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Tuesday, April 2, 2013

The 500th Post

The past two weeks I have witnessed a veritable attack on people with a disability. First, Chana Joffee-Walt launched a broad based attack on social security disability benefits. She claimed massive fraud is taking place. Worse yet, the number of people being added to social security disability is sky rocketing. The implied message is hardly subtle: disability is a scam. If people really wanted to work they would suck it up like the rest of us. Second, Iraq war veteran Tomas Young has announced his intention to die by starving and dehydrating himself to death this month. Young has a veritable cheering squad lauding his decision. Phil Donohue and Chris Hedges lead this squad. Third, Robert Ethan Saylor, a man with Down Syndrome, refused to leave a movie theatre and security restrained him. A few minutes afterwards Saylor was dead. A grand jury determined no crime was committed by the men that restrained him. Fourth, in Vermont Amanda Baggs a noted disability activist, is in the hospital. Baggs has Autism and does not communicate with speech. Instead, she relies on writing as a means of communication. She has been strongly advised to consider alternative treatment--that is death over the insertion of a feeding tube.

The incidents above are but a small slice of what I believe is a cultural backlash against the civil rights of people with a disability. This backlash and spate of anti disability rhetoric is taking place in a void of gross misunderstanding and ignorance.  Two decades after the ADA was enacted the vast majority of people in America do not have a clue that disability is a social malady. Disability has never been nor will it ever be about a given physical deficit or any single individual. Disability is a complex social construct. I fear people will never "get" disability because it is impossible to reduce disability to a sound bite or tweet. To say I am frustrated is an understatement. I am weary of being the educator. I am weary that every where I go I am confronted with social and architectural barriers. I am weary of hassles checking into hotels. I am weary of continually being forced to explain my civil rights. I am weary of asserting life with a disability is valuable to me and all those I know with a disability. I am weary of the endless debate over assisted suicide legislation. I am weary of the cultural logic that one is better off dead than disabled.  So please forgive me that after reading Rosemarie Garland-Thomsen article "The Cultural Logic of Euthanasia: Sad Fancyings in Herman Melville's Bartleby" published in American Literature I am decidedly unimpressed.

I should be impressed. Garland-Thomsen is a name scholar in disability studies. American Literature is a prominent peer reviewed journal. The subject matter and analysis is academically rigorous and well written. The essay is bookended by an interesting discussion of Christopher Reeve and Roosevelt Dawson who was euthanized by Jack Kevorkian. So why am I unimpressed and in fact disillusioned? One passage stood out and profoundly depressed me.

The cultural logic of euthanasia--manifest from Kevorkian's vigilante euthanasia to routine selective abortion of disabled fetuses--is a modern ideology that aims to to pragmatically eliminate the unfit, decisively preempt supposed suffering, and progressively perfect human-kind. I am not arguing that this logic drives malevolent oppressors to victimize innocents but, rather, that this set of assumptions is internalized and institutionalized in practices and attitudes that structure the choices--the preferences--of us all.

This is a lovely passage that let's people off the hook. If I have learned one thing since 2006 when I turned my full attention to disability right and bioethics it is that bigots abound. Well educated bigots exist in the form of physicians, lawyers, businessmen and women, elected officials, judges, school administrators, etc. None of these people consider themselves to be bigots and Garland-Thomsen is giving them an out. It is not me one could cry it is the system or institutional policy. The passage above highlights the degree to which disability based activism is totally divorced from disability studies. For Garland-Thomsen disability is an intellectual concern and part of her academic career. This is not a critique of her work as she is an important scholar. Instead, her work  symbolizes something that has consistently bothered me--the majority of disability studies scholars in my opinion consider disability based activism to be tawdry. The irony here is that disability studies emerged as part of the disability rights movement. I bemoan the loss of scholars like Paul Longmore or an activist lawyer like Harriet McBryde Johnson who both skillfully straddled disability studies and disability activism.

At the end of Garland-Thomsen's essay she quotes John Kelly, a long time disability rights activist who is currently on the Board of Not Dead Yet. In  a letter to the Boston Globe circa 1998 Kelly bemoaned the death of Dawson who could have led a rich and full life.  Kelly wondered why no one told Dawson life was worth living and that he could do many of the things he once did. Garland-Thomsen wrote "The answer, in short, is that Dawson was not told because most of us don't know 'this' either".  Here is where Garland-Thomsen succeeds as a disability studies scholar and fails as an activist. And here I will openly acknowledge I am not being totally fair; Garland-Thomsen has never claimed to be an activist. The activist and scholar in me is outraged by "malevolent oppressors" to use her words. These "malevolent oppressors" take many forms and I wonder just how many lives have been lost. Oppression exists. I have experienced it. Tomas Young has. Amanda Baggs is battling oppressors as I write these words. Put in this context, intellectually challenging discussions of Milton's Bartleby and how they relate to Reeve and Dawson fall flat for me. Such analyses are important--I get that. A rigorous disability studies perspective in academia is important. But I for one cannot divorce my academic work from the gritty reality of every day life. In fact I cannot fathom how any disability studies scholar could separate activism and scholarship.

