In 2006 and 2007 I published two articles about the Ashley Treatment in Counter Punch. The articles generated a tremendous amount of email--as in hundreds upon hundreds of replies. Most email I received was positive but a few were shockingly mean spirited and bordered on hate mail. What I learned in the days after I wrote the articles in Counter Punch about the Ashley Treatment and growth attenuation was that people had a violent reaction to the subject. People were either opposed to what had been done to Ashley, that is they thought the child was mutilated by doctors, or believed it was perfectly logical and reasonable medical treatment. This juxtaposition of extreme views has always intrigued me and I have followed the Ashley Treatment as it has evolved sine 2006 when the story exploded in the news. I have tried to understand both sides of the debate, and there are only two sides--those for and those opposed to the treatment. No middle ground exists.
I will acknowledge that I have consistently failed to understand why doctors and some parents of children with profound physical and cognitive deficits are drawn to what I consider an extreme medical solution to a problem that is largely social in nature. Between 2006 and today, many articles have appeared in medical journals about the Ashley Treatment. Doctors no longer refer the "Ashley Treatment" and instead discuss growth attenuation. This change is more than a matter of semantics and in my estimation is an attempt to avoid the harshest critiques outside of medicine. I have tried to remain objective but nothing I have read has led me to believe that growth attenuation is a viable treatment option. Indeed, I remain convinced that growth attenuation is ethically questionable at best. Yet doctors, Douglas Diekema among others, seem driven to establish growth attenuation as a viable treatment option. I do not understand this forceful drive and was disturbed to read an article in Pediatrics by Diekema, David Allen, Michael Kappy and Norman Fost entitled "Growth Attenuation Therapy: Principals for Practice" (June 2009; 123:1556-1561). This paper seeks to establish the principals for growth attenuation in practice, that is provide the scientific rationale for the effectiveness of growth attenuation. The authors identify seven such principals for growth attenuation treatment:
1. Nonambulatory children with profound cognitive disabilities.
2. Growth attenuation should be given the equal respect with growth promoting therapy.
3. Families caring for a child with cognitive disabilities should be informed about growth attenuation in early childhood.
4. Informed consent should give the risk and benefits of growth attenuation in both the short and long term.
5. Potential benefits of growth attenuation adds a new dimension for precocious puberty for children with a profound cognitive disability.
6. Ethics committee review before growth attenuation treatment.
7. Growth attenuation should be part of a research protocol.
I do not in any way question the motives of the doctors who promote growth attenuation. I have no doubt they are trying to do their best for children and their families. I am equally sure that doctors regularly encounter ethical dilemmas that have no obvious or clear cut answer. I can also readily understand men and women of science who have dedicated their lives to helping people actively seek to fix medical problems both physical and cognitive. Yet it seems to me that those that are promoting growth attenuation are ignoring or minimizing the history of this treatment and its implications. Growth attenuation is a both a medical and cultural response to developmentally fragile children. Like it or not, once a treatment such as growth attenuation exists its very existence provides a reason to use it. The rationale for why it is or is not utilized will change. In this regard there are profound flaws in the paper that undermine the use of growth attenuation. Among them are the following:
1. Doctors have failed to provide an adequate definition of what a cognitive disability is. The authors of the paper acknowledge this fact and in terms of growth attenuation "define profound cognitive disability as including nonambulation and requiring assistance with nearly every aspect of daily living, remaining completely dependent on others for even basic care even after careful attempts at training, and the inability to understand or express oneself in nuance ways". This is a vague definition and I can readily think of multiple conditions that fit under this rubric. Thus I cannot help but conclude a specific population or type of child is being selected and considered for growth attenuation while all others are automatically dismissed. This leads me to ask why is it ethically acceptable to attenuate the growth of children with a cognitive disability but no other human beings? What does this mean culturally? To me, this is a strong indication that in spite of what the law may state people with disabilities are not valued. Any and all means must be utilized to "correct" their deficits. This is an extreme medical solution to an issue that is partly medical but largely social. By social I mean the utter failure of our culture to acknowledge the civil rights of people with disabilities.
2. Doctors assume the permanence of a cognitive deficit is life long before growth attenuation is permitted. That is they are making a "reasonable assumption" no change will take place. This is a significant leap in logic. Doctors are human and mistakes are made every day in every hospital in the nation. Of course we do our best to minimize our errors but they are simply inevitable. This leads to me wonder what happens if doctors make a mistake diagnosing a child with a seemingly profound and life long cognitive deficit? What will they say to this person when they are an adult? I realize the odds of this happening are remote but it is possible. Many of us know people who have been misdiagnosed, told they were terminally ill only to discover this was not the case.
3. The paper maintains that selecting children to attenuate their growth is a "separate issue". I think not. If seven principals for practice can be written out in detail surely a central component must be determining exactly who can and cannot be subjected to growth attenuation treatment. The selection process is a core issue that is brushed aside. As one blogger has noted "profound cognitive disability is only an alibi, a magic they use to turn something that would be regarded as unethical if applied to physically disabled children without cognitive disability into something that looks OK when it is applied to children with a cognitive disability".
4. The authors maintain that doing nothing does not lead to the best outcome. The authors have a point here and provide a child with scoleosis as an example. In this regard, doing nothing for a child with scoleosis is indeed not advisable--and I speak from experience having had surgery long ago. However, I fail to see how children with a profound cognitive disability can be harmed by doing nothing. And is this not what doctors are in essence supposed to do--"do no harm". Surely treatment options for children and adults with profound cognitive disabilities exist that will render them medically stable.
5. To date, growth attenuation is limited to treating female children. There is a half a century track record of treating female children with hormones and the debate about the safety of this treatment is far from resolved. Medical attempts to alter the height of children remains controversial and has a checkered past. For a critical study see Normal at Any Cost. Although written by non academics the text provides a cautionary tale and contains a wealth of references.
6. The authors believe that adequate legal protections are in place to protect children that will be considered for growth attenuation. This is subject to debate. These legal protections did not protect Ashley who was unlawfully sterilized and added safe guards needed to be established. Assuming legal safe guards exist is simply not true and ignores a long history of violating the sanctity of disabled bodies in American history. I need not review the history of the Eugenics Movement here and will simply point out that tens of thousands of people were sterilized against their will. Ignoring this past as unpleasant as it may be sets a dangerous president.
