by Beth Finke
A historical ADA campaign poster
Last Thursday Mary Schmich’s column in the Chicago Tribune introduced readers to the Grand Marshals of Chicago’s 2017 Disability Pride parade: Karen Tamley, Kevin Irvine, and their 11-year-old daughter Dominika. The column opened by explaining that the family is accustomed to getting stares.
“In an airport not long ago, a passing traveler, dragging a wheeled suitcase, did what many people do, which was to gawk at them while walking by.
The traveler stared first at Dominika, an 11-year- old who has grown up being asked what happened to her fingers and her face. The traveler then turned to inspect Dominika’s mother, who was using a wheelchair.
And then the distracted traveler walked straight into a concrete post.”
Dominika was born with Apert syndrome, a genetic disability characterized by facial differences and fused fingers and toes. Her mother, Karen Tamley, is the commissioner of the Chicago Mayor’s Office for People with Disabilities. She was born with a rare disability of the lower spine and uses a wheelchair. Dominika’s father, Kevin Irvine, has had HIV for 35 years and sometimes walks with a limp or with crutches due to complications from hemophilia or treatments for HIV.
The couple adopted Dominika when she was 5 months old, and the column said having disabled parents helps Dominika put her own disability into perspective. “I feel less self-conscious when I look at my mom,” young Dominika told Schmich.
Beth and her son, Gus, when he was a baby.
In some ways, I can relate to the family in this Chicago Tribune story. I got married in 1984 and started seeing spots in front of my eyes when Mike and I were on our honeymoon. Back home, eye specialists diagnosed retinopathy and scheduled me for eye surgery. I was 24 years old, I had a position at a major university, I was young and newly-married. I assumed the eye surgeries would work, and the spots would go away.
A year later, in 1985, I was completely blind. My contract was terminated, and I had no where to turn. I didn’t know of any other blind people with jobs. I supposed my boss was right. Blind people can’t work.
Our son Gus was born the next year with a rare genetic abnormality that had nothing at all to do with my blindness: Trisomy 12p. Specialist diagnosed him as “profoundly and severely handicapped,” but when he was still small enough to lie under blankets in a buggy, he looked like an average sleeping infant.
Back then I didn’t have the courage that Dominika and her family has. I’d fold up my white cane, hide it in Gus’ diaper bag and have Mike push the pram so we would look “normal.” I walked alongside with one hand near Mike’s on the handle. I wanted to look like other mothers, and I wanted Gus to look like other infants. I didn’t want anyone staring at us. I didn’t want anyone to know Gus and I were “handicapped.”
Gus was a year old when Senator Harkin of Iowa and Senator Lowell Weicker of Connecticut introduced the first version of the Americans with Disabilities Act (ADA). Disability advocates worked three long years to get the American public and the Congress to understand that discrimination on the basis of disability took many forms — myth, stereotype, fear — and that this discrimination was counter to our values as Americans. The hard work so many people put into getting this bill passed helped me come to understand that my urgency to hide the disabilities Gus and I had were also based on myth, stereotype and fear. Disability rights were civil rights.
A historical ADA campaign poster
Gus grew out of his buggy, and in 1989, the year he turned three, he transferred to a wheelchair and started school. In 1990, the year the ADA passed, Gus learned to propel his wheelchair himself. That same year I traveled on my own to Morristown, New Jersey to train with my first Seeing Eye dog. I learned to use a talking computer, too, and started writing. I’ve been moderating this Easterseals blog for a decade now, and I lead four different memoir-writing classes every week for older adults in Chicago. My third book, Writing Out Loud: What a Blind Teacher Learned from Leading a Memoir Class for seniors was published by Golden Alley Press just a few months ago.
Gus is 30 years old now. He lives in a group home near a park in a small-town neighborhood in Wisconsin where he attends a workshop with his three roommates every weekday. When we visit, Mike pushes Gus in his wheelchair to that nearby park, and I give my dog Whitney the “follow” command so we can take up the rear. I guess you could say we’re our own Disability Pride parade.
Mary Schmich’s Chicago Tribune story said that being this year’s co-grand marshal of the Chicago Disability Pride parade unsettled 11-year-old Dominika a bit. “I have mixed feelings,” she told Schmich. “I mean I like it, I like the idea of it, but…I feel self-conscious about it, marching and having people stare at you.” I know what she means. People still stare at us, too, and I still feel self-conscious about it.
Ever since the Americans with Disabilities Act passed, though, more and more people with disabilities are out in public. We’re on TV shows, in movies, at workplaces, in athletic events, at schools, on public buses, in big city parades and at neighborhood parks. People are getting used to having us around, and columnist Mary Schmich sees that as a good omen. “Maybe one day, by the time Dominika is old, the disabled won’t be so conspicuous,” she writes in her column’s conclusion. “In that future world, a traveler passing Dominika and her family in an airport might feel no need to stare, knowing that in the great and varied human species, that’s what people look like, that’s who families are.”
Join us for a Virtual Disability Pride Parade TODAY (7/26) to commemorate the 27th anniversary of the ADA!
Learn more about the Americans with Disabilities Act (ADA) and its impact
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