Op-Ed: Economic Barriers in Disability Studies

November 24, 2013
By

By Corbett Joan OToole

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.

If the Disability Studies conference chose to meet in less expensive places, organized for regional rather than national gatherings, and included all meals in registration fees, poor disabled people who are also professional scholars, could attend.

It’s a dirty little secret in Disability Studies that only people with a lot of disposable income can participate. If you have no money, you have little or no participation in Disability StudiesEconomic Barriers in Disability Studies

It’s not that people don’t know that disabled people are poor. The statistics are quoted often. People who are “severely” disabled (meaning disabled more than one continuous year according to the U.S. Department of Labor) have a permanent unemployment rate over 70%. According to the Committee on Improving the Disability Decision Process, “About 77 percent of those ages 25-64 with severe disability had an annual income under $20,000.”

How does Disability Studies address these economic facts? By ignoring them.

Disability Studies is a self-feeding system of public speaking and publishing. People develop their ideas through engagement with other thinkers. Having new ideas makes one desirable for speaking engagements and publishing opportunities. These interactions mostly happen at conferences that are economically inaccessible to nearly all disabled people and many nondisabled people.

A few examples of economic gatekeeping:

  • Having high conference registration fees and telling people to apply for a scholarship if they cannot afford the fee. The scholarship process only covers registration fees, not housing or accommodations. Scholarships usually aren’t awarded until close to the date of the conference, leaving recipients without time to plan affordable travel.
  • Asking poor disabled people to be on boards for Disability Studies organizations. However, board members pay their own way to meetings, pay for their own hotel and food. There is no financial support offered to board members. It would be a nice idea if being a board member came with the financial support to let a person fulfill their obligations as one; it would be a different story.
  • Disability Studies conferences expect people who need accommodations outside conference rooms to pay for and provide their own. This can include interpreters, orientation and mobility trainers, personal care attendants, and other professionals. This prices people with greater access needs out of attending conferences, excluding people with disabilities from the study of their own lives.
  • Panelists who cannot afford to attend the conference ask permission to Skype into their panel. Conference organizers inform the panelists that any participation, even by Skype for only one session, requires that the panelist pay the registration fee. This creates an economic barrier that prevents even remote participation.

The economic ableism is overwhelming and defeating. Disability Studies purports to encourage dialogue and inquiry among all people interested in the study of disabilities, yet the economic barriers are insurmountable for most disabled people. Additionally, language barriers often overlap with economic barriers. Even at multidisciplinary events, presenters often chose to use academic discipline-specific language instead of accessible language. Anyone not thoroughly trained in that precise vocabulary is excluded from the purported conversation.

This economic oversight is built into nearly every Disability Studies environment, from the cost of DS classes to the ability to participate in DS events. It is extremely rare to see these economics addressed and when they are, the event planners tout their provision of a few generally insufficient accommodations as if they were a precious gift and not a basic requirement for allowing disabled people to participate in conversations about ourselves.

Economic Barriers in Disability StudiesNo money means you cannot attend the events, buy the books, subscribe to the journals, take the classes, get the degrees, and be a part of the “club.”  This means the Disability Studies crowd is primarily employed, nondisabled, and/or able to function easily in nondisabled environments.

Class privilege drives Disability Studies, yet it is almost never discussed by those who benefit from it. The poor people, mostly disabled, try to find resources so that we can attend an occasional event. We address these exclusions by creating online environments where we notice and admire each other’s work. Some of us are tokenized in Disability Studies. Our work may be referenced, shown, and discussed, but we are not included because we cannot afford to be at the gatherings where we are referenced and discussed.

Why is Disability Studies so committed to mimicking the white, male business model so common in academia? Why do so many disciplines with activist roots commit to this replication as they move into the academy? Has it worked so well for oppressed groups that we need to imitate it? Do we really believe that having a hotel-based conference confers us with academic legitimacy? At what cost does it do so, if it even succeeds?

What would economic justice look like in Disability Studies?

  • Events would begin with the reality that disabled people are poor.
  • Poor people do not fly across country, stay in expensive hotels, eat at expensive restaurants, pay hundreds of dollars in registration fees, and provide their own accommodations.
  • Disabled people and allies in committed community with each other find ways to create mutual access. We share resources, support each other, and collaborate to find solutions that work for all of us.
  • Gatherings would take place in environments with access to fresh air; people could participate in places where they could sit or stand or lie down or walk; knowledge could be shared over meals, through dance, or through singing, as well as by reading and talking.

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.