The divide between a scholar such as Garland-Thomsen and myself has been on my mind throughout the day. I have wondered and worried about Amanda Baggs. I was in a comparable situation in the Fall of 2010. A hospitalist suggested my life was not worth living. I rejected this idea as has Amanda Baggs who wrote with a controlled fury about the physicians she has been exposed to and the hospital where she sought treatment:

Culture of death here? Disability hate? Yes. This is the same place that tried to refuse me entry because I didn’t have a 24-hour staffer willing to stay with me from my DD services agency. That says it all. And they think its better sometimes when people die. Healthcare professionals don’t admit their bias but they’ve found they think our quality of life is terrible at the same Time we think ours is fine. It influences them. This is why I got into disability activism. I somehow never thought it would be me again, in the position of being treated as better to let me keep aspirating than try a G-J feeding tube. They’ve talked to me what a huge choice it is. I made the choice easily months ago. They been talking feeding tubes since I was first diagnosed. No surprise here. They tell me it might not work. They tell me consider alternatives. The alternative right now is pneumonia and death. They tell me all this bullshit. Underneath the bullshit is ideas they aren’t willing to admit they have. Ideas like: No quality of life. Better off dead. Let things take their course. No matter what we do she’ll get sicker and sicker and die. So might as well do nothing. Pretend it’s not happening. Pretend the ground glass appearance of my cat scan is just a sensation I imagined. Pretend pretend pretend.
Has society really stooped this low? No wonder people with a disability fear hospitalization. When "alternatives" such as death are suggested in the absence of a terminal illness I cannot help but be outraged. I for one am not going to my book shelf and pull out a book by Milton. Instead I will fight the oppressors like many others.  One last point: this is my 500th blog post. I never thought I would write so many posts. I can happily state writing here has been a wonderful experience. I love the immediacy of blogging and the community of people who fight for disability rights.  


Middle Child said...

It is the same in Australia. I don't know where this "push" to change society's morals towards disabled is coming from but attitudes are hardening.

I am usually blown away by your essays and this one is no exception. You write how my husband and I used to (and still for me) feel but didn't always have the turn of phrase. May I circulate this essay on my Facebook page of course crediting you. I have a few people in there who have been fighting in these areas mostly because they or their relatives have been injured or killed in some way medically and some are disabled. I am still amazed that people who knew us, close relatives had no idea - there were some horrible things done and after time Don had developed his own way of getting revenge - which felt pretty sweet - he enjoyed that sometimes - but rather it didn't have to be.

this article was featured in the Melbouren Age today and on radio. - They made it out that she has done something noble I felt sick to hear her likened to some sort of hero - the ailments she had as she described were nothing to what I saw my husband go through and still he was hungry to live...this has been given a big push by somebody I feel - just thought you should know

Elizabeth said...

It does seem all fucked up these days -- on the one hand we live in a country (or world) that hates disability and cries out about the "burdens," "the expense," etc., and on the other, women are slowly and inexorably having their rights to govern their own bodies chipped away with a false embrace of "life" (I'm speaking of the recent law in South or North (?) Dakota making it illegal to abort a child with Downs' Syndrome. I am not giving up on advocating for the disabled, but every now and then I feel so weary and can only say, "It's impossible."

Thank you for your 500 posts -- it's always stimulating to come here and to read of your life and your passions. I hope you write at least 500 more and perhaps influence multitudes.

E Fischer said...

The statement you quoted from the essay by Rosemarie Garland-Thomsen is indeed saddening for the reason you stated but it is more so since her conclusion is also wholly superficial. While she points to a manifestation of a complex issue, getting to the core of the matter requires simplicity. The simple understanding that it is our psychology, of built-in bias that we are programmed for, to greater and lesser extent, that determines the prevalence of ‘institutionalized bias’. You do get closer to the heart of the matter by saying, “It is not me one could cry it is the system or institutional policy”. Just as everyone knows they are an excellent driver and other people are at fault for causing accidents, when we can group a few people together and point a finger, it serves our instinct to deflect blame.
The disabled shouldn’t be a ‘group’, they are you and me.
Again I would go further and say that any kind of activism is seen as tawdry because you are trying to buck the establishment, even though, as is often the case, the issue being advocated for is often assimilated.
The problem is, again, a psychological one that people fear allowing this 'strange' new element into the tribe, even where advocacy for civil rights for severely disabled (children) is concerned, like some kind of pestering insect.
It is not only that anyone can become disabled at any moment; why is it so difficult for us to accept differences that in no way actually harm the whole, while the whole exults extreme sports where daily people are killed and proxy wars, where daily people are killed.
Growing up in early ‘70’s California there was a culture of motorcyclists stigmatized by its association with gangs. When my father and I went on our motorcycle camping trips, sites would refuse entrance if they knew in advance that you were on motorcycle. The solution was for his secretary to book using company stationary.

