If Americans despise one thing it is the establishment of a set of "special" rules for others. In part this is why I have always hated the term "special education". There is nothing "special" about "special education". In fact I would maintain "special education" is merely different and far too often an inferior education. All those who fall under the rubric "special education" are not special at all. So called "special education" students are instead merely different from the norm. They do not learn at the prescribed rate or cannot physically navigate the educational environment. For me, this would have meant I had to use the "special bus"--though no such bus existed when I was a kid. For others, "special education" can mean a host of different things. Hence the federal government has required all public schools to offer "special education" in the form of an IEP, Individual Education Plan. This is far from perfect but a vast improvement over the bad days. Those bad days involved barring children with disabilities from receiving a public education. Yes, as late as the mid 1970s students with disabilities were not legally entitled to a public education. People like me were deemed a fire hazard or our presence alone was too upsetting to other children. Millions of people with a disability were denied an education and shunted off to institutions. In fact I tell people had I been born in 1950 and not 1960 I would have been sent to an institution and would have never received a formal education.
The history of discrimination directed at people with a disability is virtually unknown outside of the disability community. It is simply not part of secondary education and is rarely taught at the university level. The resulting ignorance on the part of the general public has consequences for so called "special education" students today. Specifically, parents and the general public deeply resent the money spent on "special education". Opposition to "special education" is rampant. For example, in last Sunday's tabloid the New York Post published a short commentary by David Seifman. In "$pecial School Bus". Seifman wrote that the NYC Department of Education will spend $100,000 transporting a single student with severe disabilities to school. According to Seifman, "the student has debilitating conditions that require an advanced life-support ambulance, specifically one operated by Park Avenue Ambulance, which will be paid as much as $96,100 to cover his rides during the 10-month school year". I have no idea if Seifman is correct in his assessment of the cost or condition of the student in question. But I do know what the general public will think. Why the hell are we spending $100,000 a year to transport a kid to school who needs an ambulance with advanced life support? But wait it gets worse--or more expensive. According to the Department of Education, the child in question has been transported to school via ambulance since 2005. In 2010 alone the cost of transportation was $161,200 for this student. Seifman goes on to tell readers that costs for the 55,000 "special education" students amount to a staggering $712 million in 2010 and is projected to cost $805 million dollars this year. These sort of numbers makes an accountant blanch and parents screech in horror. I can just hear parents now: "My kid has to bring his own supplies to school and we spend over $100,000 to transport one kid to school via ambulance! What a waste of money".
Who do we blame for the great expenditure of money on one "special education" student? The Federal Government. Seifman writes: "its only one case but demonstrates how the city is caught between a rock and a had place when it comes to special education, which is governed by state and federal mandates that the city has no choice but to follow, regardless of cost. A student's individual education plan dictates services he or she will receive, and that includes transportation". Let me translate this sentence and its implied meaning: if it were up to me and anyone else with an ounce of common sense I would cut out transportation for this student in a heartbeat. This sort of expenditure is nothing short of wasteful. Spend this money on the "normal" kids who are ignored and under funded by the school. If you think I am being particularly jaundiced I beg to differ. I went to plenty of school board meetings and I noted an immediate pattern--when it came to cutting the budget the first line item eliminated was anything and everything related to improved wheelchair access, transportation, and "special education".
What no one wants to discuss is the long range consequences. What happens if we cut "special education" to the bare bones? What happens to students who learn they are second class citizens who we have no investment in educating? What sort of life will these students have? Will such students think they are destined to be unemployed for their entire lives? Will they be happy for life long hand outs? I would contend we cannot afford to provide an inferior education to so called "special education" students. If we do this, we will have a perpetual underclass of people who will need life time supports. Just how much will that cost taxpayers? Essentially we can invest in education or invest in institutions to house a multitude of people for their entire lives. We can listen to people like Seifman who cater to the lowest common denominator or we can learn from our past mistakes--like barring people with a disability from a public school education.
Wednesday, July 11, 2012
Tuesday, July 10, 2012
Assisted Suicide: I do Have Reasons to Be Afraid
I consider myself to be a friend of Ann Neumann. This sentiment is shared by Ann. Our friendship is a testament to the fact that two people who vigorously disagree with one another can maintain a valued friendship. Ann is in favor assisted suicide legislation. I am staunchly opposed. We have engaged in good natured debate on this subject and more broadly about religion. We have found areas where we are in full agreement. For instance we are both extremely critical of the Catholic Church. We are both critical of pro-life groups and how they have latched on to disability rights opposition to assisted suicide. We each find the hypocracy of pro life groups distasteful. I suspect we also read each others blogs. I do not usually comment on her posts at the Other Spoon but I did respond to her post of June 11 "When the Dying Want to Die". I left a cranky comment and Ann addressed my comment on July 7 in her post "Quick Links: You Should Be Reading..."
I will quote Ann in full:
read Bill Peace's comment to my prior post! Bill and I are friends; he's disabled and I'm not; we disagree on a number of things--and not always respectfully, of course--but we keep the friendship going. My response to his comment is: What--legislatively, practically, pragmatically--does his experience as a discriminated member of society have to do with the legalization of aid in dying (or even removal of terminal patients from unhelpful treatments, etc)?
