Some readers may recall I wrote about the Chapman family in the summer of 2008. Briefly, the Chapman family was denied entry into Canada because they have a child with a disability. I was outraged by this story and it appears the same thing is happening again. This time a French family who were encouraged to move to Montreal by an embassy official in Paris hasve been told they cannot remain in Canada. The reason given is the same one the Chapman's heard: their daughter, who has cerebral palsy, would place an "excessive burden on social services". It is estimated that the child might cost health and social services up to $5,000 a year more than a so called normal child. Essentially what Canadian officials have decided is that any person, adult or child, with a disabling condition is not eligible for citizenship because they are deemed too costly. If you want to take an even harder view, one could argue children with a disability whose parent wants to move to Canada are not fully human and instead are a kind of unwanted property.
David Barlagne and his family are now in a difficult situation. They took a chance and moved to Montreal in 2005. Barlagne told Canadian officials his daughter had cerebral palsy upfront. He was assured that if his business was successful he would not encounter any problems becoming citizen. Five years later Barlagne is in trouble despite the fact his business is thriving. Citizenship and Immigration Canada has rejected Barlagne's request for permanent residency because his daughter is "medically inadmissible". In a letter to Barlagne Citizenship and Immigration Canada wrote that his daughter suffered from a "global delay" and she "risks giving rise to an excessive burden on social health services". Barlagne is mad and I cannot blame him. He told news reporters that "it's very unfair. What I find particularly unjust is that a representative of the government of Canada told me 'Come to Canada, no problem' yet after arriving in Quebec and contributing to society here, we can't stay anymore." Sadly, there is not much Barlagne can do. He is seeking a judicial review in Federal Court of Immigration Canada's decision. If he wins another Immigration Canada adjudicator would review the case. If he loses he and his family must leave Canada immediately.
There is no doubt in my mind Barlagne was mislead, perhaps mistakenly, and is in deep trouble. Based on how the Chapman's were treated in 2008 I think he and his family have no chance to stay in Canada. The Canadian press has been neutral in the reports I have seen. Some have been supportive of immigration officials. For instance, Jacqueline Ruby, an Immigration Canada spokesperson noted that such cases "are difficult for our department and are heartbreaking to our staff". Oh, spare the false pity. What is heartbreaking is a family that tore up its roots and moved to a different country. In addition through hard work and determination during a time of financial chaos a family man started a successful business only to be told sorry your crippled daughter is a costly burden on Canadian society. Of course Immigration Canada views the situation differently: "In general Canada is hoping that more skilled workers, investors, entrepreneurs, and other individuals will immigrate to Canada. Nonetheless, it is also the goal of Citizenship and Immigration Canada to maintain an appropriate balance between welcoming new members into Canadian society while protecting our publicly funded health and social services".
What a great country Canada is! It is protecting itself rather than discriminating against a class of people. That class of people are all those with a disability. Now I know where I rate. I am an "expensive burden on social services". I bet Canadian officials will be more than willing to take my tourism dollars if I care to visit but I am not worthy of citizenship. Immigration officials have made this abundantly clear with the Chapman's and now have reinforced that position with the Barlagne's. I also suspect that the Chapman's and the Barlagne's are far from unique. How many families I wonder do not fight back and make their stories public? Immigration Canada's position is truly outrageous and highly bigoted. A class of people have been deemed unfit for citizenship and I am a member of this group. So the next time someone tells me the disability rights battle has been won I will point out that in Canada I am welcome to visit but in reality an excessive burden on social services and as such not eligible for citizenship. Yikes, and I thought we had problems in the USA!
Wednesday, January 6, 2010
Friday, January 1, 2010
Assisted Suicide: Legal In Montana
For months I have been expecting the Montana Supreme Court to make assisted suicide legal. On Thursday December 31, this became reality. Montana is now the third state to allow doctor assisted suicide. What exactly does this ruling mean for residents of Montana? Well, doctors can prescribe the required drugs to mentally competent, terminally ill people without worrying about being prosecuted. This may sound reasonable as no one wants a person who is terminally ill to suffer when death is inevitable. But life and deciding who is terminally ill is not always simple or clearly defined. For instance, ALS is a terminal condition and any person diagnosed with this condition will be devastated. This is a reasonable reaction. But this same person can live many years and in some cases be alive decades later (this is not the norm but possible). Here is my concern: what happens if this person lives in Montana? What options will be discussed when ALS is the diagnosis? Will the focus be on loss alone, the slow deterioration of one's physical ability? Will a seemingly good hearted and caring physician state that assisted suicide is a viable option? This will be perfectly legal and a deadly choice some people may choose. The implications do not end with this one example nor are they limited to ALS. Let me turn to something I know a lot about--paralysis. What will happen to an athletically fit young man in his early 20s who experiences a high level spinal cord injury. If he lives in Montana will assisted suicide be a treatment option? I can readily imagine it would be easy to sway such a man to end his life shortly after such an injury. No one wants to be paralyzed, myself included. What if the post spinal cord injury portrait painted by the attending physician is hopelessly bleak? This is not far fetched. Indeed, such an approach was the norm when I was paralyzed. It was assumed high level quadriplegics could have no "quality of life". This assumption was wrong and based not on science or medical facts but a cultural belief that death was preferable to a severe disability like quadriplegia.
There is not much positive that can be found in the Montana Supreme Court decision. The one silver lining is that the court did not determine whether the Montana Constitution guarantees the right to an assisted suicide. Thus the court did not go as far as District Judge Dorothy McCarter had in 2008. Instead, the court ruled that "We find nothing in Montana Supreme Court precedent or Montana statues indicating that physician aid in dying is against public policy". Why does this not make me feel any better or less worried? Let's not mince words here: the Montana Supreme Court ruling represents yet another legal victory for powerful and well funded right to die groups like Compassion and Choices. This group in particular is adept at swaying the media and those unfamiliar with assisted suicide. Hence, comments such as those found in the New York Times that appear reasonable are in fact misleading. For example, the legal director of Compassion and Choices is quoted: "Montanans trapped in an unbearable dying process deserve, and will now have, this end-of-life choice". Again, on the surface this sounds reasonable but ignores the fact hospice care is available in every state. Nor does such a statement consider the gray areas I have already mentioned where bias against people with a disability rears it ugly head in a myriad of different ways.
