Disabled Bodies

Two days ago I read an interesting post at Crip Confessions. The post was titled "But Won't You be Ashamed? or Cripping Pasties". Link: http://cripconfessions.com/archives/2339  A little background is needed. The author is going to the 2016 AVN Expo and Awards in Las Vegas. Essentially she is attending the "Oscars of Porn".  What struck me as thought provoking was the following paragraph:  

Much talk of clothes and the like have provoked side conversations coming up, including one that included the title query. I have been very open about my plan to wear pasties and frolic. I explained this to an acquaintance, and one of their first questions to me was “Won’t you be ashamed?” They were baffled I would have the audacity to wear pasties generally, and especially among porn stars – who include those with medically sculpted bodies toward social beauty, rather than away like my medically enhanced body.

I will leave aside the issue of wearing pasties to make a more general point about disabled bodies. It is hard to appreciate the unique beauty associated with disabled bodies. To be more specific, it is hard for me to appreciate my body. Nearly 40 years of paralysis has taken a toll on my body and aging has not helped. I have surgical scars on my back; long railroad tracks that go from the top of my neck to the crack of my bottom.  I have another surgical scar on my hip. I have an ugly scar on my hip where I had a significant wound that nearly took my life. My left hip is dislocated and is a few inches shorter than my right leg. I have a sweeping and profound scoliosis. My fused spine has started to cork screw to the right. I suspect my hearing is deteriorating. I wear glasses and am profoundly near sighted. My body has been profoundly altered by time, surgery, and the natural aging process. Disability is a cruel in its glacial ability to change the human form. I know why people stare at me. Most people with an atypical body will understand the implication of those stares. Back to Crip Confessions:

With OI, I have a protruding sternum (which is its own sexual aid, but that’s a story for another day) in between my asymmetrical breasts that are, as one OI stated, east west boobs. Instead of pointing forward, they point to the sides. I’m fat. I’m compact in the core, and have relatively small extremities in comparison to my core. I have a short neck. My hair is in a middle stage of growing out, so a bit meh. And I’m not awesome with make-up. I use a wheelchair and will have a weirdo little service dog in tow. I’m likely missing other aspects of my body that they might be thinking; regardless the point is I’m not a typical person or a body-beautiful human.

I am assume OI is Osteogenesis Imperfecta. The disablement here is not relevant. The important thing I share with the writer is the fact I love my body. She truly loves her body. I truly love my body. This should be the mantra of all people with a disability. Again, back to Crip Confessions:

I love my body, even when it’s in pain or falling apart at times. Surely, it’s not every day that I see beauty but I damn sure try to shed the weight of internalized ableism. I deserve embracing my body, after too many years covering up myself in baggy clothes. I have spent so many years beating myself up about my body not conforming to standards of typicality.

Internalized ableism is deeply ingrained in our collective conscious. I know this because like all people I have internalized ableism. My ableist bias comes out when I least expect it. I look across campus and see a guy traversing campus in a wheelchair and silently think "that guy is screwed". My next thought is an amused sort of internal mocking. Once in a great while I wake up and see my wheelchair and think "what the hell is a wheelchair doing next to my bed". I then shake my head and think where did that come from. When these sort of ideas spring to the fore I think of Robert F. Murphy and his book the Body Silent. I know the books dedication by heart:

This book is dedicated
to all those that cannot walk--
and instead try to fly

My paralyzed body has empowered me to lead a very different sort of life. I have tried very hard to fly. My metaphorical effort to fly has hit many a speed bump. I have experienced things that no typical bipedal person could understand. I have flown over ableist bias with grace and dignity. I have also been hit by the same bias and been thoroughly beaten. Through good times and bad my body has endured. It has served me well. I would love to think my body has been medically enhanced for the alternative is decidedly unhealthy. Negative body imagery is what far too many women endure. In theory I have a healthy perception of my body. I understand I am different. I adapted to paralysis long ago. It is just part of life. Despite the love I have for my body I have a confession to make. I do not like to look at my body. You will not find a mirror on the wall in my home. My image reminds me of being the other, a fact when I am in the comfort of my own home I choose to ignore.

Teasing and Joking about Ableism

My son has spent the last week with me. It has been, let us say, an adjustment. I am not sure which of us has adjusted more or less. Truth be told, he is an easy person to live with. I cannot say the same about myself. The good news is he has found a nice place to live close to Syracuse campus at an affordable price. He is confident he can find a job and has had an interview already. His master plan is fluid and ill defined. Ah, the life of an unattached 23 year old man with no ties or debt. I have truly enjoyed the last seven days despite the fact my son has tripled my food bill. In return I have exploited him. He carries groceries and the laundry. He fills my gas tank. He gets my wheelchair in and out of the car. He gives me a push up the driveway and other steep hills. He walks my dog Kate. He reaches stuff that is hard for me to reach. My gosh being bipedal is convenient. He saves me time, oceans of time.

Yesterday as we did typical errands and it dawned on me that I have not had a single skewed social interaction. Over a week has passed and not once have I been demeaned. No stranger has harassed me at the laundromat. No one has prayed over me. No stranger has asked rude or intrusive questions. No one has offered to "help" me do the ordinary. Essentially there is no more "show" to use the words Steve Kuusisto used today. When one has a visible disability or atypical body you are the other. You are different and your existence draws attention and stares. The show cannot be avoided when Kuusisto or I leave the safety of our homes. He wrote:

When I think more deeply about this I think in terms of history. I belong to the first generation of public disabled. We’re not in the institutions. The laws of the land welcome us. Of course I’ll be stared at. 100 years from now, when everyone will have wild looking quasi-electronic rubberized appendages attached to their bodies this era will seem like ancient history. I hope for that. Link: http://stephenkuusisto.com/2016/01/17/more-about-being-blind-in-the-seven-eleven/

The reason for this is simple: I have been with my typical bipedal son. When accompanied by a well over 6ft tall young man I blend in. Remarkable. It appears as though my existence is socially acceptable if I am not alone. Perhaps others assume my son is my aide? Or is it my new look? No more pony tail. This bad cripple has a buzz cut and bushy snow white beard. Nothing else aside from the presence of my son has changed.  When I woke up this morning I was angry in large part because I feel asleep thinking of how different my social interactions are when I am accompanied by my son. Twenty-five years post ADA the presence of a lone crippled man remains socially unacceptable. This is a depressing and illustrates  that the social stigma associated with wheelchair use clings to this day.