I think I know what Bill's answer would be. Discrimination is real and so is fear. People confuse and conflate disability with terminality all the time. I would never take him to task for how he feels. Or over not seizing his autonomy from hypothetical others, including "pro-life" organizations that have worked very hard to recruit disabled individuals and groups to "their side"--with scary threats of a "culture of death" just waiting around to kill off the "abnormal." But--and this is really, really important to my point--Bill's had to fight his entire life to make his own health care decisions, to convince everybody that his pain and his life are worth something to him. Individuals wanting to do the same are no threat to Bill.
I do not know what Ann's experience with disability is. I suspect it is limited. In fact, I suspect I am her only friend with what society would deem a severe disability. By itself this is not unusual. In fact I often feel like an endangered species whenever I go out as I am always the only person with a disability present. Regardless, Ann's words fall flat for me. On the one hand she acknowledges discrimination is present and terminal illness is routinely confused with disability. On this we agree. Yet I get a sense Ann is content to let me fight for my rights in isolation. I am afterall highly unusual. She also reduces such a fight to be about "feelings". She would also "never take me to task" for how I feel. I can assure you my fight is not with "hypothetical others". My fight is very real. It involves baseless prejudice acted upon by real people who would like to see me and all the other cripples shut up and quietly and gratefully accept what society deems appropriate to give us. Real people consider me an expensive burden, an economic drain. Real people tell me "I would rather be dead than use a wheelchair". Real people knowingly oppose disability rights. Real people go to great lengths to avoid compliance with the ADA. Real people routinely cut budgets and the first line item to go is always about access. Real people think I cannot read. Real people avoid me because they fear disability. Real people worry I am contagious. Real people with children grab their kids hand in fear and pull their child away from me. I need not go on as you surely get the point. Bigotry is very real, compromises my life and has in fact destroyed countless lives.
Ann asks what my experience with discrimination has to do with legislation for "aide in dying". First, the term "aid in dying" by itself is grossly misleading. It is designed to put people's mind at ease with kind and benign words. Do not be fooled, "aide in dying" is assisted suicide. Second, my experience with discrimination has everything to do with legalizing assisted suicide. Ann is not in an at risk population. I certainly am as a person with a severe disability. Thus we have a two tier system--two ways of dealing with people who want to die. For example, if Ann expressed a desire to die in the face of a routine but non lethal illness such a request would be met with staunch opposition. She would be required to see a psychiatrist and most likely be medicated. All would be opposed to Ann ending her life. If I expressed a similar desire with a similar non life threatening illness the response would radically different. Most if not all would think I have suffered enough and that my request is reasonable. No psychiatrist will be called. No prescriptions given. I would indeed be given aide in dying. The reason for this is simple as it is complex and deadly--my life is not valued. Third, based on my experience in 2010 with a life threatening wound, many assumptions are made about the lives of people with a disability. Those assumptions are made by health care professionals who are not free of bias. Most doctors have no experience with people such as myself who are paralyzed. In fact not a single hospitalist I met had ever treated a paralyzed man. Like many others, the hospitalists assumed I was single, unemployed, and lived in a nursing home. In short, they believed I had nothing to live for. Again, this highlights the two tier system. If I walked in the door would they have made the same assumptions? Not a chance. For me, these dangers are very real and if assisted suicide legislation is passed people with a disability will die. I may die needlessly.
Fighting for one's civil rights and fighting for the right to die is a misleading analogy. The fight for civil rights is about the right to live free of baseless prejudice. That is what the ADA was supposed to do for me and millions of other Americans. The fight for the so called right to die is inherently problematic. Unlike Ann, I see no reason for such legislation. Palliative care has advanced significantly and there is no reason why people should die in pain--this is often sited by advocates as the reason why we need assisted suicide legislation. This is patently false but polls well for groups like Compassion and Choices. In fact, a physician can medicate a patient to relieve pain even if death might occur. The reality is people choose to die in Oregon and Washington because their perceived quality of life is compromised. No one asks the very basic question, why, why is their quality of life compromised? By way of answering this question on the quality of life let me briefly compare my life to others with a paralyzing injury who have struggled or died. We all shared the same legal rights. We were all equal in the eyes of the law. We all had paralyzing injuries. Yet I live a rich and vibrant life while others such as Dan Crews has expressed a desire to die and Christina Symanski actually ended her life slowly and painfully. Why are our lives so radically different? Some may believe my analogy is flawed. I am a paraplegic while Crews and Symanski were quadriplegics. The difference is significant but not enough to express a desire to die much less act out on it. For me, the difference is the social response to disability. This in turn gets me back to the two tier system. It is present even within the minutia of disability itself. While my life is not valued I suspect the life of a quadriplegic is valued even less than my life. This is very hard for me to fathom and makes me wonder just how much can we devalue people with a disability?
I will quote Ann in full:
read Bill Peace's comment to my prior post! Bill and I are friends; he's disabled and I'm not; we disagree on a number of things--and not always respectfully, of course--but we keep the friendship going. My response to his comment is: What--legislatively, practically, pragmatically--does his experience as a discriminated member of society have to do with the legalization of aid in dying (or even removal of terminal patients from unhelpful treatments, etc)?
