I have been relatively inactive recently. I am caught up with the usual end of semester madness and demands of work and family. While I may be silent, I have been following the news as it pertains to disability. At the forefront this month are multiple stories related to the role or lackthereof for disabled characters on television, film, and theatre. Wheelie Catholic and Wheelchair Dancer have, for good reason, blasted the television program Glee. Disabled actors have protested the use of Abigal Breslin in a production about the life of Helen Keller--they believe a blind actress should have been awarded the part. Predictably, mainstream news outlets belittle critiques leveled by actors with disabilities. Like bigoted Hollywood producers that do not caste actors with a disability to portray a character with a disability, news reports state "We tried, there are just not any qualified disabled actors. No person with a disability was good enough to play the part". Yeah, right! If this were true why do so many actors with a disability bitterly complain about rampant and persistent discrimination. Many contend, what's the big deal. Well, it is a very big deal to me and it involves far more than an ideological viewpoint. As the title of Nothing About Us Without implies and graphically demonstrates when it come to disability issues people with a disability must be present for effective change to take place. Hollywood is quite content to lock out actors with a disability. They have done this in the past and they are doing so today. I cannot believe there is a lack of qualified actors with a disability. I believe overt prejudice exists as does subtle bias. I know this in part because I am in a profession, academia, that is hostile to the presence of people with a disability and disability rights. My isolation is to a degree extreme. I have always worked in isolation, that is as the only person with a disability on campus. Aside from a lack of support for my civil rights, the not so subtle message is that people on campus have no place being a professor. It is not a role I or any other paralyzed person is expected to fill.
My views are harsh. Certainly more harsh than Leonard David who recently wrote a thought provoking article, "Let Actors with Disabilities Play Characters with Disabilities", on December 7 in the Huffington Post. I greatly admire Davis' scholarship and activism but he is far too generous in my opinion when it comes to Hollywood. Of course I do not in any way want a person with a disability to get a part simply because he or she has a disability. But as Davis noted "the current reality is that non-disabled actors get to play whatever roles they want whereas disabled actors don't. So there is not a level playing field. One group has all the advantages while the other is discriminated against. The three major entertainment unions agree. It's now been a year since they launched a campaign to create equal employment opportunities for people with disabilities." And what has happened in the last year? Nothing. Actors with disabilities are still discriminated against and actors without a disability play the parts of people who are blind, deaf, paralyzed etc. The result is that we people with a disability remain unemployed in great numbers and socially invisible. We as a society can do better, much better. Don't tell me there are not qualified people looking for work in multiple professions, acting included. Yet within popular culture and the media, especially television and film, characters with disability are a rarity or, worse yet, reduced to a stereotype. This infuriates and worries me. Where are the role models for people with a disability? Who are children with a disability expected to emulate? What message is sent when we have a person without a disability caste in a role as person with a disability? To me it is truly strange when I see a person use a wheelchair in a given role and then see that same individual walk around. The larger message sent is clear: people with a disability, in this case anyone that uses a wheelchair, is not competent. This is a lie, a gross falsehood many accept. It leads to overt prejudice against people with a disability. It takes place in Hollywood, on college campuses, and in the business world. Prejudice accounts for why people with a disability are at such a gross disadvantage economically and socially. The issue is not a given physical deficit but social stigma.
Needles to say no one wakes up and thinks, as Mary Johnson demonstrated in her book Make Them Go Away, that I am going to be biased against a person with a disability. But just because this is not an overt thought in people's mind does not mean rampant prejudice does not exist. The prejudice people with a disability encounter is different from let's say racial bigotry that is clearly understood and frowned upon (all children are taught this in school). It is equally troubling that disability based prejudice is not widely acknowledged. Sure we have the ADA but few people equate it with civil rights legislation. We people with a disability are out of sight and out of mind. And frankly we could use more than a little help from Hollywood because they have a vast influence on millions of people. Just imagine what would happen if somehow disability became cool. Hollywood has the power to make this happen but chooses instead to lock out actors with a disability and more generally a disability rights viewpoint. I for one would like to be perceived as cool once in my life. Ah, dreams die hard even in my household.
Saturday, December 12, 2009
Tuesday, December 1, 2009
Employment Situation Bleak
One person who I can always count on for a sober assessment of the social and economic conditions people with a disability find themselves in is Joseph Shapiro. Author of Nothing About Us Without Us, Shapiro often makes astute points about the economic plight of people with a disability. When I was driving yesterday I heard Shapiro on NPR commenting about an ever present and worsening problem for people with a disability--employment or more accurately rampant unemployment.
In October the national unemployment rate hit 10.2% Economists and the mass media freaked out. The grim unemployment figures made headlines nation wide. The national news led off its programing with stories about what this means to the country and the Obama administration. When I saw these reports I yawned, bored in the extreme. Was I being selfish? I suppose but what I immediately thought of when I heard about the national unemployment rate was the fact that the Office of Disability Employment Policy at the U.S. Department of Labor Surveys estimates that 21 million out of 26 million people with a disability are not even in the work force. 21 million people do not simply give up. The vast majority of these people want to work but after years and even a decade of looking came to the only logical conclusion: people with a disability face an uphill struggle to enter the work force. One could even make the case the struggle to find work is hopeless. Here I am not referring to a job of choice but any job at all. Combine the overwhelming odds against finding employment with the fact many people with a disability rely on government health care in which there is a disincentive to work (they lose health care if they earn too much). The net result is that the vast majority of people with a disability are only marginally attached to the work force in this country. This creates not only economic hardship, a loss of self worth, but further isolates people with a disability socially. Like it or not, we often judge others by what they do for a living and economic resources dictate one's lifestyle.
I wish I had a solution to the unemployment problem people with a disability routinely encounter. If I did I would not be marginally employed as I am now. My marginalization is directly related my disability yet also has much to do with the fact I am in a field, anthropology, that, like many other social sciences, is no longer valued in the form of tenure track positions. Universities have learned from large corporations and scaled back the number of people they hire full time (benefits are a pipe dream). Hence about half of all college professors are part timers like me and I consider myself a highly educated day laborer. But unlike my peers I encounter significant obstacles--social, economic, and architectural. The result is jobs are harder to find and employers do not want to hire people with a disability. Based on my observations and personal experience people with a disability are not represented in the work force. I rarely if ever encounter a person with a disability and I make it a point to ask students I teach if they have ever had a professor that used a wheelchair. Not once in the last 15 years has a student answered yes. This is a real problem and the utter absence of people with a disability in the professorial work force signifies something more significant is taking place. The same can be said for dozens of other professions.
