I am in Ontario and had an interesting morning. I have been to Ontario a number of times this year. I am learning |Canada has a differnt cultural response to disability. Generally speaking, I have found Ontario residents to be far more tolerant than my fellow New Yorkers. By tolerant I mean I am not accosted as frequently in Ontario than I am in New York. In the last few months I am struck by the nuimber of people I see with a disability doing ordinary things in Ontario. every day I see a person with a disability out and about. For instance, I saw a woman using a power wheelchair and holding the hand of the man next to her. A child was getting a free ride on the back of her wheelchair. I was thrilled to see this normalcy--just parents out for a walk with their child. As passed this family what I saw only got better. On the woman's lap was another young child. This truly made my day as I rarely see parents with a disability. Regardless, fast forward to today. I am leaving a local supermarket and an elderly man looks at me and says "Bugger me, your life must really suck.". I just stared and did not reply. I consider myself lucky as the follow up line was not forthcoming--such lines are always even more more demeaning. I drove all of 50 yards to a gas station to fill up my tank. As I am getting out of the car and putting my wheelchair together a young guy at the opposite pump asks me "How do you like it?" I reply "The wheelchair or the car? This is greated with a healthy chuckle and he says "the car". We engage in a typical male discussion about cars--model type, year, engine size, reliability etc. In short, it was an ordinary conversation.
The above anecdote makes me realize just how uneven the response to disability can be. On the one hand I had an elderly man demean me. It was likely not his intent and he obviously had an antiquated view of disability. He could also fear disability. Given his age, if he lives long enough he will have a disability of some sort. In contrast the young guy I met did not even deem my wheelchair and paralysis worthy of mention much less disacussion. The guy just really liked my car. He was far more interested in the sort of engine my car had and we wondered why more diesal cars are not sold in North America. The startling social dichotomy I experienced within 50 yards and less than five minutes reveals the inherent difficulty in assessing the social impact of disability. The elderly man clearly accepted a medical model of disability. The young man in contrast did not consider my disability worth a mention. Age is surely a factor. But I am not going to blast all elderly people--I have met many older folks with a nuanced view of disability. I have met young biggots as well. I am not sure what to make of my experience but do know my life is never dull or that I can never truly be anaonymous.
Wednesday, August 15, 2012
Monday, August 6, 2012
Alaska Airlines and Blatant Discrimination
A few friends sent me emails about a story that has generated online buzz. Multiple stories have appeared in various mainstream news outlets as well. Alaska Airlines has been accused of discriminating against an elderly man with a disability and his friend. The source of the story is from Facebook--a fellow passenger who was outraged by what took place. Below is the raw Facebook post.
I request a complete and thorough review of the actions of staff today.. at the Redmond Oregon Airport. Cameron Clark reports, from the Redmond, Oregon Airport today.. """"i witnessed today, what i consider to be the worst of humanity.
standing in line at an @alaska airlines ticket check in, in redmond oregon, i watched as a disabled/mentally and physically challenged couple were left standing in the front of a line by the ticket attendant, melissa, who didn't say a word- no "final call, redmond to seattle"-- no "if you are flying to seattle, it's too ...
late to make this flight," etc-- nothing.
when a different agent appeared 1/2 hour later-- the flight still had not left. i asked for a quick "side bar" with the new agent-- telling her that this couple needed some leeway-- some additional help. she quickly informed me that "we treat every single customer the exact same here"-- she was annoyed by my insistence and advocacy. i tried to explain to her that her colleague had left the man and his companion alone, without saying a word to them. that they were "different" and that it would be ok for her to make exceptions for them (uttering something like, "exceptional circumstances sometimes require, exceptional responses").
melissa finally agreed to try to get the man on the flight-- but he couldn't bring his luggage (ug).
he had a hard time walking-- no one offered him a wheelchair or asked how they could be helpful. he stumbled off toward the safety inspection line.
predictably, he didn't understand/comprehend their restriction of his luggage, and got stuck in security.
while this was going on, the ticket attendant and myself were continuing to have quiet words about how they needed extra help-- she told me that "i didn't know the whole story"-- that he had the "same problem yesterday, showing up late to his first flight." i told her that i thought there was a real reason he was struggling to make it anywhere on time, and that this was cause for some compassion and some exceptions to rules, and some additional assistance. by now i was fully annoying her. she had her rules, and she was growing tired of my moral compass.
security ended up sending the man back, telling him in the confusion around his luggage that there was no longer enough time for him to make his airplane, without the plane running late.
the original attendant, melissa, returned, and lightly shamed the couple for being late for the second time in a row, telling them there was no way the man could get to bellingham before 9pm now.
the man and woman broke into tears. his "nervous system hurky/jurkyness" became profound. he begged her to help him. nothing.
i asked tiffany to go on with the kids, that i wanted to stick around and advocate for this couple for the 20 minutes i could and still make my own flight...
i asked the man for his name. "brent" he and his companion were easily 70 something. he was crying something fierce by now. i asked him what his condition was. he said he had late stage parkinsons, and that his companion had MS.
i asked to speak to the on site manager- a man named "jim cook." jim listened to me politely tell him the story about the man with parkinsons, and the woman with MS, and how none of his staff did anything to offer them additional assistance when it was clear to all 20 of us in line, how much they needed it and deserved it, and then he explained to me that the "laws don't allow alaska airlines to provide anyone, for any reason "special treatments." i wrote that comment down, word for word. he responded by saying, "so great, you are going to take me completely out of context aren't you?" i said, "what other context is there?" i asked you why your staff didn't help these people, and, in that exact context, you backed up your employee who told me that everyone is treated exactly alike. he stood by this position.
the end of this story is sad to the core. after wrapping up with mr. cooke, i talked to brent for a bit longer.