To adapt to life with my son we have spent much time joking around. My humor of choice is sarcasm and teasing. This week I have enjoyed teasing my son. We have spoken a good deal about ableism. As a boy he told the word ableism was useless. He told me no one kew what the word meant and the people who did understand it already grasped the importance of disability rights. Fast forward a decade and he now thinks the word has a place. Apparently he read my post about the Mighty and told me the Mighty is ableism on steroids. He asked me "who actually reads this crap and believes the sappy drivel they post". Oddly, I tried to defend the Mighty. I spoke about social isolation of people with a disability. I told him to imagine a parent who has a kid with a profound disability and all the typical things that will never do. Think about the parent who knows his or her child will need a lifetime of care and never be physically independent. He thought a bit and told me those parents need to think more. He speculated that any nuanced discussion given the current political climate was utterly absent. Dad, he said, "we live in a time when Donald Trump is a viable  presidential candidate and the truth, substance, is not relevant. The facts are ignored and flat out falsehoods are freely spewed. Trump wants to build a wall at our borders and ban all Muslims. This is bad. I mean it is really bad political and social rhetoric".

Back to ableism and sarcasm. I have been joking with my son about being bipedal. I live in a home. that is not bipedal friendly. I have no couch. My home is stark, it lacks furniture and nothing hangs on the wall. I have a desk where I eat and work. I have a bed. I have a small table next to my bed. I have two chairs. I keep them folded up in a closet. They are Church chairs. One must sit up straight. There is no slouching in my home. My abode is very Calvinist. This is purposeful. I want my bipedal friends to be uncomfortable. Welcome to my world. In the land of disability I rule my tiny domain. My domain is designed for those that use a wheelchair. Screw the bipeds! Of course this does not help my son. To defuse his frustration I have been teasing him about how inspiring he is. As he gets out of the car I stare in awe. "Tom, you are an inspiration! I have never seen a bipedal  man swing his feet out of the car and stand up so easily". I joke "Tom, life must be so hard for you. Bipeds are up and down all day long. You sit and stand. That must be so exhausting. Your legs are so strong. I could never live as a biped. It is just too difficult". When we are walking I tell him "I feel bad for you. Going down hills is so much fun. You will never appreciate the joy I feel as I gain speed. Your life must be hard and miserable". When my son studs his toe I laugh. I tell him "Yet another advantage of using a wheelchair". When shopping and he holds a basket I remark "I bet your hands get tired very fast. Your arms are not as strong as mine." 

The jokes above in the proper context are quite funny. They also serve as a pressure relief valve. There is a lot of testosterone in my little home. As many people my age know, a young person living at home post college graduation is awkward. I consider myself and my son lucky. Without debt, he has a significant advantage over many men and women his age. He has also mastered the art of deadens jobs. He is a superb dish washer. He works at warp speed. He has knife skills. When I ask him to cut anything he does it well and at breath taking speed. He has the stitch scars to prove he has worked in commercial kitchens. What his future holds is unknown. What I do know is that I will cherish this time and by extension his mere normalizing presence. I can actually go out the door without worry about being verbally assaulted. Bipeds have no idea how lucky and dominate they are. But not in my home.

Cripple Radar and Ableism

Ableism is a relatively unknown word outside the disability  rights community. I have tried to the use the word with people unfamiliar with disability. I am frequently stopped and asked what does ableism mean. I give a brief two minute explanation. The reaction is often swift and nasty. I have had people turn on their heels and walk away from me in obvious disgust after explaining what ableism is. I had a friend who listened to what ableism is and said "bull shit". This man never spoke to me again. On the opposite side of the equation, I have had many students think in a new way after discussing the ableism. A small number of friends understand ableism and revise their understanding of what disability entails. What I often wonder about is the polarizing reaction. Why are some people hostile to the word while others are receptive. Virtually no one falls into the mid range. This is important to me and all those, disabled or not, who support disability rights. What I wonder has been instilled in people's minds? I suspect at issue is the many lessons learned about disability that are picked up at a young age. A few examples should suffice:

The mother who pulls their kid's hand in the supermarket and says "watch out for that wheelchair".

The secondary school that transports every child with a disability via one short bus.

Handicapped seating that is substandard and located in one less than ideal place.

The restaurant cripple table. One table is always used to seat a person using a wheelchair. If occupied I am forced to wait despite the fact other tables are available.

Locked accessible changing rooms in clothing stores.

Anything and everything associated with being deemed "special".

 Paratransit systems that invariably provide inferior and unreliable service.

Side, rear, or locked entrances to buildings.

Inaccessible poling stations and voting machines.

The lessons absorbed are clear: segregation of people with a disability is the norm in terms of transportation and housing. We people with a disability are feared. We people with a disability take up too much space. We are in the way of bipedal people. We are different and a person such as myself is wheelchair bound or confined to a wheelchair. For some, this is where the thought process begins and ends. People with a disability are a nuisance and an expensive nuisance. I have been to way too many meetings when the first line item cut from a budget are access issues. Believe me, I get it. I have no place in the built environment constructed for bipedal people. This exclusion plays out in a myriad of different ways. Enter the wolf in sheep clothing. Imagine the overly friendly man or woman who wants to hold a door, help you with your wheelchair, or assist you in some way. The fact no assistance is needed is instantly dismissed. Everyone is kind to the handicapped and I am thereby placed into the ghetto of vulnerable people.  Vulnerable people are not respected. I am on the same playing field as all others whose bodies are somehow different and perceived to be dysfunctional. This brings me back to ableism and a short article I read entitled "Ableist Hostility Disguised as Friendliness". Link: http://realsocialskills.org/post/136885378817/ableist-hostility-disguised-as-friendliness It is rare I see the issue of ableism addressed in a succinct manner bipedal people will not reject. The first paragraph:

Some people relate to people with disabilities in a dangerous and confusing way. They see themselves as helpers, and at first they seem to really like the person. Then the helper suddenly become aggressively hostile, and angry about the disabled person’s limitations or personality (even though they have not changed in any significant way since they started spending time together). Often, this is because the helper expected their wonderful attention to erase all of the person’s limitations, and they get angry when it doesn’t.

