The first legal test of the interim rules on assisted suicide in Britain has already come to light. An 83 year old former GP and assisted suicide advocate, Libby Wilson, was questioned and according to some reports arrested by the police. Dr. Wilson, the founder of FATE, Friends at the End, was questioned by the police in connection with the death of Cari Loder. Ms. Loder, a 48 year old academic, was not terminally ill. She had Multiple Sclerosis. Ms. Loder killed herself using helium gas and a hood she bought on line. According to Dr. Wilson she spoke with Ms. Loder twice and explained how to use the mask and gas she purchased. Loder was dead two days after they spoke and appears to have used a Final Exit suicide guide to end her life. Dr. Wilson was not the only person questioned by police who also spoke to one of Loder's neighbors. However, Dr. Wilson has been frank in stating her opinions about Loder's death. Wilson has been quoted as stating that she gave Loder "final tips" and that her questioning was an "appalling waste of money. The police time and effort to investigate the death of a lady who wanted to die and had good reason to die and I had absolutely nothing to do with the means of how she did it". Exactly why Loder had "good reason" to die is something I and many others would dispute.
This case does not surprise nor does the identity of the victim. Loder was a lecturer at London University's Institute of Education and discovered what was named the "Cari Loder Regime" for MS. This regime combined antidepressants, an amino acid and vitamins. Loder wrote Standing in Sunshine in 1997. In her book she wrote that she was diagnosed with MS at the age of 32 and was on the verge of committing suicide until she discovered the "Cari Loder Regime". It will be very interesting to see how and what Keir Starmer does in light of Loder's death. I sincerely doubt Dr. Wilson will face prosecution based on the interim guidelines thereby paving the way for many more deaths.
Paralyzed since I was 18 years old, I have spent much of the last 30 years thinking about the reasons why the social life of crippled people is so different from those who ambulate on two feet. After reading about the so called Ashley Treatment I decided it was time to write a book about my life as a crippled man. My book, Bad Cripple: A Protest from an Invisible Man, will be published by Counter Punch. I hope my book will completed soon.
Tuesday, September 29, 2009
Monday, September 28, 2009
Inclusion in Education at What Cost?
Access for people with a disabilities carries a cost. To me cost does not refer to money. Inclusion means equal access and equal rights as in civil rights. One of our most cherished rights is the right to an education. However, the right to a public school education was denied generations of people with a disability. The impact this denial had on the lives of people with a disability was profound and long lasting. We people with a disability have yet to recover from the legacy of exclusion. Without an education, employment was impossible for people with a disability. With no job, a social life and home of one's own was a pipe dream for many Americans with a disability. Today, schools districts across America trumpet inclusion--within reason. And what does "reason" mean? Inclusion is valued as long as it does not cost too much or there are not too many students with a disability present. I know this because I have heard parents and my professorial peers complain bitterly about how schools are "overrun with students with disabilities". Professors complain about the accommodations they are forced to make, particularly for students with learning disabilities who get extra time to take a test and "cannot write in English." Meanwhile parents in the public school complain about the cost involved in educating students with a disability and resent each and every accommodation. I have heard many parents ask why a bus with a lift is needed for a student that uses a wheelchair and suggest hiring a cab to take them to and from school daily would save money. No consideration is given to the legality of such a suggestion or the social stigma attached to arriving to school apart from one's peers.
The cost of inclusion has been on mind since the film, Including Samuel, has been subject of an intense media blitz. The film has been featured on Good Morning America, NPR's All Things Considered, and will be broadcast nationally on PBS. Including Samuel chronicles the life of four students with disabilities including Samuel, a fourth grader with cerebral palsy. Samuel parents make every effort to include Samuel, to make his life as routine as his peers without a disability where they reside in Concord, New Hampshire. What this film does well is reveal that all may support inclusion in theory but the reality children and adults with a disability experience is quite different. Moreover, there is a great deal of resentment in the larger community about the cost involved in providing an education for children with special needs. "Special needs" and the very idea of treating any American, especially a child, as though they are, well, special, is deeply resented. Such treatment goes against the American myth that all people are created equal. Special to Americans is akin to an advantage. I know such children and adults with disabilities are resented because I hear negative comments all the time. Professors often ask me "Why do they even let students with a learning disability into college?" At the local public school I have heard people complain at length about the cost of making a bathroom accessible. They wonder "why students with a disability just go to the nurses office if they need to use the rest room?" In each example "special" treatment is resented in terms of finances involved and accommodations made. This viewpoint is the norm and hence an indication of the great cost and legacy of decades of exclusion. For I have often heard parents remark that "We never had any kids with disabilities when I was a kid. Why can't they got to a special school and use the savings to expand the program for the gifted and talented or sparse athletic budget". This line of logic utterly ignores the law and those parents that fight for their child's right to an education are deemed difficult or worse. Students with a disability are stigmatized because at some level they are aware their presence is not only unwanted but costly. This message is delivered by teachers that do not want them present because a wheelchair for instance takes up too much valuable space in a classroom. Perhaps they are forced to go to the one and only accessible bathroom in say the nurses office which is in an out of the way location. Perhaps they are driven to school daily because the lift on the bus is broken and has not worked in months. Kids are not stupid, they have a sense for things and kids with a disability are acutely aware they are different. They are also aware of when their presence is a problem--like in gym when other kids are active but no adaptive activity is considered.
