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Sunday, June 8, 2014

Syracuse University SPAWN: Philosophy of Disability

I am upset. I expected to feel this way today. I am depressed. I also expected to feel this today. It is well out of the norm for me to go to a conference and expect to leave depressed. My angst is deeply rooted and practically based. The conference has been an access nightmare. Multiple scholars with a disability chose not to attend. The papers presented posted on line  were completely inaccessible to blind scholars. CART and interpreter services were addressed late in the game and inadequately. Deaf scholars chose not to attend. In fact no one from the Syracuse disability studies department is present or has made an appearance. Wheelchair access has left much to be desired. The conference hotel accessible shuttle bus wheelchair lift was broken. I learned the lift has been broken for the last three and half months. Sadly I am not surprised. Lunch yesterday was essentially inaccessible because the tables and aisles to the buffet were too narrow. I was hence put in a position of dependency, my autonomy needlessly subverted. 

It would be easy to take the organizers to task for the lack of reasonable accommodations. The simple fact is they did the best they could. I went out of my way to help them as did others on campus. I tried to explain what was involved in making a conference accessible to all scholars. In this regard they failed as did I. Unlike the inaccessible conference on health care and disability at William Hobart Smith I wrote about last fall, the organizers are not to blame. The required knowledge to hold an accessible three day conference cannot be learned in months. I have no interest in playing the blame game as it would be all too easy to blame Syracuse University as an institution. This sort of blame would be misplaced. 

The noted scholar Lenny Davis started yesterday by talking about the lack of access at the conference. Davis also wrote the following to Chancelor Syverud and Provost Spina: 

I will be attending the SPAWN conference at Syracuse this weekend.  However, there are those who will not be attending.  This annual conference chose as its theme Disability and Philosophy--a welcome addition to what seems to be a very significant conference.
The reason distinguished scholars are not attending is that a series of issues concerning accommodations for disabled participants arose.  I want to state at the outset that the conference organizers are hardly to blame.  Everyone who has organized conferences in general and particularly those involving disabled participants knows that there are many complex issues to deal with.  One cannot expect organizers with little or no experience in this area to get things right.
In this case, the conference organizers are on a steep learning curve.  They clearly regret the frustration caused to potential participants. What they, and your university, need is a full-time ADA coordinator who is knowledgable and can help anyone organizing a conference or dealing with any aspect of university life comply with the ADA.
It should be no surprise to you that the ADA has been the law of the land for almost 25 years.  Yet compliance with its provisions has been spotty.  I would have thought that Syracuse U of all places would have already moved toward full compliance (if only to avoid law suits under the ADA).  Syracuse, which houses one of the nations most distinguished disability studies PhD programs should be a model for ADA compliance not an example, in this case, of problematic behavior.

Based on my experiences over the last year, I would suggest Syracuse is culturally welcoming to all people with a disability. Syracuse fails in making the campus and too many events inaccessible. Part of this is geography and a historic campus. Many buildings are quite old and the campus is hilly in the extreme. It is not an easy campus to navigate. I can happily live this. Architecture can be changed. Lifts can be purchased. The cultural milieu is far more difficult to change and the culture at Syracuse does not need changing. At issue is a well known flaw Davis identified: Syracuse has no ADA co-ordinator. There is no person for event organizers to seek out to insure access for people with disabilities is met. Faculty have been advocating for an ADA co-ordinator for years. Until an ADA coordinator is hired multiple events will remain grossly inaccessible. 

I should be a happy camper as there are many scholars present whose work I admire; Eva Kittay, Lenny Davis, Anita Silvers, Licia Carlson and others. Happy I am not. All day yesterday I thought of the slogan “nothing about us without us”. None of the presenters are advocates. Most are philosophers by training. I thought I lived in a world ideas until I sat through yesterday’s presentations. Simon Hayhoe spoke as did Simo Vehmas and Ben Curtis. In the afternoon Teresa Blankmeyer Burke and Anita Silvers spoke and tried to generate a group discussion. A number of things struck me. After Hayhoe spoke there was much discussion of John Locke theory of mind, identity and blindness. No blind scholar was present. Vehmas and Curtis spoke about the moral status of those that live with a profound cognitive and physical disability. They created an acronym, PIMD (profound intellectual and multiple disabilities). I read their paper and was turned off by the tone. They assumed an expertise I doubted they possessed. I do not question the intellectual rigor but rather I sincerely doubted they spent any time with people with severe disabilities. At lunch, I confirmed this to be correct. They produced a paper about people with severe disabilities yet have spent no time, as in none, with such individuals. 

