Fear Exists for a Good Reason

Over the past week I have followed the story of Amanda Baggs via various neurodiversity blogs. Baggs who I mentioned in my 500th post is an Autistic and a fascinating writer. She is most well known for her You Tube video "In My Own Language". Based on what I read, Baggs had gastroparesis that caused several instances of of aspiration pneumonia. As I understand it Baggs needed a feeding tube inserted to increase her nutrition and lower the risk of aspiration. This is not complex medical care--I suspect it is standard operating procedure. But her experience has been anything but standard. Multiple neurodiversity blogs and people directly in contact with Baggs have reported she was repeatedly questioned about her decision to get a feeding tube. Thankfully the neurodiversity community in particular and the disability community in general leaped to help and protect Baggs. Her experience in a Burlington Vermont hospital was a nightmare. Fortunately she not only survived but is in fighting spirit. She is writing about what she experienced and its implications. See: http://youneedacat.tumblr.com/

I was deeply moved by Baggs most recent post. What she wrote today is shocking and a testament to how deeply ingrained disability based bigotry is within the American health care system. Below is her entire post.

“Are you at peace with your decision?”

Before I got my feeding tube. After I’d already signed an informed consent form. A pulmonologist came into my room with a gaggle of interns and residents behind him. People who were learning from him. People who looked up to him as a teacher and role model.

He had seen my cat scan. He knew how many times I’ve had pneumonia recently. He knew it would keep happening if we didn’t find a way to stop it. He knew that pneumonia is a deadly disease and that my health was worsening with each infection. He knew how many doctors had tried to talk me out of choosing the feeding tube — choosing to live.

“Are you at peace with your decision?” Is a question I would expect to be asked repeatedly if I’d chosen to avoid treatment and go home and wait to get the infection that would kill me. Not a question that goes with choosing life. He asked me at least three times in a row.

I had a friend who came to visit from out of state, in the room with me at the time. She came because she heard I had pneumonia. Her father died of pneumonia. She was terrified for my life. She witnessed this conversation — easily, as she put it, the most genteel of the ways I’d been pressured to die.

And yet she likened it to the recommended harassment that people who choose abortion get — or for that matter, people who choose not to abort a fetus with disabilities. She said it was bullying, harassment, pressure to end my own life, no matter how genteel it looked on the outside. Who the hell gets asked repeatedly if they’re at peace with wanting to be alive? For me, choosing a feeding tube is choosing life. There were risks, there remain risks, but the risk of not getting the tube was imminent death, so, yeah. A no brainer, for me. When you choose between two risky things, you choose the one with the most possibility of survival. And feeding tubes are safer than aspiration pneumonia by far.

Are you at peace with your decision? Really? Seriously? Who asks that? Someone profoundly uncomfortable with the kind of life that requires certain kinds of technology. Someone who overtly or covertly hates disabled people.

I intend to use the life this feeding tube gives me, to ensure that no other patient in this hospital has to go through what I’ve been through. That nobody gets asked this question for choosing to live. Not even once. That doctors don’t get to try to persuade patients, especially disabled and other hated patients, that its better to reject life saving treatments. Regardless of what the doctor thinks. When I’m through with them, when the Vermont disability community is through with them, they will no longer be allowed to go there. They can stay bigots if they feel like but they won’t be allowed to express it on the job.

Because we don’t just naturally want to die the moment our body requires some kind of nonstandard way of sustaining itself. Right now I am hooked up to a machine pumping food into my intestines and I LOVE IT BECAUSE IT MEANS LIFE.

