Quasimodo, the hunchback of Notre Dame, was a sad character in literature. He was flogged, turned on the pillory in public humiliation. A beautiful gypsy woman, Esmeralda, took pity on him, gave him water and captured his heart. Later, Quasimodo defends his love in an attempt to save her life. Quasimodo is deaf, partially blind, has a hunchback. Quasimodo is disabled. And in the end, he doesn’t “get the girl."
As a matter of fact, in much of previous literature, media, press, and movies the disabled person is either portrayed as evil, pitiful, bitter or some inspirational figure – a super crip – who inspires everyone around them. There are also plenty of depictions wherein someone who is not disabled is the one to get the disabled person to “come around” and realize that life is still wonderful and worth living. That’s too bad, because media, literature, press and movies have tremendous power in influencing our attitudes toward people. And that’s just not the way things are in the Disability Community today. We seek inclusion, acceptance and equality.
Enter Michael J Fox. He plays Mike Henry, a husband, father, TV personality and a person with a disability—Parkinson’s — on the new Michael J Fox Show. Mike Henry’s daughter asks why does everyone have to talk about her father’s Parkinson’s? In the show, Mike Henry works hard to portray his disability as just one aspect of his life. But his Assistant works overtime molly coddling him. In one scene he comes into the office dripping wet from a rain storm and the worried Assistant says, “Michael you’re all wet!” He responds, “…I have Parkinson’s. I’m not a witch!” He’s just a man trying to do his job, yet he’s surrounded by people trying to remind him that he has a disability. I
think he’s fully aware of it without their help.
My husband, the late Max J Starkloff, often told me of incidents when people did the same thing to him. People were very often uncomfortable around Max because he had a high level spinal cord injury and used a motorized wheelchair. He could read the face of a person who was not comfortable around him from a mile away. Quite frequently such people would give themselves away by approaching him with the comment, “How many miles per gallon do you get on that thing?”, a reference to his motorized wheelchair. He’d say, “Do you know how many times I’ve heard that dumb joke?” He longed for casual conversations with new acquaintances about the Cardinals, or current news events, rather than a focus solely on his disability.
Attitudes are changing, but not fast enough. One freezing cold, snowy morning Max was entering our office building downtown. An employee who worked in the building was outside smoking a cigarette. Stunned to see a man in a wheelchair, his ventilator pumping away, approaching the building, she blurted out, “What are you doing here?” Max replied, “I’m going to work.” Pressing the automatic door opener, he entered the building, not the least bit interested in staying out in freezing weather to satisfy her curiosity about why a person so disabled would be out in such terrible weather. I was right behind Max and she persisted with me. “He shouldn’t be out in this weather. Why isn’t he at home?” I told her that he was a prominent disability rights leader going to work, like he did every day. Unfortunately, her reaction was representative of many people when it comes to disabled people. The good news, though, is that attitudes are beginning to change because people with disabilities are now the messengers. They message by example.
There was a time, though, when Max was not allowed to go out on a freezing cold, snowy day. He lived in a nursing home after he became disabled. They had restrictive rules there. He fought his way out and battled against the attitude that he couldn’t live, work, have a family, or be a productive member of society. But, like the Mike Henry character, Max embraced his disability as part of who he was. It brought out his faith, strength, persistence and creativity—necessary attributes to overcome a great challenge. He wanted to be an “everyday Joe”, and in his mind, he was.
Ten years ago, Max and I and our good friend, David Newburger, co-founded the Starkloff Disability Institute. Our Mission – create a world that welcomes people with disability. That sounds lofty, but to us it’s critical if disabled people are to live independently, have competitive jobs, families and be contributing citizens. Every day we talk with qualified disabled job seekers. They, too, want to live in the community, work, have families and contribute to the common good. Every time someone with a disability lands a job and becomes part of a team at work, their coworkers see disability
in a new light. It’s no longer the focus of conversation or dumb jokes. We are changing attitudes for the better, one employee and one business at a time.The Michael J Fox Show is still very new and I’m curious to see what the public’s reaction to it will be. I hope it’s a big success! After all, any of us can become disabled at any time. Isn’t it better to be positive about it? By the way, unlike Quasimodo, Max did “get the girl." Lucky.
Colleen Kelly Starkloff has been a national leader in disability rights for 40 years. She and her late
husband, Max Starkloff, and David Newburger established the Starkloff Disability Institute in October 2003 to take their work in the field of disability in a new direction. After founding one of the nation’s first leading independent living centers in 1970, they wanted to dedicate the balance of their careersto enhancing opportunities for disabled people to achieve acceptance, independence, and full engagement with life. Colleen Kelly Starkloff is Co-Director of the Starkloff Disability Institute in St .Louis. She was married to Max J Starkloff for 35 years. The Starkloffs have 3 children and 6 grandchildren.