None of the above flaws broach the subject of whether growth attenuation solves the quality of life issues it is designed to eliminate. Here I refer to the reduction in the ease and problems associated with caring for a person with a profound cognitive disability. This is not what I think medicine should be concerned with--social issues that have non medical solutions. Those solutions, providing adequate resources to families caring for children with profound cognitive disabilities, would exist if and when we value the lives of those individuals. Medicine and growth attenuation can change the human body but not the inherent cultural problem we are confronted with.
Wednesday, July 15, 2009
Sunday, July 12, 2009
Assisted Suicide: A Necessary but Depressing Debate
In the past I have posted a number of entries on assisted suicide. The well funded, organized, and influential groups that advocate for assisted suicide laws in this country and abroad have enjoyed great success in the last few years. I find their success deeply disturbing for many reasons foremost among them is the logic that provides the theoretical and practical basis for assisted suicide laws deeply flawed. On the surface, the laws that advocate for assisted suicide make sense. Surely no one wants to see a loved on, or any human for that matter, needlessly suffer when death is inevitable. The fact is we humans are living longer thanks to modern medicine and as a result horror stories about the end of life abound. However, when the emotional angst of the assisted suicide argument is removed and one takes a long hard look at end of life issues two facts emerge: first, assisted suicide laws are not necessary and, second, the people who take advantage of assisted suicide laws or the "services" of groups such as Dignitas are not terminally ill.
I have no doubt advocates for assisted suicide completely disagree with my assessment. The debate between those for and those opposed to assisted suicide is not resolved, their disagreements long long standing, and I see no reason to believe common ground can be found. This is unfortunate because too many people needlessly suffer before they die, a situation that must be resolved. But killing people, what assisted suicide seeks to do, is not the answer. Thus it is imperative that the two sides of this debate seek common ground and this is where I think scholars in disability studies and activists in disability rights have much to contribute. Yet such activists and scholars within the field of disability are hopelessly divided, a thought that came to me after reading two fascinating and pointed commentaries by Stephen Drake of Not Dead Yet (see Not Dead Yet blog for Wednesday July 8 entitled "Tom Shakespeare Makes a Less Than Honest Case for Assisted Suicide") and Tom Shakespeare, a British disability studies scholar (See "A Chance for Dignity and Dying", Guardian July 7).
Drake and Shakespeare respective views are radically different. Readers of this blog will likely know Drake's work via Not Dead Yet. Drake is along time and influential advocate against assisted suicide. I consider his blog Not Dead Yet to be mandatory reading for anyone interested in the subject. My views are very similar to Drake and I have the utmost respect not only for his advocacy but his writing. I have a similar respect for Shakespeare but often find myself at odds with his views--at least since 2000 when he made a controversial break with disability scholars in Britain that culminated in his highly polemical 2006 book Disability Rights and Wrongs. Between 2000 and the present Shakespeare has come out in favor of legalizing suicide for terminally ill people. Shakespeare has also been extremely critical if not disrespectful of disability advocates and scholars that oppose assisted suicide. Thus I consider Shakespeare to be the "bad boy" of disability rights scholarship. He is without question a contrarian, one who is not only very smart but seems to take delight in holding views that are at odds with the majority. Shakespeare's views on assisted suicide and the social model of disability are two examples. While I do not agree with Shakespeare's views on assisted suicide he must be taken very seriously. This is why I was delighted to see Drake dissect Shakespeare's editorial in the Guardian in which he advocated as a disability rights scholar for assisted suicide. Like Drake, I found Shakespeare's position and arguments weak and misleading. I also agree with Drake that Shakespeare is simply wrong in advocating for effective assisted suicide legislation in Britain. However, I think Drake could temper his critique because writing that Shakespeare's editorial relies on "easy platitudes, fuzzy assertions and some pretty gross misrepresentations of euthanasia laws" only heightens an existing divide between the two men. In my estimation Drake is correct in his assertion about Shakespeare's editorial in the Guardian but neglects to point readers in the direction to Shakespeare's aforementioned book, especially chapter 8 on "Autonomy and the end of life". Instead of going for the jugular in his pointed critique of Shakespeare I wish Drake had stuck to the facts--they are not only in his favor but on the side of any reasoned argument against assisted. For instance, Shakespeare is clear on the fact he favors assisted suicide for only those who are terminally ill. Yet Shakespeare does not in any way define who is and is not terminally ill. This is not a matter of minor debate but a central issue that gets to the core of assisted suicide at a practical and theoretical level.
Both Shakespeare and Drake know all too well that people who are not terminally ill have had assisted suicides. The case of Daniel James that I have written about in the past is but one of many examples. James death was heart wrenching and highlights why disability rights scholars and activists need to play an active role in the discussion about assisted suicide. Like it or not, people with disabilities are not equal, face overwhelming social stigma, and have a great deal of trouble accessing basic and even substandard health care in this country and abroad. The consequences of these social inequities are profound and place people with disabilities at a high risk. A high risk for what? I can readily envision a world in which it would be all too easy to classify a host of medical conditions as "terminal". People with ALS, MS, SCI, and a host of other debilitating but not life threatening conditions could be deemed terminally ill. Why think of the savings! No wheelchairs would need to be manufactured nor would ramps or elevators be required. If you think I am kidding, you are very wrong. In my lifetime I have witnessed profound changes in the way people with SCI are treated. When I was paralyzed 30 years ago people with high cervical injuries, think Christopher Reeve, died. They did not die from their injury but the belief no person with a high level cervical injury could ever have a good quality of life. Hence such people died of neglect and doctors let "nature take its course". This is both misguided, dangerous and has significant implications for all those that are disenfranchised--the elderly, disabled, chronically ill among many others.