Readers of this blog will know an ever present refrain of mine is nuanced debate--we need a nuanced debate about disability. Sadly, nuance is utterly absent in most cases where disability is discussed and this deeply troubles me. Yet when it comes to the discussion of assisted suicide the situation is far worse. Both sides of the debate, those for and those against assisted suicide, do nothing but scream at one another. Nuance is utterly absent, views are deeply entrenched and unwavering. In addition, strange political bedfellows exist such as conservative pro lifers siding with liberal disability rights activists. In part this is why I limit my comments about assisted suicide. I sincerely doubt I can sway people one way or another and restrict my observations to how assisted suicide can impact the lives of those with or who may incur a disability. This approach does not make me a popular guy. I can live with this but I remain deeply frustrated. But I would like to believe my frustration comes out in a constructive manner. In contrast the frustrated words of others such as Mark Mostert of the Institute for the Study of Disability and Bioethics (ISDB) leave much to be desired. He wrote: "My greatest frustration? That people with disabilities are so (forgive me) brain-dead in not seeing how they will soon be in the sights of the pro-death lobby. In my more perverse moments, I can't wait to say I told you so. More rationally, if more people with disabilities don't stand up along with those of us who are trying to get the word out, then our future is very dark indeed". I do not share Mostert's deep pessimism and regret his choice of words. They are alarmist and counter productive. Obviously I am quite adept at voicing my opinion as are millions of other so called "brain-dead" people with a disability. Thus I may accept his support but wish he could frame it in a nuanced manner.
There is not much positive that can be found in the Montana Supreme Court decision. The one silver lining is that the court did not determine whether the Montana Constitution guarantees the right to an assisted suicide. Thus the court did not go as far as District Judge Dorothy McCarter had in 2008. Instead, the court ruled that "We find nothing in Montana Supreme Court precedent or Montana statues indicating that physician aid in dying is against public policy". Why does this not make me feel any better or less worried? Let's not mince words here: the Montana Supreme Court ruling represents yet another legal victory for powerful and well funded right to die groups like Compassion and Choices. This group in particular is adept at swaying the media and those unfamiliar with assisted suicide. Hence, comments such as those found in the New York Times that appear reasonable are in fact misleading. For example, the legal director of Compassion and Choices is quoted: "Montanans trapped in an unbearable dying process deserve, and will now have, this end-of-life choice". Again, on the surface this sounds reasonable but ignores the fact hospice care is available in every state. Nor does such a statement consider the gray areas I have already mentioned where bias against people with a disability rears it ugly head in a myriad of different ways.
Readers of this blog will know an ever present refrain of mine is nuanced debate--we need a nuanced debate about disability. Sadly, nuance is utterly absent in most cases where disability is discussed and this deeply troubles me. Yet when it comes to the discussion of assisted suicide the situation is far worse. Both sides of the debate, those for and those against assisted suicide, do nothing but scream at one another. Nuance is utterly absent, views are deeply entrenched and unwavering. In addition, strange political bedfellows exist such as conservative pro lifers siding with liberal disability rights activists. In part this is why I limit my comments about assisted suicide. I sincerely doubt I can sway people one way or another and restrict my observations to how assisted suicide can impact the lives of those with or who may incur a disability. This approach does not make me a popular guy. I can live with this but I remain deeply frustrated. But I would like to believe my frustration comes out in a constructive manner. In contrast the frustrated words of others such as Mark Mostert of the Institute for the Study of Disability and Bioethics (ISDB) leave much to be desired. He wrote: "My greatest frustration? That people with disabilities are so (forgive me) brain-dead in not seeing how they will soon be in the sights of the pro-death lobby. In my more perverse moments, I can't wait to say I told you so. More rationally, if more people with disabilities don't stand up along with those of us who are trying to get the word out, then our future is very dark indeed". I do not share Mostert's deep pessimism and regret his choice of words. They are alarmist and counter productive. Obviously I am quite adept at voicing my opinion as are millions of other so called "brain-dead" people with a disability. Thus I may accept his support but wish he could frame it in a nuanced manner.
Wednesday, December 30, 2009
Legit Skiing and Parenting
I am officially out of the holiday season blues. A ski trip to Vermont with my son was the perfect antidote to my depressed mood and the commercialization of Christmas season. Our trip was interesting and highlighted why I love Vermont, skiing, and my son. We skied Sunday in spite of a questionable weather. Sunday morning could lead anyone to question my judgement. We woke up early and drove through rain, heavy rain, to Sugarbush ski resort. When we arrived it was pouring outside. My son thought I was nuts and when we got to the Vermont Adaptive office I was the only student that did not cancel. I was not a popular guy! When my instructor arrived she looked like she just got out of bed and said "I knew you would not cancel". I felt bad as she had to get out of bed on a rotten day. But the skies parted, well sort of, and the conditions were very wet but acceptable. All day the instructor pushed me hard and forced me to ski on intermediate terrain. I like this hard ass approach and for the first day of the season I did well. But the best was yet to come. On Monday the rain turned into snow and over the course of the day almost a foot of snow fell. The conditions improved with each and every run. And an amazing thing happened. Everything I had been told for the last few ski seasons suddenly clicked in my head. I stopped leaning my head into the hill, I was not hammering my right turns, I was looking down hill, I was turning instead of traversing, my riggers were in the correct position, and I was going fast. I am not sure who was happier me or my instructor. But it was my son that made me think and laugh with delight. He skied with us toward the end of the morning and he was full of praise. He said "Dad, that was amazing, it was like legit skiing. You went from the speed of a bike to the international space station". Let me tell you it is hard, almost impossible really, for a parent to impress their seventeen year old son.