I have repeatedly been told that employers fear making work place accommodations will be costly, require expensive technology, or worry the person with a disability is not capable of doing a given job. These misconceptions are hard to eradicate. Department of Labor figures estimate that 56% of accommodations cost nothing and if any money is involved the cost is less than $600. I for one have never had an institution make any work place accommodation in spite of the fact they were required to do so. For example, when I teach if the table is too low I take an eraser and stick it under the legs of the table. Problem solved. But what happens if I want to use the bathroom? I am often out of luck as I know to not even ask because the answer is always a resounding no. In contrast to many others with a disability, I have been able to scrabble a series of dead end jobs together and, with the support of my family, somehow make ends meet. I do not take my struggles to heart as I know much is going on well beyond my individual qualifications. There is a social, economic and institutional bias that makes entry into the work force exceedingly difficult and impossible for some. This is grossly wrong and I do not know how to force society to change. All I can do is go to work, demonstrate that I am a valuable employee and a competent if not dedicated teacher. In shot, I do my best every day. Most days this seems to be inadequate at best for I know there are millions of people with a disability that would love to have the chances and opportunities that I have had. I am a lucky man and can only hope with time others like me will get a chance to demonstrate their abilities as well.
In October the national unemployment rate hit 10.2% Economists and the mass media freaked out. The grim unemployment figures made headlines nation wide. The national news led off its programing with stories about what this means to the country and the Obama administration. When I saw these reports I yawned, bored in the extreme. Was I being selfish? I suppose but what I immediately thought of when I heard about the national unemployment rate was the fact that the Office of Disability Employment Policy at the U.S. Department of Labor Surveys estimates that 21 million out of 26 million people with a disability are not even in the work force. 21 million people do not simply give up. The vast majority of these people want to work but after years and even a decade of looking came to the only logical conclusion: people with a disability face an uphill struggle to enter the work force. One could even make the case the struggle to find work is hopeless. Here I am not referring to a job of choice but any job at all. Combine the overwhelming odds against finding employment with the fact many people with a disability rely on government health care in which there is a disincentive to work (they lose health care if they earn too much). The net result is that the vast majority of people with a disability are only marginally attached to the work force in this country. This creates not only economic hardship, a loss of self worth, but further isolates people with a disability socially. Like it or not, we often judge others by what they do for a living and economic resources dictate one's lifestyle.
I wish I had a solution to the unemployment problem people with a disability routinely encounter. If I did I would not be marginally employed as I am now. My marginalization is directly related my disability yet also has much to do with the fact I am in a field, anthropology, that, like many other social sciences, is no longer valued in the form of tenure track positions. Universities have learned from large corporations and scaled back the number of people they hire full time (benefits are a pipe dream). Hence about half of all college professors are part timers like me and I consider myself a highly educated day laborer. But unlike my peers I encounter significant obstacles--social, economic, and architectural. The result is jobs are harder to find and employers do not want to hire people with a disability. Based on my observations and personal experience people with a disability are not represented in the work force. I rarely if ever encounter a person with a disability and I make it a point to ask students I teach if they have ever had a professor that used a wheelchair. Not once in the last 15 years has a student answered yes. This is a real problem and the utter absence of people with a disability in the professorial work force signifies something more significant is taking place. The same can be said for dozens of other professions.
I have repeatedly been told that employers fear making work place accommodations will be costly, require expensive technology, or worry the person with a disability is not capable of doing a given job. These misconceptions are hard to eradicate. Department of Labor figures estimate that 56% of accommodations cost nothing and if any money is involved the cost is less than $600. I for one have never had an institution make any work place accommodation in spite of the fact they were required to do so. For example, when I teach if the table is too low I take an eraser and stick it under the legs of the table. Problem solved. But what happens if I want to use the bathroom? I am often out of luck as I know to not even ask because the answer is always a resounding no. In contrast to many others with a disability, I have been able to scrabble a series of dead end jobs together and, with the support of my family, somehow make ends meet. I do not take my struggles to heart as I know much is going on well beyond my individual qualifications. There is a social, economic and institutional bias that makes entry into the work force exceedingly difficult and impossible for some. This is grossly wrong and I do not know how to force society to change. All I can do is go to work, demonstrate that I am a valuable employee and a competent if not dedicated teacher. In shot, I do my best every day. Most days this seems to be inadequate at best for I know there are millions of people with a disability that would love to have the chances and opportunities that I have had. I am a lucky man and can only hope with time others like me will get a chance to demonstrate their abilities as well.
Tuesday, November 24, 2009
Ian Pearl: The Dog that Bit Back
Last month I read about Ian Pearl and hoped that his story would get wide spread coverage and become part of the debate about health care reform. Sadly, I suspect few people recall who and why Ian Pearl was in the news. And yes Pearl was in news in the form of stories in the Washington Post, Miami Herald, Huffington Post, and CNN. Let me refresh your memory. Ian Pearl is a 37 year old man who was one of the first students with a disability mainstreamed in Broward County, Florida. Pearl has Muscular Dystrophy and has used a ventilator for the last 18 years. Usually when one uses a ventilator the person in question ends up in an institution. In Pearl's case he was lucky in that his father purchased an insurance policy in 1981 with Guardian Life, a multi billion dollar New York based insurance company. The policy had no lifetime benefit cap and covered home nursing care. In October Guardian Life withdrew Pearl's policy from all policy holders in New York where his father's business is based. The "replacement" plan had limited benefits and home nursing was not covered. For Pearl, this change was a death sentence (as a last resort he would have been admitted to a state hospital under Medicaid). Pearl filed a lawsuit and asked the Department of Health and Human Services to force Guardian Life to continue his insurance. All this is pretty humdrum, typical big business. Who cares if one man will die or be forced into a nursing facility where his life expectancy is nil? This all changed when Pearl's lawsuit uncovered inflammatory documents that established Guardian Life had created a "hit list" of its costliest members they wanted to "get rid of". Who did Guardian Life target? People with muscular dystrophy, multiple sclerosis, brain injury, and paralysis. Guardian executives referred to people like Pearl and my paralyzed ass as "dogs" and "trainwrecks". They openly debated how to get rid of people with expensive and chronic conditions. It is against the law to cancel individual members with health problems so Guardian Life decided to cancel plans for all members of the specific plan Pearl had. A federal court ruled the Guardian Life actions were legal, barring an order by the Department of Health and Human Services, and that as of December 1 Pearl would lose his policy.