I think I know what Bill's answer would be. Discrimination is real and so is fear. People confuse and conflate disability with terminality all the time. I would never take him to task for how he feels. Or over not seizing his autonomy from hypothetical others, including "pro-life" organizations that have worked very hard to recruit disabled individuals and groups to "their side"--with scary threats of a "culture of death" just waiting around to kill off the "abnormal." But--and this is really, really important to my point--Bill's had to fight his entire life to make his own health care decisions, to convince everybody that his pain and his life are worth something to him. Individuals wanting to do the same are no threat to Bill.
I do not know what Ann's experience with disability is. I suspect it is limited. In fact, I suspect I am her only friend with what society would deem a severe disability. By itself this is not unusual. In fact I often feel like an endangered species whenever I go out as I am always the only person with a disability present. Regardless, Ann's words fall flat for me. On the one hand she acknowledges discrimination is present and terminal illness is routinely confused with disability. On this we agree. Yet I get a sense Ann is content to let me fight for my rights in isolation. I am afterall highly unusual. She also reduces such a fight to be about "feelings". She would also "never take me to task" for how I feel. I can assure you my fight is not with "hypothetical others". My fight is very real. It involves baseless prejudice acted upon by real people who would like to see me and all the other cripples shut up and quietly and gratefully accept what society deems appropriate to give us. Real people consider me an expensive burden, an economic drain. Real people tell me "I would rather be dead than use a wheelchair". Real people knowingly oppose disability rights. Real people go to great lengths to avoid compliance with the ADA. Real people routinely cut budgets and the first line item to go is always about access. Real people think I cannot read. Real people avoid me because they fear disability. Real people worry I am contagious. Real people with children grab their kids hand in fear and pull their child away from me. I need not go on as you surely get the point. Bigotry is very real, compromises my life and has in fact destroyed countless lives.
Ann asks what my experience with discrimination has to do with legislation for "aide in dying". First, the term "aid in dying" by itself is grossly misleading. It is designed to put people's mind at ease with kind and benign words. Do not be fooled, "aide in dying" is assisted suicide. Second, my experience with discrimination has everything to do with legalizing assisted suicide. Ann is not in an at risk population. I certainly am as a person with a severe disability. Thus we have a two tier system--two ways of dealing with people who want to die. For example, if Ann expressed a desire to die in the face of a routine but non lethal illness such a request would be met with staunch opposition. She would be required to see a psychiatrist and most likely be medicated. All would be opposed to Ann ending her life. If I expressed a similar desire with a similar non life threatening illness the response would radically different. Most if not all would think I have suffered enough and that my request is reasonable. No psychiatrist will be called. No prescriptions given. I would indeed be given aide in dying. The reason for this is simple as it is complex and deadly--my life is not valued. Third, based on my experience in 2010 with a life threatening wound, many assumptions are made about the lives of people with a disability. Those assumptions are made by health care professionals who are not free of bias. Most doctors have no experience with people such as myself who are paralyzed. In fact not a single hospitalist I met had ever treated a paralyzed man. Like many others, the hospitalists assumed I was single, unemployed, and lived in a nursing home. In short, they believed I had nothing to live for. Again, this highlights the two tier system. If I walked in the door would they have made the same assumptions? Not a chance. For me, these dangers are very real and if assisted suicide legislation is passed people with a disability will die. I may die needlessly.
Fighting for one's civil rights and fighting for the right to die is a misleading analogy. The fight for civil rights is about the right to live free of baseless prejudice. That is what the ADA was supposed to do for me and millions of other Americans. The fight for the so called right to die is inherently problematic. Unlike Ann, I see no reason for such legislation. Palliative care has advanced significantly and there is no reason why people should die in pain--this is often sited by advocates as the reason why we need assisted suicide legislation. This is patently false but polls well for groups like Compassion and Choices. In fact, a physician can medicate a patient to relieve pain even if death might occur. The reality is people choose to die in Oregon and Washington because their perceived quality of life is compromised. No one asks the very basic question, why, why is their quality of life compromised? By way of answering this question on the quality of life let me briefly compare my life to others with a paralyzing injury who have struggled or died. We all shared the same legal rights. We were all equal in the eyes of the law. We all had paralyzing injuries. Yet I live a rich and vibrant life while others such as Dan Crews has expressed a desire to die and Christina Symanski actually ended her life slowly and painfully. Why are our lives so radically different? Some may believe my analogy is flawed. I am a paraplegic while Crews and Symanski were quadriplegics. The difference is significant but not enough to express a desire to die much less act out on it. For me, the difference is the social response to disability. This in turn gets me back to the two tier system. It is present even within the minutia of disability itself. While my life is not valued I suspect the life of a quadriplegic is valued even less than my life. This is very hard for me to fathom and makes me wonder just how much can we devalue people with a disability?
Tuesday, June 26, 2012
More on Health Care: But Not From Me
Thanks to Elizabeth who left a comment on my last post I read What Health Insurance Means to Me at Busily Seeking...Continual Change. Wow, and I thought my words the last few days were harsh. I read this blog once in a while but for whatever reason it has fallen off my radar. I have always admired Jeneva Burroughs writing and found the below paragraph to be searing. I urge everyone to read the last two posts she has written about the health care debate.