Shakespeare concludes his Guardian editorial by noting that all people, those with and without a disability, should have control over their lives as well as how their life ends. He also pointedly states "being disabled in itself is no reason to die". I do not disagree with these statements but know that in theory Shakespeare may be correct but the reality as I know it is very different. We do not all get to choose the way we die nor are we born equal. We also all have limits, social and economic, that dictate where and how we live. This has an impact on how we access health care and how we end our life. I for one fear old age. I do not fear aging and infirmity. I know all too much about the limits of the human body. What I fear is the lack of social respect and value my life will have as I age. I wonder will the fact my body is not easy to care and labor intensive hasten the end of my life? Will I die of a giant bed sore because the people charged with my care do not have the time or will to regularly move my body if I am no longer capable of doing this? Will my inevitable death be perceived as a release from being paralyzed and hence receive substandard care? These fears are very real and shed light on a social problem that people with disabilities must be a part of in resolving. It is why we must be part of the debate on assisted suicide--we have unique insights that others do not. We are accustom to defending our rights, that is our very right to exist and escape what Harriett McBryde Johnson once described as the "disability gulag". All our voices need to be heard--people like me via my blog, Drake via Not Dead Yet and Shakespeare in spite of the fact I do not agree with his views.
I have no doubt advocates for assisted suicide completely disagree with my assessment. The debate between those for and those opposed to assisted suicide is not resolved, their disagreements long long standing, and I see no reason to believe common ground can be found. This is unfortunate because too many people needlessly suffer before they die, a situation that must be resolved. But killing people, what assisted suicide seeks to do, is not the answer. Thus it is imperative that the two sides of this debate seek common ground and this is where I think scholars in disability studies and activists in disability rights have much to contribute. Yet such activists and scholars within the field of disability are hopelessly divided, a thought that came to me after reading two fascinating and pointed commentaries by Stephen Drake of Not Dead Yet (see Not Dead Yet blog for Wednesday July 8 entitled "Tom Shakespeare Makes a Less Than Honest Case for Assisted Suicide") and Tom Shakespeare, a British disability studies scholar (See "A Chance for Dignity and Dying", Guardian July 7).
Drake and Shakespeare respective views are radically different. Readers of this blog will likely know Drake's work via Not Dead Yet. Drake is along time and influential advocate against assisted suicide. I consider his blog Not Dead Yet to be mandatory reading for anyone interested in the subject. My views are very similar to Drake and I have the utmost respect not only for his advocacy but his writing. I have a similar respect for Shakespeare but often find myself at odds with his views--at least since 2000 when he made a controversial break with disability scholars in Britain that culminated in his highly polemical 2006 book Disability Rights and Wrongs. Between 2000 and the present Shakespeare has come out in favor of legalizing suicide for terminally ill people. Shakespeare has also been extremely critical if not disrespectful of disability advocates and scholars that oppose assisted suicide. Thus I consider Shakespeare to be the "bad boy" of disability rights scholarship. He is without question a contrarian, one who is not only very smart but seems to take delight in holding views that are at odds with the majority. Shakespeare's views on assisted suicide and the social model of disability are two examples. While I do not agree with Shakespeare's views on assisted suicide he must be taken very seriously. This is why I was delighted to see Drake dissect Shakespeare's editorial in the Guardian in which he advocated as a disability rights scholar for assisted suicide. Like Drake, I found Shakespeare's position and arguments weak and misleading. I also agree with Drake that Shakespeare is simply wrong in advocating for effective assisted suicide legislation in Britain. However, I think Drake could temper his critique because writing that Shakespeare's editorial relies on "easy platitudes, fuzzy assertions and some pretty gross misrepresentations of euthanasia laws" only heightens an existing divide between the two men. In my estimation Drake is correct in his assertion about Shakespeare's editorial in the Guardian but neglects to point readers in the direction to Shakespeare's aforementioned book, especially chapter 8 on "Autonomy and the end of life". Instead of going for the jugular in his pointed critique of Shakespeare I wish Drake had stuck to the facts--they are not only in his favor but on the side of any reasoned argument against assisted. For instance, Shakespeare is clear on the fact he favors assisted suicide for only those who are terminally ill. Yet Shakespeare does not in any way define who is and is not terminally ill. This is not a matter of minor debate but a central issue that gets to the core of assisted suicide at a practical and theoretical level.
Both Shakespeare and Drake know all too well that people who are not terminally ill have had assisted suicides. The case of Daniel James that I have written about in the past is but one of many examples. James death was heart wrenching and highlights why disability rights scholars and activists need to play an active role in the discussion about assisted suicide. Like it or not, people with disabilities are not equal, face overwhelming social stigma, and have a great deal of trouble accessing basic and even substandard health care in this country and abroad. The consequences of these social inequities are profound and place people with disabilities at a high risk. A high risk for what? I can readily envision a world in which it would be all too easy to classify a host of medical conditions as "terminal". People with ALS, MS, SCI, and a host of other debilitating but not life threatening conditions could be deemed terminally ill. Why think of the savings! No wheelchairs would need to be manufactured nor would ramps or elevators be required. If you think I am kidding, you are very wrong. In my lifetime I have witnessed profound changes in the way people with SCI are treated. When I was paralyzed 30 years ago people with high cervical injuries, think Christopher Reeve, died. They did not die from their injury but the belief no person with a high level cervical injury could ever have a good quality of life. Hence such people died of neglect and doctors let "nature take its course". This is both misguided, dangerous and has significant implications for all those that are disenfranchised--the elderly, disabled, chronically ill among many others.
Shakespeare concludes his Guardian editorial by noting that all people, those with and without a disability, should have control over their lives as well as how their life ends. He also pointedly states "being disabled in itself is no reason to die". I do not disagree with these statements but know that in theory Shakespeare may be correct but the reality as I know it is very different. We do not all get to choose the way we die nor are we born equal. We also all have limits, social and economic, that dictate where and how we live. This has an impact on how we access health care and how we end our life. I for one fear old age. I do not fear aging and infirmity. I know all too much about the limits of the human body. What I fear is the lack of social respect and value my life will have as I age. I wonder will the fact my body is not easy to care and labor intensive hasten the end of my life? Will I die of a giant bed sore because the people charged with my care do not have the time or will to regularly move my body if I am no longer capable of doing this? Will my inevitable death be perceived as a release from being paralyzed and hence receive substandard care? These fears are very real and shed light on a social problem that people with disabilities must be a part of in resolving. It is why we must be part of the debate on assisted suicide--we have unique insights that others do not. We are accustom to defending our rights, that is our very right to exist and escape what Harriett McBryde Johnson once described as the "disability gulag". All our voices need to be heard--people like me via my blog, Drake via Not Dead Yet and Shakespeare in spite of the fact I do not agree with his views.