this trip- redmond to seattle/seattle to bellingham, was allowing him to see his daughter one final time, who works on the ferry system and is out on the water for most of her time-- she was scheduled to meet him in bellingham at 3pm today. he said that it was a "bucket list" item that he could no longer realize. i asked him if she could get off the ferry and wait for him tomorrow-- and he said that she was only available for this brief time today-- that he was to join her on the ferry, and that otherwise she'd be out on the water for days-- his trip was done. he couldn't re-schedule. he was simply, now, in defeat, asking for his money back.
what part of this story is "ok" in any way?
what happened to our collective sense of decency, of compassion, of our disposition to help those in need of extra help.
alaska airlines. you broke a man's heart today. you maintained your policy, and ignored an opportunity to do the right thing.
you broke my heart too.
if i knew who to contact, i would contact them and invite them to pay for this man's daughters unpaid leave, and provide her a ticket to come see her father? short of that, i know of nothing that could undo the inhumanity i witnessed today.
blech.
I have no doubt this is an accurate description of the incident. It would in part reflect my experience every time I fly. Airline personnel are routinely rude to people with a disability. When I show up at a gate I do not even need to utter a word--the gate agent sees me as nothing but extra work and a hassle to deal with. When I fly I have the plague. Using a wheelchair and flying is a miserable experience. If I am lucky and all goes smoothly I will only be delayed about an hour. If things go wrong, and they often do, much worse things can happen than just being delayed. With this background in place nothing reported above is a surprise. What is a surprise is the reaction--over 42,000 people have noted they like this story and are upset with Alaska Airlines. This will surely sound like sour grapes but where are all these out raged people when I fly and get treated like dirt by airline personnel? I cannot think of a single incident when I was supported by a fellow passenger. Once every few years a passenger will look at me as they pass and say something to the effect they are sorry I am being treated so badly. This summer as I waited and waited and waited for assistance well after every passenger exited the plane the pilot for the next flight looked at me puzzled and asked "Are you still waiting?" Yes, I replied. He said "You guys who use wheelchair really have it rough" and then entered the cock pit and closed the door.
The point of my two stories is simple and will negate the sour grapes aspect of this post: when one observes an injustice speak up. Offer your support. Take the risk and tell airline personnel you are offended by the way a fellow passenger is treated. And I know this is a risk. When people fly once they enter an airport thanks to the Patriot Act they give up their civil rights. All people must endure the humiliation ritual performed by the TSA. I get crowds need to be controlled. I get people have to get from point A to point B. I get airlines need to operate efficiently and maintain rigid control of passengers. Within this structure however the rights of people with a disability can be respected. When I assert those rights I am not liked--I am deemed a "problem". Perhaps if other passengers supported me and the airlines realized this would occur my rights might not be violated in the first place. I might even be treated with respect. I hope one day to have this sort of experience.
I request a complete and thorough review of the actions of staff today.. at the Redmond Oregon Airport. Cameron Clark reports, from the Redmond, Oregon Airport today.. """"i witnessed today, what i consider to be the worst of humanity.
standing in line at an @alaska airlines ticket check in, in redmond oregon, i watched as a disabled/mentally and physically challenged couple were left standing in the front of a line by the ticket attendant, melissa, who didn't say a word- no "final call, redmond to seattle"-- no "if you are flying to seattle, it's too ...
late to make this flight," etc-- nothing.
when a different agent appeared 1/2 hour later-- the flight still had not left. i asked for a quick "side bar" with the new agent-- telling her that this couple needed some leeway-- some additional help. she quickly informed me that "we treat every single customer the exact same here"-- she was annoyed by my insistence and advocacy. i tried to explain to her that her colleague had left the man and his companion alone, without saying a word to them. that they were "different" and that it would be ok for her to make exceptions for them (uttering something like, "exceptional circumstances sometimes require, exceptional responses").
melissa finally agreed to try to get the man on the flight-- but he couldn't bring his luggage (ug).
he had a hard time walking-- no one offered him a wheelchair or asked how they could be helpful. he stumbled off toward the safety inspection line.
predictably, he didn't understand/comprehend their restriction of his luggage, and got stuck in security.
while this was going on, the ticket attendant and myself were continuing to have quiet words about how they needed extra help-- she told me that "i didn't know the whole story"-- that he had the "same problem yesterday, showing up late to his first flight." i told her that i thought there was a real reason he was struggling to make it anywhere on time, and that this was cause for some compassion and some exceptions to rules, and some additional assistance. by now i was fully annoying her. she had her rules, and she was growing tired of my moral compass.
security ended up sending the man back, telling him in the confusion around his luggage that there was no longer enough time for him to make his airplane, without the plane running late.
the original attendant, melissa, returned, and lightly shamed the couple for being late for the second time in a row, telling them there was no way the man could get to bellingham before 9pm now.
the man and woman broke into tears. his "nervous system hurky/jurkyness" became profound. he begged her to help him. nothing.
i asked tiffany to go on with the kids, that i wanted to stick around and advocate for this couple for the 20 minutes i could and still make my own flight...
i asked the man for his name. "brent" he and his companion were easily 70 something. he was crying something fierce by now. i asked him what his condition was. he said he had late stage parkinsons, and that his companion had MS.
i asked to speak to the on site manager- a man named "jim cook." jim listened to me politely tell him the story about the man with parkinsons, and the woman with MS, and how none of his staff did anything to offer them additional assistance when it was clear to all 20 of us in line, how much they needed it and deserved it, and then he explained to me that the "laws don't allow alaska airlines to provide anyone, for any reason "special treatments." i wrote that comment down, word for word. he responded by saying, "so great, you are going to take me completely out of context aren't you?" i said, "what other context is there?" i asked you why your staff didn't help these people, and, in that exact context, you backed up your employee who told me that everyone is treated exactly alike. he stood by this position.