During this election, I imagine very little will be said about healthcare, the only exception being Romney's undoubted promise to overturn "Obamacare," whatever that actually may be. Hovering behind him may be Paul Ryan, like the swordsman who beheaded Anne Boleyn, distracting our attention with homilies about hard work and shared sacrifice before he swings the arc of his sword behind us, neatly severing our intelligence from our primordial gut responses to the appeal of American individualism. He'll mop up our blood with Medicare vouchers and toss them to the crowd.
During this election, I imagine very little will be said about healthcare, the only exception being Romney's undoubted promise to overturn "Obamacare," whatever that actually may be. Hovering behind him may be Paul Ryan, like the swordsman who beheaded Anne Boleyn, distracting our attention with homilies about hard work and shared sacrifice before he swings the arc of his sword behind us, neatly severing our intelligence from our primordial gut responses to the appeal of American individualism. He'll mop up our blood with Medicare vouchers and toss them to the crowd.
Monday, June 25, 2012
The Politics of Health Care Reform
I was interviewed this morning by a college radio station. The focus of the interview was on how people with a disability or those with a chronic health care concern will be affected by the Affordable Care Act. Note I refuse to use the derisive term Obamacare. The ACA is not about Obama it is about reforming the grossly dysfunctional American health care system. It is about the tens of millions of Americans that have no insurance or those with inadequate insurance. It is about people like me. It is about my son. It is about my neighbor. It is about any person that might happen to read this post and is an American citizen. And sadly much of the ACA is about politics and the conservative justices that make up the Supreme Court. This thought came to me as I was reading Wesley Smith who has a blog Second Hand Smoke. Smith is not my favorite commentator. In fact Smith reminds me of Sydney Hook. Like many others in the 1930s, during the Great Depression Hook embraced communism. Later he renounced his radical views and during the Cold War helped the FBI destroy the careers of many Leftists. Smith is not intent on destroying anyone's career but he is polemical in the extreme.
Here is what Smith has to say about the ACA, Obama and the Democratic Party goals:
They wanted to federalize a huge swath of the economy for political and ideological purposes. Indeed, Obama has already used Obamacare as a method to hand out constituency goodies–at insurance company expense–and use the law to create false wedge political issues, a primary reason for the culturally imperialistic Free Birth Control Rule. Obamacare was also a seizing of power. It is part of elevating the already extensive influence of the technocratic class–which is why I worry it will be allowed to stand by the Supreme Court that tends to reflect technocratic thinking. It is also about erecting a bureaucratic state unaccountable to the people. In short, the law is about making us less free.
Yikes this sort of rhetoric makes me yearn for the delights of the Tea Party. Smith was responding to the "liberal columnist" E. J. Dionne who had an Op Ed piece in the Washington Post over the weekend entitled "Will We Love the Healthcare Law if it Dies". Does Smith really need to label Dionne as a liberal columnist? No, the only point of this characterization is to undermine his credibility. What did Dionne write that was so objectionable? Smith used this quote from Dionne:
Maybe now, supporters of the ACA will find their voices and point to the 30 million people the law would help to buy health insurance, how much assistance it gives businesses, how it creates a more rational health insurance market, how it helps those 26 and under stay on their parents’ health plans, how it protects those with pre-existing conditions. “Obamacare” isn’t about President Obama. It’s about beginning to bring an end to the scandal of a very rich nation leaving so many of its citizens without basic health coverage. However the court rules, we need to remember why this whole fight started in the first place.
I fail to grasp how any person with an ounce of common sense can defend our health care system as it is currently constructed. Health care costs are the leading cause of bankruptcy in the United States. Most Americans are one serious illness away from financial disaster. And what about those of us with permanent long term disabilities? We are uninsurable. We are a financial drain on profits. As Michael Berube noted no one wants to talk about disability. It is the skeleton in the closet. We people with a disability are silently shipped off to nursing homes never to heard from again. I am sure Smith will think I am being just as polemical as he was. There is a big difference between us however. I doubt he fears going to the hospital. I am sure no one will suggest he is better off dead than receiving life saving antibiotics. This is not rhetoric, this is the reality I have experienced. It is the dark under belly no one wants to talk about.
Here is what Smith has to say about the ACA, Obama and the Democratic Party goals:
They wanted to federalize a huge swath of the economy for political and ideological purposes. Indeed, Obama has already used Obamacare as a method to hand out constituency goodies–at insurance company expense–and use the law to create false wedge political issues, a primary reason for the culturally imperialistic Free Birth Control Rule. Obamacare was also a seizing of power. It is part of elevating the already extensive influence of the technocratic class–which is why I worry it will be allowed to stand by the Supreme Court that tends to reflect technocratic thinking. It is also about erecting a bureaucratic state unaccountable to the people. In short, the law is about making us less free.