This afternoon I get to introduce Eva Kittay who will give the key note address. I am looking forward to this as I respect Kittay’s scholarship. Her book Love’s Labor was among the first books I read that touched upon ethics and the philosophy of disability that struck a chord with me.  I also think her work on the Ashley X case is spot on. The so called Ashely Treatment targets a classically and historically disenfranchised population and violates their right to bodily integrity. This is a gross human rights violation Kittay not an inventive solution to an old dilemma. Indeed, the Ashely Treatment or what is now referred to as growth attenuation is morally objectionable. Kittay does not mince words here. She is blunt—appropriately so. 

If it were not for my commitment to introduce Kittay and the fact Dominic Wilkinson will present a paper tomorrow I would leave for home. I am an intellectual. I work in academia. I love to write theory. I can hold my own and make a contribution at pretty much any academic conference. But this conference is not for me. There is no grounding in reality. I simply do not get how one can write a paper about severe disability having never met or interacted with any people with disabilities. I am equally uncomfortable with the lack of access and the fact no one seems to care. Aside from Lenny Davis and myself, no one seems perturbed a conference focused on philosophy and disability is not accessible. Sure I can get in the door. Yes, I can navigate my way around with difficulty. But I have spent the last 30+ years advocating for myself and others with a disability. I know how to get my foot in the door. I know how to manipulate people. I do this daily and at most conferences I attend. But to be forced to do this reinforces a criticism I receive from others with a disability—I have a privileged body. Physically the barriers I have encountered are minimal. This does not mean such barriers are acceptable. In fact I object to much of what has taken place.  

I spent most of yesterday biting my tongue. I understand this is a conference on the philosophy of disability. But does not all philosophy of disability need to be tied to reality at some point? Apparently not. This is a sort of philosophy of philosophy. Disability is not central or even important but rather an analytical tool to abstraction and academic discourse. Toward the end of the day I lost it. I promised myself to remain silent but failed. What I wanted to see addressed, or merely acknowledged, is the paucity of scholars with a disability. The barriers disabled people encounter in higher education are staggering. When 2/3 of all people with a disability live at or below the poverty line education is a pipe dream. Add in the fact academia in general is hostile to the inclusion of disabled scholars and the field of disability studies itself is not respected in the academy is there any wonder scholars with a disability are a rarity? To me, we need to expose this anti disability bias. But no. That is not the sort of gritty discussion people want to engage in. After two or three comments I was essentially reduced to being “Debbie Downer” in the back of the room. I was and will remain the cranky guy. I suppose the moniker Bad Cripple fits me. 


Amy said...

I am dismayed, but not surprised. Throughout my Master's degree program (in Cultural Studies), I spoke out about the program's claim that it focused on marginalized populations, but failed to include disability in almost every instance. I was most definitely considered a downer, and accused of being a "one trick pony." As the parent of a child with Down syndrome, it was a harsh lesson in reality. How the hell am I supposed to create a better future for my kid when even the people who call themselves champions of equality don't give a shit about people with disabilities?

william Peace said...

You hit mail on the head. No one gives a shit. This is not an academic game and playing with metaphors. We are talking about real people who are at risk at multiple levels.

tigrlily said...

I would say "truth teller" fits you just as well. It's only because you tell truths that are unpopular with the powers that be. I believe a bitter truth is better than a comfortable lie, but that's just me.

Sara Buscher said...

I learned a long, long time ago that if you want to connect with a minority group, you need the people who are in that minority and have lived it to do the connecting. I do not live with a disability but I also know that I do not have that first-hand experience. I don't quite get it and I never will. Shame on those who think they know more.

Eva said...

