I have been severely critical of David Paterson. My critiques are based on his many mistakes but one thing I have admired since he took office is his penchant for honesty. Honest or candid remarks are out of the norm for politicians and Paterson is not an ordinary Governor. When appointed Governor he quickly admitted to a history of drug use and extra marital affairs. His proactive approach caused some controversy but saved his job. In retrospect I cannot help but wonder if he regrets being appointed Governor and holding onto his job in those tenuous first weeks. I do know his career did not work as planned. In a luncheon this week Paterson stated that when he ran as lieutenant governor in 2006 along with Eliot Spitzer for governor he thought then Senator Hilary Clinton would win her efforts to become President. When this happened Paterson thought Governor Spitzer would appoint him to Clinton's vacated senate seat. In Paterson's own words he said "I did not sign up for this. I wanted to be lieutenant governor. I had this grand plan that Hilary Clinton was going to become president. Maybe the governor would appoint me to the senate".
Paterson's candid remarks are of interest because politicians rarely if ever publicly admit to such grand ambitions. It is also interesting to note Paterson's comments were made shortly after it was revealed the Obama administration supposedly does not want him to run for election in 2010. This must be a bitter pill for Paterson to swallow and he stated that he had "never heard of a president asking a sitting governor not to run. I thought it was very unusual and very unfair". Welcome to big time politics Mr. Paterson. While I may not like Paterson's actions since he assumed office, he was could not have come to power at a worse time. In my estimation virtually all of his problems do not stem from his mistakes but rather from a dismal economy and being forced to make exceedingly unpopular budget cuts. Paterson is smart enough to realize this. He stated "If you ever wanted to know the plan or course you could take to become unpopular, be governor of this state starting March 17, 2008. No matter who you are, I guarantee you, no one will like you". These too are exceedingly honest remarks and all too true. I amy not like Paterson's decisions but I do respect his honesty. How often to you get to write that about a politician?
Thursday, September 24, 2009
Wednesday, September 23, 2009
Starmer's Interim Guidelines a Slam Dunk for Assisted Suicide
I knew the guidelines released by Keir Starmer would be a victory for advocates of assisted suicide but I had no idea just how lopsided they would be. The new guidelines that go into force today may only be interim guidelines and are subject to debate before a final version is issued next year. However, don't let this technicality fool you nor be swayed by misleading statements by Keir Starmer who maintains "Assisted suicide has been a criminal offense for nearly 50 years and my interim policy does nothing to change that". Mr. Starmer is correct, assisted suicide is still against the law in Britain but if one actually commits this crime the odds of being prosecuted are non existent. Again, don't be misled by statement such as this: "There are no guarantees against prosecution and it is my job to ensure that the most vulnerable people are protected while at the same time giving enough information to those people like Mrs. Purdy who want to be able to make informed decisions about what actions they may choose". What a relief, Starmer is concerned about protecting the most vulnerable. Well, to all those vulnerable people out there I have a word of advise: watch out because your relatives and loved ones can kill you without fear of prosecution. In the words of Starmer: "We are proud of the way we temper justice with mercy. The decision not to prosecute provides essential flexibility to prosecutors ... the critical question I have considered is: what are the circumstances in which it is or is not in the public interest to prosecute a person against whom there is enough evidence to support the criminal offence of assisted suicide?"
The above begs the question who can commit suicide with assistance? People that assisted a suicide not likely to face charges include the following:
A victim that had a clear, settled and informed desire to commit suicide whose views were unequivocal.
A victim had a terminal illness, a severe and incurable physical disability or severe degenerative condition from which there was no possibility of recovery.
The victim had long-term care based needs with a wife, husband, partner, close relative or personal friend.
The victim was given minor assistance or influence.