Yikes this sort of rhetoric makes me yearn for the delights of the Tea Party. Smith was responding to the "liberal columnist" E. J. Dionne who had an Op Ed piece in the Washington Post over the weekend entitled "Will We Love the Healthcare Law if it Dies". Does Smith really need to label Dionne as a liberal columnist? No, the only point of this characterization is to undermine his credibility. What did Dionne write that was so objectionable? Smith used this quote from Dionne:
Maybe now, supporters of the ACA will find their voices and point to the 30 million people the law would help to buy health insurance, how much assistance it gives businesses, how it creates a more rational health insurance market, how it helps those 26 and under stay on their parents’ health plans, how it protects those with pre-existing conditions. “Obamacare” isn’t about President Obama. It’s about beginning to bring an end to the scandal of a very rich nation leaving so many of its citizens without basic health coverage. However the court rules, we need to remember why this whole fight started in the first place.
I fail to grasp how any person with an ounce of common sense can defend our health care system as it is currently constructed. Health care costs are the leading cause of bankruptcy in the United States. Most Americans are one serious illness away from financial disaster. And what about those of us with permanent long term disabilities? We are uninsurable. We are a financial drain on profits. As Michael Berube noted no one wants to talk about disability. It is the skeleton in the closet. We people with a disability are silently shipped off to nursing homes never to heard from again. I am sure Smith will think I am being just as polemical as he was. There is a big difference between us however. I doubt he fears going to the hospital. I am sure no one will suggest he is better off dead than receiving life saving antibiotics. This is not rhetoric, this is the reality I have experienced. It is the dark under belly no one wants to talk about.
Saturday, June 23, 2012
The Disability Bond Can Be Heartwarming
Yesterday my son and I went to the local grocery store. It is great to have him home for a fews days despite the fact he can drive me crazy. Regardless, we were wandering around the grocery store as I wanted to cook something different and use some coupons. We ended up in the produce section where I saw a young girl and her mother. The girl was about six years old. She was sitting in a high end wheelchair tooling around at break neck speeds and bumping into all sorts of stuff. I was so excited! Sightings of adults using a wheelchair are rare in my area. Sightings of a child that uses an obviously high end wheelchair are unheard of. In fact this was a first in 18 years. I gave the young girl a huge smile. She totally ignored me. Awesome, I thought I am just another adult. I asked the mom about the wheelchair, it was an ultra light wheelchair with what looked like a seat insert. The girls posture was perfect. The wheelchair fitted her perfectly. I was ridiculously excited. For me, with one glance I can tell is a person is in the correct manual wheelchair and is seated properly. This is actually quite complicated and a wheelchair seating specialist can enhance a persons life. I engaged the mom and praised her daughter and her perfect positioning. She seemed quite pleased. As we talked, I was thrilled to see that she let her daughter explore on her own but always within sight. We talked shop a bit--little things about how hands get dirty from pushing all day, what rims might eliminate some dirt. I stated such issues were occupational hazards. She laughed. It was nothing short of wonderful--just a two or three minute chat with a stranger.
I spent much of the afternoon wondering why I was delighted by this social encounter. Really, I was over the top happy. I realized that I am often in a sense lonely. Where are others like me? Where are the kids with a disability that will grow and become responsible adults? Where are my crippled peers? In this sense I am lonely. Of course I have friends and colleagues that have a disability but they are scattered all over the country. I am weary of always being the only person that uses a wheelchair at a social event. I am tired of being shunted off to an obscure entrance, told to wait while someone mythic person finds the key to a lift. I watched others poured into the building. Does any one else see how wrong this is? No. This is the weakness of so called "reasonable accommodations". I find many "reasonable accommodations" very unreasonable if not deeply objectionable. On bad days I think things will never change. But yesterday was not a bad day. I saw the future. I saw a mom with her daughter that used a wheelchair. I saw a good wheelchair that fit this young girl perfectly. I saw normal human interaction and was part of it! This is what the ADA was designed to do. Insure equality for all people with a disability. In my mind I want to believe the young girl I met goes to the totally accessible local public school. She gets on a bus with her peers. She participates in all class trips. She has many friends and is not taunted by others. She participates in all gym activities. She is included in any after school activity she wishes. The thought of this experience so different from my own makes my heart soar. I hope it is the reality she will experience.
I spent much of the afternoon wondering why I was delighted by this social encounter. Really, I was over the top happy. I realized that I am often in a sense lonely. Where are others like me? Where are the kids with a disability that will grow and become responsible adults? Where are my crippled peers? In this sense I am lonely. Of course I have friends and colleagues that have a disability but they are scattered all over the country. I am weary of always being the only person that uses a wheelchair at a social event. I am tired of being shunted off to an obscure entrance, told to wait while someone mythic person finds the key to a lift. I watched others poured into the building. Does any one else see how wrong this is? No. This is the weakness of so called "reasonable accommodations". I find many "reasonable accommodations" very unreasonable if not deeply objectionable. On bad days I think things will never change. But yesterday was not a bad day. I saw the future. I saw a mom with her daughter that used a wheelchair. I saw a good wheelchair that fit this young girl perfectly. I saw normal human interaction and was part of it! This is what the ADA was designed to do. Insure equality for all people with a disability. In my mind I want to believe the young girl I met goes to the totally accessible local public school. She gets on a bus with her peers. She participates in all class trips. She has many friends and is not taunted by others. She participates in all gym activities. She is included in any after school activity she wishes. The thought of this experience so different from my own makes my heart soar. I hope it is the reality she will experience.
