None of the above problems came close to the worst experience I had this year. The worst experience I had was in fact not that bad but is indicative of why access remains problematic. I skied a few times last winter. Like other skiers, at the end of the day I am sore. If possible I like to swim after I ski. It relaxes and warms my body. Swimming is a real luxury in the winter after skiing. Typically, high end hotels have a pool. Somer resorts even have a heated pool outside. For me, this is the ultimate in luxury. It is very rare I can swim after skiing but I tried to last year. I skied near Syracuse and stayed in a mid level motel because it had a pool. I made the reservation solely because of the pool. I called and wrote prior to making the reservation. Yes, the pool is accessible. Yes, the lift is operating. The hotel staff was correct, the lift did operate. Upon arrival I knew I was in trouble. The motel was a bit run down. It had clearly changed hands many times and the ramp to the front desk was way out of code and steep. I had a room on the first floor next to the pool. I walked into the room and the overwhelming scent of chlorine filled the room. There was no window to the outside. It was bad but would not kill me for one night. I was tired and had no interest in checking out and then finding a new motel in the dark. The pool was easy to find as it was next to my room. As I entered the pool room the smell of chlorine was over powering. I could see the pool. It was big. It had a lift that worked. There were also 4 steps to get the pool level. I went to lobby and asked where is the accessible entrance to the pool. The employee had no idea. She called the manager. He came to the desk and told me he had no idea how I could get to the pool. He then asked "So, you cannot walk up the steps at all? We can carry wheelchair up the steps and then you can get back in. That is what we have done in the past". Sorry, but no I can not walk or stand. A puzzled look resulted in the manager calling the head of maintenance. This man appeared and he had no idea but suggested house keeping might know. At this point there is a small quorum of people. All are perplexed. All agree this is the most unusual request ever made. It is as though I am the only paralyzed person on earth. And here is the core issue: my "request" is individualized. Not one person present was making the leap in logic required that would negate this so called problem in the future. My request was not all about me but rather a disenfranchised class of people who are protected by the law. The law is called the Americans with Disability Act. They were breaking the law and they had no clue they were violating my civil rights.
I was not expecting the people at the motel to understand the larger implications of a pool lift that was not accessible. They were just doing their job. At issue for me is the ingrained ignorance and social exclusion. Disability history and culture is simply not taught in secondary schools and is rarely part of a collegiate education. As a result, disability is rarely if ever framed as a matter of civil rights. Limited access and the social isolation it creates are blithely accepted as the norm. I am a problem that needs solving. Sorry, but no. I am not a problem. I am a sentient human being. I have the same rights as any other American. I have the same rights as any other guest that checked into the motel. What took place at the motel was typical. Access problems abound. I cannot travel without encountering barriers social and physical. I am well aware that the way I approach barriers that abound is complex for I am not a single individual. I am the very representation of all things disability. I am a token, a memorable person that represents all people with a disability. If I get angry all men that use a wheelchair are mad at the world. If I am firm and forthright I am a difficult customer. People, typical bipedal people, do not get it and some days I think they do want to get it. My experiences are far from unique. Liz Henry wrote about the lack of accessibility at technology conferences. Like me, she has been going to conferences regularly for many years. Has progress been made and is disability inclusion valued? In a word no. Henry wrote about a typical experience, one that every person who uses a wheelchair has had:
I ask a hotel employee. I ask another conference goer. I find a conference organizer. The hotel people go and find other hotel people. There is a hubbub. Facilities people with walkie-talkies show up. I am polite and not angry, over and over. Everyone stands around wondering what to do. There is a freight elevator that is locked that you can only get to from the back alley around an enormous city block. I end up in the basement. There is a tiny airlock-style lift but it’s locked and no one is sure who has the key. I demand the key. Consternation. No one has ever thought about this, ever, in the history of the known universe!
