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.