We only skied half a day on Monday and drove home afterwards. The drive was very long and gave me a lot of time to think thanks to the fact my son ignored me almost all the way home. While I could rail against the social isolation my son's ipod creates, I valued the quiet drive and was retrospective. My son will be going to college next fall and I have been thinking about my experience as a parent. I thought about the things I have done right, regretted the mistakes I have made, and compared my parenting skills with those of my parents. While measuring up to my parents is impossible, I think I have done a good job raising my son. We are very close, or as close as a parent can be to a teenager bent on independence. Aside from the usual ups and downs all parents and children experience, the custody case I wrote about in my last post had me thinking about the impact my disability has had on my son. This is not the first or last time I have thought about this. My disability is far too visible for others to ignore and we have been born the brunt of intrusive stares and unwanted and rude comments. Like it or not, he is very well aware that being disabled in American society carries great stigma. Thankfully, like me, he forcefully rejects that stigma. And like me when the issue of disability comes up he advocates on behalf of all people with a disability. At school he points out violations of the ADA to teachers and administrators and always frames disability rights as civil rights. I have not pushed or thrust my ideas upon him. I worried about this as the fight for equality is not his fight but mine. Yet he has taken up the mantle of equality for all that few if any teenagers I know have. He has also embraced a radical ideology that I hope will last. The colleges he applied to are all hippie schools with a strong radical bent. These thoughts went through my mind on the drive home from Vermont and it dawned on me that my disability has been a positive influence on his life and my parenting skills. My son is out going, always the first to defend the rights of others, is never discriminatory, and accepting of all others. How did he come to be like this? Surely encountering discrimination head on for much of his life was a major variable. He has seen me needlessly stigmatized by strangers, locked out of routine interaction via social and architectural barriers, and treated as less than human. At a fundamental level he has always known this was wrong and as he has gotten older become more vocal about it. This vocalization has taken many forms. For instance, he is decidedly unhappy that as a teenage he does not share the same rights as an adult. He often asks me why is it okay for him to join the military, die for his country, have sex, father a child but cannot buy a beer or rent a car.
In thinking about being a parent with a disability, in some ways I consider it to be an advantage. My son understands that the world is full of gray areas and answers to seemingly simple questions are not black and white. He understands what the law states and reality are two very different things. He understands in a visceral way that world is not fair, the disenfranchised are most likely to get screwed, and he does like this one bit. He understands there is power in solidarity and thinks people with a disability need a Martin Luther King type leader to rally around. He expects the world to be a just place yet knows this is an ideal we Americans have not yet achieved. He knows the problems I encounter are almost entirely social rather than physical and though he cannot articulate it knows the difference between a medical and social model of disability. Does all this make him unusual? Yes and no. Yes, in that he is far more socially astute than his peers. No, in that he is as self absorbed as any other teenager.
To return to our drive, on the way home I did engage him once about the case of Kaney O'Neill. I briefly described the case and asked him what he thought. In his estimation O'Neill is in deep trouble if she cannot reach an agreement with the child's father. The courts, according to him, will not treat her fairly. There is no doubt in his mind that the "best interests of the child"
will be used against her. I asked him why he felt so strongly about this. In reply he said "Dad, every time you took me to the ER for stitches or an official place where no one knew you they looked at you as though you were incompetent or a Martian. Do you really think a judge is going to look past a wheelchair and see the person using it?" My son's statement is as sad as it is true. I just wish others saw it in the same way. For instance, in a recent story about O'Neill published by ABC News Arthur Caplan, a respected bioethicist at the University of Pennsylvania stated "From a bioethics point of view, this case is not particularly compelling. To me, it's a straightforward example of disability rights where the law is completely on the side of disabled persons". Caplan is correct, the law is on the side people with disabilities. But those laws are interpreted and ruled on by humans with little or no understanding of disability rights. Thus I share my son's deep pessimism that O'Neill will be perceived to be equal to the child's father simply because he will be walking into the court room.
From my great distance and with no direct knowledge of the situation I have no idea who should get custody of the O'Neill's child. What I do know is that the mother, father, and child will all lose if they step into a court of law. Having been through a divorce and separation that is the one lasting lesson I learned. I also know, as my son does, that the mother's disability is not relevant. But life is not fair nor are the courts when a case involves a person with a disability. If you question this conclusion just ask my son what he thinks.
We only skied half a day on Monday and drove home afterwards. The drive was very long and gave me a lot of time to think thanks to the fact my son ignored me almost all the way home. While I could rail against the social isolation my son's ipod creates, I valued the quiet drive and was retrospective. My son will be going to college next fall and I have been thinking about my experience as a parent. I thought about the things I have done right, regretted the mistakes I have made, and compared my parenting skills with those of my parents. While measuring up to my parents is impossible, I think I have done a good job raising my son. We are very close, or as close as a parent can be to a teenager bent on independence. Aside from the usual ups and downs all parents and children experience, the custody case I wrote about in my last post had me thinking about the impact my disability has had on my son. This is not the first or last time I have thought about this. My disability is far too visible for others to ignore and we have been born the brunt of intrusive stares and unwanted and rude comments. Like it or not, he is very well aware that being disabled in American society carries great stigma. Thankfully, like me, he forcefully rejects that stigma. And like me when the issue of disability comes up he advocates on behalf of all people with a disability. At school he points out violations of the ADA to teachers and administrators and always frames disability rights as civil rights. I have not pushed or thrust my ideas upon him. I worried about this as the fight for equality is not his fight but mine. Yet he has taken up the mantle of equality for all that few if any teenagers I know have. He has also embraced a radical ideology that I hope will last. The colleges he applied to are all hippie schools with a strong radical bent. These thoughts went through my mind on the drive home from Vermont and it dawned on me that my disability has been a positive influence on his life and my parenting skills. My son is out going, always the first to defend the rights of others, is never discriminatory, and accepting of all others. How did he come to be like this? Surely encountering discrimination head on for much of his life was a major variable. He has seen me needlessly stigmatized by strangers, locked out of routine interaction via social and architectural barriers, and treated as less than human. At a fundamental level he has always known this was wrong and as he has gotten older become more vocal about it. This vocalization has taken many forms. For instance, he is decidedly unhappy that as a teenage he does not share the same rights as an adult. He often asks me why is it okay for him to join the military, die for his country, have sex, father a child but cannot buy a beer or rent a car.
