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Thursday, September 5, 2013

Nasty Comments Got Me Thinking

Since I began writing this blog certain topics have generated extended and extremely negative feedback from readers. Topics that are sure to prompt negative responses, tirades really often laced with profanity,  include any mention of "inspiration porn". I no longer use this term and consider its impact akin to using the word Eugenics with an academic. The mere use of the term Eugenics or "inspiration porn" negate any sort of constructive dialogue. Two other topics include the cure industry and assisted suicide. I find this quite frustrating and enlightening at the same time. Like any other human being, I do not like to be called an asshole, bitter, or a fucking idiot. However such replies are helpful in understanding the larger social significance of disability. The same can be said when I read tabloids such as the New York Post and other mainstream media rags that knowingly or unknowingly denigrate disability rights.  I know the majority of Americans have limited if any experience with disability. What little knowledge people do possess is often wrong and firmly rooted in the medical or charity model of disability. Add in the fact I work with other academics and on university campuses and my social interactions are skewed. Skewed in the sense I work in an environment that frees me from the basest forms of disability based bigotry. Given this, the tirades I receive remind me of my lowly social status.

The moniker bad cripple is apt. Some people take the time to let me exactly how rotten I am. I let the nasty comments I receive stand because I feel they are a good indication of what most people really think about disability but in routine social interaction are unwilling to state. In recent months I have gotten a lot of severely critical email regarding my post about Shane Burcaw.  I took this young man, a university student, to task. I objected to his  overly simplistic message about being happy as well as his willingness to use of "inspiration porn".  I was also not impressed with his efforts to get on the Ellen show.  My post has generated many angry replies. The last two comments were as follows:

I just finished watching Shane Burcaw's video on youtube and I decided to look him up and see how his "Laugh at My Nightmare" program was going and I found this; a blog about how much a few people dislike this young man for being happy. What the literal fuck is wrong with all of you. Who the hell are you to judge this person, someone who was born with a life threatening disability, on being fucking happy and sharing his view on life. This so called "inspiration porn" is probably the biggest load of bullshit I have ever heard. Now I'm not a blogger or anything; in fact I created this account just to say how fucking disgusted I am by this shit. You should all be ashamed of yourselves . And to everyone, including the piece of shit author of this, who left any kind of negative comment towards this young man and his fucking happiness, I sincerely hope you have to somehow live through the same hell he is. I want all of you to feel the pain he feels. 

Today's comment:

Most likely you will delete this comment based on the unparalleled amount of self righteousness exuded in this pathetic article, but wow if I've ever read a more bitter sounding, hate filled, twisted perspective article in my entire life. You should be ashamed. The kid is clearly going in the direction he was meant to go. He is not faking a sense of humor. He has it and used it to cope with everyday life the same way you seem to cry behind your key board about someone else's happiness that you can't achieve. For self loathing maybe? Here's an idea make a youtube video and advise all the cripples to be self loathing cry babies. Maybe that will work better.

The comment left today prompted me to write. These two diatribes accusing me of being: "self righteous", full of "bull shit", and a "piece of shit author".  I should also be "ashamed" of myself as I am a "self loathing cry baby".

While the language leaves much to be desired I do not think the views expressed are far from the norm. Disability is grossly misunderstood. Much of what has been taught in secondary schools is badly antiquated. The fact is the vast majority of the population firmly believes disability is a medical problem.  A few may be aware that people with a disability have been discriminated against but that problem was solved a long time ago with a law that insures all new buildings are accessible. At no point does civil rights enter the equation. People with a disability it is thought are "suffering".  The few plucky cripples such as Burcaw are inspiring because in spite of the "nightmare"that is his life he is happy. The point here is the symbolism associated with disability is inherently negative or ridiculously positive. Thus two extremes exists culturally. Burcaw is an inspiring figure for happily overcoming his disability. I am the exact opposite. I am bitter and mad at the world. My anger stems from my disability, paralysis, and my disability alone. Any nuance is utterly absent. One is either a hero (Burcaw) or the anti-Christ (yes I have been declared the anti Christ).