the end of this story is sad to the core. after wrapping up with mr. cooke, i talked to brent for a bit longer.
this trip- redmond to seattle/seattle to bellingham, was allowing him to see his daughter one final time, who works on the ferry system and is out on the water for most of her time-- she was scheduled to meet him in bellingham at 3pm today. he said that it was a "bucket list" item that he could no longer realize. i asked him if she could get off the ferry and wait for him tomorrow-- and he said that she was only available for this brief time today-- that he was to join her on the ferry, and that otherwise she'd be out on the water for days-- his trip was done. he couldn't re-schedule. he was simply, now, in defeat, asking for his money back.
what part of this story is "ok" in any way?
what happened to our collective sense of decency, of compassion, of our disposition to help those in need of extra help.
alaska airlines. you broke a man's heart today. you maintained your policy, and ignored an opportunity to do the right thing.
you broke my heart too.
if i knew who to contact, i would contact them and invite them to pay for this man's daughters unpaid leave, and provide her a ticket to come see her father? short of that, i know of nothing that could undo the inhumanity i witnessed today.
blech.
I have no doubt this is an accurate description of the incident. It would in part reflect my experience every time I fly. Airline personnel are routinely rude to people with a disability. When I show up at a gate I do not even need to utter a word--the gate agent sees me as nothing but extra work and a hassle to deal with. When I fly I have the plague. Using a wheelchair and flying is a miserable experience. If I am lucky and all goes smoothly I will only be delayed about an hour. If things go wrong, and they often do, much worse things can happen than just being delayed. With this background in place nothing reported above is a surprise. What is a surprise is the reaction--over 42,000 people have noted they like this story and are upset with Alaska Airlines. This will surely sound like sour grapes but where are all these out raged people when I fly and get treated like dirt by airline personnel? I cannot think of a single incident when I was supported by a fellow passenger. Once every few years a passenger will look at me as they pass and say something to the effect they are sorry I am being treated so badly. This summer as I waited and waited and waited for assistance well after every passenger exited the plane the pilot for the next flight looked at me puzzled and asked "Are you still waiting?" Yes, I replied. He said "You guys who use wheelchair really have it rough" and then entered the cock pit and closed the door.
The point of my two stories is simple and will negate the sour grapes aspect of this post: when one observes an injustice speak up. Offer your support. Take the risk and tell airline personnel you are offended by the way a fellow passenger is treated. And I know this is a risk. When people fly once they enter an airport thanks to the Patriot Act they give up their civil rights. All people must endure the humiliation ritual performed by the TSA. I get crowds need to be controlled. I get people have to get from point A to point B. I get airlines need to operate efficiently and maintain rigid control of passengers. Within this structure however the rights of people with a disability can be respected. When I assert those rights I am not liked--I am deemed a "problem". Perhaps if other passengers supported me and the airlines realized this would occur my rights might not be violated in the first place. I might even be treated with respect. I hope one day to have this sort of experience.
Saturday, August 4, 2012
Olympics and Disability
If the popular press is to be believed the Olympic ratings are through the roof. NBC has the broadcast rights to the Olympics and are milking the event for everything it is worth. I dislike the coverage--it is all tape delayed and I can sense the athletic stampede for corporate sponsorship. This may sound like sour grapes but it not meant as such. This is what elite athletes do and cannot blame them. This is how a small fortune can be made.
A few people with a disability are competeing. I read about a blind archer that won a gold medal. No name was provided in most news accounts--just"blind archer". No gender, no age, no nationality. Think dehumanizing. Would such a headline or brief filler about a typical athlete exist? No way. I doubt I will ever read "bipedal gold medal winner". The press has largely ignored disability issues and sports. But this will change when Oscar Pistorius runs. Pistorius is a sensation. He is a hyped athlete, perhaps the first such athlete with a disability to exist. He is the Blade Runner, the fastest man with no legs. A great tag line if there ever was one. I have read everything I can about Pistorius. I am not impressed. I groan when I hear him say he is not disabled. I groan not because of the statement but rather the missed opportunity. There are so many other ways he could talk about disability. zlike it or not he is asked all the time. I am sure he is weary of the subject. I refuse to be critical of him. He is not an academic theorist or disability rights advocate. He is a world class athlete. He is a South African so his experience with disability is very different from what an American would experience. In short, cut him a lot of slack--he is an athlete first and foremost.
Today started what will likely be a number of articles about Pistorius. All mention his disability first. All mention his battle to compete against typical athletes. All wonder if it is fair for him to run--many imply he has an unfair advantage with his protheses. Demeaning comments abound. In the Wall Street Journal today. One athlete was quoted as saying "It takes a lot of courage and confidence to do what he is doing". This is typical super cripple propaganda. There is no doubt as next week progresses Pistorius will become a big story. How it will be framed will be split into two categories. First, does he have an advantage because of his protheses? I doubt this debate will be grounded in scientific reality and opinions will be screamed at high decibel levels. Second, he will be portrayed as a super cripple--an inspiration to all other amputees. I am sure they will trot out images of him running next to little kids with no limbs as well. I am equally sure some veterans will be exploited and patriotic music in the background. And lost in all this is the most basic aspect of Pistorius life--he is just another athlete trying to win a gold medal.
In a world that does not exist I could imagine how Pistorius could be used. He could be a tease to lead NBC into coverage of the Paralympic games. Pistorius could be a color commentator and explain the rules of adaptive sports. The viewing audience would tune in nightly to see thrilling competition. It is too bad no one will see the Paralympics. It will not be broadcast in the United States. In about six months a special will appear on NBC condensing the games into 90 minutes of inspiring trash. Worse yet, it will be broadcast once at 3:30PM, perhaps in the Fall when every American interested in sports is watching professional football. If some TV executives were smart they would push to broadcast the Paralympics. The X Games prominently feature mono skier races to a receptive and enthusiastic audience. In other words it is a rating winner. If given a chance, I suspect the Paralympic Games could be a real ratings winner. I just wish they were given a chance.