In trying to have government agencies act on the laws that should benefit my extremely disabled son I have seen so many doors closed out of ignorance.

While there are a plethora of issues to discuss, nowhere does it become more needed then when discussion revolves around death as an outcome. “Better off dead” is a provocative phrasing that tries to showcase that at the end of the day decisions made out of bias or ignorance can lead us into the long hard night. The trend in societies around the world is that death is preferred.
One of several examples I experienced was standing in the pediatric intensive care unit, my son lying in induced coma. The chief physician, in his morning rounds with interns, put his arm around me, addressed his staff and said, “in cases like this it’s decidedly better that the child dies at home”. That was seven years ago. Long live the resistance.

Henning S√łndergaard said...

You talk about an institutional bias that lets the professionals off the hook. But I can’t help thinking what makes up those institutions – yes, it’s the very same people who think they can relinquish their responsibility by blaming the exact same structures that they are the pillars of. Go to one and (s)he’ll say “No, it’s not me who decides this. You need to see my boss.” So you go to the boss who conveniently replies “I only did this because my employees opted for it.” It is an expedient excuse for everyone involved to claim it’s a systematic and/or cultural thing to blame the victim. Nobody has to take the responsibility that they all are the rightful owners of.

Rachel Cohen-Rottenberg said...

Bill, I agree with your analysis wholeheartedly. I think what bothers me most about Garland-Thomson's approach is the overgeneralization of "...this set of assumptions is internalized and institutionalized in practices and attitudes that structure the choices--the preferences--of us all." Whenever I see the phrase "of us all," I can help but see it as a way to flatten the landscape and shy away from making distinctions between internalized ableism and the ability to actually act on it. Yes, I'm willing to acknowledge that we all have internalized ableism (even us disabled folks), but some people are in a position to act on it in a way that others are not. Amanda Baggs' doctors, for example, are in a position of power to misuse their ableism; Amanda is in a position in which she has to fight whatever ableism she still carries in order to stay alive. These are very different positions to be in, and they have to do with choices that people make. No amount of institutionalized or internalized ableism forces a nurse to laugh at Amanda when she says she wants to be kept alive by any means necessary, or forces a med student to suggest that a life-saving procedure is unnecessary. These are choices, and there are victims involved.

When people say "of us all," all I can hear in my head is the Christian idea that we are all sinners in the eyes of God. Even if, for the sake of argument, I were to agree with that position, some people commit bigger sins than others, and that matters. Not all sins are equal. Certainly, suggesting that a person who wants to live should choose death is a somewhat more destructive choice than, say, calling the doctor a bad name when he makes that suggestion.

Lucretia said...

I am often accused (if not outrightly it is certainly implied with eye-rolling or "now, now" comments) of hysteria when I say the healthhcare system wants my husband dead. Are they chasing him around with a syringe or a bat? No. But the chronic lack of access to care, and the endless delays and inconsistencies of care when it is grudgingly given, not to mention the lack of follow-up and communication... yeah. It would be easier on everyone if he'd just (die) go away.

william Peace said...

Great comments. Thank you.

Lucretia, Continuity of care is exceptionally difficult to maintain. In fact on bad days I would say it is impossible. The work now rests upon the person accessing health care and it is an arduous endeavor. I too have seen the rolling eyes and sometimes anger when I state how hard it is to access appropriate health care. You nor I are alarmists. We are stating an uncomfortable truth.
Rachel, For RGT and many other disability studies scholars disability is a theoretical challenge. Work in the Ivory Tower is needed but my gosh that is a limited frame of reference. Lives are at stake and I cannot divorce activism from my scholarship. Without this Amanda Baggs might be dead.
Henning, I saw the institutional bias when very ill in 2010. When being discharged from the hospital I was told I have these two options. It was up to me to make the arrangements. When I asked about other options I hit a brick wall. I was told there are no other options. People working in institutions need to question the status quo and care about those that do not fit in the prescribed box.
Eric, As a parent, I cannot imagine the encounters you have had caring for your son. The bias you confront is far worse than anything I have experienced. People with profound cognitive impairments are severely discriminated against. Better off dead is a provocative phrase and I use it because it makes people uncomfortable. People need to acknowledge ignorance and actually try to learn.
Elizabeth, It is North Dakota the law has changed. The assault on disability rights is similar to the assault on women's rights to control their reproduction. I never dreamed such assaults would take place. I am astounded and distressed. Amanda Baggs experience is stunning in part because she lives in Burlington, VT. This is a university town known for being liberal. I shudder to think what would have taken place if she was seeking care in a rural backwoods hospital.
MiddleChild, As always I appreciate your kind words. I deeply admire the fact you will not let your story go. It must be told, it must be analyzed, and must be used to enlighten others.