Resources

Committee on Improving the Disability Decision Process. (2006). Improving the Social Security Disability Decision Process. Institute of Medicine of the National Academies.  http://www.nap.edu/catalog.php?record_id=11521

Elizabeth Grace, Cognitively Accessible Languate, Why We Should Care. The Feminist Wire, Nov. 2013. http://thefeministwire.com/2013/11/cognitively-accessible-language-why-we-should-care/

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Economic Barriers in Disability StudiesCorbett Joan OToole’s forty years of disability activism and scholarship creates ongoing networks and discussions among people concerned with intersections of disability, gender, queer, and community.

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15 Responses to Op-Ed: Economic Barriers in Disability Studies

  1. Ruth F on November 24, 2013 at 3:22 pm

    Yes. You’ve hit the nail on the head. This kind of pre-filtering is a huge problem in our entire health care system as well. Think about the doctors who treat our disabilities. They are much healthier than us. In order to become a doctor you have to endure near-hazing levels of physical and mental stress, not just in college but in the internships. People with disabilities are pre-filtered out so that we end up with a population of physicians who know nothing of suffering

  2. wjpeace on November 25, 2013 at 1:23 pm

    This is precisely why the SDS is utterly ineffective if not exploitative of those they study. The SDS is for those few academics that have full time positions and university support. Others who attend have the income that does not preclude them from spending $1,000 and up for a weekend conference. The SDS needs to get back to its roots in disability based activism.

  3. Eli Clare on November 25, 2013 at 2:10 pm

    YES! Thank you.

  4. John Kelly on November 25, 2013 at 9:55 pm

    Thank you Corbett! I like the idea of regional gatherings, which could be much cheaper. Do people remember the SDS conference where people stayed in the dorms at San Francisco State in 2004 or so? It seems a lot of people were upset, and unable to get their needs met. But that was an opportunity to dramatically reduce costs.

  5. Rachel Cohen-Rottenberg on November 25, 2013 at 10:29 pm

    Well said!

  6. Leroy Moore on November 26, 2013 at 2:40 am

    SDS has so many barriers its a joke but that is with most academics. Although I have really good friends in academia and I lectures at colleges and sit on a board that is working on Black Disability Studies, I find that academia’s conferences is elitist and (Unless they team up with a community scholar on a conference or event) what comes out of it like conferences speaks very little to me as a Black disabled activist and community scholar/journalist. Yes there is some good but most of it is not in my reach. SDS has so much to work on from race, class, accessibility, intersectional identities and the list goes on that it becomes a hurtful environment and once the wounds are open we need a long long break from it realizing that we don’t need to pay just to get hurt again. I miss the times when you had centers for community scholars to share their knowledge and really made changes with the community. As I write this, I am hoping that a university with a disability press will publish my book. God what a maze we live in!

  7. TRENA on November 26, 2013 at 10:08 am

    FOR OVER 20 YEARS SAN DIEGO PEOPLE FIRST HAS BEEN PARTNERING WITH “PROFESSIONALS” TO HOST A LOCAL CONFERENCE FOR OVER 20 YEARS. OVER THE YEARS WE HAVE SEEN PRICES RISE AND TRY TO KEEP COSTS AT A MINIMUM. YET EVEN OUR DAY RATES HAVE SHOT UP TO ALMOST A HUNDRED DOLLARS AND MANY PEOPLE SAY THEY WANT TO GO BUT SIMPLY CAN’T AFFORD TO ATTEND. SO WE HAVE ADDED LEADERSHIP SYMPOSIUMS THROUGH OUT THE YEAR. FOUND FREE MEETING SPACE FROM AREA BOARD XIII AND YOU BRING A SACK LUNCH.4 DAY LONG TRAININGS THAT FOCUS ON DIFFERENT TOPICS. THESE EVENTS ARE 100% FREE. GOOD IDEA RIGHT. HOW EVER WE HAVE HAD TO LIMIT THE CONFERENCE ATTENDANCE AT 400 PEOPLE, EVERY YEAR WE TURN PEOPLE AWAY TO PREVENT OVER CROWDING. YET THE LEADERSHIP TRAININGS AVERAGE ATTENDANCE IS 15-40 PEOPLE.

    I ALSO SET ON A STATEWIDE BOARD FOR PEOPLE WITH DEVELOPMENTAL DISABILITIES AND THE AGENCY COVERS THE COST OF FLYING/HOTEL FOR US TO ATTEND MEETINGS 4 TIMES A YEAR. THEY EVEN GIVE US A BUDGET FOR FOOD WHILE WE ARE THERE. BUT THEN THIS IS A GOVERNMENT BOARD FOR PEOPLE WITH DEVELOPMENTAL DISABILITIES. AND THE AGENCY IS CHARGED WITH SERVING THIS POPULATION SO THEY UNDERSTAND THE CHALLENGES.