When I read the nasty comments I shake my head in wonder. I truly wish to connect with a wide audience curious about disability. I try as best I can to frame disability in a way that will foster the proverbial light bulb to come on. People with a disability that I know are quite content with their given physical deficit. For me paralysis is a non factor in my life. I adapted long ago and will continue to adapt as I age.  What is at issue is the social response to my existence. We live in a country with rampant unemployment--70% of people with a disability are unemployed. Mass transportation is often difficult or impossible to access. Housing is deeply problematic. When I move I operate on the assumption 95% of homes and buildings are not accessible. My choices are severely limited in terms of where I can live and how I can get to work.  My anger and frustration does not stem from paralysis but rather a society that is knowingly reluctant to make the most basic so called reasonable accommodations. This is the leap in logic the majority of Americans have failed to make: disability is not about a given physical deficit. disability is about social, economic, and political exclusion.

I the discussions that concern disability to be inherently biased. In my experience there is always the proverbial but. That little word, but, is the bane of my existence. The proverbial but has existed for as long as the ADA has existed. Go to any meeting nationwide, think grass roots, and the proverbial but will come up at some point. For example, let me create a school budget meeting. In attendance are the usual suspects: PTA president, principal, board of education members, a lawyer etc. At some point during this endless meeting held in the evening after a long day of work the subject of transportation comes up. The district has a single wheelchair accessible bus. It is referred to as the special bus and likely transports every student in the district to and from school as well as to a host of school trips. The contract the entire bus fleet is coming to an end. Two companies are being considered. The existing company is cheaper than the competing company. There is one primary difference between the two bus companies aside from cost. The competing company is new and has made a commitment to include more than one short accessible or "special" bus. It has instead, via a grant from the Federal Government,  included a wheelchair lift to 10% of all its big yellow school buses. The director of transportation states the new company would be able to transport all students with a disability on the big yellow school bus if they desired. The new accessible buses would require a change to the bus schedule.  After this short recitation there will be dead silence. All will agree access is important. All will agree every effort should be made to be as inclusive as possible to students with a disability. Access is the right thing to do. And yes here comes that dangerous word, but. But the new company is more costly. They have a limited track record and are an unknown entity. The budget is tight. Then someone will ask well how many students with a disability do we transport? The number is very small. This makes no sense. we must spend our money wisely. Another person will state changing the bus schedule will prompt a hail of protests.  Many heads nod in agreement. The lawyer will state the school is in compliance with the ADA and in the event a student or parent complains we can provide them with cab voucher. Yet another person will chime in that they know a student that broke his leg and that is what his parents insisted upon. The transportation director will state how much was spent on such vouchers. Before you know it one and all agree cab vouchers are a reasonable accommodation and that the district should remain with the existing bus company. All participants go home thinking they fulfilled their civic responsibility.

What is not stated in the meeting? The use of a single small bus, a "special bus" is a form of segregation. Students in the district have been taught a lesson. Segregation of people with a disability is the norm. Students with a disability have no right to be on the big yellow bus. Worse, the kids call the short bus the "retard bus". Kids are smart and they have learned their lesson. Their peers with a disability do not have the same rights as they do. They can be relegated to the "retard bus" and excluded. No person mentions the fact the kids with a disability are quickly and efficiently prevented from participating in routine social interaction. Typical kids grow up and become adults that simply accept people with a disability are different and do not have the same civil rights. That is typical people get to choose when and where they will spend money on disability inclusion. The ADA becomes a choice--we will comply when it is not too expensive or problematic. In part this is why people feel free to take me to task on firmly linking disability rights with civil rights. If this linkage was accepted, one the federal government instituted twenty-three years ago, opposition to disability inclusion would be objectionable. In failing to perceive disability as a civil rights issue all sorts of abuses both physical and social can be excused.  Disability many think is solely about physical suffering. The nasty comments quoted above clearly demonstrate this. Burcaw has accepted his suffering with grace and dignity. I am a bad guy because I refuse to accept my lot in life--subservient cripple happy for society's largesse. In fact  I am "biting the hand that feeds me"--those generous souls who donate money to the handicapped. Thus I am a bitter asshole. What I find frustrating in the extreme is how to undermine this line of reasoning. The anger I prompted is devoid of reason. How exactly can I get people to think?  Suggestions welcome.

