I became a paralyzed paraplegic at age 18 from a spinal stroke.
At the time, developmentally, I was emerging into adulthood. My tasks were many, including forming an identity and becoming more self-reliant and independent. As the eldest of five siblings, I was already ahead of many of my peers. I had my own apartment, I worked full-time as a waitress and paid for my university education. I had a longtime boyfriend and planned to become a photojournalist.
However, as an adolescent raised in the United States, I had plenty of my own internalized ableism. I thought my new life was supposed to be about reversing and overcoming my disability, hiding my challenges and rejecting a disability identity.
Back then when I’d hear disabled folks say they wouldn’t want to be able-bodied or that disabled people had the right to be happy exactly as they were, I’d think they were delusional or had simply succumbed to their disability.
At age 18 the medical profession had saved my life but my disability community would show me how to live. In my early 20s my vocational rehabilitation counselor suggested I use my university communication arts degree to enter the Ms. Wheelchair pageants.
My counselor thought my participation would give me a sense of community and provide me with scholarships for graduate school. Initially I told her “no.”
When I’d shared the pageant idea with some of my friends they were incredulous. I heard “Get ready to be laughed at. That’s bizarre.” Or “You’re different. You don’t have anything in common with those people” and “How depressing. That’s the strangest excuse for a pageant I’ve ever heard of.”
I did enter the pageant.
The initial time, I won first runner-up. The second time, I became Ms. Wheelchair Michigan and then became one of the 10 finalists in the Ms. Wheelchair America pageant.
On the surface I’d tell people I entered the pageants because of the scholarships and curiosity. However on a deeper level, I sensed I was looking for my disabled community and my emerging self as a disabled person.
At the pageants, especially the national one, I’d never been around so many diverse females with varied disabilities. From these disabled females I learned disability joy:
The value of a nonconforming mind and bodyThat to only accept a traditional medical model of disability is to risk depression and isolationHow flexibility & adaptability were disability superpowersThat humor could lighten almost every hurt and provide a fresh perspectiveThat there is an intimacy to caregiving by a spouse or romantic partner that is incredibly intimate and sensualThat Disability Pride and Disability Culture are real, that living and creating one’s life is the ultimate example of creative rebellion, radical self-acceptance and resilenceThat progress is always better than perfection.That in every vocation and avocation there are countless examples of disability joy
After the pageants, I became friends with the former national winner who was from Michigan. She was married, a mom of two young children and an English professor. She’d had a spinal cord injury. At her home one evening, I watched her going through her coupon file making the family grocery list.
I was a sponge, absorbing how she did everything. She seemed so happy living her life. I saw what could be possible for someone who looked like me.
Today, the pageants are still going strong. The state title holders spend their year on important platform issues-from housing for disabled military veterans to accessible voting.
Joy is … last weekend, we were out for dinner at a local restaurant for my birthday. As I looked around the beautiful room, I thought this is a radical act. Appearing in public with my husband of nearly 45 years, blowing out a symbolic candle for a significant number of birthdays and gleefully, joyfully, making my secret wish.