Wednesday, July 8, 2009
United Nations Convention on Disabilities
In December 2006 the United Nations General Assembly adopted the United Nations Convention on the Rights of Persons with Disabilities, UN-CRPD. When it was signed the UN Secretary-General, Kofi Annan, characterized the the CRPD as "the first human rights treaty to be adopted in the twenty-first century". Since it was adopted, 139 countries have signed the Convention and 58 more have ratified it. The United States, the supposed "world leader" for people with disabilities has not signed the Convention. This is puzzling to me. Every international and domestic disability rights group I am aware of supports and expects our country to sign the CRPD. I do not pay attention to international conventions nor do I keep up with what the UN is doing. Perhaps I am too narrow minded or skeptical but I fail to see what international treaties and conventions do to help people--that is me, you, and others living in nations around the world. I fail to see how such wonderful sentiments and ideas translate into the real world. In short, I lack an international vision. Regardless, I am simply at a loss as to why the United States does not sign CRPD.
If the United States government truly considers itself to be the leader in disability rights I think we, Obama that is, must sign the CRPD. Readers of this blog will know I care deeply about the social inequities associated with disability in this country. But based on my reading the situation in Third World countries is nothing short of grim. In many parts of the world a disability is a death sentence. If you doubt me read Norm Charlton's Nothing About Us Without Us. Although somewhat dated, this text demonstrates that in many ways disabled Americans are lucky--though I must confess I never look at myself in this light. So why has the United States Government, Big Brother if you will, not signed the CRPD? One could take a hard look at this and conclude as Stephen Kuusisto has in his blog Planet of the Blind and speculate that: "the United States is reluctant to sign a world wide treaty on human rights for people with disabilities because our military activities (remember "Shock and Awe"?) create civilian populations with disabilities. We wouldn't want to be responsible for this, would we?" Harsh words for sure, one's that made me think and become depressed about the previous Bush Administration and its war on terrorism. A more kind interpretation may be that the ADA is legally incompatible with the CRPD. No such luck or at least that is what lawyers have written. Perhaps the CRPD is redundant? We have the ADA, a law that will turn 19 years on my Independence Day July 26. This explanation also fails as we as a nation have largely ignored the ADA and the average American has no clue the law has anything to do with civil rights. So why has the United States not signed the CRPD? In my estimation it is because we pay lip service to the civil rights of people with disabilities. That is what we say and what we do are two radically different things. Sure, all will state that people with a disability should be included and access should exist everywhere. Yet when it comes to a vote on these things such as an elevator, a wheelchair lift on a bus, or the construction of a group home I see nothing but firm resistance and cost cutting. This is not a new phenomenon, it has been present since the day the ADA was signed into law. We put a value on access and inclusion and it is not a priority--it never was. Thus I think we have not signed the CRPD because there is no commitment to real inclusion and equal access in this country. If we do not want to be inclusive in this country can we expect or even hope others nations be held to the same standard? In a word, no. The refusal of the American Government to sign the CRPD is more than politics, it is a reflection of national failure to support the civil rights of people in this country. This failure can be found in every ADA violation I encounter where ever I go. And believe me I do not need to go far. Such gross violations abound and are so numerous that I could spend the rest of my life filing ADA complaints, it would be a full time job for me and hundreds if not thousands of others. Worse yet, I have come to accept these violations as the norm and rarely complain about them anymore. Where does one access blame? Frankly, I do not care. What I do care about is social change and for that to happen people with and without a disability need to come together as equals. When that happens access for all will be taken seriously.
If the United States government truly considers itself to be the leader in disability rights I think we, Obama that is, must sign the CRPD. Readers of this blog will know I care deeply about the social inequities associated with disability in this country. But based on my reading the situation in Third World countries is nothing short of grim. In many parts of the world a disability is a death sentence. If you doubt me read Norm Charlton's Nothing About Us Without Us. Although somewhat dated, this text demonstrates that in many ways disabled Americans are lucky--though I must confess I never look at myself in this light. So why has the United States Government, Big Brother if you will, not signed the CRPD? One could take a hard look at this and conclude as Stephen Kuusisto has in his blog Planet of the Blind and speculate that: "the United States is reluctant to sign a world wide treaty on human rights for people with disabilities because our military activities (remember "Shock and Awe"?) create civilian populations with disabilities. We wouldn't want to be responsible for this, would we?" Harsh words for sure, one's that made me think and become depressed about the previous Bush Administration and its war on terrorism. A more kind interpretation may be that the ADA is legally incompatible with the CRPD. No such luck or at least that is what lawyers have written. Perhaps the CRPD is redundant? We have the ADA, a law that will turn 19 years on my Independence Day July 26. This explanation also fails as we as a nation have largely ignored the ADA and the average American has no clue the law has anything to do with civil rights. So why has the United States not signed the CRPD? In my estimation it is because we pay lip service to the civil rights of people with disabilities. That is what we say and what we do are two radically different things. Sure, all will state that people with a disability should be included and access should exist everywhere. Yet when it comes to a vote on these things such as an elevator, a wheelchair lift on a bus, or the construction of a group home I see nothing but firm resistance and cost cutting. This is not a new phenomenon, it has been present since the day the ADA was signed into law. We put a value on access and inclusion and it is not a priority--it never was. Thus I think we have not signed the CRPD because there is no commitment to real inclusion and equal access in this country. If we do not want to be inclusive in this country can we expect or even hope others nations be held to the same standard? In a word, no. The refusal of the American Government to sign the CRPD is more than politics, it is a reflection of national failure to support the civil rights of people in this country. This failure can be found in every ADA violation I encounter where ever I go. And believe me I do not need to go far. Such gross violations abound and are so numerous that I could spend the rest of my life filing ADA complaints, it would be a full time job for me and hundreds if not thousands of others. Worse yet, I have come to accept these violations as the norm and rarely complain about them anymore. Where does one access blame? Frankly, I do not care. What I do care about is social change and for that to happen people with and without a disability need to come together as equals. When that happens access for all will be taken seriously.