31 comments:

Liz said...

Because of your posts, and those of Dave Hingsburger, and Lene Anderson, I've started to notice steps. And narrow doors. And unshoveled curb cuts.

I've been doing political canvassing now for over 20 years, and I can tell you exactly how many times I've seen houses (as opposed to apartment buildings) that were designed in the first instance to be accessible.

Never.

Not once.

And that includes canvassing in neighborhoods that were marketed in the first instance as over-55 communities.

I've seen plenty of added-on ramps though.

william Peace said...

Liz, Well you sure are reading some great blogs. May I suggest you add Life with a Severely Daughter and Planet of the Blind. I have been paralyzed 35 years. In that time I have been in the home of three friends. All others are not accessible. Housing for the elderly has what I call faux access. It is accessible in that access assumes one can stand and walk a little bit. Obvious access is deemed to ugly and will hurt property values.

tigrlily said...

Members of other disenfranchised groups have struggled with the same issues, and probably come up with some effective strategies. Even as a kid I remember hearing of how African-Americans activists had to deal with being labeled The Angry Black Man (or the domineering black woman) and worse. Feminists are portrayed as humourless ball-busters. It's a very common way for the dominant culture to attack those of the subjugated group who don't smile and shuffle and say "yassah, boss."

Ruth Madison said...

I'm really surprised people criticize you in this way.

If I were to post what you post, I'd expect incredible nastiness.

But you have a disability!

That to me means your opinion on any matter disability is automatically valid. Certainly more valid than mine.

william Peace said...

Ruth, I get some shockingly nasty email that verges on hate. I am very accustom to severe criticism. You are sadly correct as a normate or person with a typical body you would be subjected to even worse criticism. My words however are dismissed as the rantings of a bitter asshole. This frustrates me in the extreme because the points I try to make are lost.

E Fischer said...

The upside is that controversy ups your reader count and you may get some coverage of issues through the back door.
Question: As the anti-christ, can you give us a heads-up when we are nearing the end of time?

Jo Kelly said...

Bill - I've always wondered who the anti-Christ would be! Imagine that!

I see one of the biggest problems in all of this is the acceptance of being objects of pity by so many people with disabilities. I'm told often by my counterparts here in Calgary that I'm off my rocker - none of them want to even explore these issues. They just shrug and say "water off a ducks back". End of story.

I find it interesting that the people who are the most outspoken are those of us who have life-long disabilities or those of us who have been at it for almost a lifetime - like yourself. I guess the others are too in tune with their old "Able Bodies" and still think the way they used to. Sad, sad state of affairs.

Rachel Cohen-Rottenberg said...

In the past 24 hours, I've gotten more nasty comments on my blog than I have for some time -- all over my critique of a Guinness commercial. A commercial! I know this can't be about the damned commercial. The subtext appears to be, "Why can't you just be grateful for what they give disabled people?" The bottom line is that we're supposed to be grateful and then be quiet. If that's what people are looking for, they're reading the wrong blog!

Julie H. Rose said...

My take on this is bleak. The root of this is "our" twisted belief in Social Darwinism. The abled would prefer we die a quiet death. If not, we need to be here to provide inspiration to a society that is in denial that old age, sickness, and death are inevitable, and that luck plays the biggest part in whether one is able bodied or not. If one doesn't prove that it is positive to be happy "in spite of" you better keep your mouth and stay invisible.

Ruth Madison, I am surprised that you are surprised. The happy shiny able bodied masses are sleep walking through this life. Ever wake someone up from a happy dream?

Julie H. Rose said...

I mean "possible to be happy" above.

Jisun Lee said...

