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Friday, July 26, 2013

Happy 23rd Birthday to the ADA: Oh and People with a Disability Still Get Screwed

I am extremely cranky. In fact I think I can safely say I am mad as hell. I have exchanged more emails than I care to think about with regard to the October meeting of the American Society for Bioethics and Humanities today. I gave a paper at the ASBH last year and will do so again in Atlanta this year.  This should be a very simple process but it has been made needlessly difficult. The powers that be at the ASBH have decided the ADA does not exist. Today I wrote the following: 

I would like to point out the ASBH has no information about the ADA on their website. There is no mention of the ADA on the meetings page aside from a cryptic reference to "special needs". There is no point person to contact at the ASBH office. Questions about the ADA are ignored or one is directed to contact the hotel. No information about mass transit, buses, and how to navigate the city are provided. No information about how to navigate the hotel are readily available. No information about access when one is giving a presentation is available. No information is available about access near the Hilton. No mention of interpreters for the deaf or conference materials made available for blind members. All this information is typically provided by comparable professional academic organizations and has been the norm for over a decade.

I concluded my email: 

As a person with a disability I get the not so subtle message I am not just on my own but my mere presence is unwanted. It is as though the ASBH considers the ADA an odorous burden one that is conveniently ignored.  I find great irony in the fact this issue has been brought up today the 23rd anniversary of the ADA. It is my hope the ASBH will some day acknowledge the ADA is important civil rights legislation that they not only comply with but attempt to exceed in an effort to be inclusive to all people. Here is an even wilder idea: in two years the ADA turns 25 years old. Perhaps the meetings theme could be dedicated to disability rights and the ADA. Of course this assumes people with a disability can get in the door and encounter a welcoming environment that has yet to exist at ASBH meetings.

So on the 23rd anniversary of the ADA I have few nice words to express. I will not be doing any celebrating. I will not applaud the passage of the ADA nor will I slap disability rights activists and scholars on the back and say job well done. Instead I will think of the reaction to the Capital steps crawl. For those that have no idea what this was see the following link:   This was a turning point in the lives of people with a disability. More than any single event, this tipped the tide in favor of passing the ADA. And yet at the time the crawl up the steps prompted anger more than support for disability rights among power brokers in Washington. The general public reaction was quite different and disability rights activists were galvanized. 

My thoughts though are grim. I am taken aback by the deeply ingrained ASBH hostility to inclusion and it highlights the limits of the ADA. More generally, I bemoan the fact the ADA has no social mandate. I bemoan the fact conservatives consider the ADA an odorous burden or unfunded Federal Mandate. I bemoan the fact those woefully unaware of the bias people with a disability encounter believe the problem was solved long ago. Afterall those blue wheelchair symbols placards are all over the place. Worse yet I am more fearful today of disability based bias than I was a decade ago. Like many other people with a disability I fear getting sick. I do not fear illness but rather our healthcare system. As I have noted before our health care system considers people with a disability an expensive drain on limited health care dollars. Insurance companies loathe our existence. Health care workers deem us unwanted extra labor. Some physicians want to end our suffering. 

On a day like today I am just mad. Perhaps I am furious. Here we are 23 years post ADA and barriers, social and physical, abound. Most alarming to me is the fact critical care centers, hospitals, are down right dangerous places for people with a disability. I saw this first hand in 2010. Thus I gave a bit of a shudder when I read Tim Gilmer's editorial, "No More Patient" in the most recent issue of New Mobility. I have decidedly mixed views about New Mobility. I will refrain from critiquing New Mobility because my issue is not with what it is but rather what it could be.  I should also note that I have taken Gilmer to task and he has always responded with grace and dignity. But what he wrote this month resonated with me. Gilmer is 68, a quadriplegic and has peripheral artery disease. He had a leg amputated last year. In short he has been through the medical mill like I was in 2010. 

