I deeply admire the work of Barb Farlow. I doubt many readers in the United States will know who she is. This is unfortunate as Farlow is all too rare in that she can write with great passion, steely resolve and ruthlessly uses facts to prove her points. In 2005 Farlow gave birth to Annie who had Trisomy 13 a rare condition. Most babies that receive this prenatal diagnosis are not brought to term. After much angst Farlow decided to give birth, a decision that was out of the norm. When her daughter Annie was born Farlow was relieved that her daughter did not have the common brain and heart defects associated with Trisomy. In the Hastings Center Report Farlow wrote that she and her husband wanted to give "Annie the same chances as a child without disabilities". In short, Farlow was realistic and knew Annie's life expectancy would likely be very short--Annie in fact died after just 80 days. As a parent this gives me the chills, it truly shakes me to the core as I cannot imagine losing a child. What shook Farlow extended far beyond dealing with the death of her daughter. After Annie's death Farlow requested Annie's medical records and within hours knew something was profoundly amiss. Without consent her daughter was labeled "not for intubation". This was the first revelation that would lead to many more that undoubtedly changed the direction of Farlow's life. Farlow is now an advocate for families with a child that has Trisomy and is fighting what I would label a good fight. What is she fighting for? For ethicists and physicians to acknowledge that children with Trisomy life should be valued.
In the Journal of Pediatrics Farlow along with Ben Wilfond and Anne Janier wrote "The Experiences of Families with Children with Trisomy 13 and 18 in Social Networks." This article calls into question the belief that Trisomy is a "lethal disorder". I am not questioning the mortality rate, only 6-12% of babies with Trisomy live longer than a year. The American Academy of Pediatrics Neonatal recommends against resuscitation. Children with Trisomy also have profound neurodevelopmental disabilities if they survive. Trisomy is without question a grim condition. However grim the condition is it does not mean children like Farlow's daughter Annie life lacks value. And this is where Farlow and web based social networks can and have played a key role. It is the parents of children with Trisomy that have called into question the belief Trisomy is "lethal". According to the article in Pediatrics parents were told Trisomy was incompatible with life. A child with this condition would suffer, live a meaningless life, ruin a marriage or harm a family. The message here is about as subtle as a brick thrown through a plate glass window--let your child die.
While I am not surprised by the article findings I hope it is a real eye opener for many physicians. In spite of profound disabilities and a short life virtually all parents reported a positive family life. Parents believed their children with Trisomy had a good quality of life. By itself this is critically important. In typical academic prose the authors conclude:
Our results suggest that there are many areas in which the parental experience of having a child with T13-18 differs profoundly from the �conventional� view within the medical community. Recently, many articles have been published pertaining to the ethical and medical management of children with T13-18. The quality of life of the child living with T13-18 is often described as a justification for not providing interventions for these diagnoses.
Yikes does this sound familiar to me. Quality of life assessments are incredibly subjective. In fact I have spent the last 30 years railing against the beliefs of others who deem my quality of life inherently inferior simply because I am paralyzed. If we as a society permit others to judge people with a disability as inferior abuse will remain rampant. The ADA will continue to be ignored. Thus when I read the article in question I immediately thought of a recent article in another medical journal Lancet. The WHO has reported that children with disabilities are four times more likely to experience violence when compared to typical nondisabled children. In the words of Etienne Krug, Director of WHO's Department of Violence and Injury Prevention and Disability "children with disabilities are disproportionately vulnerable to violence and their needs have been neglected for far too long." Why are children with disabilities abused? Risk factors include stigma, discrimination and ignorance about disability all of which are social problems.
One last point: I got to meet Barb Farlow earlier this month and went to the Hockey Hall of Fame with her two youngest sons and her eldest son. Spending the day with the Farlow family brought back a flood of warm memories--I am the product of a large Catholic family. I had great fun the day we met and was delighted to meet another person dedicated to protecting and advocating for the rights of people with a disability. We may be few in numbers but our resolve is strong.
$pecial Education
Wednesday, July 11, 2012
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.
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.
Assisted Suicide: I do Have Reasons to Be Afraid
Tuesday, July 10, 2012
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?
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