Obviously ableism firmly rests on ignorance and the charity model of disability. As described above we people with a  disability have a passive role to play. It is assumed our lives are severely compromised and our quality of life is substandard. To save us and make our day nicer we are expected to be contrite and meek. We are in essence Tiny Tim as described by Charle Dickens. What we have here is a clash of two classes. The bipedal offer of help is based on the assumption they are superior and wealthier beings. We cripples must bow our heads and say "God bless, every one!". When this does not happen bipedal people get angry.

The article concludes:

Sometimes ableist hostility doesn’t look like hostility at first. Sometimes people who are unable or unwilling to respect disabled people seem friendly at first. They try to look past disability, and they interact with an imaginary nondisabled person instead of the real disabled person. They’re kind to the person they’re imagining, even though they find the real person completely unacceptable. Eventually they notice the real person and become openly hostile. The disabled person’s behavior has not changed; the ableist’s perception of it has. 

This is the world people with a disability must navigate. In response, I have cripple radar. I can spot an ableist a mile away. They are ever so eager to help. They ooze the milk of human kindness. Often they are deeply religious. Many want to cure me. Some want to pray for my rotten soul. Others are overly interested in how I was crippled. Some will make a show of getting on one knee so we can have a conversation eye to eye. Ableist are so eager to help me I can see them sprint across a field and become bitterly upset I got my wheelchair together before they could help me. Ableists love humor. I am often asked "how fast can that wheelchair go" or "have the cops ever given you a speeding ticket". 

Avoiding ableists is impossible. Certain environments I avoid at all costs. Any church  regardless of denomination is teeming with ableists. Here little old men and ladies insist on praying for me. Health food stores are equally dangerous. Ableists are desperate to tell how I can be cured. They have a special vitamin routine that cured them and surely if I was open minded enough I too could be cured. Health care facilities are often physically inaccessible. Health care workers can be ableist as well by asking rude and intrusive questions that have absolutely nothing to do with the treatment being delivered. I really do not think a dentist has a need to know why and how I was paralyzed almost four decades ago. 

Raising my son we shared a look when we encountered ableists. We shared a dead pan facial expression, shifted our eyes toward but not directly on the ableist. We would then as discretely avoid the ableist in question. Inadvertently we would enter into an ableist conversation  and make up any excuse to rapidly exit before the verbal assault could be launched.  The consequences of ableism run deep. There are days that I just cannot muster up the necessary psychic energy to go out the door. Of course, this is unhealthy and counter productive. I do my best but sometimes I fail. For example, I no longer take my bike out and ride on the many bike trails near me. In August I went out on an early morning bike ride to avoid the heat. I encountered a man biking in the opposite direction who upon looking at me turned his bike around and tried to stop me. He yelled at me "I have questions about your bike". This went on for about 8 miles before I became so frustrated I stopped. It was quite clear this ableist had no reason to ask me about my bike. He was asking out ofidle curiosity. My time to this ableist had no value. I was public property akin to a freak. I still ride my bike daily. I do this in my home in splendid isolation. Every day I bike I think of this ableist and think its not easy being green to coin the term by Kermit the frog, my favorite protagonist created by Jim Henson. I will bike  on trails again of course. I will never bow to the oppression that surrounds me and other people with a disability. 

Cripping the Mighty

I have on occasion read posts at The Mighty. Recently, an editor at the Mighty contacted me and I allowed the website to post a short version of what I had written about Donald Trump here at Bad Cripple. A link to the original post: http://badcripple.blogspot.com/2015/11/donald-trump-disability-mocking-at-its.html I had serious misgivings posting an edited version of what I had written on the Mighty. I have long believed the vast majority of posts at the Mighty were dreadful. The site itself has always been a mystery to me. They are a well-funded start up with over a dozen paid employees. They do not pay contributors. The site struck me as obsessed with numbers. They claim to have 80 million readers. The tag line is "Real people. Real stories. We face disability, disease, and metal illness together". In reality the Mighty draws on two different audiences: first, it is a site for parents of children with disabilities and complex medical needs to vent their frustrations and seek support. Second, it relies heavily on inspiration porn to draw readers who know nothing about disability. A third readership exists. A small minority of people with a disability in an effort of good will try to express the importance of disability rights. In my opinion, this minimal nod to disability rights exists for one reason--it negates a disability rights critique of the Mighty. The bottom line is the Mighty reinforces well-worn negative tropes, cliches, and stereotypes about disability. Suffice it to say I am not at all impressed.

The Mighty churns out copy at an impressive rate. They have mastered the art of click baiting and, at no cost, vacuuming up posts from the rich world of disability based blogging This is a for profit enterprise whose mission is at odds with the disability rights. The disability rights movement does not resonate among those who know nothing about disability. Disability rights does not generate good will. There are no feel good stories. No one is inspired. Indeed, disability rights is perceived to be a costly and unfunded federal mandate. Institutions such as secondary schools, universities, federal buildings such as post offices and courts should be made accessible. The key word is should. All sorts of myths surround the ADA. Inaccessible buildings can be grand fathered in and are exempt from being made accessible. There is a hazy idea when it comes to access for people with a disability it is a matter of choice. If it does not cost too much then out of the goodness of our souls non disabled people will make access possible for people with a disability. All this, of course, is wildly wrong. Enter the Mighty to fill the void and make non-disabled people feel better.

People with a disability tolerated the Mighty. It bothered us. I read the Mighty infrequently and its existence did not bother me. I have seen first hand how hard it is for parents of children with disabilities and complex medical needs to live a life style resembling typical. I have visited various group homes some of which were a disgrace. I know the social supports for people with a disability are being slashed continually and are inadequate. I read about people with a disability who are reliant on Social Security and the Byzantine rules and regulations that keep people on the edge of poverty. It is a punitive system. As one who travels on a regular basis, I encounter inaccessibility in every city I visit. Inaccessible mass transportation abounds and flying on any airline is a deliberately humiliating process. I check in and out of multiple hotels and motels that are supposedly accessible but are not. Barriers abound, both physical and social. None of this is of concern or of relevance to the Mighty. The word that comes to mind is oblivious. All this changed on December 20 when the Mighty posted "Introducing Meltdown Bingo". The response to this post was swift and angry. I have no doubt the editors at the Mighty were stunned by the response. The post was quickly taken down and an apology posted. Link: http://themighty.com/2015/12/editors-note-why-we-removed-a-story/ The apology only fueled criticism from the disability rights community. Let me be very clear here. The individual who wrote "Introducing Meltdown Bingo" is far from fault. The post, as many have noted, was the straw that broke the camels back. No criticism should pointed to the author. The fault lies squarely with the editorial board at the Mighty. The post in question indicates how estranged the editors are from the disability rights community and the ill will they have been generating for over a year. The editor in chief, Megan Griffo, asked what could the Mighty do better. The Mighty asked for input from people with a disability. They got exactly what they wanted. The response was intense and long simmering animosity spilled out. Things got nasty real fast. I have refrained from expressing my reaction until the last 48 hours. The Washington Post took note of the controversy and has published two articles.

