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Tuesday, August 4, 2015

25 Years Post ADA Academia Remains Hostile to Disability

Stephen Kuusisto has put up a number of posts at his blog Planet of the Blind. No doubt, he has started August with a bang. His posts have deeply touched me as they reflect my experience as a scholar with a disability. Believe me, we scholars with a disability are a rare breed. The rarity of professors with an obvious disability is a problem that has a deleterious impact on the entire university. An unintended ableist message is sent to the academic community. Disability in the most general sense of the term is an unlucky individual's problem. Worse, the university gets to decide what is and is not a so called reasonable accommodation. Oh my how universities balk when accommodations are requested. The resistance to providing the legally required reasonable accommodations has not improved since the ADA was passed. I would contend the resistance to making the required accommodations has gotten worse (especially for students with learning disabilities). Reasonable accommodations are perceived to be a one off. In other words, the person requesting a reasonable accommodation due to his or her disability is deemed narcissistic and an economic drain. ASL interpreters cost too much! We have no idea how to convert a file or academic program to a screen readable format! Sorry, we never thought about wheelchair access. The list of ADA violations is seemingly endless. When I point out that the ADA is civil rights legislation and enforced by the DOJ I am deemed bitter or have a chip on my shoulder. In failing to provide reasonable accommodations universities nationwide are violating Federal Law. They are violating the civil rights of all people with a disability. When the discussion is framed as a civil rights issue lawyers are put on the speed dial. ADA coordinators schedule suddenly gets busy, phone calls are not returned, and one can quickly discover you are thought to be a pariah. This quite easily accomplished when you are the only scholar with a disability on campus or attended a conference.

The deeply rooted discrimination against people with a disability is most evident when scholars such as myself, Kuusisto and others try to attend academic conferences. Kuusisto has written about this as have I. In "The AWP and Disability Inclusion" Kuusisto detailed some of the problems he has had over the years attending the annual meetings.
  1. Hotel in Chicago tells me I can’t come in with my guide dog. Old game. Get the manager. Checking in takes 45 minutes. Dog is thirsty and hungry after plane trip.
  2. Ask for accessible handouts at panels. None. Shrugs from panelists. Eye rolling.
  3. Complain to national office about accessibility problems with conference website. Eye rolling.
  4. Fall down while entering a big room where a popular panel is about to take place. The panelists walk over me while I’m on the floor. One of them is very famous. He talks about empathy in his prepared remarks.
  5. Ask for escort to find things. Takes 1 hour to find accessibility services table. Miss the panel.
  6. No one is educated about helping disabled people. Lots of “I’ll see what I can do…”
  7. Wheelchair users have lousy time with everything from transportation to access.
  8. Deaf people have to fight to get sign language.
This is a modest list. It could easily include dozens examples of the blatant bias blind scholars experience. I have had many similar experiences when I travel and request a reasonable accommodation. It is very rare to receive a prompt request in large part because no one ever thought of it. Access information is like gold--a rare, and for me, highly valued commodity. For me, this information means making a flight or not. Attending an academic session or not. Being able to shower or not. Go to the website you say. Good luck. Test this for yourself. Find the AWP information about disability on the organization's website. It is buried and useless. Here are some highlights I have experienced.

1. The removal of the illegal and potentially dangerous ramp leading to a dais platform is not made. The request was made three days earlier and repeated daily. Hotel employees appear 10 minutes late, take 15 minutes to break down the ramp and reorganize the room. My one hour session is reduced to 30 minutes. The session is ruined. I am deemed unreasonable and the cause of the failed session.

2. Tables at most meeting sites are so high I cannot see or use them.

3. Buffet food is so high I cannot even see what is offered. Hotels bar are usually inaccessible.

4. The hotel shuttle bus lift is broken. The meeting organizer asked if an accessible shuttle bus was available. They were told yes. They were not told the lift has not been operational for six months. The lift to the pool, breakfast nook lifts are also not operational.

5. Accessible rooms were not reserved for the block of rooms secured. I am not eligible for the steep discount associated with attendance.  Hence my room cost can go from about $150 to $400. The contract signed cannot be broken. I check in and check out. I hope I can find a nearby accessible hotel. Lucky me, I find a hotel but they only have an accessible room with tub. I need a roll in shower. I get to sleep but cannot shower.

6. Finding any information about my options for mass transportation is a mystery. The person I speak with after a dozen calls go unanswered tells me the organization is only responsible for access at the meeting venue itself. The person suggests I call the hotel. I call the hotel and they tell me to call the academic organization. I am further told their responsibility to provide access is limited to the hotel property. A loop of misinformation starts.

7. I would like to ask a question. All microphones are too high to reach. I request that at least one microphone be lowered. This takes three days to arrange despite daily requests. Success occurs on the fourth day as I check out.

8. No list of accessible bars, restaurants, taxis, etc. in the area are available. No list of cultural institutions is available in terms of access. I am firmly trapped in hotel.

