About once a year I hail a taxi in NYC. This may be a simple everyday activity for tourists and city residents but is never easy or simple when you use a wheelchair. Cabbies in NYC are a mixed bag and none know a thing about wheelchairs. No cabbie has ever been happy to see me and most make it clear they are decidedly unhappy to pick me up. Instead I use the MTA buses and have been doing so since they were introduced in the late 1970s. Opposition to making city buses was fierce. Former Mayor Koch was opposed and famously remarked it would be cheaper to hire a limo for every person with a disability than make the buses accessible. Koch was dead wrong as millions of people have benefited from accessible buses and 30 years later service is routinely good (though slow). These thoughts and memories sprung to mind this week because the TLC is in the process of choosing the cab of the future. Disability activists want the new cabs to be accessible. As I have come to expect in all things accessible in transportation the TLC is opposed.
Unlike the MTA 30 years ago when the city was upfront in their opposition to access, the TLC is being sneaky (underhanded) in trying to avoid access issues. Again, I am not surprised. Opposition when it comes to access on planes, cars, trains, and boats remains the norm—it is as though that pesky law known as the ADA did not exist. Opposition is always fierce and commonplace among a multitude of institutions and businesses. In fact at no point in my life am I more aware of my disability than when I am using mass transportation or attending a large event at a stadium or theatre. In fact my son recently attended a game at MSG without me and was stunned as he put it “how easy bipedal life is when compared to your constant access aggravations”. How aggravating is access? Consider this: In NYC there are 13,237 yellow cabs. How many do you think are accessible? Does 240 sound correct? In a word, yes. A grand total of 240 cabs are accessible. Think about this. Does this sound like a “reasonable accommodation? Common sense tells me no. Experience tells me an emphatic no!
The TLC thinks a centralized dispatch system is the answer rather than the obvious—the obvious is making hundreds if not thousands of cabs accessible. According to the TLC “We believe such a dispatch system is an achievable goal that would materially improve transportation options for wheelchair users in lieu of a fully wheelchair-accessible taxicab fleet”. If you believe this dispatch system is fair or will work I have a bridge for sale in Brooklyn. If I have learned anything in the last 30 years it is that separate is inherently unequal, a belief that is the bedrock of our educational system. Any sort of paratransit or transit alternative simply does not work. Such systems are designed to fail by providing inferior service. I speak from experience forevery such system I have tried to use has been an abysmal failure. A quick glance at accessible mass transportation reveals that the more dissent and protests that took place led directly to improved access for all. I feel old writing this but back in the late 1970s and early 1980s when opposition to making NYC buses was common I was what people called a “bus buddy”. I was taught and subsequently taught other people with a disability how to get on and off the bus. Those early days were hard—I was routinely harassed by my fellow passengers and MTA bus drivers. I vividly recall one bus flying by me in Harlem with people all chanting “go, go, go”. Where were they going? By me, the scourge of the earth, for that is exactly how I was treated. Fast forward to today. The MTA buses provide good service for all, meaning those that can walk and those that cannot. Of course we are talking about buses that are slow, over crowded but the point here is that I am usually treated equally. This ense of equality should extend to taxi service in NYC. Other cities in the USA and abroad have achieved this. Here cities like London and San Francisco come to mind. Granted NYC is a hard place to navigate and survive, but we need not make things harder than they need be. And getting a cab in NYV is hard and aggravating. It is an invitation for social and practical abuse. In opposing to making a sizable portion of the NYC taxi fleet accessible a clear message is being sent—people with disabilities are second-class citizens we do not want in our cars. I for one find this appalling and most likely illegal
Friday, December 10, 2010
Thursday, December 9, 2010
Growth Attenuation, Hastings Center Report and Media Misrepresentation
It has been one month since the Hastings Center Report about growth attenuation was published by the “Seattle Working group”. I was encouraged by the article produced though I disagreed with the working premise—specifically that growth attenuation or the Ashley Treatment as the popular media terms it is a viable course of treatment. I do not think growth attenuation should permitted even in cases where a child is not ambulatory and has a profound cognitive disability. However, this does not mean growth attenuation should never be performed. In some exceedingly rare cases growth attenuation may be medically necessary. But such a treatment is extreme and must be subject to thorough review. At minimum that review would entail internal, external and the independent legal representation of the child/person whose growth is attenuated. The Seattle working group in this regard has multiple fine suggestions none of which are being reported by the media. The media, here I refer to mainstream news outlets such as newspapers and television reports are grossly misrepresenting the conclusions reached by the Seattle Working Group and published in the Hastings Center Report. This particularly unfortunate as there is much to be learned by a careful reading of the article wisely published by the Hastings Center (subscription required).