  8. LEE on November 26, 2013 at 2:32 pm

    The worst ableism & descrimination:
    Church seminary….trying becoming a church minister and see the hell they put you through here on earth!

  9. LEE on November 26, 2013 at 3:04 pm

    PS–i had to pay for the hotel and transportation to attend a “how to make the church & academic seminary” more accessible….it was an academic conference.
    too often the thought is that access is about the wheelchair….quite the oversimplified…..

  10. Tobin Siebers on November 27, 2013 at 1:09 pm

    I first met Corbett at SDS Philadelphia. I am a great admirer of her work, and I was so happy to meet the person behind the name, even though our meeting was very short. I agree with what Corbett has to say, but I am not sure that the proposed solutions are actually solutions. We can meet regionally to cut back on long travel, but sometimes the most expensive flights are the short ones, and small planes are not the best for transporting disability technology. Driving is cheaper, of course. Hotels are expensive everywhere; dorms are not so cheap, only in comparison, but still not so cheap. The last time I stayed in one, at Philadelphia in fact, the bed was raised off the ground to allow a desk to be put underneath it, and it was very dangerous to get in and out. The shower’s floor was very slippery. I don’t have a solution to the problem Corbett raises. Even the richest scholarly organizations have no real money to supplement member attendance.

  11. Mark Romoser on November 27, 2013 at 10:23 pm

    Most folks would describe me as privileged: white, male, hetero, full-time job, Ivy League degree. Yet I was only able to discover the magic that is SDS through the happy coincidence that it happened to be in my city in 2011, and my employer hosted some peripheral events, so we got free registration. (No one else took advantage of that, but that’s another story.)

    Then the next year, that same employer had to write a grant to get me to Denver, where I was a discussant on an autism panel. Otherwise, the panel would have been short one discussant. And yes, I ended up mooching most of my meals off of my more affluent friends. :-)

    This year? No dice. And next year? We’ll see.

  12. Lydia Brown on November 27, 2013 at 10:42 pm

    I like the idea of having regional gatherings, but I do also like the idea of national gatherings as well. You make a lot of important points that I think (as Tobin observes) apply not only to large national gatherings but also to smaller regional ones as well.

  13. Ib Grace on November 28, 2013 at 5:51 am

    Fundraise, move money around, use political capital to get it together. We need to pull together and make it happen, and I think we can. Access barriers on all axes need to get gone. Thinkers let’s think how then do it!

  14. Jesse the K on November 28, 2013 at 5:38 pm

    Corbett, you name the tune here: Why is Disability Studies so committed to mimicking the white, male business model so common in academia? Why do so many disciplines with activist roots commit to this replication as they move into the academy? Has it worked so well for oppressed groups that we need to imitate it?

    The U.S. university system is realizing that distance education may fundamentally change the academy. People with disabilities have been the alpha testers for new technologies forever (see, for example: the first analog records served as talking books for blind people, deaf people pioneered modems for text telephony, people without use of their hands making voice-recognition tech usable).

    It seems DS is precisely placed to pioneer distance education with functional turn-taking; multi-modal instruction and discussion and easy links between recording videos, speech and text. Why not pilot these technologies at frequent virtual panels, discovering the limitations, developing workarounds, and increasing our skills to the point where we could meet online?

  15. Linda Kornasky on December 2, 2013 at 3:00 pm

    I agree, Corbett, with your economic analysis of DS conferences and scholarship. I’m in the middle of the academic pile (tenured at a regional Masters level university), and even from this relatively safe vantage point, I often feel excluded/priced out of research and conference participation in DS. Not long ago on the DS in the Humanities email list, an elite researcher/professor, who has lots more academic clout than I have, chided people on the list about our alleged lack of participation in the Society for Disability Studies as members and conference attendees. I just joined SDS a year ago even though I had wanted to do so for many years; I finally was able to afford the hefty membership fee. (And never mind affording the pricey conference!) For academics like me who work on both DS and another research area (U.S. women’s lit. in my case), the cost of conference attendance is prohibitive. Yet I’ve never felt comfortable making a complaint about these costs since the majority of others in the disability community are, of course, more economically constrained than I am.

    Moreover, you are absolutely correct about the theoretical jargon now used in DS. It excludes many people who might otherwise be interested in our field, especially undergraduate students.

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