In thinking about being a parent with a disability, in some ways I consider it to be an advantage. My son understands that the world is full of gray areas and answers to seemingly simple questions are not black and white. He understands what the law states and reality are two very different things. He understands in a visceral way that world is not fair, the disenfranchised are most likely to get screwed, and he does like this one bit. He understands there is power in solidarity and thinks people with a disability need a Martin Luther King type leader to rally around. He expects the world to be a just place yet knows this is an ideal we Americans have not yet achieved. He knows the problems I encounter are almost entirely social rather than physical and though he cannot articulate it knows the difference between a medical and social model of disability. Does all this make him unusual? Yes and no. Yes, in that he is far more socially astute than his peers. No, in that he is as self absorbed as any other teenager.
To return to our drive, on the way home I did engage him once about the case of Kaney O'Neill. I briefly described the case and asked him what he thought. In his estimation O'Neill is in deep trouble if she cannot reach an agreement with the child's father. The courts, according to him, will not treat her fairly. There is no doubt in his mind that the "best interests of the child"
will be used against her. I asked him why he felt so strongly about this. In reply he said "Dad, every time you took me to the ER for stitches or an official place where no one knew you they looked at you as though you were incompetent or a Martian. Do you really think a judge is going to look past a wheelchair and see the person using it?" My son's statement is as sad as it is true. I just wish others saw it in the same way. For instance, in a recent story about O'Neill published by ABC News Arthur Caplan, a respected bioethicist at the University of Pennsylvania stated "From a bioethics point of view, this case is not particularly compelling. To me, it's a straightforward example of disability rights where the law is completely on the side of disabled persons". Caplan is correct, the law is on the side people with disabilities. But those laws are interpreted and ruled on by humans with little or no understanding of disability rights. Thus I share my son's deep pessimism that O'Neill will be perceived to be equal to the child's father simply because he will be walking into the court room.
From my great distance and with no direct knowledge of the situation I have no idea who should get custody of the O'Neill's child. What I do know is that the mother, father, and child will all lose if they step into a court of law. Having been through a divorce and separation that is the one lasting lesson I learned. I also know, as my son does, that the mother's disability is not relevant. But life is not fair nor are the courts when a case involves a person with a disability. If you question this conclusion just ask my son what he thinks.
Wednesday, December 23, 2009
Weary End of the Year Thoughts
I am weary and sad. No doubt this is tied to the holiday season and inevitable end of year retrospection. Another variable is the supposed good cheer one and all are feeling. For me, a person with a disability, strangers seem to suddenly want to help me or are quick with what they think are positive or cheerful comments. In the past week I have "complimented" multiple times about how I get in and out of my car. For instance I have been told it is "amazing the way you get in and out and even drive yourself". Or yesterday when grocery shopping a woman told me I was "an inspiration for the way I push my grocery cart around". I would like to think these ignorant comments are well intended but their increased frequency during the holiday season just pisses me off. I consider this a form of social harassment--a way of reinforcing the superiority of those that are bipedal. Such inane comments all share one thing in common: the assumption that people with a disability are inferior. The focus is never on what can be done but rather on what cannot be done. Disability is a personal and collective tragedy that prevents a person from doing the ordinary. This line of reasoning makes me furious.
I use a wheelchair and cannot walk. I don't think using a wheelchair is a big deal or significant loss in terms of mobility. My means of navigating the world and the social environment is different from the norm. Few people that navigate the world on two feet think this way. Using a wheelchair carries stigma. This was the case thirty years ago when I started using a wheelchair and not much has changed. The worst part of the stigma associated with my use of a wheelchair is the assumption my life is inferior. The routine is not possible and when I have the audacity to be ordinary I am lauded as amazing. Something amazing is going on but it has nothing to do with getting my crippled ass in and out of my car or pushing a shopping cart around the grocery store. What amazes me is how ignorant people are. Surely in the last thirty years society, that is me, you and your neighbors, should have concluded using a wheelchair is a different means of getting around the world we live in. Using a wheelchair should signify nothing socially. But this idea is a pipe dream. I don't see the stigma attached to using a wheelchair changing in my lifetime. For the longest time I thought my presence as well as the presence of others that use a wheelchair was enough to generate change. This was wishful thinking and wrong in retrospect. Now I think all people with a disability that yearn for equality must not simply be present but need to assert themselves. This is easier said than done. I am polite to a fault and do not like confrontations. And during the holiday season no one likes to be Scrooge like (though my son thinks I am perfect for this part). Combine this with the false belief that people with a disability are bitter or angry because they have a disability and I often find myself in a Catch 22 situation. How does one respond when a mother of two thinks I am amazing because I can push a shopping cart? Getting angry in the face of such ignorance is not helpful. An explanation that such a comment is inappropriate is too time consuming. So how do I cope? I scowl a lot and do my best to appear unapproachable. I avoid eye contact with adults, I am not open with strangers, I never answer direct questions, and am wary at all times. While this may protect me from some of the worst social abuses it does not exactly help my social life or foster change.