For those unfamiliar with the Hastings Center, it is a fascinating center for the study of bioethics. They produce first rate, serious and sober scholarship. I was lucky enough to be a visiting scholar at the Hastings Center earlier this year and found the experience fabulously rewarding. For better or worse, the Hasting Center does not often make the mainstream news. I suspect the Hastings Center is content to be a purely scholarly institution. I admire this institutional effort in this era of news bites especially since some institutions and universities are all too eager to get their names in print for dubious reasons (think Princeton University and the philosopher Peter Singer). Unfortunately for the Hastings Center the conclusions of the Seattle Working Group are the subject to superficial news bites. What do these news bites report? Simply put, growth attenuation is “morally permissible’. Based on my reading of the Seattle Working Group this is not what they have concluded. This is a big problem in terms of disability rights at multiple levels. Since the end of November several news outlets have repeated that growth attenuation is “morally permissible”. This is an over simplification if not gross distortion of the facts. And I am sure not only am I unhappy but so too are the members of the Seattle Working Group.
The twenty person Seattle working group (curiously with only 19 names listed in the Hastings Center Report) “reached a moral compromise rather than consensus”. Some members of the group are dissatisfied, even distressed, by the paper produced. No such “morally permissible” conclusion was reached. The “compromise position” agreed upon was as follows:
“Growth attenuation can be an ethically acceptable decision because the benefits and risks are similar to those associated with other decisions that parents make for their profoundly disabled children and about which reasonable people disagree.”
The Seattle group maintains that just because a parent asks for growth attenuation does not mean such a course of treatment should automatically be permitted. Safe guards must be put in place that include “eligibility criteria, a thorough decision-making process and involvement of ethics consultants or committees”. This is fine but does not nearly go far enough for me. I have no faith in ethics committees nor in large institutions where decision making strategies make little sense to outsiders. Moreover, I would argue any child subjected to growth attenuation requires independent legal representation in the form of a guardian ad litem. I am by no means a proponent of court intervention however given the extreme nature of growth attenuation extreme measure of protection must be put in place.
There is much to dissect in the Hastings Center Report. Sadly, the most important point raised has been ignored. According to the Seattle Working Group, growth attenuation highlights the unique needs and problems that children and adults with physical and cognitive disabilities encounter. These needs and problems are routinely ignored and in most states support for such individuals is grossly inadequate. Thus the Seattle Working Group concluded, “it is clear that these families need greater social support. To date, there has been insufficient public discussion about how to provide that support and improve the lives of people with profound disabilities. Further, the issues facing this population have not been the primary focus for many health care professionals.”
The above quote gets to the heart of the issue. Why are people with disabilities socially isolated and struggle mightily to access basic health care? Why are people with cognitive disabilities in particular stigmatized inside and outside of the medical community? I have little doubt that my struggles with equal rights and accessing the health care system as an adult with a profound physical disability pale in comparison to those with a cognitive and physical disability. This is an issue worthy of public debate and I applaud the Seattle Working Group for highlighting this point. In contrast, I decry the misleading headlines that confuse rather than clarify the central issues involved in growth attenuation. I have been reading such misleading headlines for decades and on bad days wonder if people will ever really care about the unique issues all people with disabilities arte forced to confront. Will resources, social and practical, ever be deemed important enough to support the lives of people with disabilities? This is a subject worthy of delving into in not only disability rights, bioethics, but in investigative journalism. For instance I have not read any detailed story that questions exactly why some parents are driven to consider growth attenuation. That is a story that outlines just how hard it is to find adequate resources and health care professionals willing to help. Sure I have read the Ashley X parents blog but they are far from the norm. Their goal seemed double sided from the start—help their daughter and sell growth attenuation. Given this, I wish that people would read what the Seattle Working Group has to say on the matter. It is the first even handed scholarly treatment of the pros and cons of growth attenuation. I hardly agree with all that they have written but I do respect the balance they maintained. I only wish the important sober and serious conclusions were discussed in the mainstream media. Now that is a discussion I would love to partake in.
For those unfamiliar with the Hastings Center, it is a fascinating center for the study of bioethics. They produce first rate, serious and sober scholarship. I was lucky enough to be a visiting scholar at the Hastings Center earlier this year and found the experience fabulously rewarding. For better or worse, the Hasting Center does not often make the mainstream news. I suspect the Hastings Center is content to be a purely scholarly institution. I admire this institutional effort in this era of news bites especially since some institutions and universities are all too eager to get their names in print for dubious reasons (think Princeton University and the philosopher Peter Singer). Unfortunately for the Hastings Center the conclusions of the Seattle Working Group are the subject to superficial news bites. What do these news bites report? Simply put, growth attenuation is “morally permissible’. Based on my reading of the Seattle Working Group this is not what they have concluded. This is a big problem in terms of disability rights at multiple levels. Since the end of November several news outlets have repeated that growth attenuation is “morally permissible”. This is an over simplification if not gross distortion of the facts. And I am sure not only am I unhappy but so too are the members of the Seattle Working Group.