Ian Pearl's story has a happy ending. Guardian Life reversed its decision once it got bad publicity and restored Pearl's policy. Surely characterizing Pearl as a "dog" and "trainwreck" did not help Guardian Life's image and prompted the CEO, Dennis Manning, to apologize for the memo. Guardian Life's contention that policies such as Pearl's that offered unlimited home nursing was too expensive for small business customers to buy failed to resonate. Legislators have also stepped into the picture in New York and are trying to pass what they call Ian's Law that will prevent insurance companies from discontinuing policies deemed too expensive. I am obviously relieved for Pearl but know his ability to fight back was not the norm. Thus I cannot help but wonder how many others "dogs" with muscular dystrophy, multiple sclerosis, brain injury, and paralysis have had their policies discontinued? How many people have died as a result of Guardian Life's effort? More generally, are chronic conditions i.e. expensive medical care the reason why people spend so much on health care policies? Guardian Life is an old company whose tag line is "Solutions for Life". Well, it appears Guardian Life's solution is get rid of people like Pearl and me whose life is not valued or at least deemed too costly.
Guardian Life is not the entire problem but rather a symbol of a much larger issue. First, there are no ethics in business. We live in an era of global capitalism where the bottom line, money, is more important than any other variable. No amount of individual wealth is enough. This is a new era for Americans my age that came of age when paternalistic capitalism was the norm. I vividly recall my father telling me his company and others like it had the moral responsibility to take care of its workers. Can you imagine any CEO stating that today? I am not naive. My father and other wealthy capitalists wanted to make a profit but knew the difference between right and wrong. Targeting "dogs", people that truly need health insurance, is simply wrong--especially for a company that reported $7.5 billion dollars in revenue and a net income of $437 million dollars. What I want to know is why did no one at Guardian Life state the obvious--people like Pearl need their policy to survive and as such the policy must be honored even if they lose money. Second, health care costs in the last decade have sky rocketed. Every person that has been ill or can read a newspaper knows this. At the same time, companies like Guardian Life have drastically scaled back the benefits in the types of plans it carries. In home nursing care is deemed too costly and by contemporary standards Pearl's policy is generous. The overwhelming bias against home care reveals what ADAPT has been fighting for years--the nursing home bias. It is far more humane and economical to provide care for a person like Pearl in his own home. Think about it this way: would you like to live in a hospital or nursing facility at age 37? I think not. Third, I have noticed in the last few years that popular culture and the mass media have decided that life on a ventilator is no life at all. TV shows such as ER and movies such as Million Dollar Baby receive accolades while depicting life on a ventilator or with a disability such as paralysis as a fate worse than death. This is infuriating to me for it contradicts everything that I know and believe. We humans are highly adaptable, have great individual variation and these are traits that should be valued. Instead, there is an effort under way to kill Pearl and by extension people like me or at least manipulate our bodies in ways that are questionable at best (think the Ashley Treatment).
I am not being extremist--if you doubt me read the work of Peter Singer who would prefer people like Pearl did not exist as he would encourage parents to kill infants with disabilities. A belief that has filtered into neonatal units as the journal Pediatrics recently reported nurses considered death preferable to a life with a disability. How and when did people with a disability become expensive unwanted commodities is a question I do not have the answer to. A variable surely is simple numbers, there are more people with a disability living a rich and full life. But that life takes money and support in the form of adequate health care. More importantly though life with a disability must be valued. People at Guardian Life cannot consider Pearl and me to be dogs. We are human beings and our humanity must be recognized. But this effort does not begin or end with Guardian Life. My neighbors must consider me, a man that uses a wheelchair, a part of the community and demand public buildings be accessible. Schools must see past a given disability and acknowledge and value the potential of all students. Colleges must do the same and make an effort to include disability studies into the larger curriculum. Corporations must hire people with a disability. Citizens must elect candidates with a disability. In order for me to not feel a class apart from the rest of society people like me must be included at every social strata. Until that happens corporations like Guardian Life will continue to do everything in its power to get rid of dogs like Pearl and me. Thankfully some dogs like Pearl bite back and this bad cripple will continue to wield a mean pen and assert his civil rights.
Ian Pearl's story has a happy ending. Guardian Life reversed its decision once it got bad publicity and restored Pearl's policy. Surely characterizing Pearl as a "dog" and "trainwreck" did not help Guardian Life's image and prompted the CEO, Dennis Manning, to apologize for the memo. Guardian Life's contention that policies such as Pearl's that offered unlimited home nursing was too expensive for small business customers to buy failed to resonate. Legislators have also stepped into the picture in New York and are trying to pass what they call Ian's Law that will prevent insurance companies from discontinuing policies deemed too expensive. I am obviously relieved for Pearl but know his ability to fight back was not the norm. Thus I cannot help but wonder how many others "dogs" with muscular dystrophy, multiple sclerosis, brain injury, and paralysis have had their policies discontinued? How many people have died as a result of Guardian Life's effort? More generally, are chronic conditions i.e. expensive medical care the reason why people spend so much on health care policies? Guardian Life is an old company whose tag line is "Solutions for Life". Well, it appears Guardian Life's solution is get rid of people like Pearl and me whose life is not valued or at least deemed too costly.