Under these guidelines anyone in my family can "help" me die. I do indeed have a severe disability and there is no hope my paralysis will ever be cured. Thus the guidelines will permit my family to use Starmer's words act with "compassion". Compassion! My idea of compassion does not include assisted suicide. My idea of compassion does not include assisting people with "severe and incurable" disabilities kill themselves. My idea of compassion does not include hastening the death of those with severe degenerative conditions. My idea of compassion does not include killing those who are terminally ill. My idea of compassion does not include killing those I care for who may have a condition like Alzheimer's Disease. Starmer believes he is acting with compassion but I think his guidelines are inherently dangerous and grossly subjective. Rather than clarify the legality of assisted suicide he has opened the door for supposedly well meaning people to kill vulnerable people. And who comes to mind here? Daniel James' parents. Under Starmer's guidelines they would be considered compassionate people and free from prosecution. Given this, I am worried about a class of people that are not valued--people with a host of different disabilities. People like Debbie Purdy. People like me. People that experience a life altering disability. What will become of these people in a country that has instituted guidelines where assisted suicide is illegal but no one is prosecuted? Let me provide one example in which those that may mean well will in fact encourage another human being to needlessly end their life. Imagine this scenario: a young man has been in a car accident. He is from a working class background with little education and modest goals. He is an avid soccer player and self professed ladies man. He is told by his doctor that his spinal cord has been severed. He is paralyzed from the 8th cervical level down. He will never walk again, has no sensation throughout his body, and he has limited use of his hands. Sex is no longer possible. He will be "wheelchair bound", unable to transfer independently and be dependent upon personal care attendants for the rest of his life. He will be sent to a rehabilitation hospital when medically stable. Given the harsh reality described in an overwhelming negative fashion, this young man might decide life is not worth living. His family, like Daniel James' parents, may agree and help him end his life. No person will be prosecuted and no crime will have been committed. To me this is not compassion but a legal form of murder.
I know a good bit about compassion and vulnerability. I learned about this the hard way--I was vulnerable, i.e. morbidly sick as a child, and my parents showed great compassion caring for me. I learned some very hard lessons at a young age and was taught to never doubt my self worth or ability. I vividly recall when I was told I could not walk again my parents cried with me and whenever I started to doubt myself they would hiss with a vengeance: "Your legs may not work but the most important part of your body is perfectly intact, your brain, and you better start using it." The compassion and belief they showed in me was a force unto itself at a time when I was most vulnerable. Overtime I found my groove, realized that my disability was more of a social problem than an individual impediment to what I valued and wanted to achieve in life. Fast forward 30 years and I am a tax payer, father, teacher, writer, and lead a life that is as rich and rewarding as my neighbors all of whom walk. I will never forget how lucky I am because at the most vulnerable point in life received nothing more and nothing less than total support from my parents. In retrospect I know I could have been seduced via a perverse form of compassion to end my life. I could have been like Daniel James, dead within a year of my injury. This is exactly why the Daniel James case is so disturbing and why the guidelines set forth today by Starmer are down right dangerous. I have no doubt the elderly, terminally ill, or those with a severe disability will be encouraged to die. This will not be done with malicious intent but the end result will be death, needless death. Of course the words used will be spoken with the utmost compassion that I sincerely hope will never emerge from the mouths of those that love me.
The above begs the question who can commit suicide with assistance? People that assisted a suicide not likely to face charges include the following:
A victim that had a clear, settled and informed desire to commit suicide whose views were unequivocal.
A victim had a terminal illness, a severe and incurable physical disability or severe degenerative condition from which there was no possibility of recovery.
The victim had long-term care based needs with a wife, husband, partner, close relative or personal friend.
The victim was given minor assistance or influence.
Under these guidelines anyone in my family can "help" me die. I do indeed have a severe disability and there is no hope my paralysis will ever be cured. Thus the guidelines will permit my family to use Starmer's words act with "compassion". Compassion! My idea of compassion does not include assisted suicide. My idea of compassion does not include assisting people with "severe and incurable" disabilities kill themselves. My idea of compassion does not include hastening the death of those with severe degenerative conditions. My idea of compassion does not include killing those who are terminally ill. My idea of compassion does not include killing those I care for who may have a condition like Alzheimer's Disease. Starmer believes he is acting with compassion but I think his guidelines are inherently dangerous and grossly subjective. Rather than clarify the legality of assisted suicide he has opened the door for supposedly well meaning people to kill vulnerable people. And who comes to mind here? Daniel James' parents. Under Starmer's guidelines they would be considered compassionate people and free from prosecution. Given this, I am worried about a class of people that are not valued--people with a host of different disabilities. People like Debbie Purdy. People like me. People that experience a life altering disability. What will become of these people in a country that has instituted guidelines where assisted suicide is illegal but no one is prosecuted? Let me provide one example in which those that may mean well will in fact encourage another human being to needlessly end their life. Imagine this scenario: a young man has been in a car accident. He is from a working class background with little education and modest goals. He is an avid soccer player and self professed ladies man. He is told by his doctor that his spinal cord has been severed. He is paralyzed from the 8th cervical level down. He will never walk again, has no sensation throughout his body, and he has limited use of his hands. Sex is no longer possible. He will be "wheelchair bound", unable to transfer independently and be dependent upon personal care attendants for the rest of his life. He will be sent to a rehabilitation hospital when medically stable. Given the harsh reality described in an overwhelming negative fashion, this young man might decide life is not worth living. His family, like Daniel James' parents, may agree and help him end his life. No person will be prosecuted and no crime will have been committed. To me this is not compassion but a legal form of murder.
