ADA and 25th anniversary

ADA and 25th anniversary

Posted by Dan Gottlieb on Jul 8, 2015 3:50 pm

I became a quadriplegic in the waning days of 1979, 10 years before the ADA was signed into law. I was a 33 year old married man with 2 young daughters. Fortunately I was already a psychologist so I had a profession to fall back on. After spending several months at Jefferson Hospital in Philadelphia, I was transferred to Magee rehabilitation Hospital where I would spend the next 6 months learning how to live with this body.

As I was getting closer to discharge, we had an outing in nearby Chinatown so that I could get a sense of what life was like outside of the safety of Magee. There were no curb cuts so my physical therapist had to balance me up and down every corner in my manual wheelchair. We chose the restaurant we did because they assured us that someone in a wheelchair could easily get in. When we arrived, it “only had a few steps” said the manager. (This still happens today although much less frequently.)

6 months later, I returned to work at a local psychiatric hospital where I had been directing their outpatient drug treatment program. Getting into the building required navigating about 25 steps! Fortunately I had a male nurse who was incredibly strong who could get me up and down those steps. I complained to my employer and asked to get a wheelchair lift installed, instead they offered me an office in a wheelchair accessible building about 200 yards away from the program I was running. Never a big fan of being isolated and deprived of the ability to do my work efficiently, I pushed on. I insisted on a wheelchair lift. I was told it was too expensive and they didn’t have to do this that all they had to do was give me an office somewhere. That was in 1983.

Back then I was a hockey fan so I went to the old stadium quite often. The only place I could fit was under an overhang behind the last row. So throughout the game I had to sit sideways with my head bent over.

After the ADA, I almost wept when I attended a sporting event at the new center. Over the next several years, I began seeing curb cuts and ramps leading to businesses and restaurants. And now, a few cabs in Philadelphia are wheelchair accessible with the promise of more to come. I can now get on Amtrak and subways in many cities. I’ve experienced wheelchair accessible national parks and have been able to rent wheelchair vans in most cities in this country. I have even used voting booths that are completely wheelchair accessible, something I couldn’t even imagine 10 years ago.

Most people know that George HW Bush signed this law. One of the instigators of the law was then Atty. Gen. Richard Thornburg who had a son that was physically and developmentally disabled as a result of a car accident. I can’t help but to wonder what would have happened if there was no Dick Thornburg instigating this seachange for us based on his personal experience.

I’m grateful to all who came before me. And I’m grateful for all of my cohorts who are making it better for those who come after me.
I would love to hear everyone else's experience who was injured prior to 1990.

Dr. Dan

Re: ADA and 25th anniversary

Posted by RonW on Jul 15, 2015 3:23 pm

I was paralyzed during exploratory spinal surgery in December 1963 in the middle of my junior year in college at 20 years of age. While my hands and arms were severely affected, I was able to walk, but not run, and left the hospital for my parents home 5 weeks later. I had about 6 months of physical therapy, plus electrical stimulation conducted at home. I spent 5 weeks, mostly waiting, in the welfare ward (a 16 bed room) and University of Wisconsin Hospital during the summer of 1964, where vocational therapy consisted of learning how to make potholders on a pegboard and not much else. I asked to go back to college. Later, I returned to Madison with my grandmother to a leg brace maker who fashioned a stainless steel hand splint that I still use every day so that I could hold a pen to write with my right hand.
I returned to my college, Stout State University, in the fall of 1964 with help from a federal rehabilitation program in my county that paid for room rental, meals, and an electric typewriter for one finger typing. At first, I was told to go to "Eau Claire where they have a program for people like you," but I insisted on returning and finishing my degree. My advisor said that he, "didn't know what to do with me," so I was assigned to my department head who gave me independent study courses rather than shop courses requiring a lot of hand work. I managed laboratories by working with partners where I did the paperwork and others did the lab work. I excelled, got straight As, applied to grad school, was accepted in industrial engineering at the University of Wisconsin, and later, received a fellowship at Stanford. I worked in telecommunication for 3 years, and then taught at my alma mater. I went on for my doctorate and spent my career in higher education teaching at four universities, and ending in administration.
Still, despite my ability to live alone, drive on unmodified car, and compete with the best of other engineers and professors, I often found that I was limited in job opportunities by a perception that I was physically inferior. However, wherever I worked, initial suspicion ended with admiration for my ability over any misgivings. I fit in very well. There were few physical obstacles to what I could do. But my left leg was gradually getting worse; I was tripping, and falling a lot. I had four major workups at major medical centers, including Mayo Clinic, with no resolution to my progressive paralysis
The advent of ADA found me already working for 10 years at Texas Southern University writing their initial disabled access program and working on renovations throughout campus to improve physical access. Programs at the University of Houston and Texas A&M that I was familiar with were much better, even though all the administrators at TSU attended a two-day seminar on all the ramifications of ADA. While I never got to know him, Justin Dart got to know George H. W. Bush when he was governor and led Texas in improvements for the disabled that was incorporated later in the ADA. I did become familiar with Lex Friedman at TIRR and we became friends as we met occasionally at events. Lex was also instrumental, along with Dart, in drafting the ADA.
After a long, gradual decline, I reached the point in 1992 where I no longer could take care of myself and had to hire help and get into an electric wheelchair. I am still declining, losing function every year, but have been able to adapt using technology like the voice dictation system I'm using for writing this. I had to stop driving in 1995, but Houston had its Metrolift program that got me to work. Buses, on the other hand, were not all modified for wheelchairs. Twice, seven buses came and went without a lift, although one was promised, "on the next bus." Thanks to a drunk driving law channeling funds from fines into rehabilitation, I acquired, in 1998, the first of two highly modified vans with lowered floors, remote electronic entry access and fully automated driving, with which I've driven 160,000 miles. From 1965 onward, I've never been able to pump my own gasoline and have always relied on strangers or helpers. Over the years I've noticed a great improvement in hotel/motel access from wider aisles, roll in showers, wheelchair accessible bathrooms, while still sometimes, very cramped, and trails and parks and amusement areas, theaters, and restaurants all quite accessible, although parking with a foldout ramp sometimes presents problems. I'm often given some of the best seating at events and ushered ahead of others waiting in line.
The one thing that I found most disturbing about the ADA was the intent of equal access to education and employment. While physical access as been improved greatly, equal opportunity when it comes to employment has been underplayed by management who sometimes think that it means that the disabled have to do heroic things to match colleagues' job requirements, instead of providing the tools necessary so that equal work can be accomplished. The perception problem remains that somehow, being physically paralyzed is inferior, mentally. That still has to change.  
Dr. Ron Hull

Re: ADA and 25th anniversary

Posted by Dan Gottlieb on Aug 12, 2015 3:14 pm

dear Dr. Hull,

Thank you so much for sharing your important story. You and I are roughly the same age as I just turned 69.
And although your story offers important historical perspective, not to mention great insight into your life, what struck me was the fact that things are getting worse for you.

After being a quadriplegic for 35 years, they are getting worse for me also. Because of curvature of my spine, my balance is not so good and I live with neck pain as a result. As we age, skin gets thinner and more fragile and more at risk for breakdown. I gave up driving last year as my balance affected my ability to drive. All of this inspires me to start a new discussion entitled: "what now?".

I will start it now. Please join me?
Thanks again

Daniel Gottlieb PhD

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