Guardian Life is not the entire problem but rather a symbol of a much larger issue. First, there are no ethics in business. We live in an era of global capitalism where the bottom line, money, is more important than any other variable. No amount of individual wealth is enough. This is a new era for Americans my age that came of age when paternalistic capitalism was the norm. I vividly recall my father telling me his company and others like it had the moral responsibility to take care of its workers. Can you imagine any CEO stating that today? I am not naive. My father and other wealthy capitalists wanted to make a profit but knew the difference between right and wrong. Targeting "dogs", people that truly need health insurance, is simply wrong--especially for a company that reported $7.5 billion dollars in revenue and a net income of $437 million dollars. What I want to know is why did no one at Guardian Life state the obvious--people like Pearl need their policy to survive and as such the policy must be honored even if they lose money. Second, health care costs in the last decade have sky rocketed. Every person that has been ill or can read a newspaper knows this. At the same time, companies like Guardian Life have drastically scaled back the benefits in the types of plans it carries. In home nursing care is deemed too costly and by contemporary standards Pearl's policy is generous. The overwhelming bias against home care reveals what ADAPT has been fighting for years--the nursing home bias. It is far more humane and economical to provide care for a person like Pearl in his own home. Think about it this way: would you like to live in a hospital or nursing facility at age 37? I think not. Third, I have noticed in the last few years that popular culture and the mass media have decided that life on a ventilator is no life at all. TV shows such as ER and movies such as Million Dollar Baby receive accolades while depicting life on a ventilator or with a disability such as paralysis as a fate worse than death. This is infuriating to me for it contradicts everything that I know and believe. We humans are highly adaptable, have great individual variation and these are traits that should be valued. Instead, there is an effort under way to kill Pearl and by extension people like me or at least manipulate our bodies in ways that are questionable at best (think the Ashley Treatment).
I am not being extremist--if you doubt me read the work of Peter Singer who would prefer people like Pearl did not exist as he would encourage parents to kill infants with disabilities. A belief that has filtered into neonatal units as the journal Pediatrics recently reported nurses considered death preferable to a life with a disability. How and when did people with a disability become expensive unwanted commodities is a question I do not have the answer to. A variable surely is simple numbers, there are more people with a disability living a rich and full life. But that life takes money and support in the form of adequate health care. More importantly though life with a disability must be valued. People at Guardian Life cannot consider Pearl and me to be dogs. We are human beings and our humanity must be recognized. But this effort does not begin or end with Guardian Life. My neighbors must consider me, a man that uses a wheelchair, a part of the community and demand public buildings be accessible. Schools must see past a given disability and acknowledge and value the potential of all students. Colleges must do the same and make an effort to include disability studies into the larger curriculum. Corporations must hire people with a disability. Citizens must elect candidates with a disability. In order for me to not feel a class apart from the rest of society people like me must be included at every social strata. Until that happens corporations like Guardian Life will continue to do everything in its power to get rid of dogs like Pearl and me. Thankfully some dogs like Pearl bite back and this bad cripple will continue to wield a mean pen and assert his civil rights.
Friday, November 20, 2009
Visual Activism is Not Enough
Rosemarie Garland-Thomson is one of the leading figures in disability studies. I respect her scholarship yet find her passivity frustrating in the extreme. She has a new book, Staring: How We Look, that I am using as a required text for my class on disability and anthropology. Staring is thought provoking and by far Garland-Thomson most accessible work to date. Garland-Thomson explores a little discussed subject: why humans stare. In Staring she carefully crafts theoretical arguments with imagery in a way that prompts one to think in a different way. I particularly admire her use of visual images that are directly linked to memoirs, art, popular culture, media representations of disability, and why we stare at certain bodies and body parts. Garland-Thomson six part text ends with a short section entitled "Visual Activism", a great idea as far as it goes. In short, Garland-Thomson praises people such as Matuschka, a flamboyant model who had breast cancer and changed the way we think about the implications of the disease by exposing her scars thereby commanding others not to look away. Garland-Thomson also points to Harriett McBryde Johnson, a disability activist who debated Peter SInger and found herself on the cover of the New York Times Magazine section. Positioning one's self in the public eye can be part of claiming an identity that is linked to disability and empowerment. This is fine in theory but does not nearly go far enough to force effective social change, change that will truly lead to equality for all people with a disability. Visual activism is too passive an approach for me. Being out there is not enough because people do not want to change their views with regard to disability. Most people have little or no experience with disability and the little they do know is often wrong. I cannot blame people too much--the media does a horrific job representing people with a disability and the most well known person with a disability in recent years, Christopher Reeve, did nothing to foster the development of disability rights. Indeed, Reeve accepted a medical model of disability, sought out a single goal, cure, and reinforced many dated beliefs about disability.
So what do I suggest in place of visual activism? I think we people with a disability must not only get out in the public, be in the public eye, but be confrontational in a polite but assertive way. When we confront a lack of access we must assert ourselves in way that demonstrates that the issue is not singularly unusual but involves a violation of our civil rights. This is not just wrong but illegal and we cannot be bought off with a $100 voucher from an airline or a free hotel room for the night. This confrontational style can take many forms and dawned on me this summer on a trip to Seattle. Let me provide two example: First, when I was in Seattle I stayed at the Marriott. I booked an accessible room and it had the worst designed bathroom I have ever encountered. The shower had a bench seat that was so far from the shower head the water could not reach any person that sat on the bench. I was able to move to a room that had a functional bathroom but I have not let the issue go. Since the summer I have been in continuous contact with the Marriott and am trying to force them to make the bathroom accessible. I have turned down multiple perks since I complained because I do not want them. What I want is to see is change as in making the the bathroom accessible as advertised. The manager and the Marriott does not understand the point. I am not dropping the issue and cannot be paid off. My complaint is about equality and I hope they will eventually understand this. Second, when in Seattle my son and I spent much time eating and shopping our way through the Pike Street Market. I truly love the seafood for sale and funky nature of the Pike Street Market. I do not like the crowds and grew frustrated when people would often comment "watch out for the wheelchair". After hearing this inane comment too many times I became more than frustrated. So on our way back to out hotel when I heard "watch out for the wheelchair" a light bulb went off in my head and I turned to my son and repeated the phrase with one modification. The person that stated "watch out for the wheelchair" was a woman wearing black shirt. I mimicked her phrase and voice and told my son "watch out for the woman in the black shirt". The look of utter confusion on her face was priceless. My son was not only highly amused but we repeated this again and again with consistently interesting results. Since my experiences this summer at Pike Street Market if someone ever states "watch out for the wheelchair" I instantly repeat and modify this phrase.
The point I am trying to emphasize is that direct action is required for being present is simply not enough. Garland-Thomson was on the right track but too passive. We people with a disability must shatter old stereotypes and force people to change. We can do this via direct confrontation that has an edge but is still polite. There is much change that needs to take place and in some ways what I am suggesting reminds me of skiing on busy weekends. When looking down the slope and I see many people below me my brother in law half joked it was a "target rich environment". When I go out the door and interact with the ignorant bipedal masses of people that surround me I always feel like I am in a "target rich environment". Being present is fine but being subversive is even better.