I know a good bit about compassion and vulnerability. I learned about this the hard way--I was vulnerable, i.e. morbidly sick as a child, and my parents showed great compassion caring for me. I learned some very hard lessons at a young age and was taught to never doubt my self worth or ability. I vividly recall when I was told I could not walk again my parents cried with me and whenever I started to doubt myself they would hiss with a vengeance: "Your legs may not work but the most important part of your body is perfectly intact, your brain, and you better start using it." The compassion and belief they showed in me was a force unto itself at a time when I was most vulnerable. Overtime I found my groove, realized that my disability was more of a social problem than an individual impediment to what I valued and wanted to achieve in life. Fast forward 30 years and I am a tax payer, father, teacher, writer, and lead a life that is as rich and rewarding as my neighbors all of whom walk. I will never forget how lucky I am because at the most vulnerable point in life received nothing more and nothing less than total support from my parents. In retrospect I know I could have been seduced via a perverse form of compassion to end my life. I could have been like Daniel James, dead within a year of my injury. This is exactly why the Daniel James case is so disturbing and why the guidelines set forth today by Starmer are down right dangerous. I have no doubt the elderly, terminally ill, or those with a severe disability will be encouraged to die. This will not be done with malicious intent but the end result will be death, needless death. Of course the words used will be spoken with the utmost compassion that I sincerely hope will never emerge from the mouths of those that love me.
Tuesday, September 22, 2009
Keir Starmer's Expected Chilling Clarity
I doubt more than a handful of Americans know who Keir Starmer is. In fact, I doubt a large number of British citizens know who Keir Starmer is. Don't let this lack of knowledge seduce you into thinking Starmer is not an important or powerful man. Starmer is in fact an extremely powerful public figure in Britain. Since last November Starmer has been the director of public prosecutions and thus head of the Crown Prosecution Service. This week Starmer will unveil guidelines on assisted suicide prompted by a string of very public cases. Foremost among these are Debbie Purdy, a woman who has MS and has expressed her strong desire to commit suicide. Ms. Purdy wants to know if her husband will be prosecuted if he assists her suicide. The other well known case is one I have already written about and concerns Daniel James. Last year James, a 23 year old man who experienced a spinal cord injury, with the help of his parents committed suicide. Starmer decide not to prosecute James' parents and at the time stated "This is a tragic case, involving as it does, the death of a young man in difficult and unique circumstances. The CPS had ample evidence to charge James's parents under the Suicide Act which states that it is a criminal offense to aid, counsel, or procure the suicide of another". Starmer did not minimize the seriousness of the offense but maintained Daniel James' desire to end his own life was not influenced by his parents. Starmer also believed if James's parents were convicted they would have received nothing more than a slap on the wrist.
The debate over assisted suicide since Daniel James ended his own life with his parents help has simmered without stop in Britain. I have followed this debate from afar as its implications extend well beyond the borders of Britain and are directly relevant to people with disabilities. This connection is obvious to me but a little background is needed. Debbie Purdy referred to above convinced the court in July of this year to direct Starmer as head of the Crown Protection Service to produce a policy statement on whether people who help someone kill themselves will be prosecuted. This policy is set to be issued Wednesday and is designed to clarify when individuals are most likely to be prosecuted when aiding someone to end their life. Although Starmer has been coy with the press prior to the release of the policy statement, he has told BBC News that "the general approach we've taken is to steer a careful course between protecting the vulnerable from those that might gain from hastening their death but also identifying those cases where nobody really thinks it's in the public interest to prosecute." What Starmer is really saying is that he does not want nor has he expressed any desire to prosecute people like Daniel James' parents. Thus do not get confused by Debbie Purdy story and the headlines of the last year. Purdy is of secondary importance, a means to an end for those pushing to make assisted suicide legal. The real issue, the test case, concerns Starmer's decision in 2008 not to prosecute Daniel James' parents.