I often INVITE able-bodied strangers and friends alike to find, and ride, the locked, blocked, garbage-filled elevators in the basement with me; to stay by my side and witness how it goes. I have to laugh all the way through it. It’s more than inconvenience. Crappy access says, like a slap in the face, that we aren’t wanted and no one gives a fuck.I had to laugh when I read Henry. I get a perverse sort of pleasure when typical bipedal friends get an inkling to what my life is like. I often joke, welcome to the land of disability. Locked elevators and bathrooms abound. Elevators filled with trash and cleaning products are common, obscure entrances to buildings and other access adventure exist; for example lots of trips through tunnels when navigating universities and huge conference centers. I regularly see the worst parts of some of the best buildings. In a way it is interesting but there is no question the lack of access is a slap in the face. This metaphoric slap is fueled by ignorance and a lack of information. Most venues I visit all state they are accessible. To a degree this is correct. Theoretically one can navigate freely but no one know how to get from the lobby area to the bar, pool, health club or restaurant. No one knows if there is an accessible podium where I will be speaking. No one knows the nearest bathroom to the room I will be speaking in is on a different floor and requires the use of an elevator. No one knows if the nearest subway or bus stop is accessible. No one knows if the airport shuttle bus is accessible. No one knows if the pool has a lift. No one knows where the elevator is when I encounter a sign that points down to an impressive stairway to where I want to go. Sure you can get in--sort of. Like Henry, what I have learned if there is an information black out "that tells me right away I'm heading for a world of alienation, in a place where no one has put thought into accessibility".
What Henry describes is exactly what I have experienced the last three times I have attended the American Society of Bioethics and Humanities (ASBH) annual meetings. There is no disability diversity. I rarely if ever encounter another scholar with disability. There is a good reason for this. It is no different from the worst access fail I described above. Scholars with a disability are alienated for good reason. Staff organizing the ASBH meetings treat access issues as an individual problem. Any input from scholars with a disability is rejected. So called access "problems" would not arise if a modicum of thought was spent on access--something I have thought about for nearly 40 years. Some professional organizations think about access issues, the ASBH does not. It never has and I doubt it ever will. The utter lack of interest in access at ASBH meetings is by far the worst of any professional association I have ever been involved with. No information is provided about access. How about a wheelchair route map to the ASBH registration desk? Nope. A list of accessible taxis and bus routes? Nope. Signs pointing out accessible paths to frequently used locations? Nope. Does anyone know how to unlock elevators or bathrooms or is there a contact person available? Nope. Are distances included in maps? Nope. Are microphones lower so wheelchair users such as myself can ask a question? Nope. Are ASL interpreters and CART provided? Sometime yes, sometimes no; and if provided is the deaf scholar followed by ASBH staffers to insure they are getting maximum bang for the buck? Yes. Are conference materials provided in a screen readable format? Nope. Is the app for the conference screen readable? Nope. Are a list of nearby accessible restaurants made available? Nope. The list goes on and on. Not one but two ASBH presidential task forces on disability have been created. I was part of one. Hundreds of emails were exchanged. Telephone conferences were held. Were concrete suggestions enacted? Nope. Were the task forces on disability used to exhaust scholars that wanted to be involved in an effort to make them give up in frustration? I do not know. Here is what I do know: if I am the only person present at a conference using a wheelchair I am mad. I am mad because I know access is not valued. I know without question the professional association is doing something very wrong. Here is a radical idea for the ASBH: stop complaining about cost of CART, ASL interpreters and how access is the hotels problem and that the ADA does not apply. Please just stop, think and do something to be inclusive. Demonstrate that scholars with a disability are valued members of the organization. The ASBH is failing and has failed for quite some time to be inclusive to scholars with a disability. Within the small population of scholars with a disability when access issues and the ASBH are mentioned there is often stony silence and an annoyed roll of the eyes. More than once I have heard "That organization sucks in terms of disability access. I never go, its just not worth the hassle". I am perplexed. No one at the ASBH wakes up in the morning and thinks lets alienate scholars with a disability so they will not attend the meetings yet this is exactly what they are doing. Thoughts that come to mind at 4:30AM are often deeply embedded. My alienation is as heart felt as it is unwanted and unnecessary.