I have struggled in recent months. My struggles are not personal or professional. My struggle has been blog related. Bad Cripple is a labor of love. It is my effort to reach as wide an audience as humanly possible in an effort to promote and advocate for the civil rights of all people with a disability. Until recently I eagerly looked forward to comments made by people who read my posts. I no longer feel this way and have reluctantly begun to moderate all comments.
I have been subjected to an increasing amount of hate email. I have always gotten hate email--one of my first posts that took the cure industry to task promoted some nasty comments. Initially harsh comments surprised me. Six hundred posts later I have developed a very thick skin. My skin is being severely tested these days. I am getting email and comments that goes well beyond nasty and can only be considered hateful. Some of the hate email I get hits too close to home. I have created an archive of this email because I am worried. I am sure my concern is misplaced but as a professional worrier I cannot stop worrying.
Two groups of people appear to hate me. First, people with a disability, mostly those with a spinal cord injury, that want to be cured. No procedure is too risky No operation could be classified as too dangerous. Money spent on ramps, elevators and wheelchair access is deemed a waste. A cure is around the corner. Cure and cure alone is the only worthy goal I am told. My advocacy for disability rights is perceived to be the product of bitterness. My critique of the cure industry enrages people whose sole focus is on a cure for spinal cord injury. These people do not want to hear about how inadequate modern day rehabilitation is. To them, rehabilitation is not needed because they will be cured. My words are despised as is my lack of interest in cure.
The second group of people that send hate email are the parents of children or adults with severe disabilities. I have been told repeatedly that I know nothing of their lives. Like those with a spinal cord injury, they want a cure above all else and at minimum appropriate social supports. They are emphatic on this point. There is no pride in disability. The very idea of disability pride is an affront. Disability these parents assert is terrible. Worse yet, the disability rights movement has left them behind. Disability rights scholars such as myself whose identity is positively linked to disability ignore their lives and suffering.
I will readily acknowledge I have a privileged body. I am independent. My autonomy in the traditional sense of the term has not been compromised by paralysis. Basically I can wipe my own ass and have control of my bladder and bowels. I perform all my ADLs without assistance. Pain and many other typical post spinal cord injury related complications do not affect my life or work. I am well aware many, most in fact, people with a disability encounter far greater social and physical obstacles. As a parent, I can only imagine what it is like to watch one's child with a disability suffer. I understand how hard it must be to see snow fall and know that for days if not weeks you will be stuck inside because snow removal is inadequate. I understand life in a nursing home is a terrible thing to endure. I understand poverty associated with disability can and does kill the human spirit. I understand chronic if not life long unemployment can lead one to believe their life has no value. I understand accessing the health care industry can be difficult and frightening. I understand respite care is grossly inadequate for those that provide total care for a disabled person. I understand the never ending fight for appropriate social support is draining in the extreme.
Believe me I get it. I have been thinking about disability for the last three decades. I advocate for myself of course. But my advocacy work and scholarship is dedicated to those that cannot fight for themselves. In short, I advocate for all people with a disability. I do this because it is the ethical thing to do. It is something I will spend the rest of my life doing.
The point of the above is to ask those that have a strong or even violent reaction to my work to please think before you send me an email or submit a comment. Please do not tell me that you hope my son will be paralyzed like Christopher Reeve. Do not tell me you hope my bothers and sisters all become disabled, develop a seizure disorder or dementia. Do not tell me my parents are ashamed of me or I am paralyzed for their past mortal sins. Please do not tell me I am the Anti-Christ. Please do not tell me I am filled with rage and hatred because I cannot walk. Please do not tell me you hope I am in car crash and die a slow death on the side of the road. Do not wish my house burns down. Do not curse me or tell me I am going to rot in hell for eternity. All these comments have been sent my way within the last two months.
What good can come from such comments? How can I possibly respond? Criticism I get. I am happy to engage others who disagree with me. I always learn something from those who hold opposing view points. In part this is why I loved the comment section of Bad Cripple. But what I really do not get is why. Why lash out at me? Perhaps these comments are indicative of post 9/11 American culture. Dissent has somehow morphed into a tawdry if not anti American enterprise. Those that oppose the status quo are unpatriotic and possibly dangerous. I know my words can be upsetting to others--others who have an entrenched and often antiquated conception of disability. I have no doubt those that embrace a charity or medical model of disability will not like my work. I know my words can be harsh. I have taken others to task--others with and without a disability. I take no joy in this and instead am trying to make a much larger point. I use the moniker Bad Cripple for good reason. I am bad because I am not willing to bow down to others. I am capable and willing to assert my civil rights awarded to me 23 years ago by the ADA. If I was black and the year was 1950 something I would be considered "uppity". Like historic figures in the civil rights movement I advocate equality for all.
Hence, I am on the side all people with a disability. I have made this choice knowing it will not make me popular. I can live with this. What bothers me is the hate and venom that has been sent my way by others with a disability. I am on your side. I always will be. Question me. Challenge me. But please do not hate me. This is a waste of time and energy. Important work needs to be done to protect and advance the civil rights of people with a disability. Hate is counter productive.
Saturday, February 22, 2014
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: http://johannesen.ca/2014/02/i-thought-i-knew-everything-already-part-2/ 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...
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.
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: http://johannesen.ca/2014/02/i-thought-i-knew-everything-already-part-2/ 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: http://badcripple.blogspot.com/2013/11/an-unexpected-humiliation-at-conference.html 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.
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