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Tuesday, November 26, 2013

The SDS Has a Problem: Will they Respond?

I am not a fan of the SDS (Society for Disability Studies). I should enjoy going to SDS meetings but I do not. I have been to two SDS meetings and did not enjoy either meeting. The meetings completely and utterly fielded to resonate with me. I know people who are actively involved in the SDS and I respect the fact they get much out of their involvement. I am not one of these people. In fat I am very critical of the SDS and two years ago I took the SDS to task on this blog. See:

Two critical essays about the SDS have been published in the Feminist Wire in the last few days. The most recent article by Corbett Joan O'Toole is devastating.  See: O'Toole's essay is devastating because it is so basic. All you need to know is the basic math:

Conference registration: $230
Hotel room (3 nights at $159 * 17% for tax and lodging fees): $558
Airfare (roundtrip): $325
Transportation from airport to hotel (round trip): $54
Food (hotel restaurant per day * 3 days minus conference meals): $90
Required costs for this conference: $ 1,257
These are conservative numbers, particularly the food costs.  But often that is the only place where I can cut costs. So when I attend a conference, I eat as little as possible outside of meals covered by registration, and I bring food containers from home to save part of each meal to eat later. On the first day I find a local store and purchase drinks and nonperishable food to stretch my money.  Hotels are rarely near grocery stores so I am usually paying for overpriced, highly processed foods.
I do this not because I want to. I do this because I am poor. I am a Disability Studies scholar. And like many other disabled scholars, I am poor. I receive $1,100 a month in government benefits and a pension from when I worked.  Soon my pension ends and I will live on $810 per month.

There is no need to read the rest of O'Toole's essay. The economic reality cannot be ignored. Adaptive sport programs encounter the same problem as the SDS: it is extremely expensive to participate. I would speculate the SDS and a typical adaptive sort center is beyond the budget of 90% of all people with a disability. Both the SDS and adaptive sport programs have the same response to economic reality: scholarships are available. Sorry but no. A scholarship is of no help to most people with a disability whose primary concern is putting food on the table and paying rent. To participate costs money. To participate involves transportation.  When one lives on $810 a month as O'Toole does the SDS or a adaptive sport program is a pipe dream. O'Toole calls this a "dirty little secret". I call it exploitation. The SDS exploits the very people it studies and supposedly advocates for. But there is very little advocating going on at the SDS. Indeed, the only advocating I have seen in my limited exposure is individual career advocacy. This is a nasty mean spirited comment. It is also true.  We are talking about the tacit acceptance of economic gate keeping. O'Toole calls this economic ableism. Ouch! We are talking about class. Only the privileged and elite can afford to attend the SDS. Those with tenure, those who hope to get tenure, and those that want to enter the field participate. The people who do not attend accurately represent the disability norm. Poor, unemployed, socially isolated, economically deprived. In a word, disenfranchised. O'Toole who really nails it when she concluded: 

When economic barriers create a Disability Studies without a majority of publicly identified disabled people, it is an oppressive enigma wrapped in a conundrum hidden beneath a patina of deceit.

It is not often I can say this: I wish I wrote those words. I am sure the SDS leadership is not happy. I am sure they will correctly state we are a professional organization, all such organizations must charge fees and we do more than most to provide scholarships and be inclusive. Hell, I bet an SDS committee is being formed. Meetings will be held. A response will be drafted. Blah, blah, blah, blah... The real problem with the SDS is it has no soul. Forget the famed SDS dance. Forget activism. The SDS is an intellectually isolated silo. The SDS is a social and academic network that is devoid of interest or relevance to the vast majority of people with disability. This is a disgrace. Paul Longmore would be horrified. Ed Roberts would be appalled. Longmore's work went well beyond disabilities studies scholarship. His work was rooted in activism and he railed against the social and economic forces that oppress people with a disability. He was the soul of the disability rights movement. Hey, this is not an original observation. Look at the cover of Longmore's classic Why I Burned My Book. This is John Hockeberry's line. 

John Kelly, a real activist and scholar who I deeply respect, asked me today what can be done. I pessimistically replied nothing. I observed online formats will not work because people are inherently social. We need to see and meet each other--break bread and share a meal.  There must be a solution. Here is what I propose. I suggest we create a nation disability rights day. We can call on each and every independent living center, disabilities studies program, national organizations such as ADAPT, NDY, DREDF, and many more. All people with a disability meet and advocate. Practice various forms of civil disobedience. Be confrontational. Be direct. Support those with no support. Go to a nursing home. Go to a group home. Support those with no support. Do not do this for your career. Do this because it is is the right thing to do. Do this because your life depends upon it.  Even a grim man can dream. 


Rachel Cohen-Rottenberg said...

Bill, I am troubled by your dismissal of online formats and by your suggestion that socializing can only be done face to face. Until the disability world starts figuring out how to make meetings, conferences, and cultural events accessible to people with sensory and social differences, with chronic pain and fatigue, with cognitive disabilities, and with a host of other conditions, online formats will allow a great many more of us to participate. Not everyone can travel to the sorts of meetings you're imagining. Not everyone can tolerate an environment in which people are breaking bread and networking with one another face-to-face, because that environment is not created with their access needs in mind. Until we start dealing with accessibility that goes beyond mobility, CART, and ASL, huge numbers of people are going to be left out.

As I read your blog, I am wondering on which side of the line I'm expected to be. Am I supposed to be one of those people who goes to an ADAPT meeting or visits a nursing home? Or am I one of those people whose access is so limited that others will come to me? The former is not possible given the state of access. The latter would not be necessary if access actually existed.

This is an example of what I was talking about when I wrote about my sense of apartness in the disability community a few days ago. Somehow, the lack of access for people like me gets glossed over.

william Peace said...

Rachel, Wow, you are interpreting my words in a very different manner than they were intended. I suggested we have a disability rights days nationwide that would involve local and minimal travel for all. Surely accommodations of every sort could easily be arranged. The point here was to as inclusive as humanly possible. I know meetings are hard and while I value face to face human interaction I know others struggle. I also know economics play a huge role. Hence my criticism of the SDS. I do not expect you to take any side. I see no sides in fact. I just envisions a universal desire for the inclusion of all people with a disability. We can only build off our individual strengths.

Kara said...

I really appreciate Rachel speaking up in this way. I felt very similarly. My own advocacy work has been influenced (positively) by just a few words from interestingly enough-Bob Kafka...I remember being a young advocate and growing concerned that my feelings, voice, and approach didn't quite "fit" with the ADAPT approach. While I respected (and appreciated) some of their hard line tactics, it wasn't me. Bob could see this in me apparently and shared, "It takes all kinds. We need people in the boardroom after we finally get that meeting arranged too!" YES-we need to embrace diversity within our culture and be aware of financial difficulties but can't we do so collaboratively instead of making vast assumptions while also disclosing that you don't have much positive to say about this group in the first place.

Catherine said...

It's not just disability conferences. With out corporate or institutional sponsorship or having personal wealth, many of these conferences for any group has this gate keeping tactic. Those who can't afford to pay stay out. It's pathetic enough that those conferences with options for parents/people with life threatening, few option conditions require a huge investment in cost to go. Parent groups often pool some money, do some fund raisers and send a few reps to report back since all who want to go cannot afford it and some cannot leave the area if physical condition of self or child/cared for individual does not allow it. It's a luxury to participate in these things.

william Peace said...

Catherine, The SDS is like every other academic association I have been involved. I could level the same critique to dozens of organizations in the social sciences. The SDS has a role, an important one in fact. I would argue they should be held to a higher standard given disability based bis remains rampant. People with a disability need all the support they can get and that should include the SDS.