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Tuesday, November 19, 2013

Inside Higher Education Picks Up on My Story

Today, Inside Higher Education published an article by Megan Rogers that expanded on the significance of my most recent post about being excluded from a disability related conference held at Hobart and William Smith College. Here is the link:
I also want to link to Stephen Kuusisto's post at Planet of the Blind. Link: Kuusisto was equally involved and I want to acknowledge my deep gratitude for the solidarity he and Rebecca Garden displayed. Kuusisto and Garden could have easily decided to participated at the conference. Steps are not an architectural barrier for them. In a rare display of academic and personal integrity, they refused to participate. Kuusisto and I left Hobart and William Smith with deeply mixed emotions.  I had looked forward to this event.  This was an opportunity for me to see a small elite liberal arts college that I was told was gorgeous. It was indeed a gorgeous campus. It also presented multiple challenges for a person that uses a wheelchair. I was shocked, dismayed, and humiliated. For Kuusisto the visit was a trip down memory lane. His father was for many years president of Hobart and William Smith College. I got to see the house Kuusisto spent many years living in as a youth. I cannot say we enjoyed our trip to Geneva, NY but it was eventful that's for sure.

I would like to echo one point raised by Kuusisto in his post. Hobart and William Smith has reacted immediately and appropriately to the civil rights violation I experienced. Unlike many institutions that would form a committee and attempt to sweep what took place under the rug Hobart and William Smith has reacted proactively. President Mark Gearan swiftly apologized and organized meetings that were held yesterday. He has vowed to keep me and Kuusisto informs as to what changes will be made. After an initially awkward exchange with me,  the organizers apologized and they too vowed to incorporate significant changes. I emphasized to Megan Rogers the real significance of the story will be revealed in the spring when the working group meets again. Today, I made multiple and detailed recommendation to the organizers of the event. It is my hope many of the changes I suggested will be acted upon. If this is the case Hobart and William Smith will establish a precedent for how to react to egregious ADA violations other institutions and academic organizations can follow. Sadly this implies more such violations will take place. And I know they will. Indeed, "problems" are what I encounter virtually every time I attend an academic conference. The disconnect here is obvious to me. Access and inclusion is not a problem but rather a matter of civil rights. I, as a person with a disability, have the right to participate and expect no physical or social barriers will be encountered. This is not how my inclusion or participation is perceived by my academic peers. I have continuously asserted I am not problem but rather a human being that shares the same civil rights as others--typical others.

One last point: In the last six months I have made a concerted effort to interact with scholars in the health sciences. My experience in 2010 healing a significant wound shook me to the core. It was painfully clear my existence was not valued by medical professionals charged with my care. I could not help but conclude medical care now worships at the alter of high tech care but in my estimation has lost its soul in the process. Humanism is all too often absent. I want to change how people with a disability are or are not treated in our health care system. Lives are at stake, of this I have no doubt.  Surely the recent case of Tim Bowers death within 24 hours of a severe spinal cord injury is a perfect example of a deeply ingrained bias against life with a disability held by many physicians. Bowers needlessly died because his life was thought to have no value. Worse yet, he was given the illusion of choice. And what was the response of bioethicists? They hailed this man's supposed autonomy. I find this assessment perverse. Hence my effort to interact with clinicians and those currently in medical school or doing their residency. These people represent hope to me. If I can reach physicians in training who are open minded, eager to learn, it will be to the benefit of all. I have no idea if I will be successful but I am feel compelled to try.


Anonymous said...

Hi Bill,

I am very happy to hear that your story has gotten wider coverage and that the people at HWS have been open to a conversation. Time will tell as to whether that conversation bears fruit.

One of the things that bothers me about this whole issue is that there seems to be a significant emphasis on access for people with mobility issues, when that is not the only access problem. I was especially disturbed to read the following in the article you linked to:

"The ADA was passed almost 25 years ago, but those with disabilities must continue to call ahead to make sure public and shared spaces will be accommodating, said Tammy Berberi, president of the Society for Disability Studies. She’s frustrated by colleges and universities that pay lip service to equal access by insisting they’d like to offer equal access, but say they do not have the resources to do so."

This is the same Society for Disability Studies that held its last conference across the street from the entrance to Universal Studios, making their conference almost entirely inaccessible to people with autism and other conditions that involve sensory disabilities. For a person like me, that translates to "We're having our conference across the street from the gates of hell. Please join us!" And then there is the sensory overload of a conference altogether, with very little energy spent thinking about the fact that many of us end up in physical pain from environments with too much sensory stimuli. And don't get me started on how inaccessible academia is in general to people with social and perceptual differences; I dropped out of a PhD program many years ago because it was clear to me that academia was a hugely able-bodied culture with social, verbal, and energy demands that my body simply could not meet. There are a lot of very smart and committed people out here who wouldn't be able to attend such conferences even with the best wheelchair accommodations in the world.

william Peace said...

I have no respect for the SDS. None. Let's leave it at that.

Dr. Dan's Daffy Deliberations said...

That's great that Inside Higher Education picked up on your story of your experiences at HWS! I just finished reading in ebook format the Tom Koch work critiquing biomedical ethics, "Thieves of Virtus" which you reviewed & it certainly raised many valid points on how the biomedical e establishment tends o devalue I patients with disabilities at end of life situations as reflected in the Tim Bowers case. I'd love to join you as a disability scholar to enlighten rhos who watch our care.

Carwile said...

aren't ADA violations occurring now that no one complains about - that we don't know about??

william Peace said...

Carwile. Regardless of ADA complaints my sense is no one gives a damn about inclusion of people with a disability. Until this changes the law will be routinely broken.