I wish I had the solution that would foster revolutionary change for all people with a disability. The bias we people with a disability encounter is overwhelming. It is the one underlying theme of my life as an adult. That is the assumption that I am less of a human being, that I have less rights, lesser expectations, hopes, dreams, and ambitions. I have consistently rejected this but it has not been easy. So during this holiday season I mourn for a simpler time that I am not sure ever existed. I wish I was shopping for the coolest Lego set for my son or making a ginger bread house with him. I wish he was once again sitting on my lap as a toddler telling me "Go, Daddy Go". These memories are a mix of fantasy and reality. The reality is my son was the cutest little boy and in spite of inherent human flaws we all posses a fine young man with a bright future. There is another reality though--having my ability to parent repeatedly questioned by strangers, doctors, teachers, and all those that saw a wheelchair and not the human being sitting in it. These unpleasant thoughts have been on my mind as I have been following via newspaper articles the experiences of Kaney O'Neill. O'Neill is a 31 year old mother of one and quadriplegic. Her child's father, David Trais, a self-employed Chicago attorney, has sued Ms. O'Neill for full custody of their son alleging that she is "not a fit and proper person" to care for their son. In Trais 'opinion her disability "greatly limits her ability to care for the minor or even wake up if the minor is distressed". Since a landmark 1979 California Supreme Court Decision a parent's disability cannot be used against them in custody hearings. The court ruled that "the essence of parenting is not to be found in the harried rounds of daily car pooling but rather in the ethical, emotional, and intellectual guidance the parents give the child throughout his formative years." Amen! But in the legal system the idea that a parent with a disability is equal to a parent without a disability is pure fiction. Bigotry abounds against parents with a disability and the amorphous belief that "the best interests of the child" always comes first. Those best interests translates into parents without a disability getting custody. This sentiment was perfectly expressed by Howard LeVine, a lawyer with 40 years of divorce and custody experience. LeVine was quoted in the Chicago Tribune as stating that Trais' concerns are well founded. LeVine stated "Certainly I sympathize with the mom but assuming both parties are equal in other respects isn't the child obviously better off with the father? What's the effect on the child, feeling sorry for the mother and becoming the parent?" While I find LeVine's comments offensive I do not think they are unusual. The focus is on what a person, in this case a mother with a disability, cannot do. I wish O'Neill well in her custody battle and can answer one of Mr. LeVine's questions: "What's the effect of on the child?" If my son is any indication, he has learned much from me as a parent with a disability. He understands the impact bigotry can have on a person from experience. He understands civil rights extend beyond the color of one's skin and include disability rights. He understands injustice and the difference between what the law states and reality. He has a nuanced appreciation for the struggle of all minority groups. He does not think of me as being different. I am simply his father, a man that love him very much. So, despite my grumpiness I know I am a lucky man. I live in a nice home, drive good car, have adequate employment, my son attends a good school and is looking forward to going to college. I have no right to be so grumpy and yet remain extremely sad.
I use a wheelchair and cannot walk. I don't think using a wheelchair is a big deal or significant loss in terms of mobility. My means of navigating the world and the social environment is different from the norm. Few people that navigate the world on two feet think this way. Using a wheelchair carries stigma. This was the case thirty years ago when I started using a wheelchair and not much has changed. The worst part of the stigma associated with my use of a wheelchair is the assumption my life is inferior. The routine is not possible and when I have the audacity to be ordinary I am lauded as amazing. Something amazing is going on but it has nothing to do with getting my crippled ass in and out of my car or pushing a shopping cart around the grocery store. What amazes me is how ignorant people are. Surely in the last thirty years society, that is me, you and your neighbors, should have concluded using a wheelchair is a different means of getting around the world we live in. Using a wheelchair should signify nothing socially. But this idea is a pipe dream. I don't see the stigma attached to using a wheelchair changing in my lifetime. For the longest time I thought my presence as well as the presence of others that use a wheelchair was enough to generate change. This was wishful thinking and wrong in retrospect. Now I think all people with a disability that yearn for equality must not simply be present but need to assert themselves. This is easier said than done. I am polite to a fault and do not like confrontations. And during the holiday season no one likes to be Scrooge like (though my son thinks I am perfect for this part). Combine this with the false belief that people with a disability are bitter or angry because they have a disability and I often find myself in a Catch 22 situation. How does one respond when a mother of two thinks I am amazing because I can push a shopping cart? Getting angry in the face of such ignorance is not helpful. An explanation that such a comment is inappropriate is too time consuming. So how do I cope? I scowl a lot and do my best to appear unapproachable. I avoid eye contact with adults, I am not open with strangers, I never answer direct questions, and am wary at all times. While this may protect me from some of the worst social abuses it does not exactly help my social life or foster change.
I wish I had the solution that would foster revolutionary change for all people with a disability. The bias we people with a disability encounter is overwhelming. It is the one underlying theme of my life as an adult. That is the assumption that I am less of a human being, that I have less rights, lesser expectations, hopes, dreams, and ambitions. I have consistently rejected this but it has not been easy. So during this holiday season I mourn for a simpler time that I am not sure ever existed. I wish I was shopping for the coolest Lego set for my son or making a ginger bread house with him. I wish he was once again sitting on my lap as a toddler telling me "Go, Daddy Go". These memories are a mix of fantasy and reality. The reality is my son was the cutest little boy and in spite of inherent human flaws we all posses a fine young man with a bright future. There is another reality though--having my ability to parent repeatedly questioned by strangers, doctors, teachers, and all those that saw a wheelchair and not the human being sitting in it. These unpleasant thoughts have been on my mind as I have been following via newspaper articles the experiences of Kaney O'Neill. O'Neill is a 31 year old mother of one and quadriplegic. Her child's father, David Trais, a self-employed Chicago attorney, has sued Ms. O'Neill for full custody of their son alleging that she is "not a fit and proper person" to care for their son. In Trais 'opinion her disability "greatly limits her ability to care for the minor or even wake up if the minor is distressed". Since a landmark 1979 California Supreme Court Decision a parent's disability cannot be used against them in custody hearings. The court ruled that "the essence of parenting is not to be found in the harried rounds of daily car pooling but rather in the ethical, emotional, and intellectual guidance the parents give the child throughout his formative years." Amen! But in the legal system the idea that a parent with a disability is equal to a parent without a disability is pure fiction. Bigotry abounds against parents with a disability and the amorphous belief that "the best interests of the child" always comes first. Those best interests translates into parents without a disability getting custody. This sentiment was perfectly expressed by Howard LeVine, a lawyer with 40 years of divorce and custody experience. LeVine was quoted in the Chicago Tribune as stating that Trais' concerns are well founded. LeVine stated "Certainly I sympathize with the mom but assuming both parties are equal in other respects isn't the child obviously better off with the father? What's the effect on the child, feeling sorry for the mother and becoming the parent?" While I find LeVine's comments offensive I do not think they are unusual. The focus is on what a person, in this case a mother with a disability, cannot do. I wish O'Neill well in her custody battle and can answer one of Mr. LeVine's questions: "What's the effect of on the child?" If my son is any indication, he has learned much from me as a parent with a disability. He understands the impact bigotry can have on a person from experience. He understands civil rights extend beyond the color of one's skin and include disability rights. He understands injustice and the difference between what the law states and reality. He has a nuanced appreciation for the struggle of all minority groups. He does not think of me as being different. I am simply his father, a man that love him very much. So, despite my grumpiness I know I am a lucky man. I live in a nice home, drive good car, have adequate employment, my son attends a good school and is looking forward to going to college. I have no right to be so grumpy and yet remain extremely sad.