I know quite a bit about the implications of being unwanted. I went to Catholic school as a child and the nuns made sure that I, "one of God's special children", was treated differently. Thankfully my parents nipped this sort of talk in the bud, as in one day, and sent me to public school. Public school was not much easier as my peers ridiculed my existence and tortured me with taunts of "old ironsides" and "retard". But at least my teachers and school guidance counselor treated me as a sentient being and this what I remember the best. Yet I wonder what would happen to me if I were attending school today. I doubt I would get the same support. In theory and legally I would be supported but the day to day reality would be profoundly different. Would a present day guidance counselor support my right to an equal education or make me feel as though any accommodation was a problem. These are hard times economically, school budgets are being slashed and the people most adversely affected are students with disabilities. They are being adversely affected because their existence is unwanted and as such mirrors larger cultural traits of exclusion that persist. These thoughts depress me in larger part because it is so unnecessary. It is also against the law and that too is a problem--disability rights and civil rights are not connected in the minds of most Americans. If any thought is put into the issue, most assume the ADA solved the problem long ago. I know, as do most people with a disability, that the problem has not been solved. I assure you those little blue wheelchair signs all over the place are as useful as all the broken elevators and garbage laden wheelchair lifts I encounter. What really gets me is that people think that my wheelchair limits my options or affects my ability to think. The real limitations have nothing to do with a person's given physical disability but the education and opportunities denied them by society. This is a lesson many school districts have not yet learned.
The cost of inclusion has been on mind since the film, Including Samuel, has been subject of an intense media blitz. The film has been featured on Good Morning America, NPR's All Things Considered, and will be broadcast nationally on PBS. Including Samuel chronicles the life of four students with disabilities including Samuel, a fourth grader with cerebral palsy. Samuel parents make every effort to include Samuel, to make his life as routine as his peers without a disability where they reside in Concord, New Hampshire. What this film does well is reveal that all may support inclusion in theory but the reality children and adults with a disability experience is quite different. Moreover, there is a great deal of resentment in the larger community about the cost involved in providing an education for children with special needs. "Special needs" and the very idea of treating any American, especially a child, as though they are, well, special, is deeply resented. Such treatment goes against the American myth that all people are created equal. Special to Americans is akin to an advantage. I know such children and adults with disabilities are resented because I hear negative comments all the time. Professors often ask me "Why do they even let students with a learning disability into college?" At the local public school I have heard people complain at length about the cost of making a bathroom accessible. They wonder "why students with a disability just go to the nurses office if they need to use the rest room?" In each example "special" treatment is resented in terms of finances involved and accommodations made. This viewpoint is the norm and hence an indication of the great cost and legacy of decades of exclusion. For I have often heard parents remark that "We never had any kids with disabilities when I was a kid. Why can't they got to a special school and use the savings to expand the program for the gifted and talented or sparse athletic budget". This line of logic utterly ignores the law and those parents that fight for their child's right to an education are deemed difficult or worse. Students with a disability are stigmatized because at some level they are aware their presence is not only unwanted but costly. This message is delivered by teachers that do not want them present because a wheelchair for instance takes up too much valuable space in a classroom. Perhaps they are forced to go to the one and only accessible bathroom in say the nurses office which is in an out of the way location. Perhaps they are driven to school daily because the lift on the bus is broken and has not worked in months. Kids are not stupid, they have a sense for things and kids with a disability are acutely aware they are different. They are also aware of when their presence is a problem--like in gym when other kids are active but no adaptive activity is considered.
I know quite a bit about the implications of being unwanted. I went to Catholic school as a child and the nuns made sure that I, "one of God's special children", was treated differently. Thankfully my parents nipped this sort of talk in the bud, as in one day, and sent me to public school. Public school was not much easier as my peers ridiculed my existence and tortured me with taunts of "old ironsides" and "retard". But at least my teachers and school guidance counselor treated me as a sentient being and this what I remember the best. Yet I wonder what would happen to me if I were attending school today. I doubt I would get the same support. In theory and legally I would be supported but the day to day reality would be profoundly different. Would a present day guidance counselor support my right to an equal education or make me feel as though any accommodation was a problem. These are hard times economically, school budgets are being slashed and the people most adversely affected are students with disabilities. They are being adversely affected because their existence is unwanted and as such mirrors larger cultural traits of exclusion that persist. These thoughts depress me in larger part because it is so unnecessary. It is also against the law and that too is a problem--disability rights and civil rights are not connected in the minds of most Americans. If any thought is put into the issue, most assume the ADA solved the problem long ago. I know, as do most people with a disability, that the problem has not been solved. I assure you those little blue wheelchair signs all over the place are as useful as all the broken elevators and garbage laden wheelchair lifts I encounter. What really gets me is that people think that my wheelchair limits my options or affects my ability to think. The real limitations have nothing to do with a person's given physical disability but the education and opportunities denied them by society. This is a lesson many school districts have not yet learned.