A few people with a disability are competeing. I read about a blind archer that won a gold medal. No name was provided in most news accounts--just"blind archer". No gender, no age, no nationality. Think dehumanizing. Would such a headline or brief filler about a typical athlete exist? No way. I doubt I will ever read "bipedal gold medal winner". The press has largely ignored disability issues and sports. But this will change when Oscar Pistorius runs. Pistorius is a sensation. He is a hyped athlete, perhaps the first such athlete with a disability to exist. He is the Blade Runner, the fastest man with no legs. A great tag line if there ever was one. I have read everything I can about Pistorius. I am not impressed. I groan when I hear him say he is not disabled. I groan not because of the statement but rather the missed opportunity. There are so many other ways he could talk about disability. zlike it or not he is asked all the time. I am sure he is weary of the subject. I refuse to be critical of him. He is not an academic theorist or disability rights advocate. He is a world class athlete. He is a South African so his experience with disability is very different from what an American would experience. In short, cut him a lot of slack--he is an athlete first and foremost.
Today started what will likely be a number of articles about Pistorius. All mention his disability first. All mention his battle to compete against typical athletes. All wonder if it is fair for him to run--many imply he has an unfair advantage with his protheses. Demeaning comments abound. In the Wall Street Journal today. One athlete was quoted as saying "It takes a lot of courage and confidence to do what he is doing". This is typical super cripple propaganda. There is no doubt as next week progresses Pistorius will become a big story. How it will be framed will be split into two categories. First, does he have an advantage because of his protheses? I doubt this debate will be grounded in scientific reality and opinions will be screamed at high decibel levels. Second, he will be portrayed as a super cripple--an inspiration to all other amputees. I am sure they will trot out images of him running next to little kids with no limbs as well. I am equally sure some veterans will be exploited and patriotic music in the background. And lost in all this is the most basic aspect of Pistorius life--he is just another athlete trying to win a gold medal.
In a world that does not exist I could imagine how Pistorius could be used. He could be a tease to lead NBC into coverage of the Paralympic games. Pistorius could be a color commentator and explain the rules of adaptive sports. The viewing audience would tune in nightly to see thrilling competition. It is too bad no one will see the Paralympics. It will not be broadcast in the United States. In about six months a special will appear on NBC condensing the games into 90 minutes of inspiring trash. Worse yet, it will be broadcast once at 3:30PM, perhaps in the Fall when every American interested in sports is watching professional football. If some TV executives were smart they would push to broadcast the Paralympics. The X Games prominently feature mono skier races to a receptive and enthusiastic audience. In other words it is a rating winner. If given a chance, I suspect the Paralympic Games could be a real ratings winner. I just wish they were given a chance.
Friday, July 27, 2012
Trisomy 13 and 18: How is Life Valued?
I deeply admire the work of Barb Farlow. I doubt many readers in the United States will know who she is. This is unfortunate as Farlow is all too rare in that she can write with great passion, steely resolve and ruthlessly uses facts to prove her points. In 2005 Farlow gave birth to Annie who had Trisomy 13 a rare condition. Most babies that receive this prenatal diagnosis are not brought to term. After much angst Farlow decided to give birth, a decision that was out of the norm. When her daughter Annie was born Farlow was relieved that her daughter did not have the common brain and heart defects associated with Trisomy. In the Hastings Center Report Farlow wrote that she and her husband wanted to give "Annie the same chances as a child without disabilities". In short, Farlow was realistic and knew Annie's life expectancy would likely be very short--Annie in fact died after just 80 days. As a parent this gives me the chills, it truly shakes me to the core as I cannot imagine losing a child. What shook Farlow extended far beyond dealing with the death of her daughter. After Annie's death Farlow requested Annie's medical records and within hours knew something was profoundly amiss. Without consent her daughter was labeled "not for intubation". This was the first revelation that would lead to many more that undoubtedly changed the direction of Farlow's life. Farlow is now an advocate for families with a child that has Trisomy and is fighting what I would label a good fight. What is she fighting for? For ethicists and physicians to acknowledge that children with Trisomy life should be valued.
In the Journal of Pediatrics Farlow along with Ben Wilfond and Anne Janier wrote "The Experiences of Families with Children with Trisomy 13 and 18 in Social Networks." This article calls into question the belief that Trisomy is a "lethal disorder". I am not questioning the mortality rate, only 6-12% of babies with Trisomy live longer than a year. The American Academy of Pediatrics Neonatal recommends against resuscitation. Children with Trisomy also have profound neurodevelopmental disabilities if they survive. Trisomy is without question a grim condition. However grim the condition is it does not mean children like Farlow's daughter Annie life lacks value. And this is where Farlow and web based social networks can and have played a key role. It is the parents of children with Trisomy that have called into question the belief Trisomy is "lethal". According to the article in Pediatrics parents were told Trisomy was incompatible with life. A child with this condition would suffer, live a meaningless life, ruin a marriage or harm a family. The message here is about as subtle as a brick thrown through a plate glass window--let your child die.
While I am not surprised by the article findings I hope it is a real eye opener for many physicians. In spite of profound disabilities and a short life virtually all parents reported a positive family life. Parents believed their children with Trisomy had a good quality of life. By itself this is critically important. In typical academic prose the authors conclude:
Our results suggest that there are many areas in which the parental experience of having a child with T13-18 differs profoundly from the “conventional” view within the medical community. Recently, many articles have been published pertaining to the ethical and medical management of children with T13-18. The quality of life of the child living with T13-18 is often described as a justification for not providing interventions for these diagnoses.
