Indiana man pushes for more disability rights in southern part of the state

From The Courier-Press and WNIN-TV:

EVANSVILLE, Ind. — Evansville is the largest city in Indiana that is not served by a Center for Independent Living, a not-for-profit agency that supports persons with disabilities to lead independent and fulfilling lives. Rob Kerney (pictured), recognized this year with a prestigious Jefferson Award for community leadership, is trying to change that.

Kerney, the founding executive director of the Ohio Valley Center for Independent Living, appears this week on Newsmakers, a weekly public affairs television program co-produced by WNIN-PBS and the Courier & Press. The following is an edited transcript of Kerney's interview with Courier & Press Editor Mizell Stewart III.

Q: Independent living is described as a philosophy and a movement of people with disabilities who work for self-determination, equal opportunities and self-respect. How was the movement born?

A: The movement was born by a gentleman by the name of Ed Roberts, who went off to school at the University of California Berkeley and had an iron lung because he had polio as a child. He would go to school during the day, and at night he would live in what was basically a hospital with other people with disabilities. He decided this was not the right thing to do; they could go to school on their own during the day, and they should be able to live on their own. So they created the first Center for Independent Living to allow and help people with disabilities to remain on their own.

Q: It seemed like a lot of this was born out the misconception that once you have a disability, it's a medical condition. In other words, at that time, people would look at people with disabilities as people who needed medical treatment, instead of as people who needed support in order to live their lives.

A: Often times, it kind of was that way. It's happened throughout the ages, that oftentimes somebody who was blind, or who was physically disabled or even mentally disabled was put away in a medical institution for what they claimed was that person's good. But I often wonder if it wasn't just for the sake of those people not having to deal with people with those types of disabilities.

I mean, we even did it up until a few years ago. If you look at London, there were people who would go out to the mental hospital after Sunday lunch after church and pay a penny to walk through the hospital and look through these sliding windows, to see people in there chained to walls, and sleeping on hay and things. And we still had that up until recently, with sideshows and what some people called freak shows. It seems like it's just people's attitudes and the way they're raised, and we just have to change that attitude.

Q: Someone once said that people with disabilities are the only minority group that somebody could join at a moment's notice.

A: That is true. Just because you are born fully capable to move your limbs, or think clearly, or to see, doesn't mean it's always going to be that way. People will oftentimes become injured due to car wrecks, or falls or something that could cause physical or mental damage, brain damage for example, or even a disease or something that could affect these types of things.

I myself was not born blind. At the age of 4, I contracted diabetes, and as a teenager I was one of those bulletproof, 10-foot-tall teenagers. I was perfectly fine to do what I wanted because it wasn't going to happen to me. And so I would sit down and eat everything they told me not to, drink anything I wanted to, and my blood sugar was outrageous and through the roof, and at the age of 23, I started having trouble with my eyes. And at the age of 24, on June 6, 1991, I remember the exact date because I went in for my first retina reconstructive surgery, and have not been able to see since.

Q: Well, take us back to that diagnosis. I mean, you're in your early 20s, the prime of your life, and you're a student over at USI at the time. That had to be — the phrase "life-changing experience" would be an understatement.

A: In a way it is, because even though I was having the problems with my eyes, I always assumed they would be able to fix it, and I'd go off, live life, get married, have kids, get a high-paying job, living the "castle-in-the-sky" type of idea. But unfortunately, I had to have nine laser surgeries, and those laser surgeries caused that scar tissue to form. ... And that's when I started my life as a blind person, and realized then that I had a lot of things to learn. I was kind of scared, but at the same time, determined to go on, and maybe even a little too determined sometimes for my own good because I'd rather deal with the loss that way rather than not think about it.

Q: What are some misconceptions you have encountered that people have about people with disabilities?

A: My favorite is the fact that I'm blind, so I'm also either deaf or can't speak for myself. People like to get up in my face and scream, "Hi, Rob!" I sometimes will look back at them and scream, "Just fine!" Because obviously since I'm blind, I can't hear either. You do need to speak clearly, but you don't need to talk at the top of your lungs. Or there's been times where people ask the person I'm with if I need a refill at the restaurant.

Q: So you find that people talk past you rather than to you?

A: A lot of times, yes. ... You'd love to see how many juicy secrets I've learned just by sitting quietly in the corner and have people just talk as if I'm not even there.