Links: https://www.washingtonpost.com/news/parenting/wp/2016/01/06/writing-for-the-mighty-for-my-son-and-with-my-son/ 

https://www.washingtonpost.com/lifestyle/style/a-disability-focused-website-ran-a-funny-post-about-autism-outrage-ensued/2016/01/05/366fbd14-b311-11e5-9388-466021d971de_story.html

The initial story, "A Disability Focused Website Ran a Funny About Autism--Outrage Ensued", was not bad. It simply laid out what took place. The second article, "Writing for the Mighty, For My Son and with My Son", was misleading ableist propaganda. I was deeply offended. The author, Lauren Swick Jordan, is raising a son with autism and it is clear she views disability from the narrowest of perspectives: her life with a son who has autism. She individualizes disability. Disability is all about her individual experience as a mother raising her son. She reflects exactly what the Mighty proclaims itself to be: about real life and real experiences. This by itself is a huge program. Life with a disability is not about a corporate tag line created in a boardroom office with no disability representation. Individualizing disability is inherently destructive. Disability is first and foremost a social problem. The Mighty taps into the isolation of individual parents and empowers them to vent about how hard life is for them. I get this. Life with a disability is hard. Raising a child with a disability is hard. I  openly acknowledge this and ask the all important why? Why is parenting a child with a disability hard? Why are such parents isolated? And why is life with a disability hard? Life is hard because social barriers abound. Elementary schools often segregate kids who need "special education" from other students in a myriad of ways ranging from isolated resource rooms and "special transportation" in the form of a short bus. There is nothing special about kids with a disability. They might navigate the world differently or do not learn at the prescribed rate schools demand. Like their typical peers they are just kids. The issue is never the individual but rather the system that alienates the child and parent.

Swick Jordan needs a history lesson. Disability rights exists because of people with a disability that realized the barriers, social and physical, they encountered were a form of oppression. I recall reading the Body Silent by Robert F. Murphy in the reading room of Columbia University famed Butler library. I laughed, cried, and felt a range of human emotions like never before. As a newly minted cripple  for the first time I knew that I was not the problem. I was not damaged goods even though that is how I was treated. I was the same person I was before I was paralyzed. I was a human being. There was nothing inherently wrong with my body or brain. It was a life altering revelation. On that day in the reading room I knew all I was taught about disability was wrong. I had a social disease, a potentially deadly social disease. In the proceeding decades I have learned much about disability rights and history. It is a grim history that is not taught in secondary schools nor at most universities. Most importantly the history of disability is never about individuals with a disability. Disability is about a class of people who have been abused in horrifying ways. We people with a disability have been forcibly institutionalized. Hundreds of thousands of people with a disability have been sterilized against our will. To this day people with a disability remain on the margins of citizenship to borrow the title of Allison Carey's excellent book about intellectual disability and civil rights in 20th century America. Disability disturbs others, typical others in a way that is used to justify the rampant abuse people with a disability have experienced in the past and present.

When I read Swick Jordan I was disheartened. The enemy in her estimation were adults with disabilities. I am not sure which is more upsetting, her unquestioned privilege or demonization of those who champion disability rights. For Swick Jordan "The Mighty is wonderful". Furthermore there is a Face book group "I have been honored to be a part of, where contributors for The Mighty share ideas, stories, and support for one another. It has been a safe place, with a strong feeling of community. This has not been the case, however, since just before Christmas". She went on to write "Suddenly, on the Mighty Contributors Facebook page, I was seeing all these terms I had never heard of before: “inspiration porn,” “mommy martyrs,” “pity party writing,” and “#crippingthemighty” – a name given to the movement of protest. This group was furious about the post, and most posts written by parents, as they told us “nothing about us without us,” — one of the mantras of the disability movement". I understand the avalanche of criticism must have been a shock and upsetting. I get this. I regularly receive hate email for my opposition to growth attenuation and assisted suicide legislation. Yet it seems to me if Swick Jordan had never heard of the terms she mentioned I would take to the internet and do research. A wonderful world of disability rights oriented literature exists that is easily tapped into. The problem for Swick Jordan was that: 

"all of us “mommy bloggers” were collectively scolded by this disabled community. Suddenly, there was a published list of rules we were to told we must follow by the protestors, otherwise, they said, we are disgracing our children (if we should write at all, that is). That we can not be our children’s voice, and we can never know what our children are living through. That we need to listen to them – they are trying to teach us all something – and it’s time to shut up and learn. And do not respond, or you will be ripped to shreds. I saw it happening in this previously very safe, very comforting community. And it was splitting this community in two".

To reiterate, I appreciate the harsh comments directed at contributors to the Mighty were hard to take. Nothing good comes from hurling insults and hurting others. But in stating she was "terrified" to write from the perspective of a parent who had a child with a disability involves the basic question: who is she is afraid of? I can only conclude people like me who forcefully advocate for disability rights. She plays the part martyr: she is the all loving, compassionate mother who selflessly works to enhance the life of her son with autism who is harshly attacked by people with a disability. This attack is splitting the community apart! Spare me the misleading rhetoric. The split between those with a disability and the non disabled parents raising a child with a disability has existed for decades.

As for the so called rules, this is grossly misleading. There are no rules forced upon "mommy bloggers", a term I never use because it comes across as demeaning. Alice Wong (and other vocal critics of the Mighty such as S.E. Smith, David M. Perry, and Savannah Logsdon-Breakstone), has posted a resolution. This is a resolution not the imposition of rules as is implied. The resolution seems to me to be quite modest.