Monday, July 6, 2009
Why IDEA Appeals
I hope one and all enjoyed the July 4th weekend. The festivities associated with July 4th do not appeal to me. The food and beer we consume in mass quantities, over the top nationalism, endless patriotic songs, and worse yet, bad speeches do not appeal to me and by July 5 I am a cranky man. This weekend was no different but I did come across one person that was not only eloquent but reminded me why IDEA is so important thereby building on my last post about education.
In contrast to my attitude toward July 4, Jennifer Laviano at Special Ed Justice loves the holiday because she considers herself a real patriot. Her patriotism is of the pure sort that I can relate--based on a knowledge of history and serious attention paid to the Constitution. In "Patriotism and Special Education" Laviano wrote the following:
"Something about the way the IDEA envisions a just and equitable educational system as it regards kids with special education needs speaks to me as an American. It really is about all of the things that I love about the founding principles of the USA: justice, fairness, individual rights, recognizing that with power comes responsibility. Protecting the most vulnerable among us."
There is no doubt that IDEA and others laws designed to protect the civil rights of Americans with disabilities are far from perfect. Far too many such laws are hopelessly compromised pieces of legislation that cause and solve problems at the same time. But what I love about Laviano's words are that the intent, the aim of the legislation, reveals the best part of our American character. What I hope to see some day is that the intent will be matched by a desire to enforce such legislation. If I see this in my lifetime I will die a happy man.
In contrast to my attitude toward July 4, Jennifer Laviano at Special Ed Justice loves the holiday because she considers herself a real patriot. Her patriotism is of the pure sort that I can relate--based on a knowledge of history and serious attention paid to the Constitution. In "Patriotism and Special Education" Laviano wrote the following:
"Something about the way the IDEA envisions a just and equitable educational system as it regards kids with special education needs speaks to me as an American. It really is about all of the things that I love about the founding principles of the USA: justice, fairness, individual rights, recognizing that with power comes responsibility. Protecting the most vulnerable among us."
There is no doubt that IDEA and others laws designed to protect the civil rights of Americans with disabilities are far from perfect. Far too many such laws are hopelessly compromised pieces of legislation that cause and solve problems at the same time. But what I love about Laviano's words are that the intent, the aim of the legislation, reveals the best part of our American character. What I hope to see some day is that the intent will be matched by a desire to enforce such legislation. If I see this in my lifetime I will die a happy man.
Thursday, July 2, 2009
Education: The Key to Equality
I am often asked by professionals that I meet the first time how I became successful. What the are really asking is not about success in the conventional sense of the term. The question really is why am I capable of being ordinary, that is I earned a PhD, got married (divorced too), fathered a child, own a home, am active in the community etc. I do not like this sort of question as it presumes I am unusual. Sadly, this is may be true and for the last week I have been thinking about why it is so hard for people with a disability to lead a "normal life". To me, the primary obstacle people with a disability in the broadest sense of the term encounter is access to education. Education is the key to success as an adult. One's intellectual ability is not relevant. Education is all about understanding the world to the best of your ability and getting the most out of the abilities you possess. Thus there is no difference between someone like myself, a highly educated paralyzed white man and a person with profound physical and cognitive deficits that will be dependent upon care givers. We each have something to offer the world and our families.
My concern with education has been on my mind because of a recent and important U.S. Supreme Court decision. Here I refer to Forest Grove School District v. T.A. In a 6-3 ruling the court ruled that a child identified only as T.A. parent were entitled to be reimbursed for the cost of sending their child to a private school. The private residential academy cost $5,200 a month and the parents sought $65,000 in tuition reimbursement. The Forest Grove School District refused to pay this because they did not think a special education was required for the child in question. The case wound its way to the Supreme Court where the court firmly established that when public schools fail to provide an appropriate education and required services parents can seek to be reimbursed for the cost of private education. In short, the court ruled that public schools cannot seek to escape their legal responsibility to educate all children. In ruling in favor of the parents the court emphasized that the Individuals with Disabilities Act (IDEA) required public schools to provide a suitable educational experience. Justice John Paul Stevens wrote that "We conclude that IDEA authorizes reimbursement for the cost of private special-education when a school district fails to provide a free, appropriate public education".
Let me repeat those last few words--"a free and appropriate education". Is this not why we Americans pay school tax? It is why I live in my town where the public school is supposedly outstanding as are most schools in the wealthy suburbs of New York City. Why then were the parents of a child with a disability forced into court and push their case all the way to the Supreme Court? To me, the answer is simple: the education of children with profound and multiple disabilities is perceived to be an onerous burden. School districts begrudgingly accept the fact they must educate students with disabilities. Given the number of children diagnosed with learning disabilities public schools have no choice. But this does not mean public schools want to spend on children with learning disabilities. How do I know this? At every school board meeting I attend I hear complaints about the cost of "special education". Why do we need to spend so much on special education teachers, aides for students with disabilities, or worse yet, making the school accessible to students with a physical disability? I try to be polite when I hear how angry parents are when "normal" and "gifted children" are "suffering" as a result of the money spent on "special needs kids". I really do try to keep my mouth shut as I hope my presence as a person with a disability will remind others that so called "special needs children" become adults and, like me, tax payers. My presence however is not nearly enough. I point out that a public education is the right of every child living in the district. In addition the district is legally required to educate all children, those with and without a disability. When I state this I feel better but know my words are not well received. I also know when budget decisions are made the first cuts made slash special education. Sadly, special education, a term I truly hate, is not valued. Indeed, it is the least valued part of the budget. Parents will happily spend millions of dollars on turf fields, a new gym and locker rooms, and lavish money on athletes but do not ask these same people to spend a dime on a wheelchair lift or additional aides for special needs kids.