Genteel pressure to die. I too experienced that genteel pressure. Such pressure is put in ever so polite terms. For Baggs it was "Would you like to consider alternative treatments"? The non genteel interpretation is "Would you like to die"? For me a hospitalist stated "We can make you comfortable if you decide to forego antibiotics". The non genteel interpretation: "We can let you die."  This genteel pressure to die is not out of the norm. In fact I cringe when I hear the term "patient centered care". My translation of "patient centered care" is "you are on your own". Being on your own in a hospital is dangerous for any person but for a person with a disability the risks are exponentially greater. We people with a disability represent the limits of medical science and its failure. We are perceived to be in pain; suffering horrific indignities because we have lost our autonomy. Our bodies are compromised, abnormal. We are confined to a wheelchair. We are bed bound. Our life is a disaster. But wait! There is hope. We miserable cripples have the power to say no more. Hence the physician "caring" for Baggs asks "Are you at peace with your decision". The internists and residents that accompanied the physician have learned a lesson in empathy--or at least that is likely what the physician in question believed. I would offer the lesson learned was much more basic. Death is preferable to living a life with a disability. Who would want to live like that? Imagine if you had Autism. How horrible. I suggest we need to ask a very different set of questions. In Baggs case, the question is not if you want to live but rather how we can we as physicians charged with your care empower you to live a full life. 

Girl with a Cane Asks Important Questions

I read many disability related blogs. I am particularly drawn to blogs from different countries. One blog I read on a regular basis is Girl with the Cane written by Canadian Sarah Levis, a freelance writer, who has a vascular condition in her brain called an arteriovenous malformation. Levis often writes about disability issues in Canada and the United States. Today I read her latest post "Why Do Mike Rice and his Basketball Team Matter More than Disabled People". See: http://www.girlwiththecane.com/mike-rice/

For those not interested in college basketball, Mike Rice was fired as head coach of the Rutgers University basketball team. Video of Rice berating his players verbally and physically went viral. In the last 48 hours it has been hard to avoid this story--think total media saturation. Levis asks a very interesting question: "why do these stories get so much coverage and generate so much outrage"? Levis contrasts the media saturation about Rice with disability related stories that garner scant attention. She mentions the Judge Rotenberg Center where electric shock was used to discipline children which was declared torture by the UN; restraint and seclusion in secondary schools; the wide spread abuse found in NY State group homes. Levis pointedly asks NJ Governor Chris Christie why he has issued a statement about Rice but failed to attend the Joint Legislative Hearing on the closing of two institutions in NJ.

I share Levis frustration. I too wonder why stories about disability are rarely deemed news worthy. I also wonder why the few stories that do hit the news are framed in a way that reduces disability to antiquated stereotypes. The mainstream media excels at what many people with a disability identify as  inspiration porn. Think Oscar Pistorius, the fastest man with no legs or Christopher Reeve whose life concerned one thing--cure for spinal cord injury. These men produced awesome visuals the media sucks up like nectar of the gods. People who know nothing about disability are inspired and brought to tears. Misleading leaps to the forefront of my mind. Disability is not well represented by men like Pistorius and Reeve.

Levis post reminded of a book I loved--The Short Bus by Jonathan Mooney. If you ever want to prompt a strong reaction among a group of people with a disability just bring up the topic of the short bus. Loud groans will be heard and bitter complaints. The short bus came into being in 1975 via the Individual with Disabilities Education Act (IDEA). The intent was good--children with disabilities had the right to an education, a first in American history. However,  IDEA made no mention of how to get students with disabilities to and from school. Enter the short bus or as I prefer to call it segregated transportation. The short bus quickly became the symbol of special education and served a specific social function. Mooney wrote:

Our myth of who we are, who we should be, is actually created by categorizing people with disabilities. Disability is inherently a negation. In our culture, people with disabilities stand more for what they are not than what they are--not normal, not whole--a negation that calls into being its opposite: the normal. The normal looms over all our lives, an impossible goal that we are told is possible if: if we sit still, if we buy certain consumer goods, if we exercise, if we fix our teeth, if we... The short bus police that terrain; it patrols a fabricated social boundary demarcating what is healthy and sick, acceptable and broken, enforcing normalcy in all of us.  

The short bus is still widely utilized. Thus it is no wonder disability is badly misunderstood among members of the media. We teach children from their initial entry into the educational system that the segregation of people with a disability is the norm. We have special buses and special education. We have special resource rooms. The message is clear: we are different, inferior. We are not worthy as Levis stated. We are not important, our civil rights are different. Given this important issues related to disability will continue to be ignored by the mainstream media. While this is undoubtedly a gloomy assessment I am hopeful social media has the power to change the social situation of people with a disability. There is a vibrant online community of disability related bloggers. There are Facebook pages dedicated to disability rights. Disability studies programs exist on university campuses. The wall of exclusion is being undermined and I hope to see it reduced to rubble in my life time. A guy has gotta hope, eh.  