The guidelines that will be released by Starmer on Wednesday are not merely of theoretical interest. In Starmer's estimation he is seeking to bring clarity to many people in Britain who are interested in ending their life. Undoubtedly the fact Daniel James and well over 100 others have gone to the Swiss suicide center Dignitas to die prompted this need for clarity. Let me be clear: Starmer's policy does not concern people who are terminally ill. Starmer's policy guidelines concern all people and I suspect will pave the way for people like Debbie Purdy to end their life without fear family members will be prosecuted for any and all assistance. This is why Daniel James is so important--his death has provided the much needed precedent and time for Starmer to clarify his thoughts. When Starmer decided not to prosecute James' parents he issued a lengthy explanation of his decision. That decision will have sweeping implications because it no longer concerns one young man who is paralyzed or those that express an interest in going to Dignitas. In an interview with the Guardian Starmer has stated that "The one thing I hope I have made clear is that this policy will cover assisted suicide wherever it takes place including England and Wales. It shouldn't be something that covers those that go to Switzerland and not those who can't afford to do so." To me this sounds like an endorsement of assisted suicide. Starmer is not changing the law but it seems crystal clear that any compassionate partner, loved one, or family member can end the life of someone who wants to die. This reinforces the public sentiment expressed about Daniel James' parents when news broke they took their son to Dignitas to die: they were loving parents in an impossible and singularly unique situation. They put their son's desires ahead of their own and selflessly helped him die. After all, who would want to live life paralyzed, "wheelchair bound" and in their estimation a "second class citizen". Starmer has been quoted that the police interviews with Daniel James' parents "would make you weep." What I want to know is what are James' parents and Starmer weeping about? Did they cry about James life as a second class citizen and what that means to others in a similar situation? Did they weep because people with spinal cord injuries in Britain encounter stigma at every turn and are unemployed in larger numbers? Did they weep because Daniel James had no housing options other than moving back home with his parents or an institution? Did Starmer consider the larger implications involved in not prosecuting Daniel James' parents? These are hard questions to answer, one's that don't garner headlines or pull at the heart strings of people. These questions are important because people with a disability have been sent a message by Daniel James' parents and Starmer's decision not to prosecute. The message is as simple as it is deadly. The life of a person with a disability is not as valuable as a person without a disability. There are no ifs, ands, or buts involved here. The message is not subtle: the life of people with a severe disability is very hard and we understand this suffering. We are willing to help end your life and your loved one's will not be prosecuted. The logical corollary is that people with a disability will be expected to feel like, well, just like Daniel James did, a second class citizen. As such, people with a disability are a burden upon others and will be made to feel a perverse obligation to end their supposed suffering.
The deadly logic above conveniently ignores the fact people with a disability, if they suffer at all, are suppressed not by a given bodily deficit but by the social stigma attached to such a deficit. For instance, I think my wheelchair is a liberating device and consider my paralysis to an integral part of who I am as a human being. In contrast, others see my wheelchair as symbol of disability, weakness, and limited expectations. In short, my life is a tragedy. This faulty line of reasoning is not only infuriating but has far reaching implications that extend beyond disability. If Starmer is not going to prosecute those that help people end their life what will he do about people who are eager to push the boundaries of the new guidelines? What will Starmer do with a man like Michael Irwin who wants assisted suicide made legal and is willing to help anyone end their own life? Can Irwin help hundreds of people die assuming he does not profit from their deaths? And where does one draw a line between assistance and encouragement? For instance, will people in Daniel James' situation immediately following a spinal cord injury be told their options are life with paralysis or death? Will those options be explained in a balanced manner? Will a person that has no experience really be able to make an informed decision in such a situation? In asking these questions and many others in this post I keep returning to Daniel James. His death and the actions of his parents haunt me. No matter how depressed I was when initially paralyzed I never considered ending my life. In fact the hardest thing I have been forced to cope with as a person with a disability is the knowledge that others think my life is somehow less sweet and worthwhile because I use a wheelchair. I get this message loud and clear as did Daniel James and his parents. Thus significant obstacles remain common place and prevent people with a disability from leading a rich and rewarding life. Some people like Daniel James are even willing to end their life because they cannot confront the social and practical inequities associated with paralysis. Worse yet, his loving parents are lauded for their actions and one man in a position of power is going to use this case to pave the way for the deaths of many others, some with and some without a disability. Surely we humans are capable of much, much more.