Sammy Beach said...

Thank you for putting these events together in one place and the analysis. I've watched these and related stories rolling down my twitter timeline this past couple of weeks with disbelief that they're occurring simultaneously and in such disparate locations. I'm tweeting the hell out of this blog. Thanks. More, please.

Sandy Goodwick said...

People with 'lesser' disabilities ... precisely the ones that can afford them to work without accommodations, to 'look' normal, etc., tacitly add to the ignorance themselves when they fail to regard their individual journey as part of a much larger, non-homogenized one.

I went into teaching in 1972, with Moebius syndrome (congenital facial paralysis). I already had ignored the Dean's suggestion that I not go into teaching "... because of your... problem, Sandy". I also ignored the suggestion to go into 'special' education, because I had no experience there as a student, and I felt my 'mission' was to show that I had far more to offer education than a smile. (I know a woman my age with same disability who was told "you wouldn't be a good role model" if she went into teaching.) I taught within Lutheran schools for 21 years ...

I went into 'special' education to honor the difference I felt growing up so alone. Ultimately, I have found a system that creates passivity by teachers who fear retaliation when questioning bad administrators' actions. 'Special' education is a nutritional Crisco where none of the teachers or administrators have relevant, first-hand conception of disability history, disability rights, disability anything other than the 'Crisco' of IEP goals and objectives.

I had a student who CRIED whenever his 1:1 nurse was near him. She was verbally abusive; I tried to help her be more 'positive'. When I learned she had been FIRED from taking care of the SAME child a year earlier (yelling, etc.) when her supervisor came to observe her, I learned the teacher observed this for TWO YEARS. The %%^&^$ went to IEP meetings with the parents! When a nurse observed her adding air to the g-tube. suctioning til he gasped, standing on his feet, pinning his arms behind him then cinching the seatbelt ... I absolutely called the authorities - several times! The 'system' just yawned! They removed her from his care ... for awhile. The other nurse QUIT in outrage towards an agency that didn't check her previous employer.

This is just ONE story.

In connecting with the author of a professional article on teachers with disabilities, I learned the researcher COULDN'T FIND ANY. The ones that are there are apparently known primarily by the accommodations they sought rather than the wisdom they have re: disability rights advocacy.

School systems have 'erased' our "dangerous memories", replacing them with 'diversity' activities recognizing ONLY racial and ethnic groups. Even the state teachers' union is the same.

We don't exist. I am 63 now and I am beyond outraged that the insight we have gained via Martin Luther King, jr. the ADA, Ed Roberts ... is essentially worse than 'dead in the water'.

nurseonwheels said...

I too am shocked and saddened by the increase in prejudice toward the disabled. I am a nurse who had to leave the nursing field due to my use of a wheelchair. I would like to say I never discriminated against disabled. I hope I am telling the truth. Sometime when we least realize it we are being biased. I long to become an activist but am not sure where to start. There are lots of other nurses in my place. Nurses who spent years of their lives training and then more years caring for others only to be sidelined through injury or illness. There must be a way to harness all that brain power and restore them to the life they love. I just don't know where to start. But I will keep looking

william Peace said...

Nurseonwheels, Your experience and insight would be ideal and you should be on a hospital ethics committee. You would also make an ideal patient advocate.
Sandy, I wish I could disagree with your gloomy conclusion that the ADA and efforts of people like Ed Roberts are "dead in the water". There is a veritable all out assault on vulnerable populations and I fear Obama is going to compromise people to death. I am stunned our social safety net is being dismantled piece by piece.

Amanda said...

Actually that this happened in a liberal teaching hospital is kind of the norm. The push for disabled people to die is not a liberal conservative thing, they all want us to die, euthanasia is even a liberal ideal for many people, a big problem for us here in VT politics. Would write more but kind of tired and can't make more words about this right now. There is so much I want to write, have to write, because I know what happened to me can spur change around here that could spread to other places too. But I don't expect good liberals to be any better about wanting me alive than anyone else is. Sometimes they're worse unfortunately.

william Peace said...

Amanda, I expect much more from teaching hospitals. It is where we train future physicians who will apply what they learned during the rest of their career. So yes, I expect much more in terms of cultural awareness. That is they should recognize the diversity of life--with and without a disability. Your point r.e. liberals in VT is well taken. But the push for assisted suicide has consistently failed in the Northeast.