Gilmer's editorial was about his most recent experience in the hospital with a serious leg infection.  He wrote that in six days he met 14 different physicians--an admitting physician, internal medicine physicians, internal medicine residents, a general medicine resident, vascular surgeon, and infection disease physicians. Of the fourteen physicians only four actually examined his leg. Gilmer estimated: "the grand total of medical personnel who proded, poked, and peppered me with the same questions over and over--as if none had taken the time to read my chart notes on any hospital computer, including the one in my room--totaled about 75". Think about this for a minute. 75 people in six days. One hears a lot about patient centered care and I recall reading the Patient Bill of Rights & Responsibilities when I was admitted. I doubt many people read this document. No single Patients Bill of Rights & Responsibilities exists. I have read about a dozen of these documents on line. They essentially state a patient has the right to be involved and direct their care. My question is pretty simple: how do you manage to direct 75 people one will see over a span of less than a week? How does on coordinate communication between 14 physicians in various sub disciplines? The answer is simple: patient care is at best disjointed and when one adds in a complex medical history often associated with disability, ingrained disability bias the result is patient care suffers. Suffer here means care is inadequate, mistakes take place, and hospitals routinely prematurely discharge complex patients. Gilmer wrote:

Two days after I was admitted, Doctor No. 15 cam in and announced I was being taken off IV antibiotics, put on oral meds, and sent home. I was woozy, feverish, leg red and swollen, blood work scary, lying in a pool of diarrhea. I railed, ranted, and recounted my entire medical history in detailed, graphic  examples, explaining to him the finer points of what it meant to be 68, spinal cord injured, with peripheral artery disease--until the color left his face. I guess this changed his mind.     

Gilmer and I were able to assert ourselves. This is great even though the psychic toll such encounters have are exhausting. I will readily admit in 2010 when I was seriously ill my encounter with a hospitalist shattered my confidence and made me wonder if my life had an redeeming value. It was in short a mind fuck of epic proportions.  And here is what keeps me up at night and fuels my anger. I am lucky. I had the ability to so no and say I want to live. Not all people can do this nor are all families as remarkably supportive as mine are. Thus Gilmer's editorial reinforced what I learned from my experience in 2010. Last year I wrote:  Disability, I have rediscovered, is a social malady. My forced dependency in 2010 made me realize the autonomy we Americans place such great value on is based on a very narrow definition. How do we measure autonomy, and more generally, what sort of lives do we value? Do we accept Peter Singer's utilitarian logic or address the literature produced by disability studies scholars who seek to broaden our understanding of life with a body well outside the norm? I would contend we are ill equipped to deal with disability, particularly when people such as myself and others with profound neurological deficits are in need of medical care. My words are way too kind and polite. I think it is fair to say lives are at stake and yet I wasted an entire day trying to educate people at the ASBH about the ADA. Really? 


Thaddeus Mason Pope, JD, PhD said...

Bill, I am on the program committee. Please let me know with whom you have communicated about this. I will follow-up. -- Thad

Lynn said...

I suppose it shows a lack of intellectual sophistication on my part that I find this acceptance of exclusion and indifference incongruous in the context of a professional focus upon ethics.

I'm glad to see that Thad is stepping up to advocate for you, but agree with you that it shouldn't take personal connections and an education campaign to achieve what should be, 23 years post-ADA, a no-brainer.

william Peace said...

Thaddeus, I will communicate with you via email.
Lynn, The ASBH is quite unusual in that they ignore the existence of the ADA. I suspect many medically oriented societies do the same thing due the prevalence of the medical model of disability. Most academic organizations in the social sciences meet the requirements of the ADA. As you know all too well violations of the ADA abound.

A said...

Peter Singer should always be referenced with his own words as a middle name. Peter It-is-different- when-it's-your-mother Singer.

william Peace said...

A. The reference to Peter Singer's mother is mean spirited and not at all appropriate. I am no fan of Singer or other utilitarian philosophers but personal attacks are never acceptable to me.

A said...

I don't see that it is mean-spirited.
My intention was to emphasize that he chose not to adhere to the rigid views prescribed for others. That he took care of his ailing mother is, to me, laudable, and a personal decision. Maybe whether philosophers walk their talk is irrelevant to the ideas they present.

william Peace said...

A. We have no insight into Singer's family life. Perhaps he advocated for his rigid utilitarian views. Perhaps his siblings forced him to support their mother. This is way too speculative. Based on what I have read Singer follows what he preaches. He is vegan for instance nor is he wealthy. I for one will stick to Singer's written work and leave his private life alone.