Yikes does this sound familiar to me. Quality of life assessments are incredibly subjective. In fact I have spent the last 30 years railing against the beliefs of others who deem my quality of life inherently inferior simply because I am paralyzed. If we as a society permit others to judge people with a disability as inferior abuse will remain rampant. The ADA will continue to be ignored. Thus when I read the article in question I immediately thought of a recent article in another medical journal Lancet. The WHO has reported that children with disabilities are four times more likely to experience violence when compared to typical nondisabled children. In the words of Etienne Krug, Director of WHO's Department of Violence and Injury Prevention and Disability "children with disabilities are disproportionately vulnerable to violence and their needs have been neglected for far too long." Why are children with disabilities abused? Risk factors include stigma, discrimination and ignorance about disability all of which are social problems.
One last point: I got to meet Barb Farlow earlier this month and went to the Hockey Hall of Fame with her two youngest sons and her eldest son. Spending the day with the Farlow family brought back a flood of warm memories--I am the product of a large Catholic family. I had great fun the day we met and was delighted to meet another person dedicated to protecting and advocating for the rights of people with a disability. We may be few in numbers but our resolve is strong.
In the Journal of Pediatrics Farlow along with Ben Wilfond and Anne Janier wrote "The Experiences of Families with Children with Trisomy 13 and 18 in Social Networks." This article calls into question the belief that Trisomy is a "lethal disorder". I am not questioning the mortality rate, only 6-12% of babies with Trisomy live longer than a year. The American Academy of Pediatrics Neonatal recommends against resuscitation. Children with Trisomy also have profound neurodevelopmental disabilities if they survive. Trisomy is without question a grim condition. However grim the condition is it does not mean children like Farlow's daughter Annie life lacks value. And this is where Farlow and web based social networks can and have played a key role. It is the parents of children with Trisomy that have called into question the belief Trisomy is "lethal". According to the article in Pediatrics parents were told Trisomy was incompatible with life. A child with this condition would suffer, live a meaningless life, ruin a marriage or harm a family. The message here is about as subtle as a brick thrown through a plate glass window--let your child die.
While I am not surprised by the article findings I hope it is a real eye opener for many physicians. In spite of profound disabilities and a short life virtually all parents reported a positive family life. Parents believed their children with Trisomy had a good quality of life. By itself this is critically important. In typical academic prose the authors conclude:
Our results suggest that there are many areas in which the parental experience of having a child with T13-18 differs profoundly from the “conventional” view within the medical community. Recently, many articles have been published pertaining to the ethical and medical management of children with T13-18. The quality of life of the child living with T13-18 is often described as a justification for not providing interventions for these diagnoses.
Yikes does this sound familiar to me. Quality of life assessments are incredibly subjective. In fact I have spent the last 30 years railing against the beliefs of others who deem my quality of life inherently inferior simply because I am paralyzed. If we as a society permit others to judge people with a disability as inferior abuse will remain rampant. The ADA will continue to be ignored. Thus when I read the article in question I immediately thought of a recent article in another medical journal Lancet. The WHO has reported that children with disabilities are four times more likely to experience violence when compared to typical nondisabled children. In the words of Etienne Krug, Director of WHO's Department of Violence and Injury Prevention and Disability "children with disabilities are disproportionately vulnerable to violence and their needs have been neglected for far too long." Why are children with disabilities abused? Risk factors include stigma, discrimination and ignorance about disability all of which are social problems.
One last point: I got to meet Barb Farlow earlier this month and went to the Hockey Hall of Fame with her two youngest sons and her eldest son. Spending the day with the Farlow family brought back a flood of warm memories--I am the product of a large Catholic family. I had great fun the day we met and was delighted to meet another person dedicated to protecting and advocating for the rights of people with a disability. We may be few in numbers but our resolve is strong.
Wednesday, July 11, 2012
$pecial Education
If Americans despise one thing it is the establishment of a set of "special" rules for others. In part this is why I have always hated the term "special education". There is nothing "special" about "special education". In fact I would maintain "special education" is merely different and far too often an inferior education. All those who fall under the rubric "special education" are not special at all. So called "special education" students are instead merely different from the norm. They do not learn at the prescribed rate or cannot physically navigate the educational environment. For me, this would have meant I had to use the "special bus"--though no such bus existed when I was a kid. For others, "special education" can mean a host of different things. Hence the federal government has required all public schools to offer "special education" in the form of an IEP, Individual Education Plan. This is far from perfect but a vast improvement over the bad days. Those bad days involved barring children with disabilities from receiving a public education. Yes, as late as the mid 1970s students with disabilities were not legally entitled to a public education. People like me were deemed a fire hazard or our presence alone was too upsetting to other children. Millions of people with a disability were denied an education and shunted off to institutions. In fact I tell people had I been born in 1950 and not 1960 I would have been sent to an institution and would have never received a formal education.
The history of discrimination directed at people with a disability is virtually unknown outside of the disability community. It is simply not part of secondary education and is rarely taught at the university level. The resulting ignorance on the part of the general public has consequences for so called "special education" students today. Specifically, parents and the general public deeply resent the money spent on "special education". Opposition to "special education" is rampant. For example, in last Sunday's tabloid the New York Post published a short commentary by David Seifman. In "$pecial School Bus". Seifman wrote that the NYC Department of Education will spend $100,000 transporting a single student with severe disabilities to school. According to Seifman, "the student has debilitating conditions that require an advanced life-support ambulance, specifically one operated by Park Avenue Ambulance, which will be paid as much as $96,100 to cover his rides during the 10-month school year". I have no idea if Seifman is correct in his assessment of the cost or condition of the student in question. But I do know what the general public will think. Why the hell are we spending $100,000 a year to transport a kid to school who needs an ambulance with advanced life support? But wait it gets worse--or more expensive. According to the Department of Education, the child in question has been transported to school via ambulance since 2005. In 2010 alone the cost of transportation was $161,200 for this student. Seifman goes on to tell readers that costs for the 55,000 "special education" students amount to a staggering $712 million in 2010 and is projected to cost $805 million dollars this year. These sort of numbers makes an accountant blanch and parents screech in horror. I can just hear parents now: "My kid has to bring his own supplies to school and we spend over $100,000 to transport one kid to school via ambulance! What a waste of money".
