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.
Thursday, July 2, 2009
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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