Thursday, June 21, 2012
Blatant Discrimination: Who Receives Support and Why
Yesterday I read a story about Becky Andrews, a blind woman who was blatantly discriminated against at an Ann Taylor store in Salt Lake City. Apparently Ms. Andrews likes the clothes Ann Taylor sells. She walked into the store with her guide dog, in harness, and was asked to leave. According to Ms. Andrews she politely explained her dog was a service animal and was legally allowed to enter any public establishment. Her words did not resonate with the employees or the manager she spoke to. In frustration, and I assume anger, she eventually left the store. I share Ms. Andrews outrage. I too have been subjected to blatant discrimination. While I am no longer shocked by people who discriminate against me, I find the experience deeply unsettling. For more about what Ms. Taylor experienced read her blog Cruisn' with Cricket. See her post of June 19, "Finding Lemonade". Link: http://cruisinwithcricket.blogspot.com/
Ms. Andrews story is all over the internet and could go viral. Multiple mainstream news outlets have used her story and she has appeared on a local Salt Lake television news program. A few things have struck me about Ms. Andrews. For example, she is a slender and attractive woman. Her blog has photos of her with her family and guide dog Cricket, a yellow lab. This makes me wonder--is her story of blatant discrimination enhanced by her appearance? Ms. Andrews has also been clear she has no intention of suing Ann Taylor even though she has every right to file a lawsuit--what took place was a serious civil rights violation covered under the ADA. Instead, Ms. Andrews has offered to help educate Ann Taylor employees. In my humble opinion, Ms. Andrews is being far too nice and this too has me wondering. I hesitate to read comments after disability stories--they are routinely horrible and ignorant. However, in this case the comments are 100% supportive. Ms Andrews is the paragon of virtue. She has literally turned the other cheek and has taken the high road. She asked for nothing from Ann Taylor. She will not file a law suit. Her comments exude dignity and grace. As the days have passed Ann Taylor looks worse and worse and Ms. Andrews more dignified. And this too makes me wonder. What if she lashed out in anger? What if she tweeted when she was discriminated against? What if she filed a law suit? What if she appeared at the front of the Ann Taylor with a lawyer and dozens of other blind people? What if she organized a disruptive protest? Somehow I sincerely doubt all the comments would be supportive. And again this has me wondering. Ed Roberts, a founder of the disability rights movement, believed anger was a powerful and useful emotion. Angry people get stuff done when focused on a constructive goal like access. Where is Ms. Andrews anger? One can be angry and polite. One can use anger to force significant social change. But that is not how society perceives people with a disability. Yes, the thinking goes we are angry. Angry we cannot walk, hear or see. We are bitter and angry because our bodies cannot do what other bodies do without thought or appreciation. We are angry over our physical misfortune. This thinking is so wrong it boggles the mind. I find it hard to fathom how any intelligent person thinks this way. Experience tells me otherwise.
I was also struck that every story I read about Ms. Andrews included a diagnosis. All stories in the main stream press noted she had Retinitis Pigmentosa. I fail to understand why this is an any way relevant to the discrimination she experienced at the Ann Taylor store. Did she need to prove she had a legitimate disability? Noting why she is visually impaired utterly misses the point. Laws protecting the civil rights of people that rely on a guide dog date back to the 1960s. I may be wrong on this point and I am sure Stephen Kuusisto could weigh in with a fascinating history. More to the point, the ADA is now over twenty years old. Ms Andrews has every right to expect that her civil rights will not be violated so long after the ADA was passed. Ms. Andrews and I share the same civil rights as those that can walk and see. No news story I read raised this point. No comment focused on the real issue--the violation of Ms. Andrews civil rights.
One last point. I wonder if the public support for Ms. Andrews civil rights is rooted in the knowledge any so called reasonable accommodation for people who cannot see does not incur a significant cost. Everyone knows ramps and elevators are expensive. Worse yet, they are rarely used. So the thinking goes this is an utter waste of money. No one questions why the lifts and elevators are not used. In my experience maybe one in ten bus drivers know how to tie down my wheelchair. In my experience a locked elevator is a useless waste of space. Locked alternative access to buildings is also an utter failure. Call bells are not answered. These violations are socially acceptable. No one ever supports me when these fundamental violations occur. My point is not to distance myself from Ms. Andrews and other people who cannot see. Instead I am pointing out that all violations of civil rights must be met with condemnation. The root cause is identical. Disability rights are civil rights.