Who do we blame for the great expenditure of money on one "special education" student? The Federal Government. Seifman writes: "its only one case but demonstrates how the city is caught between a rock and a had place when it comes to special education, which is governed by state and federal mandates that the city has no choice but to follow, regardless of cost. A student's individual education plan dictates services he or she will receive, and that includes transportation". Let me translate this sentence and its implied meaning: if it were up to me and anyone else with an ounce of common sense I would cut out transportation for this student in a heartbeat. This sort of expenditure is nothing short of wasteful. Spend this money on the "normal" kids who are ignored and under funded by the school. If you think I am being particularly jaundiced I beg to differ. I went to plenty of school board meetings and I noted an immediate pattern--when it came to cutting the budget the first line item eliminated was anything and everything related to improved wheelchair access, transportation, and "special education".
What no one wants to discuss is the long range consequences. What happens if we cut "special education" to the bare bones? What happens to students who learn they are second class citizens who we have no investment in educating? What sort of life will these students have? Will such students think they are destined to be unemployed for their entire lives? Will they be happy for life long hand outs? I would contend we cannot afford to provide an inferior education to so called "special education" students. If we do this, we will have a perpetual underclass of people who will need life time supports. Just how much will that cost taxpayers? Essentially we can invest in education or invest in institutions to house a multitude of people for their entire lives. We can listen to people like Seifman who cater to the lowest common denominator or we can learn from our past mistakes--like barring people with a disability from a public school education.
The history of discrimination directed at people with a disability is virtually unknown outside of the disability community. It is simply not part of secondary education and is rarely taught at the university level. The resulting ignorance on the part of the general public has consequences for so called "special education" students today. Specifically, parents and the general public deeply resent the money spent on "special education". Opposition to "special education" is rampant. For example, in last Sunday's tabloid the New York Post published a short commentary by David Seifman. In "$pecial School Bus". Seifman wrote that the NYC Department of Education will spend $100,000 transporting a single student with severe disabilities to school. According to Seifman, "the student has debilitating conditions that require an advanced life-support ambulance, specifically one operated by Park Avenue Ambulance, which will be paid as much as $96,100 to cover his rides during the 10-month school year". I have no idea if Seifman is correct in his assessment of the cost or condition of the student in question. But I do know what the general public will think. Why the hell are we spending $100,000 a year to transport a kid to school who needs an ambulance with advanced life support? But wait it gets worse--or more expensive. According to the Department of Education, the child in question has been transported to school via ambulance since 2005. In 2010 alone the cost of transportation was $161,200 for this student. Seifman goes on to tell readers that costs for the 55,000 "special education" students amount to a staggering $712 million in 2010 and is projected to cost $805 million dollars this year. These sort of numbers makes an accountant blanch and parents screech in horror. I can just hear parents now: "My kid has to bring his own supplies to school and we spend over $100,000 to transport one kid to school via ambulance! What a waste of money".
Who do we blame for the great expenditure of money on one "special education" student? The Federal Government. Seifman writes: "its only one case but demonstrates how the city is caught between a rock and a had place when it comes to special education, which is governed by state and federal mandates that the city has no choice but to follow, regardless of cost. A student's individual education plan dictates services he or she will receive, and that includes transportation". Let me translate this sentence and its implied meaning: if it were up to me and anyone else with an ounce of common sense I would cut out transportation for this student in a heartbeat. This sort of expenditure is nothing short of wasteful. Spend this money on the "normal" kids who are ignored and under funded by the school. If you think I am being particularly jaundiced I beg to differ. I went to plenty of school board meetings and I noted an immediate pattern--when it came to cutting the budget the first line item eliminated was anything and everything related to improved wheelchair access, transportation, and "special education".
What no one wants to discuss is the long range consequences. What happens if we cut "special education" to the bare bones? What happens to students who learn they are second class citizens who we have no investment in educating? What sort of life will these students have? Will such students think they are destined to be unemployed for their entire lives? Will they be happy for life long hand outs? I would contend we cannot afford to provide an inferior education to so called "special education" students. If we do this, we will have a perpetual underclass of people who will need life time supports. Just how much will that cost taxpayers? Essentially we can invest in education or invest in institutions to house a multitude of people for their entire lives. We can listen to people like Seifman who cater to the lowest common denominator or we can learn from our past mistakes--like barring people with a disability from a public school education.
Tuesday, July 10, 2012
Assisted Suicide: I do Have Reasons to Be Afraid
I consider myself to be a friend of Ann Neumann. This sentiment is shared by Ann. Our friendship is a testament to the fact that two people who vigorously disagree with one another can maintain a valued friendship. Ann is in favor assisted suicide legislation. I am staunchly opposed. We have engaged in good natured debate on this subject and more broadly about religion. We have found areas where we are in full agreement. For instance we are both extremely critical of the Catholic Church. We are both critical of pro-life groups and how they have latched on to disability rights opposition to assisted suicide. We each find the hypocracy of pro life groups distasteful. I suspect we also read each others blogs. I do not usually comment on her posts at the Other Spoon but I did respond to her post of June 11 "When the Dying Want to Die". I left a cranky comment and Ann addressed my comment on July 7 in her post "Quick Links: You Should Be Reading..."
