the chance to take a break from his normal duties to help me out. We chatted as I shopped, sharing info about how things were going – work for me, school for him. He’d moved to Ohio from Miami, one of my all-time favorite cities. It was fun talking about a place we both loved. The last time I saw Joe, he was about to take his driver’s license test, and I shared with him my experience from many years ago. By the next week, he had suddenly quit his job and I haven’t seen him since.

Kimberly was another of my grocery store helpers. On one trip, she excitedly shared details of her upcoming prom plans. The next time I saw her, she made a point of telling me that the prom was a blast and she was pleased with the way she looked in her dress. I felt complimented somehow, that I’d been deemed cool enough to receive a report of a milestone event in a young person’s life.

Though I only saw him once, I still remember the teenage boy who helped me get my discount store purchases to my vehicle one splendid summer afternoon. As we headed out to the parking lot, he spontaneously told me of his bout with bone cancer years before.

My wheelchair had apparently prompted memories of the pain and weakness he’d experienced in his leg before he made his eventual recovery. His poise and candor deeply impressed me. I marveled at his comfort with the subject and at his incredibly mature way of making me feel at ease as well.
Sure beats all the asinine wheelchair “speeding ticket” and “flat tire” jokes I hear from so-called adults two and three times his age.

Though my husband and I have chosen not to have children for lifestyle reasons rather than anything concerning my disability, I do value the talents and qualities of young people. Their fresh perspectives, idealism and enthusiasm are sometimes just what we jaded, cynical adults need to get us out of our attitudinal ruts.

Ultimately I’m glad that my arthritis, which can often bring hassles and difficulties, gives me the opportunity to have “kids” in my life.

Heidi Johnson-Wright is the world's leading expert on the Americans with Disabilities Act and is working to integrate universal design principals into sustainability standards of town planning.