This comes at a time that I've been pondering this as well, I just wrote something about the idea of being grateful and got quite a bit of private criticism, and I don't even have a widely read blog like yours. I can see that you try to foster conversation, but sometimes I wonder if it is like walking into a den of KKK members to discuss racism. The thing I keep hoping is that the ones who write the horrible vitriol are not representative of most people. I believe the ableism may be rampant, but the hate is not.

I think you reach people. I share your posts and consistently get comments about how you've made a person rethink their own beliefs.

p.s. I would also like to know when the end of time will be. Please share. :)

Liz said...

Thank you, William! I will check out those blogs!

Phil Dzialo said...

People usually leave a comment on a blog because they believe that what they share has value and is worthwhile. It is always helpful to be open and understanding of perspectives which are opposite to one's own and to be grateful that we share a world of difference. It is helpful to acknowledge a kernel of truth in what they write, even if you vehemently disagree. It is appreciated by any critic that the blog author attempt to understand the perspective of the writer and communicate that he/she tries to understand what the comment represents. It is important to enter into a genuine dialogue with the heart rather than simply the mind.
A simple example. My son is rigidly spastic from head to toe...solid as a board. I always look for a cure for his spasticity or at least an ability to provide some relief so he can be more comfortable in his body. For a few moments, tense, as tightly as you can every muscle that you can. Hold it for ten minutes...hold it for 15 years without respite. As a fulltime caregiver and one who defines his/her life as worthy through this extreme caregiving...a person can be quite rankled when he reads about "acceptance of one's disability/limitation" about the "cure industry", about the different ways in which we, in this disability world, best choose to live our lives. Laws, civil rights, media representation changes of disability ... my issue is cure/reprieve and fundamental human indifference from those who should care. We are very different, our views are different, dialogue is possible as long as each person's views are considered to be their subjective experience of their reality and accepted as such by the other. We do not need to convince anyone we are right, we simply need to dialogue and understand.
And, without one word of profanity...

B Burton said...

Please keep the blog posts coming. I look forward to each and every one.

william Peace said...

Eric and Jo, I have been deemed the anti Christ on more than one occasion. I am a veritable magnet for mentally ill homeless men and religious fanatics in New York City.
Jo, Newly minted cripples depress me. Too many do not know how to assert their civil rights. Worse, many are concerned with a cure and nothing else. Cure is a great goal but I for one would be far more interested in how to manage my bowels and bladder and find employment post injury. Here is a radical thought: put a placement office in all rehab centers. Make it part of the rehab experience.
Rachel, Welcome to the club. I found what you wrote r.e. the beer commercial was benign. I will look later to see if more critical comments have poured in.
Julie, Some days I share your pessimism. The Darwinian use of theory to oppress people is interesting but hard to demonstrate. Have you read Kenny Fries work? He takes a Darwinian view of disability in his most recent book.
Jisun, I like your reference to going into a KKK meeting to discuss views on racism. Sometimes when I meet with clinicians asI have been doing recently I think this analogy is apt. There is a fundamental disconnect where others are unable or unwilling to grasp disability from a civil rights framework. And thanks for the kind words.
Burton, Thanks for the kind words.

augtalk said...

I am certain many of your critics belong to the Bobby McFerrin school of philosophy . You know, "Don't worry. Be happy."

I'm more of a "fight the power" kind of guy.

Claire said...

@Phil: "We are very different, our views are different, dialogue is possible as long as each person's views are considered to be their subjective experience of their reality and accepted as such by the other. We do not need to convince anyone we are right, we simply need to dialogue and understand." So, if a man beats his wife and experiences that as an appropriate response to his subjective assessment of her "misbehaviour", and the wife accepts this beating because, in her subjective experience, she deserves it, it is for all to just listen and accept, and not convince either that they are wrong in any way?

Phil Dzialo said...

@Claire, you know quite well that your extension of my statement is a perversion of my comment. I was addressing the ideas of cure, inspiration, assisted suicide...that our subjective experience of these issues shapes our beliefs and that we should be open to dialogue on these issues. I made no reference to wife beating, etc. and to extend my words to that realm is quite unfair and subverts dialogue.

Julie H. Rose said...