I am deeply sorry Swick Jordan is terrified. I understand her intent is good and that she does not want to hurt anyone. Yet the fact remains much of what the Mighty has published is in fact hurtful.  The Mighty will never change because it was and remains a "place where parents refer to themselves by their children's diagnoses, as though they have become entirely subsumed  by their children's disabilities, another way to signal that  they're utterly burdened. (Autism Mom, Kidney Mom etc). Its a place of shocking disregard for disabled people, unsurprisingly, and includes rather a lot of actively disabilist content". These words were penned by S.E. Smith and are spot on. The Mighty undermines disability rights in a way that reminds me of most universities and academic organizations I have worked with. Disability is always a once off. It is not about a class of people subjected to baseless social discrimination. This is a perfect way to disempower individuals with a disability. This is why the Mighty's focus on the individual is inherently damaging to people with a disability. 

In "Looking Back at #CrippingTheMighty" Crippled Scholar wrote:

The Mighty despite its stated aims (helping disabled people) is really a safe place for parents of disabled children and avid consumers of inspiration porn. Changing the site to be in line with actually helping disabled people would alienate its largest reader base.... They would no longer have venture Capitalists throwing money at them and their ad revenue would be less. The people who most often frequent The Mighty do not want to learn about disability, they want to have their preconceived notions confirmed. Disabled people who have ventured into the comments sections on the Mighty have found themselves attacked. If they point out ableism they are told to be forgiving and to understand that people just don't know any abetter, if they are not dismissed outright. These people don't want to learn, they hold up their ignorance as a shield. These people are also not ignorant internet trolls. They are not arguing for its own sake or to harass, they do it out of a genuine sense of righteousness.Link: https://crippledscholar.wordpress.com/2015/12/31/looking-back-at-crippingthemighty/

The Mighty is not at all about disability. It is all about asserting dominance. The Mighty has a axe to wield. Their axe centers on a profit model that is unique to the disability community. The voice of those that do not toe the party line will be quickly dismissed. Hence I love the line ignorance is used as a shield.This is, of course, misleading and dismissive. The Mighty relies on the antiquated notion we should be kind to the handicapped.This so called kindness is in reality a form of oppression. While I do not like it, the Mighty is laughing all the way to the bank. The only voices not heard are those that believe in disability rights. The word that comes to mind is despicable.  

Routine Social Degradation

I often joke that having a disability is the perfect cure for a big ego. When my head gets too swelled and I think I am hot stuff a stranger will ask me a stunningly stupid question or make a degrading comment. As most wheelchair users will test, social interaction is rarely routine. My social life is wildly unpredictable. When I go out my front door I have no idea if my experience will be routine, positive, negative, strange or flat out weird. There is one constant: the majority of people I interact with during routine social interaction assume I am inferior socially and physically. When I ask a person to move my request results in no movement. I am often told "go around me", "wait until I am done", or am simply looked at with scorn. Navigating the built environment is never easy  and ignorance abounds. In addition, society creates problems that need not exist.

Toy store aisles post Thanksgiving are jammed with displays and surplus stock making it impossible navigate the aisles for wheelchair users. The assumption is no parent with a disability exists.

At my local library the garden club decorates the entrance every Fall. When I inform a library staffer that the button to the electric door is now blocked and impossible to reach the reply is "Oh, the garden club worked so hard and it looks lovely. Why don't you call or knock before you arrive". When I note I can no longer independently enter the building thereby defeating the purpose of the doors I get a stony silence or angry look.

At the national chain drug store, the check out lowered counter space designed so a person using a wheelchair can easily place items down is stuffed with merchandise. This is rampant. Every place I shop the supposedly accessible counter space is used for merchandise. When I point this out I am met with rolling eyes, shrugs, and silence. If I ask for the accessible counter space to be cleared I am instantly a difficult customer that creates needless work.

At the big supermarkets and drug stores I often observe an area where a person can check their blood pressure. This area has a chair bolted to the ground and a prefabricated structure that requires a person to sit and put their arm through a rigid tube with a built in cuff. It is impossible for me to check my blood pressure. I have told more than a few pharmacists about this and asked how can I check my blood pressure. The stock answer is "go to your doctor and have him check it" or "I can't help you".

Elevators often double as storage rooms. Elevators are often locked. No person has a key.

Accessible dressing rooms in the Gap and many other stores are locked.

Van accessible parking spots blue lined area where a wheelchair lift can be deployed are routinely cluttered with empty shopping carts thereby making the spots useless.

At the local minor league baseball stadium a new party zone behind right field was created. To enter this area one must exit the building and walk around the stadium to access the ramp.

When a bus driver at a given stop tells me the wheelchair lift is broken my reply is "The law mandates a bus with a broken lift cannot be put in service". The average bus driver will either give me the finger, curse at me, or most likely say "Get the next bus".

More than one cab driver has told me he will charge extra for taking the wheels off my chair and putting the frame and wheels in the trunk.

Many public schools in suburbia have no wheelchair lifts on school buses they own or lease. It is not uncommon for school districts to suggest the student that uses a wheelchair take a cab to and from school.

Polling places are often grossly inaccessible. Accessible voting machines are uncommon. Polling place workers are ignorant. More than one volunteer has suggested they enter booth with me and they can pull the handle.

I could go on with dozens of other examples. I often wonder why people are so willing to violate the rights of people with a disability. I wonder why are people so resistant to thinking out of the box. Why do people think of all the things I cannot do rather than what I can do. Where do people learn that disability based bias is perfectly okay. As I wondered about this I read a post by Stephen Kuusisto entitled "Playing Chicken, Driving a Motor Bike Pretending to See". Link: http://stephenkuusisto.com/2015/12/30/playing-chicken-driving-a-motor-bike-pretending-to-see/ Kuusisto reminded me ableism is learned from a very young age. Our public and private secondary schools do a fabulous job teaching children that people with a disability are different. They are a drain on limited budgets. They require special services. They are needy. They are shunted off to special resource rooms. They are sent home by cab or on a special short bus. Children are smart. Children are taught disability based segregation is the norm. Worse, kids with a  disability make an easy target. This is what Kuusisto and I experienced. Kuusisto recalled:

Sighted children shared nothing.

No one played fair.

Hitting people was easy and the blind kid was a perfect target.

Hiding things from the blind child was sport.

Disarranging the blind kid’s possessions was also rather fun.