I will quote Ann in full:
read Bill Peace's comment to my prior post! Bill and I are friends; he's disabled and I'm not; we disagree on a number of things--and not always respectfully, of course--but we keep the friendship going. My response to his comment is: What--legislatively, practically, pragmatically--does his experience as a discriminated member of society have to do with the legalization of aid in dying (or even removal of terminal patients from unhelpful treatments, etc)?
I think I know what Bill's answer would be. Discrimination is real and so is fear. People confuse and conflate disability with terminality all the time. I would never take him to task for how he feels. Or over not seizing his autonomy from hypothetical others, including "pro-life" organizations that have worked very hard to recruit disabled individuals and groups to "their side"--with scary threats of a "culture of death" just waiting around to kill off the "abnormal." But--and this is really, really important to my point--Bill's had to fight his entire life to make his own health care decisions, to convince everybody that his pain and his life are worth something to him. Individuals wanting to do the same are no threat to Bill.
I do not know what Ann's experience with disability is. I suspect it is limited. In fact, I suspect I am her only friend with what society would deem a severe disability. By itself this is not unusual. In fact I often feel like an endangered species whenever I go out as I am always the only person with a disability present. Regardless, Ann's words fall flat for me. On the one hand she acknowledges discrimination is present and terminal illness is routinely confused with disability. On this we agree. Yet I get a sense Ann is content to let me fight for my rights in isolation. I am afterall highly unusual. She also reduces such a fight to be about "feelings". She would also "never take me to task" for how I feel. I can assure you my fight is not with "hypothetical others". My fight is very real. It involves baseless prejudice acted upon by real people who would like to see me and all the other cripples shut up and quietly and gratefully accept what society deems appropriate to give us. Real people consider me an expensive burden, an economic drain. Real people tell me "I would rather be dead than use a wheelchair". Real people knowingly oppose disability rights. Real people go to great lengths to avoid compliance with the ADA. Real people routinely cut budgets and the first line item to go is always about access. Real people think I cannot read. Real people avoid me because they fear disability. Real people worry I am contagious. Real people with children grab their kids hand in fear and pull their child away from me. I need not go on as you surely get the point. Bigotry is very real, compromises my life and has in fact destroyed countless lives.
Ann asks what my experience with discrimination has to do with legislation for "aide in dying". First, the term "aid in dying" by itself is grossly misleading. It is designed to put people's mind at ease with kind and benign words. Do not be fooled, "aide in dying" is assisted suicide. Second, my experience with discrimination has everything to do with legalizing assisted suicide. Ann is not in an at risk population. I certainly am as a person with a severe disability. Thus we have a two tier system--two ways of dealing with people who want to die. For example, if Ann expressed a desire to die in the face of a routine but non lethal illness such a request would be met with staunch opposition. She would be required to see a psychiatrist and most likely be medicated. All would be opposed to Ann ending her life. If I expressed a similar desire with a similar non life threatening illness the response would radically different. Most if not all would think I have suffered enough and that my request is reasonable. No psychiatrist will be called. No prescriptions given. I would indeed be given aide in dying. The reason for this is simple as it is complex and deadly--my life is not valued. Third, based on my experience in 2010 with a life threatening wound, many assumptions are made about the lives of people with a disability. Those assumptions are made by health care professionals who are not free of bias. Most doctors have no experience with people such as myself who are paralyzed. In fact not a single hospitalist I met had ever treated a paralyzed man. Like many others, the hospitalists assumed I was single, unemployed, and lived in a nursing home. In short, they believed I had nothing to live for. Again, this highlights the two tier system. If I walked in the door would they have made the same assumptions? Not a chance. For me, these dangers are very real and if assisted suicide legislation is passed people with a disability will die. I may die needlessly.
Fighting for one's civil rights and fighting for the right to die is a misleading analogy. The fight for civil rights is about the right to live free of baseless prejudice. That is what the ADA was supposed to do for me and millions of other Americans. The fight for the so called right to die is inherently problematic. Unlike Ann, I see no reason for such legislation. Palliative care has advanced significantly and there is no reason why people should die in pain--this is often sited by advocates as the reason why we need assisted suicide legislation. This is patently false but polls well for groups like Compassion and Choices. In fact, a physician can medicate a patient to relieve pain even if death might occur. The reality is people choose to die in Oregon and Washington because their perceived quality of life is compromised. No one asks the very basic question, why, why is their quality of life compromised? By way of answering this question on the quality of life let me briefly compare my life to others with a paralyzing injury who have struggled or died. We all shared the same legal rights. We were all equal in the eyes of the law. We all had paralyzing injuries. Yet I live a rich and vibrant life while others such as Dan Crews has expressed a desire to die and Christina Symanski actually ended her life slowly and painfully. Why are our lives so radically different? Some may believe my analogy is flawed. I am a paraplegic while Crews and Symanski were quadriplegics. The difference is significant but not enough to express a desire to die much less act out on it. For me, the difference is the social response to disability. This in turn gets me back to the two tier system. It is present even within the minutia of disability itself. While my life is not valued I suspect the life of a quadriplegic is valued even less than my life. This is very hard for me to fathom and makes me wonder just how much can we devalue people with a disability?
I will quote Ann in full:
read Bill Peace's comment to my prior post! Bill and I are friends; he's disabled and I'm not; we disagree on a number of things--and not always respectfully, of course--but we keep the friendship going. My response to his comment is: What--legislatively, practically, pragmatically--does his experience as a discriminated member of society have to do with the legalization of aid in dying (or even removal of terminal patients from unhelpful treatments, etc)?
I think I know what Bill's answer would be. Discrimination is real and so is fear. People confuse and conflate disability with terminality all the time. I would never take him to task for how he feels. Or over not seizing his autonomy from hypothetical others, including "pro-life" organizations that have worked very hard to recruit disabled individuals and groups to "their side"--with scary threats of a "culture of death" just waiting around to kill off the "abnormal." But--and this is really, really important to my point--Bill's had to fight his entire life to make his own health care decisions, to convince everybody that his pain and his life are worth something to him. Individuals wanting to do the same are no threat to Bill.