So what do I suggest in place of visual activism? I think we people with a disability must not only get out in the public, be in the public eye, but be confrontational in a polite but assertive way. When we confront a lack of access we must assert ourselves in way that demonstrates that the issue is not singularly unusual but involves a violation of our civil rights. This is not just wrong but illegal and we cannot be bought off with a $100 voucher from an airline or a free hotel room for the night. This confrontational style can take many forms and dawned on me this summer on a trip to Seattle. Let me provide two example: First, when I was in Seattle I stayed at the Marriott. I booked an accessible room and it had the worst designed bathroom I have ever encountered. The shower had a bench seat that was so far from the shower head the water could not reach any person that sat on the bench. I was able to move to a room that had a functional bathroom but I have not let the issue go. Since the summer I have been in continuous contact with the Marriott and am trying to force them to make the bathroom accessible. I have turned down multiple perks since I complained because I do not want them. What I want is to see is change as in making the the bathroom accessible as advertised. The manager and the Marriott does not understand the point. I am not dropping the issue and cannot be paid off. My complaint is about equality and I hope they will eventually understand this. Second, when in Seattle my son and I spent much time eating and shopping our way through the Pike Street Market. I truly love the seafood for sale and funky nature of the Pike Street Market. I do not like the crowds and grew frustrated when people would often comment "watch out for the wheelchair". After hearing this inane comment too many times I became more than frustrated. So on our way back to out hotel when I heard "watch out for the wheelchair" a light bulb went off in my head and I turned to my son and repeated the phrase with one modification. The person that stated "watch out for the wheelchair" was a woman wearing black shirt. I mimicked her phrase and voice and told my son "watch out for the woman in the black shirt". The look of utter confusion on her face was priceless. My son was not only highly amused but we repeated this again and again with consistently interesting results. Since my experiences this summer at Pike Street Market if someone ever states "watch out for the wheelchair" I instantly repeat and modify this phrase.
The point I am trying to emphasize is that direct action is required for being present is simply not enough. Garland-Thomson was on the right track but too passive. We people with a disability must shatter old stereotypes and force people to change. We can do this via direct confrontation that has an edge but is still polite. There is much change that needs to take place and in some ways what I am suggesting reminds me of skiing on busy weekends. When looking down the slope and I see many people below me my brother in law half joked it was a "target rich environment". When I go out the door and interact with the ignorant bipedal masses of people that surround me I always feel like I am in a "target rich environment". Being present is fine but being subversive is even better.
Wednesday, November 11, 2009
Anger Helps
In the Body Silent Robert Murphy wrote about two types of anger. The first, existential anger, involves a pervasive bitterness at one's fate. Existential anger fuels self hate and is tied to shame and guilt. I do not know any people with a disability that feel this sort of existential anger that is directed inward and is inherently self destructive. In contrast, I know many people without a disability that think all people with a disability are angry because of their physical disability. More than once I have been accused of having a "chip on my shoulder" or that it "always has to be about me". What these statements assume is that the problems I have, and obvious anger, is of my own making. But this is simply not the case. My anger does not stem from my inability to walk but the skewed social interaction, stigma, and fear placed on top of an existing physical deficit. This is a point most people in my experience don't grasp and gets me to the second type of anger, situational anger. I have lots of situational anger. Situational anger is why I consider myself a bad cripple. Simply put, situational anger is a personal reaction to a perceived injustice and a violation of one's civil rights. I am not angry because I cannot walk up the steps. I am angry because the law mandated a ramp be constructed and that law has been ignored for a decade. I am angry at the situation and needless physical barrier. I am equally angry when my civil rights are violated as when I try to vote or attend a sporting event without being harassed by strangers who object to my presence. Situational anger is very common because people with a disability are not valued and access is not a priority in this country. If people with a disability were truly valued the unemployment rate would not be near 70% nor would 67% of polling places be inaccessible to me.
To me, situational anger is good. Situational anger rejects commonly held stereotypes and involves asserting one's civil rights. I am all for this. And this is the best thing the disability rights movement has going for it. Interesting to me is that the people I encounter most willing or likely to become angry are not disabled themselves. Instead, the people I see become angry are parents of children with a disability. I wish I could figure out a way to forge a relationship with these angry parents because they have the ability to change our educational system, one that is profoundly flawed. Actually they are changing the way we educate children with a disability and by extension the way we perceive disability. Problems abound as does prejudicial attitudes, especially given the economy and tight school budgets. But I am hopeful because people, parents of children with a disability are fighting back and rejecting dominant socio-cultural norms. I know this to be true as I read editorials from all over the country and parents are asking why their kids with a disability do not have the same rights as others. For instance, in the Kansas City Star, hardly a radical newspaper, Lisa Cannady wrote about her experiences. On November 8, she wrote "Our Most Vulnerable People Deserve a Full Chance in Life". I quote:
"There is something, collectively, in us that has allowed us to ignore the most vulnerable among us. From the waiting list that thousands of Kansans with disabilities have to negotiate, to comments earlier this year by President Obama about the Special Olympics, it is clear that disabled people remained largely disenfranchised. This is the last taboo, the group that it is still acceptable to marginalize.
The ugly truth is that when the needs and rights of people with disabilities are not upheld, when indignities — the big ones and the little ones — are allowed to go unchecked, it tells this vulnerable population that they don’t deserve better. It tells them substandard care and consideration are all that special needs people are worthy of.
As the mom of a special needs child, I am not prepared to accept that as my child’s due. I am not raising my son to sit at the back of the bus."
Cannady is doing exactly what Robert Murphy wanted people with and without a disability to do: reject existential anger. Cannady is not angry her child has a disability, such anger would be counterproductive. She is angry with the prejudicial attitudes, needless obstacles, waiting lists and lack of value placed on educating students with disabilities. We have the power to change this and situational anger is one way to attack the problem. The real trick is not so much the anger involved but in getting society to see past the stereotype of disability as tragedy. As of today society is unwilling to understand why people with a disability are angry but with more parents and bad cripples being produced every day the chances for change are increasing. So this morning I extend a hearty cheers to a mother in Kansas who I have never met but know she is on my side. What a great way to start the day.