It is not just parents that do not want to educate children with disabilities. School administrators nationwide have blasted the Supreme Court decision. School administrators fear parents will opt to send their special needs children to expensive private schools thereby costing districts millions of dollars. Well, parents will not choose this option if school provide an appropriate education for so called special needs children. If a child with a disability, physical or cognitive, is valued and welcomed, parents would have no reason to send their child to a private school. School administrators are not alone in their critique of the Supreme Court decision. News papers such as the New York Times, Wall Street Journal, and a myriad of local papers have been equally critical. For instance the Desert News has stated "Utah can ill-afford siphoning off resources from its already lean public school resources". Meanwhile the New York Times noted the decision will "undoubtedly add to public schools financial woes". Since I made reference to money spent on athletics let me end with this comparison: there is no doubt great value is placed on physical education and sports at the public school level. Many parents spend thousands of dollars a year on sports without complaint. This, of course, is their right and I am not in any way opposed to athletics. I merely want to point out that public school are obligated to educate all children--it is their primary responsibility. In my estimation we do a particularly poor job educating those students with learning and physical disabilities because we as a society do not value the expenditure of time and resources. Thus every time I go to my son's public school I do not admire the millions spent on expensive turf fields. Instead I think the children who play on those lovely fields are treated with deference and respect. Good for them but I sure wish children with disabilities enjoyed the same social stature and resources.
My concern with education has been on my mind because of a recent and important U.S. Supreme Court decision. Here I refer to Forest Grove School District v. T.A. In a 6-3 ruling the court ruled that a child identified only as T.A. parent were entitled to be reimbursed for the cost of sending their child to a private school. The private residential academy cost $5,200 a month and the parents sought $65,000 in tuition reimbursement. The Forest Grove School District refused to pay this because they did not think a special education was required for the child in question. The case wound its way to the Supreme Court where the court firmly established that when public schools fail to provide an appropriate education and required services parents can seek to be reimbursed for the cost of private education. In short, the court ruled that public schools cannot seek to escape their legal responsibility to educate all children. In ruling in favor of the parents the court emphasized that the Individuals with Disabilities Act (IDEA) required public schools to provide a suitable educational experience. Justice John Paul Stevens wrote that "We conclude that IDEA authorizes reimbursement for the cost of private special-education when a school district fails to provide a free, appropriate public education".
Let me repeat those last few words--"a free and appropriate education". Is this not why we Americans pay school tax? It is why I live in my town where the public school is supposedly outstanding as are most schools in the wealthy suburbs of New York City. Why then were the parents of a child with a disability forced into court and push their case all the way to the Supreme Court? To me, the answer is simple: the education of children with profound and multiple disabilities is perceived to be an onerous burden. School districts begrudgingly accept the fact they must educate students with disabilities. Given the number of children diagnosed with learning disabilities public schools have no choice. But this does not mean public schools want to spend on children with learning disabilities. How do I know this? At every school board meeting I attend I hear complaints about the cost of "special education". Why do we need to spend so much on special education teachers, aides for students with disabilities, or worse yet, making the school accessible to students with a physical disability? I try to be polite when I hear how angry parents are when "normal" and "gifted children" are "suffering" as a result of the money spent on "special needs kids". I really do try to keep my mouth shut as I hope my presence as a person with a disability will remind others that so called "special needs children" become adults and, like me, tax payers. My presence however is not nearly enough. I point out that a public education is the right of every child living in the district. In addition the district is legally required to educate all children, those with and without a disability. When I state this I feel better but know my words are not well received. I also know when budget decisions are made the first cuts made slash special education. Sadly, special education, a term I truly hate, is not valued. Indeed, it is the least valued part of the budget. Parents will happily spend millions of dollars on turf fields, a new gym and locker rooms, and lavish money on athletes but do not ask these same people to spend a dime on a wheelchair lift or additional aides for special needs kids.
It is not just parents that do not want to educate children with disabilities. School administrators nationwide have blasted the Supreme Court decision. School administrators fear parents will opt to send their special needs children to expensive private schools thereby costing districts millions of dollars. Well, parents will not choose this option if school provide an appropriate education for so called special needs children. If a child with a disability, physical or cognitive, is valued and welcomed, parents would have no reason to send their child to a private school. School administrators are not alone in their critique of the Supreme Court decision. News papers such as the New York Times, Wall Street Journal, and a myriad of local papers have been equally critical. For instance the Desert News has stated "Utah can ill-afford siphoning off resources from its already lean public school resources". Meanwhile the New York Times noted the decision will "undoubtedly add to public schools financial woes". Since I made reference to money spent on athletics let me end with this comparison: there is no doubt great value is placed on physical education and sports at the public school level. Many parents spend thousands of dollars a year on sports without complaint. This, of course, is their right and I am not in any way opposed to athletics. I merely want to point out that public school are obligated to educate all children--it is their primary responsibility. In my estimation we do a particularly poor job educating those students with learning and physical disabilities because we as a society do not value the expenditure of time and resources. Thus every time I go to my son's public school I do not admire the millions spent on expensive turf fields. Instead I think the children who play on those lovely fields are treated with deference and respect. Good for them but I sure wish children with disabilities enjoyed the same social stature and resources.
Wednesday, July 1, 2009
The Politics of Civil Rights: Disabled and Gay People
According to a New York Time/CBS poll 57% of people under 40 support same sex marriage. To me, this represents great social progress. The majority of younger Americans recognize the rights of gay people. I asked my teen age son about this and what he had been taught about gay rights in school. His answer was encouraging and disappointing at the same time. He told me gay rights began "a long time ago because of a riot in New York City". Here he was referring to the 40th anniversary of the police raid on the Stonewall Inn, a gay bar. Wow, I thought this is great. But this comment was quickly followed by the observation that being gay was no big deal but "smart gay people remain in the closet if they want to survive high-school".
My son's observation about gay rights reflect a dichotomy in our society. The cultural acceptance of homosexuality is increasing across our country. The same can be said of disability rights as I would say that most people think American society should be accessible to all people with or without a disability. This is great but the reality as I know it and the reality as most gay people know it is very different. A gay couple with a child in my school district would face significant stigma and be socially ostracized. An openly gay student at my son's high-school would face the same social isolation as gay parents. Likewise, a student with a physical disability at my son's would encounter overwhelming architectural and social barriers. This student would be segregated from his peers getting to and from school, would not be included in any class trip, and be forced to get around the school in ways that defy common sense and make routine socialization impossible. These real life barriers reflect the fact that what people say, i.e. we support disability and gay rights, is a cultural fiction. Disability rights and gay rights are not valued or considered to be as important as the rights of women and minorities. Bigotry based on racial and sexist grounds is an anathema in our culture.