Wednesday, December 16, 2009
Technological and Social Change
Technology has always fascinated me. I vividly recall being a sick child in 1969, the year the Mets won the World Series with my favorite player, Tom Seaver, leading the team. What I remember the most was listening to the games on the radio. Unlike today, in 1969 the World Series was played during the day. Kids had access to the latest information and scores. I have particularly vivid memories of the 1969 World Series because of technology. My father knew I loved the Mets, had memorized the stats of most players, and had a baseball card for each man on the team. He wanted me to feel connected to the games and I suspect distract me from my illness and the pain I was experiencing. To this end, he bought one of the first small transistor radios on the market. The radio could fit in the palm of my hand, truly a technological marvel, and within a day my hospital bed became the command center for the latest information on the World Series. Doctors, nurses, and workers from all over the hospital would stop by the ward and ask "what's the score". Some would ask to look at the radio and shake their head in wonder. I felt like the most important person in the world.
Not much has changed since 1969. We Americans love technology. We have embraced technology with gusto. When a problem arises we invariably seek a technological solution. Doubt me and simply observe college students or teenagers who cannot function without a cell phone, internet access, and text messages. This is not a critique but basic observation about how they access information and problem solve. While technology is wonderful and enhances our lives in a myriad of ways anthropologists have long observed that technological change takes places before social change. For example, the introduction of the washing machine reduced the labor for many women in the household but did not create gender equality. Gender equality has improved greatly but we are still far from true equality. The same can be said for people with disabilities--we are far from equal but have been empowered by technological advances. For example, I have witnessed a veritable revolution in wheelchair technology that has been driven by the bicycle industry. Carbon fiber wheelchair frames and quick release wheels are routinely used. Adaptive sports gear abounds and my life has been improved as a result. But I firmly believe our struggle for equality is not an issue of technology but one of social bigotry. Thus I have mixed feeling when I finish articles like the one I just read in Scientific American about the robotics involved in creating a "smart wheelchair". John Spletzer, an associate professor in the Computer Science and Engineering Department at Lehigh University is building on his work in with autonomous vehicles to create "smart wheelchairs". The wheelchairs Spletzer is designing use artificial intelligence, lasers, sensors, and mapping software technology to operate and navigate power wheelchairs. The prototype wheelchair can navigate sidewalks, parking lots and outdoor areas. The last accomplishment, outdoor areas, impressed me as did a quote from Spletzer: "My work aims to push the envelope in wheelchair autonomy. It will not be limited to structured indoor environments. Instead, it investigates the much more difficult problem of autonomous operations in unstructured environments outdoors".
I have no doubt Spletzer's so called "smart wheelchair" is on the cutting edge of technology. I wish him well but hope he is attuned to the fact most people with a disability do not have significant financial resources. And if I have learned one thing about contemporary technology it is expensive--very expensive. Time will tell if Spletzer's invention will be commercially viable and this is where society fits in the picture. There is a demand, need, for such a technologically advanced wheelchair. In fact millions of people could benefit. But do we as a society value the people that could utilize this technology. In a word, no. Previous examples of technologically advanced wheelchairs have all failed. They did not fail because they were not needed but rather insurance companies balked at the price and refused to purchase them. Why empower a person with a disability with a wheelchair that costs thousands of dollars when one that costs a few hundred dollars will suffice. This is a social problem that must be addressed and cannot be solved by technology. Spletzer's overall goal, "unprecedented levels of autonomy", is admirable but the barriers to equality are deeply rooted in the way society perceives people with a disability. Society may love technology but is socially selective in how it is utilized. Sadly, everything I have experienced in the last thirty years leads me to conclude society does not think we people with a disability are worth the expenditure. Expensive technology is better of being utilized elsewhere. This may be wrong and may over time change but is the world I live in.
Not much has changed since 1969. We Americans love technology. We have embraced technology with gusto. When a problem arises we invariably seek a technological solution. Doubt me and simply observe college students or teenagers who cannot function without a cell phone, internet access, and text messages. This is not a critique but basic observation about how they access information and problem solve. While technology is wonderful and enhances our lives in a myriad of ways anthropologists have long observed that technological change takes places before social change. For example, the introduction of the washing machine reduced the labor for many women in the household but did not create gender equality. Gender equality has improved greatly but we are still far from true equality. The same can be said for people with disabilities--we are far from equal but have been empowered by technological advances. For example, I have witnessed a veritable revolution in wheelchair technology that has been driven by the bicycle industry. Carbon fiber wheelchair frames and quick release wheels are routinely used. Adaptive sports gear abounds and my life has been improved as a result. But I firmly believe our struggle for equality is not an issue of technology but one of social bigotry. Thus I have mixed feeling when I finish articles like the one I just read in Scientific American about the robotics involved in creating a "smart wheelchair". John Spletzer, an associate professor in the Computer Science and Engineering Department at Lehigh University is building on his work in with autonomous vehicles to create "smart wheelchairs". The wheelchairs Spletzer is designing use artificial intelligence, lasers, sensors, and mapping software technology to operate and navigate power wheelchairs. The prototype wheelchair can navigate sidewalks, parking lots and outdoor areas. The last accomplishment, outdoor areas, impressed me as did a quote from Spletzer: "My work aims to push the envelope in wheelchair autonomy. It will not be limited to structured indoor environments. Instead, it investigates the much more difficult problem of autonomous operations in unstructured environments outdoors".
I have no doubt Spletzer's so called "smart wheelchair" is on the cutting edge of technology. I wish him well but hope he is attuned to the fact most people with a disability do not have significant financial resources. And if I have learned one thing about contemporary technology it is expensive--very expensive. Time will tell if Spletzer's invention will be commercially viable and this is where society fits in the picture. There is a demand, need, for such a technologically advanced wheelchair. In fact millions of people could benefit. But do we as a society value the people that could utilize this technology. In a word, no. Previous examples of technologically advanced wheelchairs have all failed. They did not fail because they were not needed but rather insurance companies balked at the price and refused to purchase them. Why empower a person with a disability with a wheelchair that costs thousands of dollars when one that costs a few hundred dollars will suffice. This is a social problem that must be addressed and cannot be solved by technology. Spletzer's overall goal, "unprecedented levels of autonomy", is admirable but the barriers to equality are deeply rooted in the way society perceives people with a disability. Society may love technology but is socially selective in how it is utilized. Sadly, everything I have experienced in the last thirty years leads me to conclude society does not think we people with a disability are worth the expenditure. Expensive technology is better of being utilized elsewhere. This may be wrong and may over time change but is the world I live in.