See above.

Sorry is absurd.

Steal soap from the blind kid.

Push him in the toilet whenever you have a chance.

Always take the blind kid’s lunch.

My experiences were a bit different. I was nick-named "Old Ironsides". My peers thought this was funny.

Kids thought it was hysterical to crawl under or over the lone accessible bathroom stall walls and lock it from the inside. Kids thought it was funny when I urinated on myself.

In college one semester the only accessible toilet in my dorm had no door but a curtain. The curtain was routinely ripped out and thrown away. I had to urinate and deficate with no privacy.

After getting numerous flats in my wheelchair tires I asked teachers to stop using thumb tacks and use staples instead. Teachers refused my request. My peers thought me getting a flat was very funny and started putting thumb tacks all over school. At one point I was getting a flat daily.

Yes, this was long ago. The skeptic could argue this is a thing of the past. The ADA I am often told "solved all the access problem you might come across". Sorry but no, the ADA set the minimum accommodations required by law. More to the point, social barriers remain the norm. I recall my son was humiliated at a Boy Scout event by his peers who openly discussed my sexual capacities and the boys speculated on who his real father was. The assumption was I was asexual. This was hysterical funny to all the boys except my son.

To be blunt there is just no incentive to value the inclusion of people with a disability. Instead we fetishize disability. I am not referring to the sexual fetishes associated with disability but rather "inspiration porn" and sappy media portrayals of over coming any given disability. The assumption here is that disability is a tragedy. Based on 38 years of wheelchair use I cannot help but conclude non disabled people have no interest in disability. I find this remarkable. Disability is after all the only minority group one can join by mere bad luck or accident. One would think disability rights would important given this fact. Yet in the digital age society seems to be content with disability based click bait like theMighty. From its inception, the Mighty has pumped out a lot of content by parents of children with a disability. S.E. Smith recently wrote that the Mighty is a "place where parents refer to themselves by their children's diagnoses, as though they have become entry subsumed  by their children's disabilities, another way to signal that  they're utterly burdened. (Autism Mom, Kidney Mom etc) Its a place of shocking disregard for disabled peopled,  unsurprisingly, includes rather a lot of actively disabilist content. Link: http://se-smith.tumblr.com/post/135822630135/some-real-talk-about-the-mighty Within the disability rights community the Mighty is seen as a sewer spewing out inherently destructive and degrading essays that reinforce age old stereotypes associated with disability. It is in short ableism run amuck.  So much for our supposed allies. I wish had more answers than questions. I wish I could stop reading stories of abuse and abandonment. I wish our society was more accessible 25 years post ADA. So as I look out my window in near darkness nearly four decades since I was paralyzed I am strategizing how can people with disparate disabilities band together to form an effective political coalition. Suggestions are welcome.

Coming of Age with the ADA

A good friend sent me an article written by Will Reeve, the son of Christopher Reeve. The article was published in USA Today entitled "Reeve: Disabilities Battle is Not Over". Link: http://www.usatoday.com/story/opinion/2015/07/23/disabilities-ada-equal-opportunity/30514425/ Will Reeve is correct--the battle for equal rights is far from over. Will Reeve considers himself part of the "ADA generation--an advocate to combat the invisible reality that we are far from delivering on the key principles of this legislation. And it is up to the ADA generation to engage in honest dialogue about the strengths and short comings of the ADA to catalyze change". Reeve goes on to quote his famous father, Christopher, who apparently said "It comes down to us. We have the power to make an enormous difference". Christopher Reeve did make an enormous difference. In my opinion he set back disability rights by a decade or more. Reeve, a Hollywood insider known nation-wide for playing the role of Superman, used  his fame and fortune for a singular goal--cure for spinal cord injuries. He was an inherently destructive one trick pony from the instant he was injured to the day he died. While his goal was laudable, the way he set about reaching that goal was to rely on a medical model of disability and effectively use pity to raise millions of dollars. The fund raising resulted in the creation of a multi million dollar foundation named in his honor. The foundation's primary focus on cure has not changed measurably. Disability rights gets short shrift.

It is ironic that I came across the Will Reeve article. My son Thomas Peace just posted on my blog  and was interviewed by Louise Kinross Link: http://bloom-parentingkidswithdisabilities.blogspot.com/2015/12/my-dad-was-disabled-and-cooler-than-most.html My son and Will Reeve were unusual as children. In the late 1980s and throughout much of the 1990s men and women who had experienced a spinal cord injury were not deemed parental material. As my son wrote "we stuck out everywhere we went". To further the irony we lived a few miles away from Reeve. His son and mine played house league hockey and they were both avid New York Rangers fans. The similarities end there. I embraced a hard core disability rights perspective that was of no interest to Reeve and his foundation. The contrast between Reeve and myself was stark. After Reeve was injured in 1995 I felt sorry for him. Life as a vent dependent quad is hard, the adjustment massive. I thought in time the veritable light bulb would turn on and he would get that disability is primarily a social problem. I acknowledge the effort to find a cure for spinal cord injury is good but life is equally important as is advocating for disability rights. Reeve never got this. Worse he became increasingly desperate for a cure and catered to the lowest common denominator in order to raise money. He struck me as severely alienated from other people with a disability. I suspect he had no idea other people with a disability were appalled by his rhetoric for cure and had instead embraced a social model of disability. The divide between Reeve and the average person with a disability was starkly apparent in 1996 when Reeve gave a speech  at the Democratic National Convention. The main stream press was agog. Reeve was a saint. He was brave and the savior of all Democrats. Reeve was a champion of disability rights. Those who witnessed his speech at the convention openly weeped. The reaction on the part of people with a disability was the opposite. The disability press despised Reeve and considered his speech ableist. Reeve did note the importance of the ADA and disability rights but his words were fleeting at best. The man wanted to be cured! The crowd went nuts. The raw emotion was palatable according to Harriet Mcbride Johnson who was present. When she looked up at Reeve she saw an object and in Too Late to Die Young wrote "symbolically he's the object of devotion" and it was a "surreal". She looked up and saw "a ventriloquists dummy".