Bill, your presence at the conference was invaluable. When you told Dominque that when you read his work you feel like he doesn't want people like you in the world, he really had to take that in. It might not change him around in one go, but it does help and I think it does have an effect. As depressing as it might be for you, and I apologize on behalf of my benighted profession, I do hope you will come to these events more often.
Eva Kittay

B Burton said...

Wow, sounds like being cranky is terribly appropriate here. Why is any university sponsored conference, let alone one focusing on disability issues, inaccessible and not inclusive? Yeah, I'd be pissed, too. Sounds like it was the SPAWN of Satan conference.

Simon Hayhoe said...

Dear Bill, you make a great many valuable comments and I read these all with great interest. Certainly the conference was not physically accessible, and there were many mistakes made in the lack of planning by the university. This was spot on. You are also massively correct that the main issue here was the lack of an APA officer.

However, I think there needs to be some redress made in terms of a couple of facts you were inaccurate about - apologies, I realise this piece was written from gut instinct on the first night, and I appreciate that, but you seem to have taken a scatter gun approach here. Firstly, we were asked to make our PDF papers accessible, and were, in good faith, told how to do so. I followed these instructions, and I am aware that a number of others did too. Perhaps these instructions were incorrect, but we were given this information. Secondly, you said that my paper discussed blindness (particularly Locke, et. al.) without a blind person being in the audience. Actually, my paper was focused on blindness, deafness and learning impairments. I have a hearing impairment, something I inherited from my family, the older members of whom are extremely deaf and would certainly be considered disabled. My father, when I was a teenager and he was still alive, was blind and in a wheelchair. I still have vivid memories of pushing him up hill and over grass at inaccessible college open days in the 1980s, and of having to live in a darkened house because he was photophobic. In the 20 years I have been writing about visual impairment, I have also deliberately worked with and taught students with visual impairment first hand. My PhD supervisor, still a friend and mentor of mine, is completely blind. Everything I have done - and I have DONE - and written about has been to further the education of students with impairments. There was also someone with a strong visual impairment in the audience. Perhaps this comment was based on visible impairments, and sometimes advocates can stereotype too in their anger and haste.

I really do appreciate that you were super-pissed after the first night of the conference when you wrote this, and with bloody good reason, but in this blog article you seem to tar everyone with the same brush. Just because we don't look like advocates or look impaired - and I don't consider myself disabled, just impaired, which is a point I made in the debate - doesn't mean I don't understand these lived realities.

This is a minor point, though, Bill, and I still really admire you, what you said, and defend your right to say what you said about philosophy (as a subject, not philosophers as individuals) in general. Perhaps disability advocation needs to be more refined, though, and aim before it shoots at everyone from the hip.

william Peace said...

Simon, I truly appreciate your long comment. I also want to emphasize I enjoyed the conversations we had. Despite the lack of access I enjoyed myself and learned much.
To address your points. There is no question the organizers and presenters did their level best to insure the pdf of papers were accessible to the blind. The same can be said about physical access for me. The organizers were assured physical barriers would not be present. Naively, they assumed this was true. But this was not the case as is the norm. What is said about access and reality are very different. They learned this the hard way. The end result in terms of access was not good. I appreciate the effort, and Syracuse is culturally welcoming, the fact remains the pdfs could not be read. Interpreter issues were addressed took late. Scholars with a disability who wanted to attend did not.
I do not question your expertise but surely a conversation about disability requires the presence of people with a disability. Hence the old slogan nothing about us without us.
Last point, I shoot from the hip here at Bad Cripple. The Chronicle of Higher Ed. published a story yesterday I suggest you read.

Simon Hayhoe said...

Thanks, Bill! I understand your points about the difference between your blog and the Chronicle. I'll certainly get access somehow. I also really appreciated your point about lack of disabled discussants. So, so true. This is a systematic problem that really needs addressing, and I note you made the point in your latest blog on the Chronicle article. The other thing I noticed in the conference was the lack of diverse ethnicity - yet another issue :) You have my support in this, Bill, especially as the title of my paper was Does Philosophy Disable. I guess it does! Best wishes from a sunny London.

william Peace said...

Ben. Thank you for the clarification. You are correct and I thank you for your comment. Simo and I correspond via email after the conference. He also wrote a critical reply. I enjoyed our conversations and am sorry for my error.