To me, situational anger is good. Situational anger rejects commonly held stereotypes and involves asserting one's civil rights. I am all for this. And this is the best thing the disability rights movement has going for it. Interesting to me is that the people I encounter most willing or likely to become angry are not disabled themselves. Instead, the people I see become angry are parents of children with a disability. I wish I could figure out a way to forge a relationship with these angry parents because they have the ability to change our educational system, one that is profoundly flawed. Actually they are changing the way we educate children with a disability and by extension the way we perceive disability. Problems abound as does prejudicial attitudes, especially given the economy and tight school budgets. But I am hopeful because people, parents of children with a disability are fighting back and rejecting dominant socio-cultural norms. I know this to be true as I read editorials from all over the country and parents are asking why their kids with a disability do not have the same rights as others. For instance, in the Kansas City Star, hardly a radical newspaper, Lisa Cannady wrote about her experiences. On November 8, she wrote "Our Most Vulnerable People Deserve a Full Chance in Life". I quote:
"There is something, collectively, in us that has allowed us to ignore the most vulnerable among us. From the waiting list that thousands of Kansans with disabilities have to negotiate, to comments earlier this year by President Obama about the Special Olympics, it is clear that disabled people remained largely disenfranchised. This is the last taboo, the group that it is still acceptable to marginalize.
The ugly truth is that when the needs and rights of people with disabilities are not upheld, when indignities — the big ones and the little ones — are allowed to go unchecked, it tells this vulnerable population that they don’t deserve better. It tells them substandard care and consideration are all that special needs people are worthy of.
As the mom of a special needs child, I am not prepared to accept that as my child’s due. I am not raising my son to sit at the back of the bus."
Cannady is doing exactly what Robert Murphy wanted people with and without a disability to do: reject existential anger. Cannady is not angry her child has a disability, such anger would be counterproductive. She is angry with the prejudicial attitudes, needless obstacles, waiting lists and lack of value placed on educating students with disabilities. We have the power to change this and situational anger is one way to attack the problem. The real trick is not so much the anger involved but in getting society to see past the stereotype of disability as tragedy. As of today society is unwilling to understand why people with a disability are angry but with more parents and bad cripples being produced every day the chances for change are increasing. So this morning I extend a hearty cheers to a mother in Kansas who I have never met but know she is on my side. What a great way to start the day.
Tuesday, November 10, 2009
Baby RB To Die: In My View the Inevitable Outcome
Baby RB will die. I fully expected this result but not the way it came about. According to British news outlets Baby RB's father withdrew his opposition to have life support removed. This took place one day after Andrew Bush, professor of pediatric respirology at Imperial College London testified that a mother's wishes should outweigh those of a father. Based on my understanding of the case via news sources, the pop psychology presented by Dr. Bush sealed Baby RB's fate. If this was not troubling enough, the words of the judge, Justice McFarlane, made it clear that Baby RB had no chance. And if you ask me Baby RB was never given an unbiased chance to survive. Once one gets past the superlatives heaped upon the parents involved, tears shed, clothes worn, and digs deeper the Judges words are sobering. In Justice McFarlane's estimation: "It is appropriate for me to say one or two words, not in judgement, but in endorsement of this sad but in my view inevitable outcome. It is I suspect impossible for those of us to whom such an event has not happened to do more than guess at the impact of it upon these two young parents. In one moment all of the hopes and dreams that they will have had for their expected baby will have been dashed and replaced with a life characterized by worry, stress, exhaustion, confusion and no doubt great sadness."
Clearly Justice McFarlane accepted the views of the "experts" that considered Baby RB's life a sad and pitiful existence. Is this assessment correct? I have no idea. But what I do know is that Justice McFarlane was unable or unwilling to accept that life with a severe disability does inevitably lead to a miserable life. It is as though Justice McFarlane took a page out of an old book, one which assumed a medical model of disability was gospel truth. In this book the doctor is always right (mothers too according to Dr. Bush) and life with a disability is bad--very bad. But why is life with a disability bad? This is the question that Justice McFarlane and many others conveniently ignore. The negative perception of disability is not based on science but rather on society's fear of life with a disability. Sure we build ramps, care for crippled kids and we do this out of the kindness of our heart. What society does not want acknowledge is the most basic need of people with or without a disability--the quest for our very humanity. Baby RB will be killed with kindness by two loving parents lauded by a judge. Baby RB had no chance--our cultural system never valued his existence. By extension, society does not value the presence of any person with a disability. I know this to be true because I have faced bigotry and ignorance for decades. The problems I encounter have nothing to do with my inability to walk but the societal bigotry placed on top of my physical deficit. This is the real issue, one that has not changed much since I was paralyzed 30 years ago or in the 19 years since the ADA was passed. My views are harsh but reinforced by ignorant comments, the utter lack of access, and simple refusal to negotiate difference. Thus in contrast to what others think when I see a person with a disability I see a hard assed survivor. Someone that has learned how to adapt and overcome a hostile social environment. A person that leaves their home with the knowledge they will encounter bigotry, be an unwanted presence yet asserts their most basic human rights. If there is anything sad about the case of Baby RB it that he was not given a chance. But then Baby RB has a lot of company--too many people with a disability are never given a chance or confront a system that prevents them from succeeding.
Clearly Justice McFarlane accepted the views of the "experts" that considered Baby RB's life a sad and pitiful existence. Is this assessment correct? I have no idea. But what I do know is that Justice McFarlane was unable or unwilling to accept that life with a severe disability does inevitably lead to a miserable life. It is as though Justice McFarlane took a page out of an old book, one which assumed a medical model of disability was gospel truth. In this book the doctor is always right (mothers too according to Dr. Bush) and life with a disability is bad--very bad. But why is life with a disability bad? This is the question that Justice McFarlane and many others conveniently ignore. The negative perception of disability is not based on science but rather on society's fear of life with a disability. Sure we build ramps, care for crippled kids and we do this out of the kindness of our heart. What society does not want acknowledge is the most basic need of people with or without a disability--the quest for our very humanity. Baby RB will be killed with kindness by two loving parents lauded by a judge. Baby RB had no chance--our cultural system never valued his existence. By extension, society does not value the presence of any person with a disability. I know this to be true because I have faced bigotry and ignorance for decades. The problems I encounter have nothing to do with my inability to walk but the societal bigotry placed on top of my physical deficit. This is the real issue, one that has not changed much since I was paralyzed 30 years ago or in the 19 years since the ADA was passed. My views are harsh but reinforced by ignorant comments, the utter lack of access, and simple refusal to negotiate difference. Thus in contrast to what others think when I see a person with a disability I see a hard assed survivor. Someone that has learned how to adapt and overcome a hostile social environment. A person that leaves their home with the knowledge they will encounter bigotry, be an unwanted presence yet asserts their most basic human rights. If there is anything sad about the case of Baby RB it that he was not given a chance. But then Baby RB has a lot of company--too many people with a disability are never given a chance or confront a system that prevents them from succeeding.