I do not know what Ann's experience with disability is. I suspect it is limited. In fact, I suspect I am her only friend with what society would deem a severe disability. By itself this is not unusual. In fact I often feel like an endangered species whenever I go out as I am always the only person with a disability present. Regardless, Ann's words fall flat for me. On the one hand she acknowledges discrimination is present and terminal illness is routinely confused with disability. On this we agree. Yet I get a sense Ann is content to let me fight for my rights in isolation. I am afterall highly unusual. She also reduces such a fight to be about "feelings". She would also "never take me to task" for how I feel. I can assure you my fight is not with "hypothetical others". My fight is very real. It involves baseless prejudice acted upon by real people who would like to see me and all the other cripples shut up and quietly and gratefully accept what society deems appropriate to give us. Real people consider me an expensive burden, an economic drain. Real people tell me "I would rather be dead than use a wheelchair". Real people knowingly oppose disability rights. Real people go to great lengths to avoid compliance with the ADA. Real people routinely cut budgets and the first line item to go is always about access. Real people think I cannot read. Real people avoid me because they fear disability. Real people worry I am contagious. Real people with children grab their kids hand in fear and pull their child away from me. I need not go on as you surely get the point. Bigotry is very real, compromises my life and has in fact destroyed countless lives.
Ann asks what my experience with discrimination has to do with legislation for "aide in dying". First, the term "aid in dying" by itself is grossly misleading. It is designed to put people's mind at ease with kind and benign words. Do not be fooled, "aide in dying" is assisted suicide. Second, my experience with discrimination has everything to do with legalizing assisted suicide. Ann is not in an at risk population. I certainly am as a person with a severe disability. Thus we have a two tier system--two ways of dealing with people who want to die. For example, if Ann expressed a desire to die in the face of a routine but non lethal illness such a request would be met with staunch opposition. She would be required to see a psychiatrist and most likely be medicated. All would be opposed to Ann ending her life. If I expressed a similar desire with a similar non life threatening illness the response would radically different. Most if not all would think I have suffered enough and that my request is reasonable. No psychiatrist will be called. No prescriptions given. I would indeed be given aide in dying. The reason for this is simple as it is complex and deadly--my life is not valued. Third, based on my experience in 2010 with a life threatening wound, many assumptions are made about the lives of people with a disability. Those assumptions are made by health care professionals who are not free of bias. Most doctors have no experience with people such as myself who are paralyzed. In fact not a single hospitalist I met had ever treated a paralyzed man. Like many others, the hospitalists assumed I was single, unemployed, and lived in a nursing home. In short, they believed I had nothing to live for. Again, this highlights the two tier system. If I walked in the door would they have made the same assumptions? Not a chance. For me, these dangers are very real and if assisted suicide legislation is passed people with a disability will die. I may die needlessly.
Fighting for one's civil rights and fighting for the right to die is a misleading analogy. The fight for civil rights is about the right to live free of baseless prejudice. That is what the ADA was supposed to do for me and millions of other Americans. The fight for the so called right to die is inherently problematic. Unlike Ann, I see no reason for such legislation. Palliative care has advanced significantly and there is no reason why people should die in pain--this is often sited by advocates as the reason why we need assisted suicide legislation. This is patently false but polls well for groups like Compassion and Choices. In fact, a physician can medicate a patient to relieve pain even if death might occur. The reality is people choose to die in Oregon and Washington because their perceived quality of life is compromised. No one asks the very basic question, why, why is their quality of life compromised? By way of answering this question on the quality of life let me briefly compare my life to others with a paralyzing injury who have struggled or died. We all shared the same legal rights. We were all equal in the eyes of the law. We all had paralyzing injuries. Yet I live a rich and vibrant life while others such as Dan Crews has expressed a desire to die and Christina Symanski actually ended her life slowly and painfully. Why are our lives so radically different? Some may believe my analogy is flawed. I am a paraplegic while Crews and Symanski were quadriplegics. The difference is significant but not enough to express a desire to die much less act out on it. For me, the difference is the social response to disability. This in turn gets me back to the two tier system. It is present even within the minutia of disability itself. While my life is not valued I suspect the life of a quadriplegic is valued even less than my life. This is very hard for me to fathom and makes me wonder just how much can we devalue people with a disability?
Tuesday, June 26, 2012
More on Health Care: But Not From Me
Thanks to Elizabeth who left a comment on my last post I read What Health Insurance Means to Me at Busily Seeking...Continual Change. Wow, and I thought my words the last few days were harsh. I read this blog once in a while but for whatever reason it has fallen off my radar. I have always admired Jeneva Burroughs writing and found the below paragraph to be searing. I urge everyone to read the last two posts she has written about the health care debate.
During this election, I imagine very little will be said about healthcare, the only exception being Romney's undoubted promise to overturn "Obamacare," whatever that actually may be. Hovering behind him may be Paul Ryan, like the swordsman who beheaded Anne Boleyn, distracting our attention with homilies about hard work and shared sacrifice before he swings the arc of his sword behind us, neatly severing our intelligence from our primordial gut responses to the appeal of American individualism. He'll mop up our blood with Medicare vouchers and toss them to the crowd.
During this election, I imagine very little will be said about healthcare, the only exception being Romney's undoubted promise to overturn "Obamacare," whatever that actually may be. Hovering behind him may be Paul Ryan, like the swordsman who beheaded Anne Boleyn, distracting our attention with homilies about hard work and shared sacrifice before he swings the arc of his sword behind us, neatly severing our intelligence from our primordial gut responses to the appeal of American individualism. He'll mop up our blood with Medicare vouchers and toss them to the crowd.
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