I just wanted to clarify that I used the term "social darwinism" in the popular sense - which has nothing to do with Darwin himself. I am not a scholar or even all that well educated (though certainly self educated and better read than most college grads by a long shot). . .but what I was getting at was the twisted "survival of the fittest" mentality that I see every day. From what I've read of your blog, i know you don't agree with that crap.

I was saddened to see that you'd no longer discuss certain issues or use certain words. I'm new to being visibly disabled, but an old hand at being othered. . .I'm no cure seeker. I actually feel I'm fine except for days I have excruciating pain. What I do object to is being punished for being "not normal." For being shamed at being "not normal." For living in a crazy making society that on one hand makes it impossible for me to work, find appropriate housing, get around without massive obstacles, blah blah blah blah. give the message basically that they'd prefer if I was dead, and then if I have the temerity to suggest that I feel I ought to be, I'm threatened with being locked up because I'm depressed. I'm not depressed, btw. I'm ANGRY. I'm not bitter. I AM VERY VERY ANGRY. And there's no difference btw this and any other civil rights I will not bow and scrape and say, "Oh, can you please raise money for me to help me become normal like you!!"

I am censoring myself. Today I have had such insults to my body and psyche and I read your blog and I have NO PLACE TO PUT THIS RAGE. You don't have to post this. I just want someone to hear me.

Patti said...

Bill,

this blog is incredible and should be included in every curriculum for any degrees regarding being involved with people with disabilities.

The scary thing is, many people with disabilities possess a form of "stockholm syndrome" in which it is easier to be passive to survive. It becomes a mindset that is very dangerous. We should all continue to bitch, yell, and scream what our rights are and what we will not tolerate. This is not a popularity contest.

william Peace said...

Augtalk, I love that song. So did my father.
Julie, I responded to you directly via email.
Claire, I love your impeccable logic.
Phil, I will not engage in any discussion with you now or in the future. I do not visit your blog nor would I ever comment on anything you write. I would appreciate it if you would extend me the same curtesy.

G. B. Miller said...

Wow. So you're the Anti-Christ?

Keep up the good work.

While I'm not disabled or a caretaker of a disabled child, it does bother me to see how the disabled are treated.

I also find it odd that in the two comments that you wrote about, the people who wrote them seem to be a bit clueless about who and what you are. Blasting you for critizing the disabled when in fact you are simply boggles my mind.

Btw, I came across your blog earlier this year via a link at ESPN, and I'm glad that I did.

If anything, I'm starting to develop a better understanding of the world around me.

Rachel Baar said...

You asked for input on how to get people to think, so here it is.  Your assertion is that there are two ways that most people deal with disability, either "inherently negative" or "ridiculously positive" (your words).  I don't agree. In my experience people are capable of far more nuanced thinking than you give them credit for.

After reading both posts directed at Burcaw including the original in April, my sense is that their anger was more inspired by the way you took Burcaw "to task" then your disability. To quote you, "I objected to his overly simplistic message about being happy as well as his willingness to use inspiration porn," and "I have a PhD while Burcaw is earning his BA. I do not find him funny. In fact, he has cast himself into the deep end of the disability porn pool." Those sentences come across as condescending.

To your credit, you say you've decided to stop using the term disability porn. I think that's a wise decision. You also admitted when his aunt commented on your "Get stuffed Mr. Burcaw" that it  probably wasn't conducive to respectful dialogue. I appreciated that.

You wrote of Burcaw "he's a witty man who gets by on charm" and that you are "a product of my time when scholarship, education, and detailed analysis were valued."  Ouch.  And you wonder why the f bombs flew?

I watched the video of Mr. Burcaw. My impression was of a young man who is sharing the philosophical conviction that it's possible to be happy if your mind is focused on achieving that state, despite what the body is going through. As his aunt pointed out, his audience is not yours, and I would add that his intentions are not either. 

You say, "The people  with a physical disability that I know are quite content with their physical deficits." Perhaps that's because their injuries are static, or non-progressive. It's a very different animal to know that your condition will only deteriorate with time, and that there is only further loss to deal with down the road.  I can't comment with authority, because I don't know the people you're speaking of, or the nature of their disabilities. I'm simply offering a possible difference in experience that makes your point less valid. If I were 21 and knew that I would be facing gradual loss of all muscle function, including the ability to breathe, I might characterize it as a nightmare.