The word to describe the above used by Kuusisto: demoralizing. I find it demoralizing and isolating to attend academic meetings. The impact this has had on my life and career has been profound. Kuusisto has written: "I think the AWP [insert any other academic organization acronym] needs to organize a committee on disability access best practices". I have spent much time with an academic organization to improve access for scholars with a disability. I was on a Presidential panel about access and helped produce a report for the organization that took about a year to write.  Fast forward two years and none of the modest recommendations were enacted. Kuusisto noted "I know disabled folks who continue to go to the conference. They believe earnestly that showing up will change the dynamics. I no longer believe this". I was a true believer at one point. I now believe efforts to be inclusive for scholars with a disability are doomed to failure. I further believe academic panels created to improve disability access are designed to exhaust the few true believers. I further believe there is no interest in accommodating scholars with a disability. Kuusisto concluded:

The problem for those of us with disabilities is that the permanence of physical or neurological difference is unbridgeable and the built environments that occlude or obstruct our progress are still omnipresent. The Americans with Disabilities Act told us boldly to come into the village square or the agora. We’re here. We like our colleagues. We want them to like us. We feel sad about the eye rolling. The good news? Eye rolling can be a temporary condition.

Oh, the eye rolling that takes place when a scholar makes a request for a reasonable accommodation! It is truly impressive. The disrespect is extreme. The lack of care and interest is obvious. Much clucking takes place about how important diversity is. Oh yes we place great value on accessibility I am told time and time again. Yet I encounter barriers, social and physical, at every academic meeting I attend. Kuusisto and I are what I call pre ADA cripples. We went to school and fought tooth and nail to be "mainstreamed" and get a good education. Not only did we push but so did our supportive parents. The bias we experienced was extreme and in some cases confrontational. The law was not on our side. For instance we did not have the right to a public school education until IDEA was passed in 1975. After fighting to get into a graduate program I was told I had to be the best or star student. I did not mind this one bit. I was full of piss an vinegar and embraced this challenge. It was like putting a red flag in front of a bull. But what about all those potential scholars that might not want this challenge? Careers were ended before they started. This says nothing of the humiliation I experienced when earning my PhD at Columbia University. Accessible bathrooms were virtually non existent. Ramps conformed to no known code. Barriers abounded. Many wondered why I was in the PhD program. I was told more than once that "I was wasting a spot for a person who was going to go on and get a job". The assumption was I was unemployable.

What is a crippled scholar to do? I suppose the tiny population of professors that exist handle disability based bias differently. In the UK Stephen Hawking revels in his fame and rarely discusses disability based bias. When he makes a societal observation I cringe. For instance, he supports assisted suicide--this is all too easy for him as no one is going to suggest we end the life of the supposedly smartest man on the planet. What Hawking ignores are all those on the "dole" who are disenfranchised and struggle to live day by day. And me? I hate to admit it but I really care what others think of me. I try not to think along these lines. Yet at heart I care about how others perceive me. I also know I will never measure up or down to societal expectations. The bar is set low or impossible high people with a disability. A normal life is impossible and we are reduced to a metaphor--think inspirational existence. Some people with a disability make a career out of this.  Kuusisto wrote:

 I don’t care what people think of me–I’m a person with an evident disability living in a civilization that sentimentalizes disabilities. The blind man who climbs a mountain can dine out forever giving talks about inspiration–talks that tell millions who live in thrall to sad confirmations that their lives could be bigger if only they dared live bigger. I have a general disdain for these sorts of talks, and in truth would rather have a colonoscopy without anesthetic than listen to the treacle that far too many celebrities with disabilities willingly toss at conferences and conventions. Inspirational speaking is always missing the point–that life is life, and lived with better ideas it’s a better business. Life is not cavalier emulation. It’s something else.

Like Kuusisto, at some level I do not care what people think of me. If I did know what many strangers thought of me I could not exit my front door. I honestly do not want to know. I share Kuusisto disdain for inspirational talks that are in fact not inspirational at all. They are just destructive.  Such talks enhance ableist beliefs that must be undermined. In the end, my two go to emotions are depression and anger. Lately I have been very depressed. Yet I adapt and try and turn the depressing I feel into a healthy anger. Anger I told Kuusisto is useful. I joke angry cripples get shit done. My last sentence was an homage to Ed Roberts one of the first prominent disability rights leaders in this country. He wrote: "Most psychiatrists and service professionals who work with us tell us that anger is a bad thing...a stage to get over or something that we need to overcome. But anger is a powerful energy. We don't need to suppress or get over our anger, we need to channel it into making change for the greater good. We need to make sure that we don't turn our anger in on ourselves or our loved ones, but focus it on removing obstacles, and making things happen.". Link:

I want to make things happen too. To a degree, the ability make things happen has been impaired by the ADA. Yes, the law is on our side. Yes, progress has been made. I suppose what bothers me the most about the ADA celebrations was the lack of anger. The system that supposedly supports people with a disability is designed to wear you down. Life is a fight for survival as one is routinely on the edge of poverty and typically unemployed. We people with a disability need to embrace anger and what Ed Roberts called "cripple power". Screw the system. There are enough cripples in the nation to form a powerful political coalition. A detailed knowledge of disability history would be instructive and makes for a grim read. From this history we could enlighten others and get angry at the same time. Perhaps this could prompt social change. At the present social change is either absent or proceeding at a glacial pace. I for one would like to feel that I am equal to people without a disability before I die. I doubt it will happen but will give it my all.