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Saturday, January 9, 2016

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: 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. 

Thursday, January 7, 2016

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: 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: 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.


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:

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.