Friday, November 6, 2009
Baby RB: A Miserable, Sad and Pitiful Existence?
A legal battle is taking place in Britain regarding Baby RB. Doctors caring for a child known only as Baby RB is at the center of a life and death court case. This battle pits two parents against one another. The mother, supported by Baby RB's doctors want to withdraw life support from the one year old child. The father who is separated from his wife is fighting the mother and doctors efforts. The Family Division of the High Court in Britain and Justice McFarlane will decide if Baby RB lives or dies. As one would expect the press has sensationalized the story. Newspaper articles refer to the age of the parents, how they split up amicably, the number of hours they visit their child daily, and what the mother has worn in court. Nuanced debate is utterly absent. The important issue that is lost in the hysteria and headlines is basic: for the very first time a court will decide whether a child lives or dies, a child whose brain function is normal. You read that last sentence correctly: Baby RB's brain function is not impaired. This is subject to some debate because in the words of one doctor "it would take many months or years to develop a two way communication system". Thus it is entirely possible Baby RB can think as clearly as me and the people reading these words. Think long and hard about the implications of this.
Baby RB has a rare condition known as Congenital Myasthenic Syndrome (CMS). I cannot comment on what life with CMS is like. What I can comment on is the overwhelmingly negative assessment of what life is like for a person with a severe disability that have been made in court. What the mother and the doctors that support her decision want to do is kill; kill with love and kindness by removing life support. This is as perverse as it is wrong. It is an emotional argument, one designed to make us cry rather than think. And, as humans we must think long and hard about what is being said in court. For instance, the mother's legal representative has stated "She has seen the pain he experiences just to survive. In her mind the intolerable suffering experienced by her son must outweigh her own personal grief should she lose her child". Michael Mylonas, acting for the hospital trust, stated Baby RB was the "most severely injured child" and evidence compelled the hospital to seek "a peaceful calm and dignified death with palliative care to prevent suffering". Doctors that have appeared in court who support the mother state Baby RB is living "on a knife's edge". This a great sound bite that garnered many headlines. A more sober assessment was buried in a newspaper article that gets to the crux of the issue: "It troubles me that I am committing him on a daily basis to ongoing ventilation in an intensive care unit where I think his daily existence is distressing and that he does not have the basic building blocks which I see as necessary to live in the outside world". How does this doctor know whether Baby RB is distressed? Baby RB knows no other reality and his parents report they can recognize when he is unhappy or in distress. They can also tell when he is experiencing pleasure or, conversely, stress. This leads me to wonder who is in fact distressed, Baby RB or the doctors charged with his care who are making a subjective assessment about his quality of life. What I find amazing is that Baby RB's cognition is being used to justify ending his life. One news report stated "tragically his brain is not affected, so he can hear, feel and see but is locked in a helpless body". These comments echo what the mother's lawyer stated in court: "Witnesses for the trust will say that the fact is that cognition will simply make his own plight all the more unbearable to him. As he gets older he will see glimpses of what others are able to do". Please spare me the melancholy.
When I read the words above I could not help but worry. I know that on a regular basis I pass people that think my existence is not that much different from Baby RB--miserable, sad and pitiful. Scholars, doctors, and strangers alike seem incapable or unwilling to accept the fact that life with a disability regardless of its severity need not involve pain and suffering. I do not suffer nor am I in pain. Any pain I experience is not the result of a bodily deficit but caused by the stigma that tenaciously clings to cultural ideas associated with disability. I am well aware of what others can do--I catch more than mere glimpses of this daily. Frankly, I don't care nor do I even think about what others can do. Walking, jogging, running is not relevant to my life. I fail to understand why we as a culture place such great value on such mundane abilities. Sure the human body was intended to be upright, locomotion bipedal, and for our lungs to operate independently and without mechanical intervention. But this is not always possible and we humans are an amazingly adaptable species. When it is cold we put on warm clothes, when it is hot we seek the shade. We live in all sorts of different environments and we adapt to our surroundings without question or thought. That is we adapt without thought or question until disability enters into the equation. We do not equate adaptation, the bedrock of modern biology and evolutionary theory, with disability. Instead, we perceive disability as inherently bad--something that must be overcome or in Baby RB's case a disability so severe death is preferable. I completely and utterly reject this line of reasoning. I value my existence even though society would prefer my silence, isolation or death.
After reading and thinking about Baby RB this week I feel as though I am at war in my own country and well beyond its borders. Baby RB's mother wants her own child dead and as such is quite like Daniel James' parents that took their son to a suicide clinic and helped him end his own life after a spinal cord injury. These good people only saw pain and suffering--a thought that sends chills down my paralyzed spinal cord. I feel chills because I have no doubt many would like to end my suffering and pitiable existence. Few are willing to voice such an opinion as this would be in bad taste. No one will baldly state life with a disability is not worth living. But the lack of statement to this end does not stop the thought process or its implications. Instead we get people like Peter Singer who writes about lofty goals such as the amelioration of poverty throughout the world. One way to reach this goal is to seek to help the greatest number of people. Singer's goals are great and given unwarranted respect given his position at Princeton University but dig a little deeper and next thing you know babies like Baby RB will die. What will follow this? Should all babies determined to be severely disabled die. Should elderly people experiencing dementia die. Should people with cancer die. Should people with spinal cord injuries die. If so, who gets to make these decisions? And more to the point what does this say about humanity? I can tell you where this line of reasoning will go. The weakest least respected members of society will suffer and needlessly die. I might die. You might die. I am not being reactionary. I know this because I am perceived to be weak, lack social respect, and many think I am suffering and in search of a cure. I am a member of an underclass that has a long and depressing history filled with tragedies such as forced institutionalization and almost universal social invisibility.