Sunday, December 13, 2009
Sex, Drugs, Rock & Roll and Hollywood
Yesterday when I finished writing my post about Hollywood prejudice against actors with a disability I came across news that a new film about Ian Dury is being released in January 2010. Titled Sex, Drugs & Rock & Roll, the film chronicles Dury's life and rise to stardom. Dury was a key figure in Punk Rock, lead singer of the Blockheads and an influential song writer. Avid readers of this blog will recall I wrote about Punk Rock last June and the impact it had on me when I was first disabled. By far the punk song I liked the most aside from the Sex Pistols God Save the Queen was Spasticus Autisticus. The refrain in Spasticus Auticus empowered me to change--to become assertive in a way I was not sure was possible. Now many years later I am hopeful the film will delve into this important song written for the International Year of the Disabled circa 1981 and Dury's experience with polio as a seven year old boy. Dury wore a heavy leg brace (a caliper as the British call it) and used a walking stick. Dury also went to a "special school", Challey School for Crippled Children. How he emerged from his experience with polio and a segregated school system in Britain amazes me. I am amazed not because he adapted to polio but rather overcome what must have been overwhelming social bias and stigma.
I eagerly await the release of the film and look forward to how the filmmakers deal with the impact polio had on Dury physically and socially. I am particularly hopeful because the film about Dury is not being produced by an American Hollywood producer or studio. Another major variable is that the young Dury will be portrayed by Wesley Nelson, a 13 year old actor who has cerebral palsy. Imagine that--a young actor with extensive experience on television playing a character with a disability. Based in Cardiff, Nelson has stated he will draw on his own experience with disability to understand a man he never met and will portray. Nelson noted that "I read a lot about Challey, but a certain degree has to come from you and your emotion. You have to understand his surroundings which and I drew on my experience with cerebral palsy and partly used that to understand him, which you could say was handy". Handy indeed! Here is an actor with a disability getting a chance to break into films and perceives his experience with a disability as a positive. If a 13 year actor can grasp this why can't movie producers get it? Well it appears as if the producer of the film, Damian Jones, drew on the expertise at 104 Films, a production company with an international reputation in the field of disability cinema and strong connections to the UK Film Council. Not content with just an actor with a disability, during production the filmmakers also operated a disability training program also connected to 104 Film. Surely a more nuanced understanding of disability as portrayed in the film and among the production company are a likely result.
When I read about Sex & Drugs & Rick & Roll I thought about how the acclaimed American television show Glee missed a golden opportunity to portray disability in a complex way. Instead, Glee claimed no qualified actor in America could be found to play the part. The result was a poor at best episode that relied on well-worn ideas and featured a bad scene of people dancing that used wheelchairs. Perhaps the result would have been the same if an actor with a disability was hired--we are talking about American television afterall. But somehow I doubt the episode would have been quite as bad as it was. There is something to be said for having direct experience with disability. And the fact is there are times when having a disability is an advantage. Few if any people without a disability realize this. And I am certain no producer in Hollywood thinks this way. Perhaps if we had more groups like 104 Film more actors with disabilities would be hired. I guess I am still dreaming and hopeful a world where I am considered equal will exist.
I eagerly await the release of the film and look forward to how the filmmakers deal with the impact polio had on Dury physically and socially. I am particularly hopeful because the film about Dury is not being produced by an American Hollywood producer or studio. Another major variable is that the young Dury will be portrayed by Wesley Nelson, a 13 year old actor who has cerebral palsy. Imagine that--a young actor with extensive experience on television playing a character with a disability. Based in Cardiff, Nelson has stated he will draw on his own experience with disability to understand a man he never met and will portray. Nelson noted that "I read a lot about Challey, but a certain degree has to come from you and your emotion. You have to understand his surroundings which and I drew on my experience with cerebral palsy and partly used that to understand him, which you could say was handy". Handy indeed! Here is an actor with a disability getting a chance to break into films and perceives his experience with a disability as a positive. If a 13 year actor can grasp this why can't movie producers get it? Well it appears as if the producer of the film, Damian Jones, drew on the expertise at 104 Films, a production company with an international reputation in the field of disability cinema and strong connections to the UK Film Council. Not content with just an actor with a disability, during production the filmmakers also operated a disability training program also connected to 104 Film. Surely a more nuanced understanding of disability as portrayed in the film and among the production company are a likely result.
When I read about Sex & Drugs & Rick & Roll I thought about how the acclaimed American television show Glee missed a golden opportunity to portray disability in a complex way. Instead, Glee claimed no qualified actor in America could be found to play the part. The result was a poor at best episode that relied on well-worn ideas and featured a bad scene of people dancing that used wheelchairs. Perhaps the result would have been the same if an actor with a disability was hired--we are talking about American television afterall. But somehow I doubt the episode would have been quite as bad as it was. There is something to be said for having direct experience with disability. And the fact is there are times when having a disability is an advantage. Few if any people without a disability realize this. And I am certain no producer in Hollywood thinks this way. Perhaps if we had more groups like 104 Film more actors with disabilities would be hired. I guess I am still dreaming and hopeful a world where I am considered equal will exist.