Ms. Andrews story is all over the internet and could go viral. Multiple mainstream news outlets have used her story and she has appeared on a local Salt Lake television news program. A few things have struck me about Ms. Andrews. For example, she is a slender and attractive woman. Her blog has photos of her with her family and guide dog Cricket, a yellow lab. This makes me wonder--is her story of blatant discrimination enhanced by her appearance? Ms. Andrews has also been clear she has no intention of suing Ann Taylor even though she has every right to file a lawsuit--what took place was a serious civil rights violation covered under the ADA. Instead, Ms. Andrews has offered to help educate Ann Taylor employees. In my humble opinion, Ms. Andrews is being far too nice and this too has me wondering. I hesitate to read comments after disability stories--they are routinely horrible and ignorant. However, in this case the comments are 100% supportive. Ms Andrews is the paragon of virtue. She has literally turned the other cheek and has taken the high road. She asked for nothing from Ann Taylor. She will not file a law suit. Her comments exude dignity and grace. As the days have passed Ann Taylor looks worse and worse and Ms. Andrews more dignified. And this too makes me wonder. What if she lashed out in anger? What if she tweeted when she was discriminated against? What if she filed a law suit? What if she appeared at the front of the Ann Taylor with a lawyer and dozens of other blind people? What if she organized a disruptive protest? Somehow I sincerely doubt all the comments would be supportive. And again this has me wondering. Ed Roberts, a founder of the disability rights movement, believed anger was a powerful and useful emotion. Angry people get stuff done when focused on a constructive goal like access. Where is Ms. Andrews anger? One can be angry and polite. One can use anger to force significant social change. But that is not how society perceives people with a disability. Yes, the thinking goes we are angry. Angry we cannot walk, hear or see. We are bitter and angry because our bodies cannot do what other bodies do without thought or appreciation. We are angry over our physical misfortune. This thinking is so wrong it boggles the mind. I find it hard to fathom how any intelligent person thinks this way. Experience tells me otherwise.
I was also struck that every story I read about Ms. Andrews included a diagnosis. All stories in the main stream press noted she had Retinitis Pigmentosa. I fail to understand why this is an any way relevant to the discrimination she experienced at the Ann Taylor store. Did she need to prove she had a legitimate disability? Noting why she is visually impaired utterly misses the point. Laws protecting the civil rights of people that rely on a guide dog date back to the 1960s. I may be wrong on this point and I am sure Stephen Kuusisto could weigh in with a fascinating history. More to the point, the ADA is now over twenty years old. Ms Andrews has every right to expect that her civil rights will not be violated so long after the ADA was passed. Ms. Andrews and I share the same civil rights as those that can walk and see. No news story I read raised this point. No comment focused on the real issue--the violation of Ms. Andrews civil rights.
One last point. I wonder if the public support for Ms. Andrews civil rights is rooted in the knowledge any so called reasonable accommodation for people who cannot see does not incur a significant cost. Everyone knows ramps and elevators are expensive. Worse yet, they are rarely used. So the thinking goes this is an utter waste of money. No one questions why the lifts and elevators are not used. In my experience maybe one in ten bus drivers know how to tie down my wheelchair. In my experience a locked elevator is a useless waste of space. Locked alternative access to buildings is also an utter failure. Call bells are not answered. These violations are socially acceptable. No one ever supports me when these fundamental violations occur. My point is not to distance myself from Ms. Andrews and other people who cannot see. Instead I am pointing out that all violations of civil rights must be met with condemnation. The root cause is identical. Disability rights are civil rights.
Tuesday, June 19, 2012
Disability and Health Care: Michael Berube Rules
Over the weekend Michael Berube published an outstanding article, "Our Great Healthcare Denial" in Salon. See http://www.salon.com/writer/michael_berube/. Berube makes many astute observations about healthcare and disability. The most stunning and accurate observation was: "We simply do not think about disability when we talk about health care". This silence affects liberals and conservatives alike. So the issue become why, why do we not talk about disability and healthcare? In a word denial. When I read this I stopped dead in my tracks. Wow, can the controversy over healthcare really be that basic? I do not know but Berube was persuasive. He wrote:
"if you stopped for a moment and shuddered at the thought that you or a loved one might lose your faculties, physical or cognitive, then that’s probably a good indicator of what’s going on here: Individually and collectively, we are in denial. And in a sense we have to be. No one of sound mind and body can wake up every day with a visceral awareness that their soundness of mind and body is a happy accident. None of us wants to start up the car in the knowledge that a random patch of ice can put us or our children into comas, and none of us wants to make our retirement plans on the assumption that we will be too infirm to enjoy it."
Berube goes on to note that when we think of the uninsured the first person that pops into our collective thought is a healthy young man or woman in their 20s, the picture of perfect health. The thinking goes, these people do not need healthcare and hence go without. The logic Berube describes is as follows:
"Americans think of health insurance as a personal calculation, like putting only just so much change in parking meters. You make that gamble, you leave your car too long, you get a ticket, it’s your problem. Or you make that decision, you go without insurance, you get sick, fine, you knew the risks. You pays your money and you takes your chances, and don’t come around here looking for a handout when you lose your shirt. Quite apart from the cruelty of this devil-take-the-hindmost approach to health care, what’s really stunning is how profoundly foolish it is. Sure, people know (or know that they have to pretend not to know) the risks of smoking, or drinking heavily, or eating bacon double cheeseburgers, or riding their motorcycle without a helmet. But most disabilities don’t work that way. They’re not the result of calculations and risk management."