Stephen Drake said...

The story on Singer and his mother is contradictory and confusing; frankly, Singer seems to have worked somewhat to make it so. Forgive me for promoting something I wrote a few years ago, but here's a link and an excerpt from something I wrote that lays out Singer's conflicting stories about his mother - and the timing regarding their rollout. (go to link for formatting, links, etc.) -

Contrary to what both detractors and fans of Singer might think, it’s not all that unusual for Singer to say one thing in a given setting only to modify it or contradict it in another. Most people don’t keep track of the times he’ll concede points in a debate, only to “forget” that he conceded them when in front of another audience. Singer seems to rely on the fact that most people don’t keep track of his contradictions and inconsistencies.

This pattern became evident even as he first came to Princeton. And it came with his conflicting accounts of a situation he faced with his own mother. In 1999, Michael Specter wrote in the New Yorker that Peter Singer spent money to support his mother, who had advanced Alzheimer’s – and the apparent contradiction of him providing that care in the face of Singer’s views on personhood.

Singer’s comments, which became widely circulated in subsequent coverage of him, explained the contradiction this way:

Singer has spent his career trying to lay down rules for human behavior which are divorced from emotion and intuition. His is a world that makes no provision for private aides to look after addled, dying old women. Yet he can’t help himself. “I think this has made me see how the issues of someone with these kinds of problems are really very difficult,” he said quietly. “Perhaps it is more difficult than I thought before, because it is different when it’s your mother.” (emphasis added)

This was a “humanizing” portrait of Singer – although sometimes used to brand him a hypocrite as well.

Whether or not Singer is a hypocrite, it’s clear that he unpacks certain statements, revelations and positions at times that certainly seem aimed to please the audience in front of him. How else to explain the December 2000 interview with Ronald Bailey in Reason Magazine that gave a very different account of why Peter Singer’s mother got the support she needed to live even with advanced dementia:

Rigorous adherence to a single principle has a way of hoisting one by one’s own petard. Singer’s mother suffers from severe Alzheimer’s disease, and so she no longer qualifies as a person by his own standards, yet he spends considerable sums on her care. This apparent contradiction of his principles has not gone unnoticed by the media. When I asked him about it during our interview at his Manhattan apartment in late July, he sighed and explained that he is not the only person who is involved in making decisions about his mother (he has a sister). He did say that if he were solely responsible, his mother might not be alive today. (emphasis added)

(Note: Singer’s sister is Joan Dwyer, a lawyer whose career has involved strident advocacy for people with significant disabilities, some of which she writes about in the Law Review article “Access to Justice for People with Severe Communication Impairment.”

The statements in the Bailey interview did not get circulated in the media – and the earlier story of it “being different when it’s your mother” still plays out in most people’s background knowledge of Singer.

But if you follow his articles and speaking gigs closely, it probably won’t be long until you’ll find your own examples of Singer blithely contradicting himself and hoping the audience has either the ignorance or the good manners not to notice.

Stephen Drake said...

My thoughts run along similar lines to Lynn's. I'd find it useful and *helpful* if Prof. Pope, as a member of the program committee, could offer up an explanation why ASBH has failed to offer and/or communicate in regard to disability accommodations for attendees and presenters - accommodations and communications that have been standard at major (and not so major) conferences for years if not decades. Obviously, the ASBH members with an "affinity" re: "disability ethics" haven't haven't thought about conference accessibility as a place to start.

william Peace said...

Stephen, I do not in any way question your assessment of Singer and his being contradictory. Obviously I disagree with much of what he writes. The same can be said for what other utilitarian philosophers produce. I simply refuse to engage Singer because I am put into an inferior position--one must start by asserting why my life has value. I also choose to leave any scholar's family life alone.
As for the ASBH, I am shocked and angry. Pope's effort to help appears to have vanished. He contends the ASBH is technically in compliance with the ADA.

Nessie Siler said...

And therein lies the problem. "Technical compliance " has seldom had anything to do with actual, livable,access. I am sorry Pope seems to have vanished. I feel this reflects poorly indeed upon him.