Saturday, December 12, 2009
Hollywood Prejudice
I have been relatively inactive recently. I am caught up with the usual end of semester madness and demands of work and family. While I may be silent, I have been following the news as it pertains to disability. At the forefront this month are multiple stories related to the role or lackthereof for disabled characters on television, film, and theatre. Wheelie Catholic and Wheelchair Dancer have, for good reason, blasted the television program Glee. Disabled actors have protested the use of Abigal Breslin in a production about the life of Helen Keller--they believe a blind actress should have been awarded the part. Predictably, mainstream news outlets belittle critiques leveled by actors with disabilities. Like bigoted Hollywood producers that do not caste actors with a disability to portray a character with a disability, news reports state "We tried, there are just not any qualified disabled actors. No person with a disability was good enough to play the part". Yeah, right! If this were true why do so many actors with a disability bitterly complain about rampant and persistent discrimination. Many contend, what's the big deal. Well, it is a very big deal to me and it involves far more than an ideological viewpoint. As the title of Nothing About Us Without implies and graphically demonstrates when it come to disability issues people with a disability must be present for effective change to take place. Hollywood is quite content to lock out actors with a disability. They have done this in the past and they are doing so today. I cannot believe there is a lack of qualified actors with a disability. I believe overt prejudice exists as does subtle bias. I know this in part because I am in a profession, academia, that is hostile to the presence of people with a disability and disability rights. My isolation is to a degree extreme. I have always worked in isolation, that is as the only person with a disability on campus. Aside from a lack of support for my civil rights, the not so subtle message is that people on campus have no place being a professor. It is not a role I or any other paralyzed person is expected to fill.
My views are harsh. Certainly more harsh than Leonard David who recently wrote a thought provoking article, "Let Actors with Disabilities Play Characters with Disabilities", on December 7 in the Huffington Post. I greatly admire Davis' scholarship and activism but he is far too generous in my opinion when it comes to Hollywood. Of course I do not in any way want a person with a disability to get a part simply because he or she has a disability. But as Davis noted "the current reality is that non-disabled actors get to play whatever roles they want whereas disabled actors don't. So there is not a level playing field. One group has all the advantages while the other is discriminated against. The three major entertainment unions agree. It's now been a year since they launched a campaign to create equal employment opportunities for people with disabilities." And what has happened in the last year? Nothing. Actors with disabilities are still discriminated against and actors without a disability play the parts of people who are blind, deaf, paralyzed etc. The result is that we people with a disability remain unemployed in great numbers and socially invisible. We as a society can do better, much better. Don't tell me there are not qualified people looking for work in multiple professions, acting included. Yet within popular culture and the media, especially television and film, characters with disability are a rarity or, worse yet, reduced to a stereotype. This infuriates and worries me. Where are the role models for people with a disability? Who are children with a disability expected to emulate? What message is sent when we have a person without a disability caste in a role as person with a disability? To me it is truly strange when I see a person use a wheelchair in a given role and then see that same individual walk around. The larger message sent is clear: people with a disability, in this case anyone that uses a wheelchair, is not competent. This is a lie, a gross falsehood many accept. It leads to overt prejudice against people with a disability. It takes place in Hollywood, on college campuses, and in the business world. Prejudice accounts for why people with a disability are at such a gross disadvantage economically and socially. The issue is not a given physical deficit but social stigma.
Needles to say no one wakes up and thinks, as Mary Johnson demonstrated in her book Make Them Go Away, that I am going to be biased against a person with a disability. But just because this is not an overt thought in people's mind does not mean rampant prejudice does not exist. The prejudice people with a disability encounter is different from let's say racial bigotry that is clearly understood and frowned upon (all children are taught this in school). It is equally troubling that disability based prejudice is not widely acknowledged. Sure we have the ADA but few people equate it with civil rights legislation. We people with a disability are out of sight and out of mind. And frankly we could use more than a little help from Hollywood because they have a vast influence on millions of people. Just imagine what would happen if somehow disability became cool. Hollywood has the power to make this happen but chooses instead to lock out actors with a disability and more generally a disability rights viewpoint. I for one would like to be perceived as cool once in my life. Ah, dreams die hard even in my household.
My views are harsh. Certainly more harsh than Leonard David who recently wrote a thought provoking article, "Let Actors with Disabilities Play Characters with Disabilities", on December 7 in the Huffington Post. I greatly admire Davis' scholarship and activism but he is far too generous in my opinion when it comes to Hollywood. Of course I do not in any way want a person with a disability to get a part simply because he or she has a disability. But as Davis noted "the current reality is that non-disabled actors get to play whatever roles they want whereas disabled actors don't. So there is not a level playing field. One group has all the advantages while the other is discriminated against. The three major entertainment unions agree. It's now been a year since they launched a campaign to create equal employment opportunities for people with disabilities." And what has happened in the last year? Nothing. Actors with disabilities are still discriminated against and actors without a disability play the parts of people who are blind, deaf, paralyzed etc. The result is that we people with a disability remain unemployed in great numbers and socially invisible. We as a society can do better, much better. Don't tell me there are not qualified people looking for work in multiple professions, acting included. Yet within popular culture and the media, especially television and film, characters with disability are a rarity or, worse yet, reduced to a stereotype. This infuriates and worries me. Where are the role models for people with a disability? Who are children with a disability expected to emulate? What message is sent when we have a person without a disability caste in a role as person with a disability? To me it is truly strange when I see a person use a wheelchair in a given role and then see that same individual walk around. The larger message sent is clear: people with a disability, in this case anyone that uses a wheelchair, is not competent. This is a lie, a gross falsehood many accept. It leads to overt prejudice against people with a disability. It takes place in Hollywood, on college campuses, and in the business world. Prejudice accounts for why people with a disability are at such a gross disadvantage economically and socially. The issue is not a given physical deficit but social stigma.
Needles to say no one wakes up and thinks, as Mary Johnson demonstrated in her book Make Them Go Away, that I am going to be biased against a person with a disability. But just because this is not an overt thought in people's mind does not mean rampant prejudice does not exist. The prejudice people with a disability encounter is different from let's say racial bigotry that is clearly understood and frowned upon (all children are taught this in school). It is equally troubling that disability based prejudice is not widely acknowledged. Sure we have the ADA but few people equate it with civil rights legislation. We people with a disability are out of sight and out of mind. And frankly we could use more than a little help from Hollywood because they have a vast influence on millions of people. Just imagine what would happen if somehow disability became cool. Hollywood has the power to make this happen but chooses instead to lock out actors with a disability and more generally a disability rights viewpoint. I for one would like to be perceived as cool once in my life. Ah, dreams die hard even in my household.
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