I think we people with a disability are on the cusp of major social breakthrough in spite of stories like Baby RB. I suspect, hope, enough people such as myself and others are now in communities across the land that we are reaching a critical mass. We are not silent, we are not meek, and if I am any indication we are angry. We have rights and are willing to assert them. And now is a good time to let our voice be heard. We must protect not only our rights as people with a disability but we must band together with those like Baby RB that have no voice. We must protect Baby RB, fight for his right to live. We must fight for the rights of another child known only as Ashley X who has the right to grow into an adult body, a right that was violated and laws broken in the process. We must fight together and for one another regardless of our respective disability or cognitive functioning. We are all in this together, those with and without a disability. We are fighting for nothing more and nothing less than our very existence. Baby RB reinforced this belief, one I hope many share.
Baby RB has a rare condition known as Congenital Myasthenic Syndrome (CMS). I cannot comment on what life with CMS is like. What I can comment on is the overwhelmingly negative assessment of what life is like for a person with a severe disability that have been made in court. What the mother and the doctors that support her decision want to do is kill; kill with love and kindness by removing life support. This is as perverse as it is wrong. It is an emotional argument, one designed to make us cry rather than think. And, as humans we must think long and hard about what is being said in court. For instance, the mother's legal representative has stated "She has seen the pain he experiences just to survive. In her mind the intolerable suffering experienced by her son must outweigh her own personal grief should she lose her child". Michael Mylonas, acting for the hospital trust, stated Baby RB was the "most severely injured child" and evidence compelled the hospital to seek "a peaceful calm and dignified death with palliative care to prevent suffering". Doctors that have appeared in court who support the mother state Baby RB is living "on a knife's edge". This a great sound bite that garnered many headlines. A more sober assessment was buried in a newspaper article that gets to the crux of the issue: "It troubles me that I am committing him on a daily basis to ongoing ventilation in an intensive care unit where I think his daily existence is distressing and that he does not have the basic building blocks which I see as necessary to live in the outside world". How does this doctor know whether Baby RB is distressed? Baby RB knows no other reality and his parents report they can recognize when he is unhappy or in distress. They can also tell when he is experiencing pleasure or, conversely, stress. This leads me to wonder who is in fact distressed, Baby RB or the doctors charged with his care who are making a subjective assessment about his quality of life. What I find amazing is that Baby RB's cognition is being used to justify ending his life. One news report stated "tragically his brain is not affected, so he can hear, feel and see but is locked in a helpless body". These comments echo what the mother's lawyer stated in court: "Witnesses for the trust will say that the fact is that cognition will simply make his own plight all the more unbearable to him. As he gets older he will see glimpses of what others are able to do". Please spare me the melancholy.
When I read the words above I could not help but worry. I know that on a regular basis I pass people that think my existence is not that much different from Baby RB--miserable, sad and pitiful. Scholars, doctors, and strangers alike seem incapable or unwilling to accept the fact that life with a disability regardless of its severity need not involve pain and suffering. I do not suffer nor am I in pain. Any pain I experience is not the result of a bodily deficit but caused by the stigma that tenaciously clings to cultural ideas associated with disability. I am well aware of what others can do--I catch more than mere glimpses of this daily. Frankly, I don't care nor do I even think about what others can do. Walking, jogging, running is not relevant to my life. I fail to understand why we as a culture place such great value on such mundane abilities. Sure the human body was intended to be upright, locomotion bipedal, and for our lungs to operate independently and without mechanical intervention. But this is not always possible and we humans are an amazingly adaptable species. When it is cold we put on warm clothes, when it is hot we seek the shade. We live in all sorts of different environments and we adapt to our surroundings without question or thought. That is we adapt without thought or question until disability enters into the equation. We do not equate adaptation, the bedrock of modern biology and evolutionary theory, with disability. Instead, we perceive disability as inherently bad--something that must be overcome or in Baby RB's case a disability so severe death is preferable. I completely and utterly reject this line of reasoning. I value my existence even though society would prefer my silence, isolation or death.
After reading and thinking about Baby RB this week I feel as though I am at war in my own country and well beyond its borders. Baby RB's mother wants her own child dead and as such is quite like Daniel James' parents that took their son to a suicide clinic and helped him end his own life after a spinal cord injury. These good people only saw pain and suffering--a thought that sends chills down my paralyzed spinal cord. I feel chills because I have no doubt many would like to end my suffering and pitiable existence. Few are willing to voice such an opinion as this would be in bad taste. No one will baldly state life with a disability is not worth living. But the lack of statement to this end does not stop the thought process or its implications. Instead we get people like Peter Singer who writes about lofty goals such as the amelioration of poverty throughout the world. One way to reach this goal is to seek to help the greatest number of people. Singer's goals are great and given unwarranted respect given his position at Princeton University but dig a little deeper and next thing you know babies like Baby RB will die. What will follow this? Should all babies determined to be severely disabled die. Should elderly people experiencing dementia die. Should people with cancer die. Should people with spinal cord injuries die. If so, who gets to make these decisions? And more to the point what does this say about humanity? I can tell you where this line of reasoning will go. The weakest least respected members of society will suffer and needlessly die. I might die. You might die. I am not being reactionary. I know this because I am perceived to be weak, lack social respect, and many think I am suffering and in search of a cure. I am a member of an underclass that has a long and depressing history filled with tragedies such as forced institutionalization and almost universal social invisibility.
I think we people with a disability are on the cusp of major social breakthrough in spite of stories like Baby RB. I suspect, hope, enough people such as myself and others are now in communities across the land that we are reaching a critical mass. We are not silent, we are not meek, and if I am any indication we are angry. We have rights and are willing to assert them. And now is a good time to let our voice be heard. We must protect not only our rights as people with a disability but we must band together with those like Baby RB that have no voice. We must protect Baby RB, fight for his right to live. We must fight for the rights of another child known only as Ashley X who has the right to grow into an adult body, a right that was violated and laws broken in the process. We must fight together and for one another regardless of our respective disability or cognitive functioning. We are all in this together, those with and without a disability. We are fighting for nothing more and nothing less than our very existence. Baby RB reinforced this belief, one I hope many share.
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