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Friday, May 19, 2017

Moving Up and West

My Syracuse days are winding down. Working at the University was initially wonderful but as time progressed much changed. Over the last few years the university hired multiple people to disability related posts and not a single person with a disability was hired. This may sound like sour grapes but this is far from the case. Syracuse like every university in the nation seems to be averse to hiring scholars with a disability. Since I began teaching in 1992 as a freshly minted Columbia PhD I have taught continuously as various universities. At no point in my career have I had a fellow faculty member who also used a wheelchair. At the end of spring semester this month I asked, as I have every year since 1992, if the students had ever had a professor that used a wheelchair. Not once has a student answered yes. The lack of representation of academics with a disability is a national problem. In no way am I singling out Syracuse. Every university is at fault. Every administration, faculty, and university employee is part of the problem. Imagine if a university had no diversity. None. Imagine if a university about the size of Syracuse (20,000 students) had no employee that were black. This would be front page news. Outrage would ensue. When it comes to disability out of sight is out of mind. We cripples are simply not professorial material. Worse, the bar is set low--the bar for cripples is subterranean. The ordinary is a remarkable achievement. I am regularly praised for my ability to drive. I am praised for being employed, having a son, shopping for food etc. The ordinary for me is perceived as a major accomplishment. This is as dehumanizing as it sounds.

The hard part of always being the sole person with a disability present in academia is the overwhelming sense of loneliness and isolation. As I get ready for my big move out west I wonder if I will encounter the same barriers I have been forced to endure in the Northeastern United States. Denver is a far cry from gritty Syracuse. Denver is a thriving cosmopolitan city. It was also the epicenter of the successful fight to ride mass transit buses. It was, as I like to note, the first city that fell. No more inaccessible busses would be put into service in major cities. Today, all busses in Denver and every light rail station is wheelchair accessible. Finding an apartment was easy and stress free. Other cities followed Denver: New York, Boston, San Francisco, Seattle etc. The impact this had on the lives of millions of people who use wheelchairs was profound. When I move to Denver I can get on any city bus at any time. I can get in any light rail station. They are all accessible. Is Denver perfect? Of course not. Mass transit services the masses and problems exist on all mass transit systems. The point here is the impact easily accessible mass transit has on quality of life for wheelchair users is profound. While I am not a fan, Zach Anner made the following seven minute video that highlights how problematic NYC remains in terms of the subway system.


This video hit home as I just learned the Yale University fixed bus route is 100% inaccessible. As I mentioned in an earlier post, this summer I am teaching at Yale University Sherwin B. Nuland Summer Institute in Bioethics. To date, my experience has been uniformly positive. The director of the program has been pro active and welcoming. She has put in a great deal of effort to insure I will not encounter any access issue. At no point have I been treated as though I am a problem and represent an unnecessary amount of work. This has been a breath of fresh air when compared to other universities and academic organizations. Thus I was stunned when I went to the website to.yale.edu in order to figure out the bus system. I found an inner city sublet for June based on the assumption the bus system was accessible. At to.yale.edu I read the following

Yale Transit operates a Special Services Van which transports members of the Yale community who are permanently or temporarily disabled. The service runs 24 hours a day Monday through Friday and on Saturday and Sunday from 6:00 p.m. to 7:30 a.m. Passengers are picked up upon request and transported within the boundaries.

Special services van? This term is beyond antiquated and misleading. This is a classic example of disability based segregation. Worse, at to.yale.edu two links are provided--a student request form and employee request form for transportation. Both links are broken. A number for "special services van dispatch" is also provided. Disability history amply demonstrates that separate such special service transportation is routinely terrible. All para transit systems provide bad service. Access-a-Ride in NYC  is mocked as being  Distress-a-Ride. Exceptions likely exist but based on experience--one bad experience after another --I am not optimistic. Perhaps I am wrong but the dead links are a bad sign. Link rot here is an omen and not a good one.

I shake my head in wonder. I am going to an Ivy League Institution and have been treated with the utmost respect. I could not be more excited to teach in the summer intensive bioethics program. Yet this same institution uses language on its website that is deeply objectionable. Again, maybe the "special services van" actually provides adequate service. I find it hard to imagine Yale students and employees have not complained about the objectionable language and dead links. Based on prior experience with special service vans, I an only assume service is substandard or utterly useless. I do know I am being segregated from others. There is no doubt of that. So yet again I am reminded of the hidden labor associated with disability. Want to get on a bus? Follow a dead link or call a special number and get an answering machine. Want to watch a hockey game? Call ticket master special number for special guests. Leave a message on an answering machine and hope you get a call back within 48 to 72 hours. Want to spontaneously attend an event? You are out of luck. As I have thought about the special services van I am reminded of my son. He is often asked what was it like having a father who uses a wheelchair. His answer always involves time. Disability land sucks up time like a world class vacuum machine. I cannot begin to estimate the amount of time I am forced to wait. I wait for busses, elevators, wheelchair lifts, accessible bathroom stalls occupied by bipeds, for guards who have a special key to unlock the obscure inconvenient entrance and so on.

At a practical level I can avoid the special van. I most likely will do so out of principal. Typically I refuse to be segregated in a way that is obviously discriminatory. What this means is I will walk to work. It is not along walk from the sublet I have found--it is just a mile. Luckily it is the summer and weather should not be a major variable. What I do know is I just lost 40 minutes of my day. This might not seem too bad. My deep objection may seem petty to some, perhaps to many. But think about it. Twenty-six years post ADA mass transit remains difficult to access for people with a disability. Like Syracuse, New Haven is a gritty city. I am looking forward to leaving the gritty industrial Northeast for new cities such as Denver that long ago made a commitment to wheelchair access and to a degree birthed a nationwide movement for inclusion. Indeed, my first trip on the Denver mass transit system will be to Colfax and Broadway where there is a memorial to the so called "Gang of 19". In July 1978, months after I was paralyzed, people put their bodies on the line and demanded equal access. That demand is a reality in Denver. Moving west feels pretty fine today.