I watched that speech and my face was crimson red. I was angry. Millions of people saw the speech in which he had reinforced every negative stereotype about disability humanly possible. Worse, he was lauded and praised. Lost in the sea of praise was how isolated he was.  Paul Longmore wrote "Christopher Reeve launched the most subtle, pervasive, and insidious attack against disability rights and people with disabilities in recent memory". He did the same thing locally. I know because I witnessed just how callous and uncaring he was. As long as he got in the door, he was happy. Other people with a disability were of no concern. For example, his son and mine played hockey. At the time many of the local rinks were not remotely accessible. I was often forced to drop off my son at a rink and had no way of getting in to see him play. In contrast, Reeve received special attention and I saw him enter a rink while I sat in parking lot. This sort of privilege took place locally and at Madison Square Garden, the home of the New York Rangers. Thus I shook my head in disgust when Will Reeve wrote about a revelatory experience.

At a New York Rangers playoff game at Madison Square Garden this spring, I — accompanied by a friend who is paralyzed and uses a wheelchair — saw firsthand how accessibility has evolved over the past decade. When I attended games with my dad after he sustained a spinal cord injury, there was no seating for people with wheelchairs. Instead, my family would sit in folding chairs near the players' entrance, and we moved to the side when the Zamboni came through. It was all a major production.
This time, though, entrances were accessible. Elevators led us to precisely where we needed to go, and clearly marked signs directed us to the wheelchair-accessible section. A local restaurant nearby had a permanent ramp that led directly to a patio where we mingled with fellow fans. It was quite moving to realize how much easier it has become for people in wheelchairs to get around and enjoy the same experiences others take for granted.

A battle took place to make Madison Square Garden accessible. Reeve was not part of this battle. He was content to rely on his fame and have his singular needs accommodated. My son and I would have loved to have sat in folding chairs near the player entrance and move for the zamboni. Instead we sat in the aisle, there was no handicapped seeing until recently,  and were often forced to move six or seven times during a game because someone complained I was blocking their view. I had beer spilled over me by drunk spectators and ushers were point black rude. More than once I was told "just go sit in the bar, you are in the way". Madison Square Garden was and remains hostile to people who use a wheelchair.

The difference between my son and Reeve's son is clear. My son battled with me and we were always side by side. I could not be more proud of him. He got disability rights and pushed back from a very young age. Once when an elderly man told him "Some day you will have to take care of your crippled father" he responded by saying "You are an ignorant bigot". I will forever recall the look of shock on the man's face. It is not easy to be deemed a bigot by a little boy in first grade. When wheelchair lifts were put on MTA buses I was an EPVA bus buddy. The battle to put lifts on the buses was fierce. I was cursed at and spit on for using the bus lifts when they were first put into service. Christopher Reeve did nothing for disability rights. Indeed, during Reeve's post injury life he did nothing but antagonize people such as myself whose primary interest is disability rights. He was a disability rights worst case scenario. He was blithely unaware of all the means with which he engaged with society was created by the people he dismissed and belittled--disability rights activists. Instead, he wallowed in his fame and used his wealth to distance himself from his crippled brethren. Not once did I hear Reeve bemoan the lack of adequate access to mass transportation, accessible housing, and unemployment rates that have remained at 66% for decades.

Let's be clear about Reeve. He had no interest in battling for equal rights for people with a disability. He did not battle for the ramps and elevators he used. He did not battle to force hotels to have accessible rooms. He did not advocate for access in any way shape or form. He had one interest and one interest alone--cure. He was oblivious or simply did not care about others with a disability. I do not begrudge Reeve's wealth and fame. I consider his focus on cure for spinal cord injury unrealistic but worth while. But to suggest he was part of the battle for justice and disability rights is flat out wrong. While he was one of us he never connected with the disability rights movement or those who embrace an identity tied to disability. If there is tragedy involved in a spinal cord injury this is it; from the moment he was injured Reeve believed he was a class apart. He also created what I call the Reeve School of paralysis. In 2012 in a post titled "The Reeve School of Paralysis" I wrote:

the Reeve School of paralysis perceives disability to be a personal tragedy. A spinal cord injury is a personal catastrophe. Life is bifurcated. There were the golden years before paralysis when life was perfect and the tragic, compromised, and diminished life after a spinal cord injury. Reeve would "suffer" with dignity. He would show great courage in the face of a horrific tragedy. It helped that he was good looking and stoic. He played this part to perfection. But wait there is more! Reeve, thanks to his fame before his injury, became an icon. He was the perfect cripple. He was not like other paralyzed people who wallowed in self pity. He wanted to be cured. He dedicated his life to cure. He founded the Reeve Foundation. He lobbied on behalf of other paralyzed people. He embraced high tech medical care--care meaning research for a cure and emphasis on dubious clinical trials for cure. He became a cure junkie and for this he was beloved by all--all those that knew nothing about disability. Reeve cemented an antiquated perception of disability. Disability is a fate worse than death. It is a singular experience, a tragic experience. The "job" for all people with a spinal cord injury is to seek a cure to paralysis. No risk is too great. No procedure too risky. No amount of money is too much. No matter what the focus is always on walking. 

I do not care one iota about cure. Like my peers, I am too busy leading a good life. Again, the ultimate goal Reeve sought is a good one. But that is not going to happen in my life time nor in my son's lifetime. I just love life, the good and bad. I love my son. I enjoy teaching at Syracuse. I love to write. I embrace the family of friends I have made in Central New York. I want to help my son find work he enjoys. I want to see him mature and perhaps marry and become a father. I want to enjoy sports. I want to live to see the Rangers win a Stanely Cup and the Mets win a World Series. I want to cook good food. I want to drink rum and fine port. I want to get every last ounce of life out of my body. A paralyzed body I love and suits me. I do not care about bodily dysfunction. Believe me, my body reminds me daily about dysfunction and pain. I choose to enjoy what my body can do. To me, the focus on cure makes no sense. Such a focus misses the point of life. A focus on cure is to buy into the rampant ableism that surrounds us. I see a paralyzed man or woman and I think of all the things they can do. I see a person who uses a guide dog and think the team they form, human and dog, is the essence of human adaptation. I observe deaf people sign and I think of how Deaf culture is cool.I envy their language. I see an amputee walk by using a prosthesis and think the merging of technology and the human body is an inherent precursor to the future. I admire and respect those adapting to various forms of invisible disabilities such as Chronic Fatigue Syndrome. I respect those who are neurologically diverse and think about how fascinating the human brain is. You see, when I consider disability I believe it brings out the worst in society and the best that humanity can offer the world. I am quite proud of my crippled fellows. We are in the words of my son bad asses. 