The twenty person Seattle working group (curiously with only 19 names listed in the Hastings Center Report) “reached a moral compromise rather than consensus”. Some members of the group are dissatisfied, even distressed, by the paper produced. No such “morally permissible” conclusion was reached. The “compromise position” agreed upon was as follows:
“Growth attenuation can be an ethically acceptable decision because the benefits and risks are similar to those associated with other decisions that parents make for their profoundly disabled children and about which reasonable people disagree.”
The Seattle group maintains that just because a parent asks for growth attenuation does not mean such a course of treatment should automatically be permitted. Safe guards must be put in place that include “eligibility criteria, a thorough decision-making process and involvement of ethics consultants or committees”. This is fine but does not nearly go far enough for me. I have no faith in ethics committees nor in large institutions where decision making strategies make little sense to outsiders. Moreover, I would argue any child subjected to growth attenuation requires independent legal representation in the form of a guardian ad litem. I am by no means a proponent of court intervention however given the extreme nature of growth attenuation extreme measure of protection must be put in place.
There is much to dissect in the Hastings Center Report. Sadly, the most important point raised has been ignored. According to the Seattle Working Group, growth attenuation highlights the unique needs and problems that children and adults with physical and cognitive disabilities encounter. These needs and problems are routinely ignored and in most states support for such individuals is grossly inadequate. Thus the Seattle Working Group concluded, “it is clear that these families need greater social support. To date, there has been insufficient public discussion about how to provide that support and improve the lives of people with profound disabilities. Further, the issues facing this population have not been the primary focus for many health care professionals.”
The above quote gets to the heart of the issue. Why are people with disabilities socially isolated and struggle mightily to access basic health care? Why are people with cognitive disabilities in particular stigmatized inside and outside of the medical community? I have little doubt that my struggles with equal rights and accessing the health care system as an adult with a profound physical disability pale in comparison to those with a cognitive and physical disability. This is an issue worthy of public debate and I applaud the Seattle Working Group for highlighting this point. In contrast, I decry the misleading headlines that confuse rather than clarify the central issues involved in growth attenuation. I have been reading such misleading headlines for decades and on bad days wonder if people will ever really care about the unique issues all people with disabilities arte forced to confront. Will resources, social and practical, ever be deemed important enough to support the lives of people with disabilities? This is a subject worthy of delving into in not only disability rights, bioethics, but in investigative journalism. For instance I have not read any detailed story that questions exactly why some parents are driven to consider growth attenuation. That is a story that outlines just how hard it is to find adequate resources and health care professionals willing to help. Sure I have read the Ashley X parents blog but they are far from the norm. Their goal seemed double sided from the start—help their daughter and sell growth attenuation. Given this, I wish that people would read what the Seattle Working Group has to say on the matter. It is the first even handed scholarly treatment of the pros and cons of growth attenuation. I hardly agree with all that they have written but I do respect the balance they maintained. I only wish the important sober and serious conclusions were discussed in the mainstream media. Now that is a discussion I would love to partake in.
Tuesday, December 7, 2010
Slumping Badly
Yes, the title is an obvious reference to baseball, a sport I adored growing up. My team as a child was the NY Mets. In the 1960s it was easy to root for the Mets, an expansion team. They stunk but were lovable losers after their inception. But a funny thing happened to the Mets in the late 1960s. Thanks to outstanding pitching they won the World Series in 1969. I was just a little boy at the time, a very sick one too. Back then I was spending most of my time on neurological wards at Columbia University Neurological Institute. Those were hard times, an era when a child was expected to act like an adult and do one thing--get better. That was my job and I was expected to nothing else but focus on recovery. That meant no television or radio and often bed rest. I was supposed to wear a hospital gown and did so--I had no choice. But I did have one thing going for me: great parents that fought tooth and nail for me. Hospital rules, rigid and inflexible, were bent to the breaking point on a regular basis. I was allowed to have the very first transistor radio sold to consumers. This technological marvel fit in the palm of my hand and I was able to listen to each and every Met game. In the Fall of 1969 I was the most popular person in the hospital. I knew the score of the Mets games as they were all played during the work day. I was a folk hero--people from all over came to see me and asked "what was the score?". I was a rock star. Like all stars and great teams success was fleeting. By the mid 1970s the Mets stunk again.
