Stupid Ideas that Ignore Real Problems

Travel when one uses a wheelchair is needless difficult. Airlines are rude to all people but the industry has a deeply ingrained bias against all people with a disability--especially those such as myself that are paralyzed and use a wheelchair.  More generally, accessing any form of mass transit is inherently difficult for most people with a disability. As one who has traveled a lot in the last four months it is easy to conclude the vast majority of people who are not disabled or know nothing about disability either do not care or are at best disinterested. Not my problem I suspect is the prevailing sentiment. In this void a market exists for designers. How can a wheelchair be changed to fit the existing world constructed for bipedal people? Well, the most recent silly and useless invention that has been floating around the internet for a while is the folding wheelchair wheel.

 
This folding wheel is being hailed by many. Apparently people with a disability were very vocal and interested in a folding wheel. I do not know any of these vocal people. Indeed, I have sent a photograph of the folding wheelchair wheel to my paralyzed brethren. All thought the idea it was useless and failed to address the real problems we encounter when trying to access a plane, train or bus. Regardless, proponents of the folding wheelchair wheel state:

Getting from A to B in a wheelchair is enough of a challenge in itself, without considering the hassle of stowing the chair away each time its user wishes to travel by car, plane, or train. The Morph Wheel aims to make life a little easier in this regard, by providing a wheelchair wheel which folds into almost half its original size.

Not considered: Why is traveling for people that use a wheelchair a challenge? It is a challenge because the presence of people with a disability is an odorous burden to the airline industry. A folding wheelchair wheel takes up less space. It supposedly fits in the onboard luggage bins of an airplane or under a seat. This is great but I sincerely doubt time pressed and dare i say hostile airline employees will let a person with a disability put the wheels under a seat or in a luggage bin. Honestly, can you imagine showing up with this large black bag at an airplane gate and expect a positive reaction? 

How exactly am I going to get the not so small wheels depicted in the over head luggage bin? A friendly airline and helpful employee? I doubt it. The assumption here is that no person such as myself could fly from point A to point B alone. What about the wheelchair frame. Where is that going? Not under the seat. In the luggage bin? Not a chance. Oh, and forget a carry on bag. One to a customer.  This invention creates as many problems as it supposedly solved.

What draws my ire is the praise the folding wheelchair wheel is getting. Technology types and designers are lauding it as being a remarkable and important invention. This is not a surprise to me. History is littered with bad ideas and even worse designs that are supposedly wonderful for people with a disability. Rampant anti disability bias is the real issue. The problem is social. My presence is unexpected and unwanted. I take up too much space in a word designed for bipedal people. The answer is not to change whatever adaptive device I use but rather construct a social and physical environment in which all people with a disability are valued. Twenty-three years post ADA physical access remains an afterthought. The lack of logical and flawless inclusion has social consequences. I do not navigate throughout an airline terminal easily. I do not enter a building up a set of steps. I get into buildings through side doors or worse. Much symbolism is involved here. It is easy to conclude my presence is unwanted. And that my friends is  a social failure all the folding wheelchair wheels in the world cannot solve. 

The SDS Has a Problem: Will they Respond?

I am not a fan of the SDS (Society for Disability Studies). I should enjoy going to SDS meetings but I do not. I have been to two SDS meetings and did not enjoy either meeting. The meetings completely and utterly fielded to resonate with me. I know people who are actively involved in the SDS and I respect the fact they get much out of their involvement. I am not one of these people. In fat I am very critical of the SDS and two years ago I took the SDS to task on this blog. See: http://badcripple.blogspot.com/2010/05/academic-conferences-who-can-afford-to.html

Two critical essays about the SDS have been published in the Feminist Wire in the last few days. The most recent article by Corbett Joan O'Toole is devastating.  See: http://thefeministwire.com/2013/11/op-ed-cha-ching-economic-barriers-in-disability-studies/ O'Toole's essay is devastating because it is so basic. All you need to know is the basic math:

Conference registration: $230

Hotel room (3 nights at $159 * 17% for tax and lodging fees): $558

Airfare (roundtrip): $325

Transportation from airport to hotel (round trip): $54

Food (hotel restaurant per day * 3 days minus conference meals): $90

Required costs for this conference: $ 1,257

These are conservative numbers, particularly the food costs.  But often that is the only place where I can cut costs. So when I attend a conference, I eat as little as possible outside of meals covered by registration, and I bring food containers from home to save part of each meal to eat later. On the first day I find a local store and purchase drinks and nonperishable food to stretch my money.  Hotels are rarely near grocery stores so I am usually paying for overpriced, highly processed foods.