Micro Aggression's Rampant December Presence

Since class ended last week I have been trying to lay low. I do my best to avoid social interaction but sometimes I need to do the ordinary. Exciting stuff like grocery shopping, an odd trip to the post office or library, maybe even eat lunch out.  When I do this I am a target of opportunity. This is ever present and has been for over three decades. However the intrusion in my space and forced "help" is a real problem as Christmas approaches. I have read other people with a disability express similar sentiments. Dominick Evans recently wrote "Don't Just Say Hi to Me... Just Fuck off Instead". Link: http://www.dominickevans.com/2015/12/dont-just-say-hi-to-me-just-fuck-off-instead/ Written in response to an ill advised add campaign by the Cerebral Palsy Foundation (Just Say Hi) Evans wrote the problem is not getting non disabled others to say hi but rather makes people go away. He concluded his post in a way that reassured me I am not the only one being harassed:

I am not here for you to be inspired by me. I am not here to make you feel better about yourself. I’m here because I’m a human being just like everyone else. So next time you approach me, or any of my friends with disabilities, don’t say hi, unless you would say hi to everyone else around you. You don’t know what I’m going through, where I’m going, or even if I want to talk to you. If you wouldn’t say hi to a non-disabled person, don’t say hi to me. Instead, just fuck off, because frankly that’s the way the majority of people would act around anyone else.

The bottom line is that people with a visible disability lose the ability to be anonymous. I always stick out. I stick out when I attend an academic conference. I stick out when I park my car. I stick out when I navigate my way through an airport and on and off a plane. I stick out when I eat at a diner. I stick everywhere because the world was built for bipedal people. My existence and the space I take up is out of the norm. The ignorant people I am forced to deal with have no clue what my life is like. When they meet me it is singularly unusual. My existence prompts a social response that typically involves rude condescending behavior. I have no privacy. None. Strangers feel free to ask any question that pops into their mind. These questions are typically inappropriate. A common conversation starter involves a stranger asking "Why do you use a wheelchair? or "what happened to you?" or "can you have sex?". The list of intrusive questions is a long one indeed. Some might think people are just trying to be nice. Wrong. I second Evans fuck off. 

Evans is not alone nor am I. At Crippled Scholar I read "In Defense of the Radical Idea of Letting Disabled People Exist in Public Without Comment". Link: https://crippledscholar.wordpress.com/2015/12/14/in-defense-of-the-radical-idea-of-letting-disabled-people-exist-in-public-without-comment/ People with typical bodies do not get it. There is a cultural divide between people who are typical bipedal humans and those of us with a profoundly different body who navigate the world differently. For me, my difference is using a wheelchair. For others it might be a person who is blind and forms a guide dog team. For those who are deaf, it is the use of ASL. Our difference makes us a target. We are not mere mortals. We represent every other person with a similar disability. I do not speak for myself, I speak for all people who use a wheelchair. What bipeds do not remotely understand is how inappropriate intrusive questions are because they are inherently dehumanizing. Crippled Scholar wrote "These interactions are entirely fixated around the fact that I am disabled. They have nothing to do with me as a person". This line was followed by:

The fact that disabled people are not seen as being entitled to personal privacy. The fact that our bodies deviate from the norm seems to give people the idea that their have the right to ask us probing questions and they don't take refusal very well. Perhaps this is why Evans says that despite his dislike of these interactions, he tends to reply with a  smile. In my experience attempts to deflect just leads to more probing questions. An out right refusal to comply is met with shock and frustration. It is also in my experience leads to them backing down because as I mentioned these people feel entitled to my personal information. They usually respond by attempting to shame me by saying something alone the lines of I'm just trying to learn, don't you want people to be educated. The fact that have been trying to teach them that I have the right to exist in public without being accosted is inevitably lost on them.

There are over three million citizens in the United States 20% of whom have a disability. That leaves millions of citizens in need of a remedial education concerning disability rights issues. That is not going to happen if we rely on people being educated one by one. What is needed is a social revolution. Laws have failed to make a difference. They have failed not because they are inadequate but rather there is no social mandate to enforce them. I hear again and again about how the ADA is an unfunded mandate. I find this infuriating. The ADA is civil rights legislation. When I point this out people look at me with a quizzical expression. "Really, I had no idea" is the usual response. This also ends discussions as my point about civil rights requires thought.  People cannot fall back on what they learned about disability. The idea civil rights and disability rights are one in the same undermines what most absorb and are taught about disability.

I have put great thought into how to respond to rude people and intrusive questions. Like Evans, I try not to engage. Rather than smiling I have mastered the placid look. I relax my facial features, remain silent, and am stoic as humanly possible. Think DMV employee like interest level. When I do not reply kindly and engage the responses can be swift and violent. I have had doors slammed in my face. I have had people scream at me that I was "a bitter ass hole". I get why Evans smiles. He is protecting himself. Unlike Crippled Scholar, in my experience people do not back down. Strangers insist on helping or get off on mere staring as though I am freak show. A few example should suffice. This week two people have grabbed by wheelchair when I was getting out to fill up my car with gas. A minor tug of war ensued. A more passive experience also took place this week. I was getting into my car when I noticed a man staring at me in the car parked next to me. I stopped my transfer and looked him in the eye. He lowered his window and told me "go on, I want to watch." I replied with a "You are rude. Stop staring." He replied "I have not seen how a wheelchair goes in the car. I am watching". I was mad at this point and said "The show is over. I will not get in my car until you leave or stop staring". This exchange is somewhat dangerous. As both Evans and Crippled Scholar pointed out it is not wise to refuse to engage with typical others curiosity. Such rejection is not taken well. Refusing to play the part of entertaining and meek cripple is unexpected. 

I find it impossible to imagine that I am the only average crippled man in America who rejects a stigmatized identity. Evans and Crippled Scholar demonstrated I am not alone. That feeling warms my soul. Imagine a world in which we cripples could blurt out "your'e a dick" or"fuck off". Bipedal people's head would likely spin off their body. The shock would be palatable. Instead we are deemed to be "bitter", "angry", "uncooperative", "nasty", or have a "cripple's disposition". This is correct. I feel all these emotions when I am perceived to be less than human.