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Friday, June 12, 2015

What Does Accessible Mean? Not Much

I like where I live. The town I reside in is largely inaccessible and town power brokers detest the push for wheelchair access. I have heard many local people state that town buildings are more important than people. What I like is what everyone likes--the town is picture perfect and its location on a lake make it a great place to live and work. There are also great parks nearby and I am not too far from Syracuse campus. The draw is understandable. Yet I am thinking about moving. Why move?  Flooding is an issue that must be addressed. It has been three months of repeated spring flooding that will be addressed July. For now, my floor remains a concrete slab. The fridge is terrible and I have lost a lot of good food as it does not stay consistently cold enough. Three of the four burners on the cook top do not work properly. There is no oven beyond my toaster oven. There is no washer dryer (the local laundromat is expensive and a social adventure). The drive way is very steep. I get a serious work out getting in and out of my wheelchair. In terms of my day to day existence, where I live is a logistical challenge.

I have been looking around for a new place. This search is frustrating. Living in down town Syracuse or within walking distance of the university is not an option. Houses in the area are old and not remotely accessible. The larger homes near campus have been cut up into small rental units. Students abound as do the elderly. For practical reasons I get why many people who use a wheelchair would not live in this area. It is bitterly cold in the winter I am in the snow belt. It is also too expensive to live in most nice areas. The slums of Syracuse are dangerous. Crime and poverty abound. What draws me here? The university. I am also drawn to the winter weather. I love the cold and snow. I love the long harsh winters.  Central New York is gorgeous and the locally grown food is spectacular.  Corn season is a joy and small farms abound.

Back to my search for a new place. I have looked on line and taken to the road. I have looked at dozens of places. Almost all rental units are inaccessible in one form or another. I have gotten good at filtering out the grossly inaccessible rentals. Google maps is a time saver of epic proportions. I now reduce my search to units listed as "wheelchair accessible". This eliminates about 97% of rentals. I have quickly learned that even those listed as "wheelchair accessible" are not in fact accessible at all. Most of these units have what I would call "old people access". The assumption is a person has limited mobility. I visited such a unit the other day and had a remarkable conversation I cannot get out of my head.

Here is the "wheelchair accessible" unit.

Based on my experience, this is the norm when an apartment is listed as "wheelchair accessible". When I balked and stated the entrance was far from wheelchair accessible the person I met was perplexed. He said "Just walk up the steps and I will carry the wheelchair for you". I replied "I cannot walk at all". The man appeared stunned. In recent years I have heard variations of his reply. Once the man regained his composure he asked: "Can't you walk just a little bit". I replied "no". I could see this man was thinking hard. "Well", he said. "I think we can find someone to carry you in and out when you need to of out". Now I am stunned. I state "That will will not work and is against the law".  He mumbles something about lawyers and asked me if  I was new to the area? I reply "no". He looked even more perplexed. "You must be new to the area. You could not live here in the winter." I replied "I have lived through two Syracuse winters without problems". He now looks around as though he is being pranked. He tells me "That is not possible. No one using a wheelchair and unable to walk could survive the winter". I thank him for his time, assert the entrance is not accessible, and it should not be listed as such. I then wished him well. He stared at me in disbelief as I got into my car.

The above exchange was out of the norm.  However, it did highlight a few things for me. First, establishing a sociopolitical link with elderly people is impossible or will at best take decades to form. The elderly fear disability and many struggle with adapting to long term deficits. The elderly do not embrace disability as an identity or perceived themselves to be an oppressed minority group. Their standards for access assume a limited degree of mobility exists. The lack of mobility is linked to a lower quality of life. Second, few rental agencies or people privately renting out an apartment know a thing about access. Many so called "wheelchair accessible" units are not remotely accessible. Many rentals advertise an "accessible room" or "grand parent suite". This usually entails a basement room accessed from the back yard and is as a result accessible in the summer. There is no accessible bathroom or kitchen. Again, the assumption is the elderly person has some mobility and will only visit for short periods of time. Third, people are clueless as to what is accessible is. Thanks to the media one and all assume any adaptations costs a fortune. Ignorance abounds and accessible is solved by creating handicapped parking with the blue wheelchair logo. Yes, access can be resolved with some blue paint and a sign. No one it seems thinks beyond the paring lot. Fourth, disability is individualized. The lack of access is dealt with on a case by case basis. People with a disability are not an oppressed minority group but rather a problem. When I frame disability as a matter of civil rights most people with no experience with disability get angry or tell me I am an extremist.

I doubt I will move. The more I look at other places where I live is looks better by the day. What gets me is the ignorance. I want to know why, 25 years post ADA, people do not know and complain about barriers to housing, mass transportation and employment. What do our secondary schools teach about disability? My gut reaction is not much of anything. I fear what kids and adults soak up culturally is that disability is bad if not a tragedy. Segregation in the form of education, transportation, and housing is acceptable. Special education kids get shunted off to the special short bus and educated in resource rooms. Adults think equal access is too costly and ugly. Budgets are limited and we must do what is best for the largest number of students. Oh, I have heard this a million times. The net result is in area like Syracuse wheelchair access is an after thought. If someone does ask about access we, out of the goodness of our souls, will provide that highly unusual individual with a means of entry or inclusion--provided it does not cost too much. The net result 25 years after the ADA was passed into law is that 97% of housing in the Syracuse area is not accessible. I have damn good reason to be angry and I object. The current lack of housing options is unacceptable.  I just wish others, bipedal others, cared. A few do of course but not many.