Inside Every Cripple a Non Disabled Person is Trying to Get Out

 I am having a good morning. The comments on my 500th post and by extension on Facebook have cheered me up. There are other people fighting the good fight. There are people who get how deadly ableism is, that is our ingrained bias against people with a disability. The issue for is why. Why do the vast majority of Americans have no clue what ableism mean? Why do people fail to equate disability rights with civil rights? Why are people resistant to go against the grain and question entrenched beliefs that make no sense?  More specifically, why do health care professionals take such a dim view of life with a disability? In part, people with a disability are the symbolic representation of the limits of medical science. Health care professionals, public schools, and a host of other institutions do not know how to react when people with a disability thrive. We are not following our prescribed roles as tragic failures. Complicating matters further is fear--people with a disability are feared. Thus at a practical and symbolic level people with a disability call into question the utility of science and technology. How does this play out in the real world? In the case of spinal cord injury people without a disability gush over impractical and essentially worthless technology such as the exoskeleton.  Much time is wasted encouraging newly paralyzed men and women to learn how to "walk". This is problematic. Symbolically, the use of a exoskeleton sends the message walking is good using a wheelchair is bad. Instead of pushing a newly paralyzed person to walk and investigate stem cell research I would argue figuring out how to manage one's bladder and bowels is far more important. 

Culturally, technology reigns supreme and the hard work it takes for a person with a disability to navigate the world is not valued. Daniel Callahan maintains that we have created a "beast". That is technology has replaced care; what was once the bedrock of the medical sciences. This directly affects people with a disability because we are perceived as failures. Technology we revere did not cure us. This is a personal tragedy. Note the word personal. The idea disability is a uniquely individual experience permits and empowers ableism. This cultural assumption enables a host of social violations to occur because people with a disability are not a unique and distinct minority group. People with a disability are losers. Worse yet, if people with a disability really tried hard enough, think Christopher Reeve, they would spend their time overcoming their disability. This thought crossed my mind when I was reading about Marshal  Sahlins, an eminent anthropologist, who resigned from the National Academy of Science in protest over the NAS election of Napoleon Chagnon.  This has generated a heated debate within anthropology. I reread an interview with Sahlins in Dissent and was struck by the following quote:

The premise of American overseas aggression, according to Donald Rumsfeld and others, is something like the line in the movie Full Metal Jacket: “inside every gook there is an American trying to get out.” All we have to do to liberate this innately freedom-loving, self-interested, democracy-needing, capitalist-in-waiting is to rid him of the oppressive, evil-minded regime holding him down—by force if necessary. That is, Chagnon’s view of self-aggrandizing human nature is the sociobiological equivalent of the neocon premise of the virtues of American imperialism: making the world safe for self-interest. It is the same native Western ideology of the innate character of mankind. A huge ethnocentric and egocentric philosophy of human nature underlies the double imperialism of our sociobiological science and our global militarism.

It does not require a stretch of the imagination to replace "inside every gook" with "inside every disabled person" there is an able bodied American trying to get out. I would argue we need to ask an entirely different set of questions. This is something Jackie Leech Scully has proposed in her book Disability Bioethics. Deaf for almost thirty years, Scully wrote that no person had ever asked her "what is it like to hear as you do"" Instead, people have asked me "How much can you hear"? Similarly, people have asked me "How long have you been paralyzed"? instead of "What does it feel like to be paralyzed"? These questions are profoundly different. One is asking about the experience of deafness or paralysis the other sets one up to fail; the standard or norm is created by the questioner and assumes a terrible flaw exists. The impairment is the start and end of the narrative. The disability is firmly tied to an individual. In pushing people to ask a totally different set of questions it is my hope people will come to a fundamental conclusion--disability is normal, it is an integral part of the life cycle and human history. What was once a singularly uniques story becomes a social problem that deserves careful consideration.

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.

See more at: http://youneedacat.tumblr.com/post/46772164821/so-i-get-woken-up-at-seven-someting-innthenmorning

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.