For the last week I feel like the Mets--I am in a deep slump. The setback from last week has really thrown me for a loop. I am essentially miserable. I will not be healed by Christmas as hoped. Ski season is likely lost. My life sucks. I have no sense of normalcy. I do not look forward to waking up. I am just watching life pass me by. I miss my ordinary life filled with work, fun, errands, and aggravations. Yes, I even miss people so I must be in bad shape! I want to drive my car and cannot because I am too weak to get in and out by myself. I want to grocery shop. I want to get up and go, go, go. None of that will happen anytime soon. I have missed the Fall, an entire season and months of activity. I cannot seem to focus in anything else but this loss. I am going buggy laying in bed day in and day out. Yet writing this outrages me. What a wimp! How ungrateful can I be! My family sacrificed for me and I sit her feeling sorry for myself. Worse yet, I know I am lucky, I escaped a nursing home. Institutional life would have killed me.
Knowing I am in a deep slump and doing something about it I am learning are two different things. To continue my baseball analogy I am in the dog days of August and batting under .200. How to end this slump is I hope a matter of time. I need one good day of work to get me going. I can thankfully sit up slightly more--the wound on the right side of my butt is already healed. I do not want to push things though. I am looking at computers and hope to be on line on a regular basis soon. I cannot decide what sort of computer to buy. My latest thought is to forego a desk top Mac and go for the Airbook. Of course I also need to figure out how to pay for this--no small feat given the fact the plumber was at my house most of the day. Let's see a new computer or running hot water? Hot water will win every time.
Well, there is no neat and tidy end to this post. I like to have a clear beginning, middle and end to everything I write. Not today. Just cannot come up with the goods, sorry. See I told you I am slumping, even this post leaves much to be desired. Indeed, it contains the sort of self pity and woe is me attitude I despise. I thought long and hard about hitting the delete button but changed my mind. I hope this will jump start me. I do have much to say. The Ashley Treatment is on my mind as is a way to get bioethicists and disability activists together. I also read a great book by a paralyzed woman with two kids. She wrote eloquently about her experiences and the bigotry she encountered as a mother. This fills a huge gap in the literature on disability and feminist scholarship. All this will wait until tomorrow. My sitting time is now spent. Ugh, I am frustrated in the extreme. I suspect if I could sit all day I could break out and get work done.
For the last week I feel like the Mets--I am in a deep slump. The setback from last week has really thrown me for a loop. I am essentially miserable. I will not be healed by Christmas as hoped. Ski season is likely lost. My life sucks. I have no sense of normalcy. I do not look forward to waking up. I am just watching life pass me by. I miss my ordinary life filled with work, fun, errands, and aggravations. Yes, I even miss people so I must be in bad shape! I want to drive my car and cannot because I am too weak to get in and out by myself. I want to grocery shop. I want to get up and go, go, go. None of that will happen anytime soon. I have missed the Fall, an entire season and months of activity. I cannot seem to focus in anything else but this loss. I am going buggy laying in bed day in and day out. Yet writing this outrages me. What a wimp! How ungrateful can I be! My family sacrificed for me and I sit her feeling sorry for myself. Worse yet, I know I am lucky, I escaped a nursing home. Institutional life would have killed me.
Knowing I am in a deep slump and doing something about it I am learning are two different things. To continue my baseball analogy I am in the dog days of August and batting under .200. How to end this slump is I hope a matter of time. I need one good day of work to get me going. I can thankfully sit up slightly more--the wound on the right side of my butt is already healed. I do not want to push things though. I am looking at computers and hope to be on line on a regular basis soon. I cannot decide what sort of computer to buy. My latest thought is to forego a desk top Mac and go for the Airbook. Of course I also need to figure out how to pay for this--no small feat given the fact the plumber was at my house most of the day. Let's see a new computer or running hot water? Hot water will win every time.
Well, there is no neat and tidy end to this post. I like to have a clear beginning, middle and end to everything I write. Not today. Just cannot come up with the goods, sorry. See I told you I am slumping, even this post leaves much to be desired. Indeed, it contains the sort of self pity and woe is me attitude I despise. I thought long and hard about hitting the delete button but changed my mind. I hope this will jump start me. I do have much to say. The Ashley Treatment is on my mind as is a way to get bioethicists and disability activists together. I also read a great book by a paralyzed woman with two kids. She wrote eloquently about her experiences and the bigotry she encountered as a mother. This fills a huge gap in the literature on disability and feminist scholarship. All this will wait until tomorrow. My sitting time is now spent. Ugh, I am frustrated in the extreme. I suspect if I could sit all day I could break out and get work done.
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