I read many disability related blogs. I am particularly drawn to blogs from different countries. One blog I read on a regular basis is Girl with the Cane written by Canadian Sarah Levis, a freelance writer, who has a vascular condition in her brain called an arteriovenous malformation. Levis often writes about disability issues in Canada and the United States. Today I read her latest post "Why Do Mike Rice and his Basketball Team Matter More than Disabled People". See: http://www.girlwiththecane.com/mike-rice/
For those not interested in college basketball, Mike Rice was fired as head coach of the Rutgers University basketball team. Video of Rice berating his players verbally and physically went viral. In the last 48 hours it has been hard to avoid this story--think total media saturation. Levis asks a very interesting question: "why do these stories get so much coverage and generate so much outrage"? Levis contrasts the media saturation about Rice with disability related stories that garner scant attention. She mentions the Judge Rotenberg Center where electric shock was used to discipline children which was declared torture by the UN; restraint and seclusion in secondary schools; the wide spread abuse found in NY State group homes. Levis pointedly asks NJ Governor Chris Christie why he has issued a statement about Rice but failed to attend the Joint Legislative Hearing on the closing of two institutions in NJ.
I share Levis frustration. I too wonder why stories about disability are rarely deemed news worthy. I also wonder why the few stories that do hit the news are framed in a way that reduces disability to antiquated stereotypes. The mainstream media excels at what many people with a disability identify as inspiration porn. Think Oscar Pistorius, the fastest man with no legs or Christopher Reeve whose life concerned one thing--cure for spinal cord injury. These men produced awesome visuals the media sucks up like nectar of the gods. People who know nothing about disability are inspired and brought to tears. Misleading leaps to the forefront of my mind. Disability is not well represented by men like Pistorius and Reeve.
Levis post reminded of a book I loved--The Short Bus by Jonathan Mooney. If you ever want to prompt a strong reaction among a group of people with a disability just bring up the topic of the short bus. Loud groans will be heard and bitter complaints. The short bus came into being in 1975 via the Individual with Disabilities Education Act (IDEA). The intent was good--children with disabilities had the right to an education, a first in American history. However, IDEA made no mention of how to get students with disabilities to and from school. Enter the short bus or as I prefer to call it segregated transportation. The short bus quickly became the symbol of special education and served a specific social function. Mooney wrote:
Our myth of who we are, who we should be, is actually created by categorizing people with disabilities. Disability is inherently a negation. In our culture, people with disabilities stand more for what they are not than what they are--not normal, not whole--a negation that calls into being its opposite: the normal. The normal looms over all our lives, an impossible goal that we are told is possible if: if we sit still, if we buy certain consumer goods, if we exercise, if we fix our teeth, if we... The short bus police that terrain; it patrols a fabricated social boundary demarcating what is healthy and sick, acceptable and broken, enforcing normalcy in all of us.
The short bus is still widely utilized. Thus it is no wonder disability is badly misunderstood among members of the media. We teach children from their initial entry into the educational system that the segregation of people with a disability is the norm. We have special buses and special education. We have special resource rooms. The message is clear: we are different, inferior. We are not worthy as Levis stated. We are not important, our civil rights are different. Given this important issues related to disability will continue to be ignored by the mainstream media. While this is undoubtedly a gloomy assessment I am hopeful social media has the power to change the social situation of people with a disability. There is a vibrant online community of disability related bloggers. There are Facebook pages dedicated to disability rights. Disability studies programs exist on university campuses. The wall of exclusion is being undermined and I hope to see it reduced to rubble in my life time. A guy has gotta hope, eh.
Paralyzed since I was 18 years old, I have spent much of the last 30 years thinking about the reasons why the social life of crippled people is so different from those who ambulate on two feet. After reading about the so called Ashley Treatment I decided it was time to write a book about my life as a crippled man. My book, Bad Cripple: A Protest from an Invisible Man, will be published by Counter Punch. I hope my book will completed soon.
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Thursday, April 4, 2013
Girl with a Cane Asks Important Questions
Posted by william Peace at 7:09 AM
PhD 1992 in anthropology Columbia University, I am interested in disability rights and bioethics.
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Those we can marginalize, we will. We only look up to people 'better' than ourselves, the exceptional athletes, actors. They become popular and thus, secluded, inaccessible, which makes it easier to keep them on a pedestal. Everything else is pedestrian and those who cannot even survive without constant care, at best only worthy of our pity, at worst, they need to be encouraged to die.
From my observation many of the disability stories in magazines etc are of the person blind or wheelchair and the family and the emphasis seems to be on those living with that person unless that person is a Reeves type person...Its more about how the relatives cope...Not having any disability (yet) but having spent most of my adult life with my husband who broke his neck in our young lives - I feel privileged. Life was an amazing roller coaster of surprises. I hated it when people would say to me "How do you cope?" I didn't consider my life coping - we were a couple. I would say what do you mean cope... There were times when Don spent months in bed in the home due to some bone issues - we just rode it through - If he was okay I was okay. If I was okay so was he. Just as with most couples. Re education in Australia, most kids with severe disability are either taken to school by their parents or they have a fleet of taxis which drop off and pick up - but this was in a large rural town . I am unsure what happens in the city. I would hate to be disabled in the major cities as we always found them less accessible and less kind -
Thank you for the shout-out, Bill. I'm glad that the piece resonated with you. I'm tired of seeing what can only be described as horrific abuse, like what's going on at the Rotenberg Center, getting minimal media coverage and being allowed to continue while abuse of non-disabled people gets never-ending coverage and immediate action. I do feel like there's more awareness of the viewpoint that disabled people don't necessarily want a cure (it was not taught to me in my training, within the last decade, and I read and hear about it a great deal now), so I think that things are improving...but it's slow work, as you well know...keep on writing, because we need your voice...
Eric, Yes we humans do have a penchant for marginalizing populations that are not wanted.
MiddleChild, Reeve and Pistorius are the archetype for "overcoming" a disability. Mass transportation in the form of planes, trains and buses is problematic in the extreme.
Girlwiththecane, I agree horrible stories of abuse and isolation are not reported or at best under reported. I find the focus on cure puzzling. This is in part the legacy left by Reeve in the USA. I am not opposed to cure and in fact think such research is an appropriate endeavor. My focus however is on civil rights now.
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