I love the line "most disabilities don't work that way". Amen. Looking back to the first time I got sick I had no clue nor did my parents of how my life would be radically altered. I did nothing wrong. I woke up like any other day, a child interested in Sunday morning cartoons. People do not plan to become paralyzed. People do not plan on becoming disabled in the myriad of ways it is possible for this to happen. It is not supposed to be part of the life process. Well, I am living proof as are many others of the folly that disability is not relevant or part of life. In fact, if you live long enough the odds are very good one will age into a disability, physical or cognitive or perhaps both. To me, Berube is tapping into the American ideal of fierce independence. We are in control of our own destiny. This is utter nonsense to me. None of us are independent entities but rather a complex result of a multitude of social factors. Berube wrote:
"Once you’re born, health care and health insurance is a personal matter, and your encounters with nature’s mishaps are nobody’s business but your own. That’s why you haven’t heard from any American conservatives with the honesty or integrity to admit that the Affordable Care Act, known derisively in some (or all) quarters as “Obamacare,” prohibits insurance companies from denying coverage to disabled children under 19. Or that starting in 2014, the law will prevent insurers from excluding anyone from coverage or charging higher premiums for any pre-existing condition — including a disability."
This is the sort of discussion I would love to engage in. I would like to discuss why the Supreme Court controls the near and long term future of my son's health care. I would like discuss why I am effectively barred from comprehensive insurance until 2014--assuming healthcare reform moves forward (this is no sure thing). I would like to know how insurance companies justify charging me as paralyzed man a higher premium than a man who is bipedal. So much for the notion of being equal. How about we talk about disability? How about having a civil discussion. Instead we get Rick Santorum and Sarah Palin who use their disabled children to forward their political platforms and sway voters with empty emotional rhetoric: "Liberals want to kill our babies". This makes a great headline but has no semblance to the reality people with a disability live. Let's talk about healthcare bills being the leading cause of bankruptcy in America. Let's talk about misleading insurance policies. Let's talk about the people who are forced into nursing homes because of the institutional bias. Let's talk about the politicians we elect who ignore the views of those who voted them into office and instead cater to insurance lobbyists. These subjects are worthy of intense discussion.
"if you stopped for a moment and shuddered at the thought that you or a loved one might lose your faculties, physical or cognitive, then that’s probably a good indicator of what’s going on here: Individually and collectively, we are in denial. And in a sense we have to be. No one of sound mind and body can wake up every day with a visceral awareness that their soundness of mind and body is a happy accident. None of us wants to start up the car in the knowledge that a random patch of ice can put us or our children into comas, and none of us wants to make our retirement plans on the assumption that we will be too infirm to enjoy it."
Berube goes on to note that when we think of the uninsured the first person that pops into our collective thought is a healthy young man or woman in their 20s, the picture of perfect health. The thinking goes, these people do not need healthcare and hence go without. The logic Berube describes is as follows:
"Americans think of health insurance as a personal calculation, like putting only just so much change in parking meters. You make that gamble, you leave your car too long, you get a ticket, it’s your problem. Or you make that decision, you go without insurance, you get sick, fine, you knew the risks. You pays your money and you takes your chances, and don’t come around here looking for a handout when you lose your shirt. Quite apart from the cruelty of this devil-take-the-hindmost approach to health care, what’s really stunning is how profoundly foolish it is. Sure, people know (or know that they have to pretend not to know) the risks of smoking, or drinking heavily, or eating bacon double cheeseburgers, or riding their motorcycle without a helmet. But most disabilities don’t work that way. They’re not the result of calculations and risk management."
I love the line "most disabilities don't work that way". Amen. Looking back to the first time I got sick I had no clue nor did my parents of how my life would be radically altered. I did nothing wrong. I woke up like any other day, a child interested in Sunday morning cartoons. People do not plan to become paralyzed. People do not plan on becoming disabled in the myriad of ways it is possible for this to happen. It is not supposed to be part of the life process. Well, I am living proof as are many others of the folly that disability is not relevant or part of life. In fact, if you live long enough the odds are very good one will age into a disability, physical or cognitive or perhaps both. To me, Berube is tapping into the American ideal of fierce independence. We are in control of our own destiny. This is utter nonsense to me. None of us are independent entities but rather a complex result of a multitude of social factors. Berube wrote:
"Once you’re born, health care and health insurance is a personal matter, and your encounters with nature’s mishaps are nobody’s business but your own. That’s why you haven’t heard from any American conservatives with the honesty or integrity to admit that the Affordable Care Act, known derisively in some (or all) quarters as “Obamacare,” prohibits insurance companies from denying coverage to disabled children under 19. Or that starting in 2014, the law will prevent insurers from excluding anyone from coverage or charging higher premiums for any pre-existing condition — including a disability."
This is the sort of discussion I would love to engage in. I would like to discuss why the Supreme Court controls the near and long term future of my son's health care. I would like discuss why I am effectively barred from comprehensive insurance until 2014--assuming healthcare reform moves forward (this is no sure thing). I would like to know how insurance companies justify charging me as paralyzed man a higher premium than a man who is bipedal. So much for the notion of being equal. How about we talk about disability? How about having a civil discussion. Instead we get Rick Santorum and Sarah Palin who use their disabled children to forward their political platforms and sway voters with empty emotional rhetoric: "Liberals want to kill our babies". This makes a great headline but has no semblance to the reality people with a disability live. Let's talk about healthcare bills being the leading cause of bankruptcy in America. Let's talk about misleading insurance policies. Let's talk about the people who are forced into nursing homes because of the institutional bias. Let's talk about the politicians we elect who ignore the views of those who voted them into office and instead cater to insurance lobbyists. These subjects are worthy of intense discussion.
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