The dichotomy between reality as disabled and gay people know it and what is stated about equality is also reflected in national politics. Obama made it very clear during the election that he supported the Community Choice Act. That support has been reduced to an abstract level and it is obvious the Community Choice Act is not going to be a part of any health care reform. This change, significant in my estimation, is a bitter disappointment. Gay people face the same sort of political double talk. On Monday 250 gay leaders met Obama to commemorate the birth of the gay rights movement. Yet Obama's record on gay rights is mixed. For instance he has not fulfilled a campaign promise to repeal the policy barring openly gay people from serving in the military.
My observations about the rights of disabled and gay people can be easily gleaned from reading national newspapers, watching the network news programs, or cable TV news stations such as CNN and MSNBC. Our culture may be changing but our institutions, the White House, local governments, schools, nursing homes, prisons, corporations, and a myriad of other institutions remain socially stagnant. Sure some openly gay and obviously physically disabled people have been elected to office but their presence is not the norm nor is their presence welcome. How do I know this? All I need to do is listen to comments made by my friends and neighbors when Representative Barney Frank, Democrat from MA appears on TV. I am not sure which is despised more--his views or the fact he is gay. Similarly, when I attend school board meetings and point out the lack of physical access my presence and views are despised. I am perceived to be narcisstic, eager to spend money that could more wisely be spent on "normal" children instead of the needs of a tiny minority.
I wish I had a way to resolve the difference between what people say about disability and gay rights and reality. I am not alone in this regard for both liberal and conservative politicians have failed just as badly as I have. Intellectually I think the answer comes in identifying core belief systems. In terms of disability, the field I know best, there are various models associated with disability. These models, notably the social and medical model, are tools that can be used to provide a basis upon which our government and society can devise ways to insure all people are treated equally. In theory this is great. But I sincerely doubt a serious discussion of the models associated with disability will ever take place in a public forum. What we need, that is our society needs, is a two pronged attack for disability rights. We need foot soldiers. groups like ADAPT, that will force the government via civil disobedience to address disability rights. Nothing works better than civil disobedience and shaming politicians into paying attention. But we also need such activists to work hand in hand with disability rights scholars and the medical community. To date, this sort of collaboration has not worked. We have doctors seeking to "cure" or even abort disabling conditions, disability activists protesting such efforts, and disability rights scholars analyzing disability from afar. This lack of collaboration is inexcusable. If we want real social change to take place in my life time we, disability scholars, doctors, and activists must work together to insure society actually does what it says. Thus I think we can eliminate the dichotomy between what we say and reality. However to accomplish this will take a united effort that has not as yet existed.
My son's observation about gay rights reflect a dichotomy in our society. The cultural acceptance of homosexuality is increasing across our country. The same can be said of disability rights as I would say that most people think American society should be accessible to all people with or without a disability. This is great but the reality as I know it and the reality as most gay people know it is very different. A gay couple with a child in my school district would face significant stigma and be socially ostracized. An openly gay student at my son's high-school would face the same social isolation as gay parents. Likewise, a student with a physical disability at my son's would encounter overwhelming architectural and social barriers. This student would be segregated from his peers getting to and from school, would not be included in any class trip, and be forced to get around the school in ways that defy common sense and make routine socialization impossible. These real life barriers reflect the fact that what people say, i.e. we support disability and gay rights, is a cultural fiction. Disability rights and gay rights are not valued or considered to be as important as the rights of women and minorities. Bigotry based on racial and sexist grounds is an anathema in our culture.
The dichotomy between reality as disabled and gay people know it and what is stated about equality is also reflected in national politics. Obama made it very clear during the election that he supported the Community Choice Act. That support has been reduced to an abstract level and it is obvious the Community Choice Act is not going to be a part of any health care reform. This change, significant in my estimation, is a bitter disappointment. Gay people face the same sort of political double talk. On Monday 250 gay leaders met Obama to commemorate the birth of the gay rights movement. Yet Obama's record on gay rights is mixed. For instance he has not fulfilled a campaign promise to repeal the policy barring openly gay people from serving in the military.
My observations about the rights of disabled and gay people can be easily gleaned from reading national newspapers, watching the network news programs, or cable TV news stations such as CNN and MSNBC. Our culture may be changing but our institutions, the White House, local governments, schools, nursing homes, prisons, corporations, and a myriad of other institutions remain socially stagnant. Sure some openly gay and obviously physically disabled people have been elected to office but their presence is not the norm nor is their presence welcome. How do I know this? All I need to do is listen to comments made by my friends and neighbors when Representative Barney Frank, Democrat from MA appears on TV. I am not sure which is despised more--his views or the fact he is gay. Similarly, when I attend school board meetings and point out the lack of physical access my presence and views are despised. I am perceived to be narcisstic, eager to spend money that could more wisely be spent on "normal" children instead of the needs of a tiny minority.
I wish I had a way to resolve the difference between what people say about disability and gay rights and reality. I am not alone in this regard for both liberal and conservative politicians have failed just as badly as I have. Intellectually I think the answer comes in identifying core belief systems. In terms of disability, the field I know best, there are various models associated with disability. These models, notably the social and medical model, are tools that can be used to provide a basis upon which our government and society can devise ways to insure all people are treated equally. In theory this is great. But I sincerely doubt a serious discussion of the models associated with disability will ever take place in a public forum. What we need, that is our society needs, is a two pronged attack for disability rights. We need foot soldiers. groups like ADAPT, that will force the government via civil disobedience to address disability rights. Nothing works better than civil disobedience and shaming politicians into paying attention. But we also need such activists to work hand in hand with disability rights scholars and the medical community. To date, this sort of collaboration has not worked. We have doctors seeking to "cure" or even abort disabling conditions, disability activists protesting such efforts, and disability rights scholars analyzing disability from afar. This lack of collaboration is inexcusable. If we want real social change to take place in my life time we, disability scholars, doctors, and activists must work together to insure society actually does what it says. Thus I think we can eliminate the dichotomy between what we say and reality. However to accomplish this will take a united effort that has not as yet existed.
