Friday, May 23, 2014
Exiled to Special Places is a line from Harriet McBryde Johnson’s classic essay the “Disability Gulag” published by the New York Times in 2003. It is a brilliant piece of writing. Johnson could be folksy, touching, legalistic, academic, charming, and pointed all in one short paragraph. I have been thinking of Johnson all week. Like many other people with a disability I live, work, and travel differently. Each and every time I travel or go to a large ceremonial event I am reminded I live in the metaphorical disability gulag: that is we are apart from others, typical others, the physical and social environment was built for. We people with a disability are thought to be powerless and dependent. Our presence is not wanted. Our bodies are a tragic reminder of the way life can go long. Hence institutions were built and staffed to care us—this is our history, one of social isolation, abuse, and segregation. We people with a disability are “special”. We are needy and society has a choice—out of the goodness of our collective hearts we will make the physical environment accessible; with the ever present proviso if it does not cost too much. Yes the disability gulag is a real place. It exists metaphorically and physically. Last week when I attended my son’s graduation from Hofstra University where I was put in a very real and demeaning gulag called “special needs seating”.
Before I attended my son’s graduation ceremony I was worried. The information on the Hofstra website about commencement was badly dated. I emailed and called the commencement office. No reply. I asked my son to stop by the commencement office and ask about wheelchair access. The office location listed was incorrect. No one knew where or if a commencement office existed. I was tense and worried when I read the below:
Special Needs for Seating
David S. Mack Sports and Exhibition Complex Accessibility: This facility is wheelchair accessible on the main level and will be available for guests requiring this area. One family member may accompany those with special needs in this area during the ceremony. Upon entrance to the Arena, please contact an usher who will be happy to escort you.
It was my hope the above drop down tab from the commencement website page was wrong. Based on 30+ years of experience, I assume when I read an antiquated statement about “special needs for seating" that I am screwed. Do not worry I told myself. Hofstra has a long legacy of being extremely progressive in disability rights and disability access. When I was a student at Hofstra (1978-1982) the professed goal of the university was to make the campus 100% accessible. I was a founding member of the Program for the Higher Education of the Disabled or PHED in 1978—an acronym I hated then and now. Have faith I told my son and ex-wife. Hofstra was at the forefront of disability access well before the ADA was conceived. They will not force us into a disability gulag. They will not enforce the discriminatory practice of one wheelchair, one “companion”. There will be dispersed seating and we will have a host of options like all other who walk in the door. I was wrong. I was firmly placed in a real life disability gulag.
I was escorted to a wide aisle. I was sure to be bumped and jostled every time a person walked by. My view left much to be desired.
Who gets to sit in the aisle for special seating? Me and other undesirables. Largely gray haired old ladies and people such as myself. I was stunned. I was not impressed. Is this where any human being would want to sit? This is not where i would want my mother or grand parents to sit. But I might be wrong--out of sight and out of mind. The legacy of exclusion thrives to this day. Dump the undesirables in the aisle.
There is a speakers podium. I could see it if I bent over or moved back--far back into the wide aisle. Yes, the bar placement is perfectly placed to be at eye level. The ushers were polite but clueless. I told them this was unacceptable. They agreed. Nothing could be done. Sorry. No effort was made to help me. Help as in find a place for me and one companion to sit that did not have an obstructed view. I was furious but did not want to ruin the day for my son. I thought about leaving in protest but that would accomplish nothing. I sat and seethed in anger. What made me so angry was the fact that it would be very easy to provide dispersed special seating. There was an elevator that went to stage level and seating above me. Any number of areas would work well. There was plenty of space. The failure was not architectural. Not a single person put serious thought into inclusion. Special seating is a problem. The easy solution, the thoughtless solution, is to make two large areas on the main floor with an obstructed view and call it a day. Who cares? No one. Does it matter that Grandma cannot see the podium? No. Did anyone think perhaps a paralyzed man such as myself would be present whose son was graduating and would like to see him walk across the stage? No. Hofstra as an institution failed. They built a disability gulag. One and all should be ashamed. Do not give me the worn out excuse that the facility is old. The Mack Sports Complex was built in 1998--the post ADA era. No excuses here. None.
As I sat and seethed I finally thought screw this. I navigated my way to the elevator and was going to sit where I wanted. A place where I could see my son walk across the stage and even see the podium where people would speak. I went down the elevator and as I did the the academic precession was organized and ready to march in. I moved to a good spot, in the back but with an unobstructed view. I was quickly told: 'You cannot sit here. We cannot accommodate your special needs". I replied "I am not a child, special needs seating is unacceptable and you will accommodate me here. My son is graduating". The social interaction was tense. The ceremony was about to begin. A scene could erupt. I suggested that I could accost the President of the university for his opinion as he was about 15 few feet away. The usher knew I was not going to move. I was an uppity cripple and the timing was bad. The show had to start and the easy way to solve the problem, my existence, was to do nothing. The usher did nothing.
As I sat and listened to the speakers who were mercifully brief I thought about the unwanted above me. My people were getting screwed. Needlessly screwed too. I thought of the slogan "nothing about us without us" and "our home not nursing homes". I thought of Johnson who wrote:
We know better. Integrated into communities, we ride the city bus or our own cars instead of medical transportation. We enjoy friends instead of recreational therapy. We get our food from supermarkets instead of from dietitians. We go to work instead of to day programs. Our needs become less "special" and more like the ordinary needs that are routinely met in society. In freedom, we can do our bit to meet the needs of others. We might prove too valuable to be put away.
Despite 40 years of progressive legislation aimed at empowering people with a disability remain disenfranchised. I am sure not a single person that attended the graduation ceremony that walked by special needs seating gave it a second thought. Why are so many elderly people and wheelchair users jammed into two spots? The answer is simple: it is the symbolic representation of a century of oppression.
As I made a very long drive home yesterday I was torn. I am weary of access always being a problem. Nothing is ever simple. Not even graduation at a university such as Hofstra that has an outstanding reputation in terms of disability rights. I grew depressed this morning util I took a short break and discovered I am not a lone. I am not the lone voice in the wilderness crying out. Stephen Kuusisto wrote:
if you were a person with a disability at Iowa’s commencement and you desired a seat, perhaps with your family, you were out of luck. One of the reasons I left the U of Iowa was the institutions general and ubiquitous unconcern for people with disabilities. The disability seating in the “Carver Hawkeye Arena” is pre-ADA seating, at the top of the stadium; so far from the action you might as well stay home... Hofstra’s commencement was every bit as disgraceful as Iowa’s arrangement. Now this isn’t a scientific sampling. Two parents with disabilities, two campuses, but ask yourself about academic culture and disability. Iowa’s student services office for disabilities is located in the basement of a dormitory where people with wheelchairs can’t in fact “get out” if there’s a power failure. The architectural and administrative message couldn’t be clearer: disability is a ghetto; its marginalized; its not important for the able bodied general administrative population to think about. Link: http://www.stephenkuusisto.com/uncategorized/disability-and-the-end-of-another-academic-year
Shame on Iowa. Shame on Hofstra. Shame on academia for being just as discriminatory as mainstream society. I expect much more from Ivory Tower culture. Sadly, I am routinely disappointed. But I refuse to to be silent. I will not be meek. And I will not let this issue drop. I am going rattle some cages at Hofstra next week. I did not let the lack of access ruin my son's day. I am proud and chuckle that somewhere along the line I spawned an adult I am proud of my boy.