Just because he hasn't taken on disability rights as part of his forum as you have doesn't  mean his purpose isn't as valid. 

You asked how to get people to think. I believe one way is by showing respect when shining a light on the social problems you wish to illuminate. Your intentions may be of a high order, but If you really want to get people to think, I believe you might reconsider the words you use when you take someone to task. You're apparently willing to do so, and that says much about your integrity.

 Thanks for letting me share. I do value the work that you are doing here.


william Peace said...

Rachel Baar, Wow, thanks for the input. You comment is excellent. I appreciate the time you took to select quotes and then take me to task. It is via critical comments that I learn the most. Of course I do nto agree with some of what you wrote but you make valid points. For example the difference between a progressive and stable disability. I tend to think this is of no consequence to the social reaction people with a disability prompt. The real problem is to reply to all your comments would require a post by itself. Wish I had the time to do this.

W. Austin said...

I've always posited there be a correlation betwixt us (PWDs) as objects of pity and our lack of success professionally.

My raising hell in a pre-1990 environment landed me on forced disability rather than my employer dealing with the merits I'd documented.

Julie H. Rose said...

I liked Rachel Baar's comment, too. We all desperately need nuance!

I want to apologize (somewhat) for leaving a semi-coherent vomit of rage in your comments. I was more sick that night than I realized. Twenty four hours later I was taken out of my apartment in a stretcher with low BP, pulse, respirations, and no control over my muscles (which I do have for the most part). I would have died that night if not for emergency services. However, the chain of events leading up to this event and since have been a carnival of horrors, all preventable, and all caused by the nightmare that is laughingly called a "health care system," and the focus on cure, acute care, and the increasing sadism of our society. In My Humble Opinion.

In spite of this, I too, could not and would not survive if I could not find humor in my situation. I can be happy a good amount of the time, but that didn't happen until I stopped seeking happiness as a goal and trying to please others. Some people do find me inspiring. That does make me happy. It is an honest inspiration, just as I am inspired by many people I've read of, met, etc.

Maybe this will bother you, but from what I've read of your blog, I'm inspired by you. I'm inspired by Rachel Cohen-Rottenberg. That's legitimate, isn't it?

But you folks make many quite angry, and y'now what? Sometimes it is also legitimate to say "F*** em!"

I know that wasn't as well written as others, but this is who I am. . .thanks.

william Peace said...

Julie, First, I hope your health improves as well as the health care you receive. Second, go ahead and be inspired by me, Rachel, and others if you like. All I ask is to remember those that inspire are deeply flawed human beings like any other person.

william Peace said...

Julie, First, I hope your health improves as well as the health care you receive. Second, go ahead and be inspired by me, Rachel, and others if you like. All I ask is to remember those that inspire are deeply flawed human beings like any other person.

Julie H. Rose said...

Thanks. I know that. I would never want to be inspired by anyone less than a "deeply flawed human being."

As Leonard Cohen wrote, "There is a crack in everything. That's how the light gets in."

I never thought I'd quote L. Cohen. Now I might need to puke.

;-)

Middle Child said...

Thank you thank you thank you - Everything you have written is exactly (again) how I feel and how we felt. You have put it into words better. People who do not know "assume" they do know and if they know therefore you must not know - therefore you are wrong. Therefore its okay to swear at you or abuse you in other ways. You sir are a Bad Cripple - I wish there was a prize for that. People who toe the accepted mores of a society which assumes it knows what is the right way will never change anything - they are reduced to that most primitive of actions "name calling" in other times or in their darker moments they might want to smack you in the mouth - as someone almost did to my husband when he stood his ground on a justice issue. Good on you Bill. A Bad cripple of the year award for you!

Julie H. Rose said...

Wow. This post is attracting the spambots big time! Every day I get new notifications about where to buy drugs online! Is there any way to stop them?!