I do this not because I want to. I do this because I am poor. I am a Disability Studies scholar. And like many other disabled scholars, I am poor. I receive $1,100 a month in government benefits and a pension from when I worked.  Soon my pension ends and I will live on $810 per month.

There is no need to read the rest of O'Toole's essay. The economic reality cannot be ignored. Adaptive sport programs encounter the same problem as the SDS: it is extremely expensive to participate. I would speculate the SDS and a typical adaptive sort center is beyond the budget of 90% of all people with a disability. Both the SDS and adaptive sport programs have the same response to economic reality: scholarships are available. Sorry but no. A scholarship is of no help to most people with a disability whose primary concern is putting food on the table and paying rent. To participate costs money. To participate involves transportation.  When one lives on $810 a month as O'Toole does the SDS or a adaptive sport program is a pipe dream. O'Toole calls this a "dirty little secret". I call it exploitation. The SDS exploits the very people it studies and supposedly advocates for. But there is very little advocating going on at the SDS. Indeed, the only advocating I have seen in my limited exposure is individual career advocacy. This is a nasty mean spirited comment. It is also true.  We are talking about the tacit acceptance of economic gate keeping. O'Toole calls this economic ableism. Ouch! We are talking about class. Only the privileged and elite can afford to attend the SDS. Those with tenure, those who hope to get tenure, and those that want to enter the field participate. The people who do not attend accurately represent the disability norm. Poor, unemployed, socially isolated, economically deprived. In a word, disenfranchised. O'Toole who really nails it when she concluded: 

When economic barriers create a Disability Studies without a majority of publicly identified disabled people, it is an oppressive enigma wrapped in a conundrum hidden beneath a patina of deceit.

It is not often I can say this: I wish I wrote those words. I am sure the SDS leadership is not happy. I am sure they will correctly state we are a professional organization, all such organizations must charge fees and we do more than most to provide scholarships and be inclusive. Hell, I bet an SDS committee is being formed. Meetings will be held. A response will be drafted. Blah, blah, blah, blah... The real problem with the SDS is it has no soul. Forget the famed SDS dance. Forget activism. The SDS is an intellectually isolated silo. The SDS is a social and academic network that is devoid of interest or relevance to the vast majority of people with disability. This is a disgrace. Paul Longmore would be horrified. Ed Roberts would be appalled. Longmore's work went well beyond disabilities studies scholarship. His work was rooted in activism and he railed against the social and economic forces that oppress people with a disability. He was the soul of the disability rights movement. Hey, this is not an original observation. Look at the cover of Longmore's classic Why I Burned My Book. This is John Hockeberry's line. 

John Kelly, a real activist and scholar who I deeply respect, asked me today what can be done. I pessimistically replied nothing. I observed online formats will not work because people are inherently social. We need to see and meet each other--break bread and share a meal.  There must be a solution. Here is what I propose. I suggest we create a nation disability rights day. We can call on each and every independent living center, disabilities studies program, national organizations such as ADAPT, NDY, DREDF, and many more. All people with a disability meet and advocate. Practice various forms of civil disobedience. Be confrontational. Be direct. Support those with no support. Go to a nursing home. Go to a group home. Support those with no support. Do not do this for your career. Do this because it is is the right thing to do. Do this because your life depends upon it.  Even a grim man can dream. 

Wise Words When One Enters the World of Disability

Fear is a primal emotion. Many people fear disability. We crippled people as all know are the only minority group one can join against our will. All humans are one physical accident away from being crippled. Examples, tragic examples, abound. The paralyzed bride. The paralyzed architect who dedicates his life to walking again via the exoskeleton after a crane falls on him. The elderly who have a stroke. People with diabetes that lose a limb. People who experience an industrial accident and are blinded. The human body is frail. Everyone knows this. Adults and children know they can be hurt. The land of disability is one mishap away from reality. There is good reason to be fearful of disability. I see this enacted in a myriad of ways. Stares. Always the stares. Outright bigotry, not common place, but it exists. "I would rather be dead than paralyzed". I have heard this many times. Subtle thoughtless reactions to my presence. Mothers in the supermarket grab their kids hand and whisper "Watch out for that man". Thanks, a lesson has been learned. Fear all who use a wheelchair.