Monday, June 29, 2009
Baseball, Lou Gehrig, and Disability History
Growing up I loved baseball. I collected baseball cards, memorized statistics of my favorite players and team, the New York Mets. I played baseball at every opportunity and was a pretty good pitcher, My hero as a child was Tom Seaver, a highly touted prospect signed by the Mets when they were truly the worst team in baseball. One of my first indelible memories was the 1969 World Series. The Mets won the series in seven games and my father had eight tickets to the game. I did not go because I was sick but my siblings brought home a patch of grass from the outfield. I was allowed to plant the grass in our front yard, a ceremony that helped me over come my grief that I did not get to see the game.
The point of the above is that more than just a personal element of my life, baseball reflects the fabric of American society. This observation is far from original and came to me this weekend when I realized we were nearing the 70th anniversary of the most famous speech ever made in baseball. Here I refer to Lou Gehrig's brief farewell speech made July 4, 1939. Aside from Gehrig's quiet dignity, reputation for hard work, including playing 2,130 games in a row, his speech became legend in part because of Gary Cooper. The film, Pride of the Yankees, became a classic, watched by millions of people, myself included. This past weekend baseball honored Gehrig at 15 games where his speech was was read during the 7th inning stretch. This, I thought, was a weak honor at best and got me thinking about Gehrig's legacy.
Most know Gehrig died shortly after he retired. In fact he died within two years of his retirement from ALS, amyotrophic lateral sclerosis, widely known as Lou Gehrig's disease. ALS remains a devastating diagnosis and is inevitably a fatal condition. Indeed Gehrig never got to celebrate his 38th birthday. When Gehrig died people were stunned. How could the Iron Man of baseball die at such a young age? Gehrig was thought to be indestructible, tough as nails. Gehrig was tough but no person can overcome ALS. Overcome, a world I truly despise when it comes to disability. Why do I despise the word overcome? In terms of disability there is nothing to overcome. If I must overcome anything, it is bigotry and ignorance. Thus I am torn by Gehrig's legacy in disability history. Through no fault of his own, he has become a symbol of the belief that anyone can be struck down by disability in the prime of their life. That is disability is a tragedy, one that can be fatal as in Gehrig's case, or just as bad, render one permanently disabled. This sort of antiquated thinking is as prevalent today as it was in 1939. It is effectively used to raise money for ALS research and a host of other causes. On the positive side, Gehrig put a face on an obscure disease, one that was not studied because it was inevitably fatal. Gehrig may or may not have known he was dying. But what he did without question was live life to the fullest. For some with ALS, Gehrig's dignity is inspiring. He is inspiring not because he overcame his condition, this was and remains impossible, but rather he adapted. Legend has it Gehrig never complained about his disability and his inability to do ordinary things like walk, tie his shoes, or climb the stairs of his home. Gehrig was not defiant as some have maintained. Instead, he gracefully accepted a grim reality, one that would quickly claim his life. But he continued to live as many people with a disability have done so before and since Gehrig's untimely death. Thus it is not one's inevitable death or disability that is the problem but society's unwillingness to accept the fact that for some disability will become a part of life. This never ceases to amaze me given the prevalence of disability, especially as we humans live longer lives. Stigma persists and clings to disability. Such stigma is like velcro, strong and unable to rip away without great effort. A point that Gehrig realized 70 years ago as is evidenced by the fact he hated overly sentimental displays of affection. You see he realized that life with or without a disability was a gift. He realized he was to use his own words was "the luckiest man on the earth".
The point of the above is that more than just a personal element of my life, baseball reflects the fabric of American society. This observation is far from original and came to me this weekend when I realized we were nearing the 70th anniversary of the most famous speech ever made in baseball. Here I refer to Lou Gehrig's brief farewell speech made July 4, 1939. Aside from Gehrig's quiet dignity, reputation for hard work, including playing 2,130 games in a row, his speech became legend in part because of Gary Cooper. The film, Pride of the Yankees, became a classic, watched by millions of people, myself included. This past weekend baseball honored Gehrig at 15 games where his speech was was read during the 7th inning stretch. This, I thought, was a weak honor at best and got me thinking about Gehrig's legacy.
Most know Gehrig died shortly after he retired. In fact he died within two years of his retirement from ALS, amyotrophic lateral sclerosis, widely known as Lou Gehrig's disease. ALS remains a devastating diagnosis and is inevitably a fatal condition. Indeed Gehrig never got to celebrate his 38th birthday. When Gehrig died people were stunned. How could the Iron Man of baseball die at such a young age? Gehrig was thought to be indestructible, tough as nails. Gehrig was tough but no person can overcome ALS. Overcome, a world I truly despise when it comes to disability. Why do I despise the word overcome? In terms of disability there is nothing to overcome. If I must overcome anything, it is bigotry and ignorance. Thus I am torn by Gehrig's legacy in disability history. Through no fault of his own, he has become a symbol of the belief that anyone can be struck down by disability in the prime of their life. That is disability is a tragedy, one that can be fatal as in Gehrig's case, or just as bad, render one permanently disabled. This sort of antiquated thinking is as prevalent today as it was in 1939. It is effectively used to raise money for ALS research and a host of other causes. On the positive side, Gehrig put a face on an obscure disease, one that was not studied because it was inevitably fatal. Gehrig may or may not have known he was dying. But what he did without question was live life to the fullest. For some with ALS, Gehrig's dignity is inspiring. He is inspiring not because he overcame his condition, this was and remains impossible, but rather he adapted. Legend has it Gehrig never complained about his disability and his inability to do ordinary things like walk, tie his shoes, or climb the stairs of his home. Gehrig was not defiant as some have maintained. Instead, he gracefully accepted a grim reality, one that would quickly claim his life. But he continued to live as many people with a disability have done so before and since Gehrig's untimely death. Thus it is not one's inevitable death or disability that is the problem but society's unwillingness to accept the fact that for some disability will become a part of life. This never ceases to amaze me given the prevalence of disability, especially as we humans live longer lives. Stigma persists and clings to disability. Such stigma is like velcro, strong and unable to rip away without great effort. A point that Gehrig realized 70 years ago as is evidenced by the fact he hated overly sentimental displays of affection. You see he realized that life with or without a disability was a gift. He realized he was to use his own words was "the luckiest man on the earth".
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