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Wednesday, February 19, 2014

Stand Ins: Jennifer Johannesen and Others Without a Disability

I am routinely the only wheelchair user when I socialize with friends or meet with professional colleagues. I cannot help but be aware I am different--atypical. My experience as the sole cripple is a constant and takes a mental toll.  As Kermit the Frog would say "it's not east being green".  Green I am. Different I am. Apart I am. Excluded. Belittled. Demeaned. Welcome to my life. Does the fact my life is often perceived by others to be less valuable bother me? Absolutely. When I feel overwhelmed and socially isolated I stop and think. I force myself to acknowledge that I am very lucky. The vast majority of people with a disability encounter far more prejudice than I do--especially those with profound cognitive and physical disabilities. This approach helps but does not change the fact I am far too often alone. My difference is impossible to ignore.

I can only conclude that the vast majority of people without a disability are quite content to avoid me. I also know disability is feared. Well are the one minority group that can be joined instantly. An unsettling thought for sure and the source of much gallows humor among physicians in training. When it comes to disability separate is apparently equal in the estimation of people with no knowledge of disability.  Disability history is rife with exclusion in a myriad of forms. Atrocities in the form of death, unimaginable brutality, and horrific physical abuse are constant as well. This history, the dirty side of disability is not taught and largely unknown outside of disability studies. Few people not directly touched by disability want to talk about disability Jennifer Johannesen is an exception. Link: In "I thought I Knew Everything Already (part 2)" she wrote:

 no one wants to deal with people with disabilities. In [Peace's] words, no one gives a shit. For many of us, it’s an uncomfortable experience to be in the presence of obvious difference, perceived vulnerability, awareness of societal failure. And more importantly, we don’t have the time or patience or interest to understand how they are impacted by our discomfort. We don’t want to know how society has failed them. Those who are angry or frustrated are especially easy to ignore.  

I am often placed in the "angry" category and am accordingly easily silences. Johannesen is correct in stating it easy to ignore angry people. No person without a disability wants to acknowledge they are part of a socio-cultural system that purposely excludes people with a disability and utterly fails to provide adequate social supports. But this is the world we live in.  The so called social safety net is in tatters, stripped to the bone. Worse yet people with a disability are hopelessly splintered. Deaf people advocate for qualified interpreters. I advocate for ramps and elevators. People who care for loved ones with profound disabilities advocate for social supports in the form of well trained and paid personal care workers. What is totally absent is a unified front. I cannot help but note the irony here--the medical model of disability is inadvertently used to splinter disability rights and advocacy.

Not all people that support disability rights have a disability.  People such as Jennifer support disability rights as do many others in and outside of academia. I find this support gratifying. Frankly, I will take support from one and all. I find Johannnesn's words fascinating as it highlights the individual toll and ethical conundrums that arise for a person without a disability that supports disability rights. Thus I found the following striking:

I think I am often invited to speak as a convenient stand-in – or I should say, I offer myself as a convenient stand-in – an articulate, dispassionate speaker without an axe to grind and who doesn’t make anyone uncomfortable...
I, on the other hand, am a quintessential good Canadian. My ease with speaking, the ‘tie it all up in a bow’ sort of way I summarize massively complex and nuanced ideas, the lightheartedness with which I can share adorable photos of Owen now that it’s all over – all of these things help make disability consumable and palatable. I now see my complicity in crafting an easy persona to suit public sensibilities. The audience and I can pat ourselves on the back for doing good work, and in the meantime Bill still can’t get in through the front door.
Consumable and palatable I am not. When I read those words I was stunned; enlightened but stunned. Johannesen is particularly insightful. I know there is a profound difference between use. My presence require work and thought because the world is not designed for people like me. I get that symbolically my presence alone carries weight. But the idea in an academic setting my presence makes others uncomfortable enabled the veritable light bulb to go off in my head. I suppose I just refuse to believe more than two decades after the ADA was passed into law I would have such an unsettling influence on others. This in part explains what took place at William and Hobart Smith last Fall when a conference ostensible about disability was no accessible. Link:  Among the apologies I received from the organizers the most common word utilized  was mistake.  Did a "mistake" happen. No. No mere mistakes were made. To deem the lack of access and obvious lack of thought was no no mistake. To deem it a mere mistake negates the fact my civil rights violated. The college broke the law--federal law. If black participants were asked to enter through the "white only" door would this be deemed a mistake? Not a chance. It would cause outrage and be considered a gross violation of civil tights legislation. This connection was never made by the organizers--people supposedly concerned with disability rights issues.

Johannesson really hit the nail on the head. A person without a disability speaking about their experience caring for a child or adult with a disability is far more palatable. And what can Johannesen and others without a disability do? I do not know. This is an ethical dilemma I have never confronted. This dilemma has increased my already considerable respect for those without a disability who advocate for disability rights.  Thanks to Johannesen I better understand why many people without a disability identify themselves as such before they talk about disability. A comment in the past I felt was not necessary.


Unknown said...

I enjoyed your piece especially because I have a few non-disabled friends who are especially sensitive to how isolated they are sometimes in the in-betweeness of being stand ins.

apulrang said...

Well, one thing these "stand-ins" can do is conclude their presentations by saying, in effect, "Thanks for asking me to speak on this subject. I hope I did a good job of presenting these issues. But if you really want to understand, you'll have to ask speakers with disabilities to talk to you. I'm a poor substitute."

apulrang said...

Well, one thing these "stand-ins" can do is conclude their presentations by saying, in effect, "Thanks for asking me to speak on this subject. I hope I did a good job of presenting these issues. But if you really want to understand, you'll have to ask speakers with disabilities to talk to you. I'm a poor substitute."

william Peace said...

Scott, Stand ins are in an unenviable position. I am reminded of Victor Turner and Bob Murphy's use of liminality. Stand ins are are straddling two different and divided groups--those with an without a disability.
Apulrang, I do not think such a statement would resonate. In fact it could be counter productive. This is a great question to ask Jennifer.

Unknown said...

Thank you for this! My friends and colleagues with disabilities and I have often railed at the divisions within the "community" of people who have disabilities. Every person seems to work to make his or her own world, based on his or her own disability(s), better. If we all could work together so much could be accomplished. In the meantime I, perhaps as a palatable person with a disability, that is not "too disabled looking" have worked to do presentations that do educate. I am also proud that some non-disabled friends and family members, having seen my experiences, finally get it and have become advocates for disability accessibility, too.

Jennifer said...

Jennifer here - happy to chime in.

I never speak about disability issues - I speak only about my own story, my personal perspectives, things I've learned and wished I'd done differently.

However, I think sometimes the audience THINKS they are getting a lesson in disability issues. As I mention in my own post, my talks are highly consumable and easy to swallow. Lots of cute pictures, a loving family, food for thought.

Truth is, we never experienced a single 'classic' disability rights related problem. But people come away from my talk thinking they learned something about disability...

I'm a poor substitute indeed, but honestly I don't think the audience really wanted to know about disability anyway. So I provide an easy out. Or, is it an easy 'in'?

william Peace said...

Burton, I too bemoan the divisions within the disability community. All the bias and prejudice we face shares the same roots. I wish others saw this as inherently divisive as you and I do.
Jennifer, Your words have resonated with me and many others. Do not demean your efforts. You are not a "poor substitute" in any way. Your passion is palatable and that by itself can make an impact. I can readily imagine an audience wondering why does she care so much. This is critically important because you are correct most people do not care about disability or disability rights. What you do cannot be easily dismissed as the ramblings of a narcissist cripple. Thrilled by the discussion you have prompted.