None of the above is new ground. Social scientists have observed and analyzed why people fear the crippled for decades. I have experienced prolonged social isolation that is the companion of fear. No one wants to be around socially polluted people and polluted I am. My presence creates a symbolic stink. A spectacle can and often does follow me as I navigate a hostile world. I enter a posh New Haven, CT hotel through a locked lift next to the steps. I enter the hotel via the baggage room. People stop and stare. I go to a minor league hockey game with my son. We observe a group of people with obvious cognitive disabilities. By the time the game is five minutes old every person seating next to these men and women have moved to different seats.  This group, tightly knit, is surrounded by a sea of empty seats. On the drive home my son falls asleep and I cry. Did those that moved know they were cruel bigots?

The fear of disability is not as prevalent in my life as it once was. I am aging into normalcy. A white middle aged man using a wheelchair is not as much a social affront as an 18 yearly male or female using a wheelchair. People assume I had a "regular" life and experienced a tragic accident as a mature adult. This misconception makes the ignorant feel better. Hence they gasp when and if they learn the truth. I have been paralyzed more than 35 years. Oh my God! Tragedy! Horror! And silently fear. Such people slink away from me unable to cope with my reality. What people do not get is just how oppressive being crippled is. Eva Kittay calls the social work and required social navigation skills needed to lead an ordinary life emotional labor. People like me who use a wheelchair are always trying to sooth the disruption our presence causes. Sure I will go in the back door. Of course I do not mind using a wheelchair lift filled with trash. No accessible bathroom? No problem. I will dehydrate myself. When I fly I will be the first person on and last off adding a great deal of time to my trip. I am expected not to mind. I am expected to put on a happy face.  Those charged to assist me on and off the plane do not speak english nor do they know what to do. No problem. My job is to educate them. Education. It is always about education.  I have been educating people for a long time. The lessons are not working. I am weary. Over the last few months I have come to the conclusion I will never be equal to others. Bipedal typical others. My presence will always be a disruption. My existence a spectacle. My job from now until I die will involve heavy lifting. The emotional labor is overwhelming.  It is in fact deeply depressing. I yearn to be normal. To go out the door like any other person and not feel as though the weight of the world is on my shoulders. I am not a person. I am the representation of all crippled people who use a wheelchair. If I am tired and cranky, have a negative experience with a typical person, the lesson learned is all people like me are mad at the world. Sorry but no. I am not mad at anyone. I am tired. I would like to be treated with a modicum of respect. I would hope people, 23 years after the ADA was passed into law, considered equal access a civil right. This is not the case. I have no reason to believe the required leap in logic to a civil rights thought process will ever take place.

The mere presence of people with disabilities is a social problem that defies a solution. It is not a shock to me but it is to others when they enter into the world of disability. Victoria Brownworth, an award winning write and journalist recently wrote about her entry into the world of disability in the Advocate. Link: http://www.advocate.com/commentary/coming-out/2013/10/11/coming-out-asdisabled

Ableism, like homophobia, is a thing. It pervades our entire society. The Americans With Disabilities Act is an unreliable farce, and those of us who are disabled — one in five — must battle with employers and landlords, doctors and health insurance companies to get what we need. We have to be activists whether we want to be or not, and yet all the while we must do our best to hide who we really are from those on whom we depend for survival. But if one in five of us is disabled, that means everyone knows someone with a disability. Every family has one of us, every workplace, every school, every friend. We are everywhere. But is disability addressed in any community — LGBT or any other — or are we shunted aside as much in 2013 as we were centuries ago, kept out of institutions by recent laws, but not by attitudes?

One in five LGBT people has a disability. Do we even think about it as a community, other than to pay lip service to the term "ableism"? I have a friend on Twitter — a trans woman with cerebral palsy — who I would never know was disabled from her exchanges. But I know, because I’ve experienced this myself, that when she goes out in her wheelchair, she’s treated as if she’s not really there. Her smart, witty, articulate self is obliterated by people seeing only the disability. People speak to the person pushing your chair, as if you’ve been rendered mute. I haven’t been rendered mute. Ableism is the last and perhaps most formidable ism we have to address in our society. Our fear, as a culture, of the sick and disabled is not much evolved since the Middle Ages. We no longer warehouse the disabled, but we still want to. We still want to keep the different bodies out of our line of vision, because disability feels foreign to us, and frightening — perhaps because we know it could be us next. So this is me coming out crip. I never thought I’d be disabled until I was. The issues surrounding disability are huge and touch all of us, so none of us can afford to ignore them.

All of us will be touched by disability. None are unaffected. I wonder when this human rights issue will hit the front page. I wonder when will disability based activism be valued. I wonder when will disability studies scholars start advocating for those they study and dare I saw exploit.  Of one thing I am sure. I will never see or experience the equality that has eluded me since I last stood up as an 18 year old man. Grim thoughts on a lovely though cold day.