Thursday, June 11, 2015

On Liminality

I have not been posting as much as I once did. This is due to the fact in recent months I have been weary. I am weary of being different. The social response to my existence is rarely if ever positive. My body is well out of the norm. I have a profound and sweeping scoliosis. I have long hair I keep in a pony tail. I have a tattoo. I am almost always the only person present that uses a wheelchair. Strangers say incredibly stupid and nasty things to me on a regular basis. Christians want to save my soul or assert I am being punished for mortal sins my parents committed. I have even been deemed the anti-Christ more than once. Health food junkies insist I could be cured if I took a rare vitamin mixture only they know of. Some of these people will whisper in my ear "I promise it works. I was once crippled too". Gym rats insist they have an exercise routine that will spark my muscle memory and get me walking again. These social responses to my presence, especially to my body, bother me. I am not a target of opportunity but rather a human being. I am rarely treated with respect. My presence for many is a shock. I get praised for doing the mundane. Perhaps the intent of strangers is good (I highly doubt this) but I do not want to hear it. In my estimation the strangers that accost me are not charitable or kind. Their intent is to separate me from the heard of humanity. Once separated I am left for the wolves.  The wolves come in the form of men like Peter Singer and Jeff McMcMahn who think severely disabled infants or people who experience a high level spinal cord injury should be allowed to die. The wolves also include multiple groups that support assisted suicide legislation.

The wolves are everywhere. I am surrounded by packs of wolves and I worry for others like me. Wolves do not think I share the same civil rights as others--others meaning all those with a typical body. Bodies that are clearly not physically disabled in some way. Having a different body in the words of Robert Murphy, author of the Body Silent results in estrangement.  Post disability life he wrote left him "somewhat apart from American culture, making me in many ways a stranger. And with this estrangement has come a greater urge to penetrate the veneer of cultural differences and reach an understanding of the underlying unity of all human experience".  I read these words in 1987, nine years after being paralyzed. These words and the Body Silent changed my life. I was not the problem--a revelation to me at the time. I was, as were all people with a disability, liminal members society. We were betwixt and between in the estimation of Visitor Turner. Murphy noted that "The long-term physically impaired are neither sick nor well, neither dead nor alive, neither out of society nor wholly in it. They are human beings but their bodies are warped or malfunctioning, leaving their full humanity in doubt. They are not ill, for illness is transitional to wither death of recovery... The sick person lives in a sate of social suspension until her or she gets better.  The disabled spend a lifetime in a similar suspended state. They are neither fish nor fowl; they exist in partial isolation from society as undefined, ambiguous people.

Society has changed since Murphy wrote about liminality and disability. In the 1980s people with a disability were indeed liminal members of society. We had no place. We had no rights. Our presence was an odious burden. We were barred from public schools and most universities. Our mere presence too upsetting for others, especially children (as a morbidly sick boy my siblings were never  allowed to visit me in the hospital). Fast forward to 2015. I believe we are no longer liminal members of society. We are something much worse. We are targets of opportunity. Our existence is fodder for philosophical discussion--paging Peter Singer and other utilitarian philosophers who are all too happy  to speculate if our lives are life worth living. I would contend liminality and disability have changed in that we are too numerous and expensive. We are no longer a statistical anomaly. As such, we represent a serious drain on health care dollars and the social safety net. Every request for support however large or small is met with skepticism.  We are kept on the razor edge of social and financial oblivion. If we fall off the face of the earth we will not be missed. In 2006 Alice Dreger has described what I would call liminality for the modern age: "Liminal", from "limen", "the threshold of a physiological or psychological response". And this is how you know you've found someone in a liminal state: you feel in yourself in that physiological and psychological response. The heightened visual sense, the whirring gears in your head, the lava flow in your guy. You know they are on the limit because you are suddenly there with them. All a-twitter. Oh how I feel this often. A seemingly nice person engages me and I know they will drop a degrading word bomb such as "It is so good to see you out".  The hairs on the back of my neck go up, my heart races, and I cannot disengage fast enough. Sometimes I am successful but not always. What I do know is that a demeaning effort is often used to denigrate my very existence. It is part social dominance with a dose of liminality. My existence is acknowledged and quickly determined to have no redeeming value. I have struggled with this since I was 18 years old. I have not had a place in society for my entire adult life. Worse, the last forty years of legislation designed to empower people with a disability is resented in a myriad of ways. The ADA, for example, has been met with stiff opposition and deemed an unfunded Federal mandate. I think liminality circa 1987 that Murphy eloquently utilized as a means of social analysis and critique was safe and insightful. Today, I am just fearful. Fearful of kind, caring others who will make the decision my life has no value and out of the goodness of their souls end my suffering or ship me off to a place out of sight and out of mind. If one thinks I am being alarmist I suggest a trip to the library and read some disability history. The past is grim as is the present.