The debate over assisted suicide since Daniel James ended his own life with his parents help has simmered without stop in Britain. I have followed this debate from afar as its implications extend well beyond the borders of Britain and are directly relevant to people with disabilities. This connection is obvious to me but a little background is needed. Debbie Purdy referred to above convinced the court in July of this year to direct Starmer as head of the Crown Protection Service to produce a policy statement on whether people who help someone kill themselves will be prosecuted. This policy is set to be issued Wednesday and is designed to clarify when individuals are most likely to be prosecuted when aiding someone to end their life. Although Starmer has been coy with the press prior to the release of the policy statement, he has told BBC News that "the general approach we've taken is to steer a careful course between protecting the vulnerable from those that might gain from hastening their death but also identifying those cases where nobody really thinks it's in the public interest to prosecute." What Starmer is really saying is that he does not want nor has he expressed any desire to prosecute people like Daniel James' parents. Thus do not get confused by Debbie Purdy story and the headlines of the last year. Purdy is of secondary importance, a means to an end for those pushing to make assisted suicide legal. The real issue, the test case, concerns Starmer's decision in 2008 not to prosecute Daniel James' parents.
The guidelines that will be released by Starmer on Wednesday are not merely of theoretical interest. In Starmer's estimation he is seeking to bring clarity to many people in Britain who are interested in ending their life. Undoubtedly the fact Daniel James and well over 100 others have gone to the Swiss suicide center Dignitas to die prompted this need for clarity. Let me be clear: Starmer's policy does not concern people who are terminally ill. Starmer's policy guidelines concern all people and I suspect will pave the way for people like Debbie Purdy to end their life without fear family members will be prosecuted for any and all assistance. This is why Daniel James is so important--his death has provided the much needed precedent and time for Starmer to clarify his thoughts. When Starmer decided not to prosecute James' parents he issued a lengthy explanation of his decision. That decision will have sweeping implications because it no longer concerns one young man who is paralyzed or those that express an interest in going to Dignitas. In an interview with the Guardian Starmer has stated that "The one thing I hope I have made clear is that this policy will cover assisted suicide wherever it takes place including England and Wales. It shouldn't be something that covers those that go to Switzerland and not those who can't afford to do so." To me this sounds like an endorsement of assisted suicide. Starmer is not changing the law but it seems crystal clear that any compassionate partner, loved one, or family member can end the life of someone who wants to die. This reinforces the public sentiment expressed about Daniel James' parents when news broke they took their son to Dignitas to die: they were loving parents in an impossible and singularly unique situation. They put their son's desires ahead of their own and selflessly helped him die. After all, who would want to live life paralyzed, "wheelchair bound" and in their estimation a "second class citizen". Starmer has been quoted that the police interviews with Daniel James' parents "would make you weep." What I want to know is what are James' parents and Starmer weeping about? Did they cry about James life as a second class citizen and what that means to others in a similar situation? Did they weep because people with spinal cord injuries in Britain encounter stigma at every turn and are unemployed in larger numbers? Did they weep because Daniel James had no housing options other than moving back home with his parents or an institution? Did Starmer consider the larger implications involved in not prosecuting Daniel James' parents? These are hard questions to answer, one's that don't garner headlines or pull at the heart strings of people. These questions are important because people with a disability have been sent a message by Daniel James' parents and Starmer's decision not to prosecute. The message is as simple as it is deadly. The life of a person with a disability is not as valuable as a person without a disability. There are no ifs, ands, or buts involved here. The message is not subtle: the life of people with a severe disability is very hard and we understand this suffering. We are willing to help end your life and your loved one's will not be prosecuted. The logical corollary is that people with a disability will be expected to feel like, well, just like Daniel James did, a second class citizen. As such, people with a disability are a burden upon others and will be made to feel a perverse obligation to end their supposed suffering.
The deadly logic above conveniently ignores the fact people with a disability, if they suffer at all, are suppressed not by a given bodily deficit but by the social stigma attached to such a deficit. For instance, I think my wheelchair is a liberating device and consider my paralysis to an integral part of who I am as a human being. In contrast, others see my wheelchair as symbol of disability, weakness, and limited expectations. In short, my life is a tragedy. This faulty line of reasoning is not only infuriating but has far reaching implications that extend beyond disability. If Starmer is not going to prosecute those that help people end their life what will he do about people who are eager to push the boundaries of the new guidelines? What will Starmer do with a man like Michael Irwin who wants assisted suicide made legal and is willing to help anyone end their own life? Can Irwin help hundreds of people die assuming he does not profit from their deaths? And where does one draw a line between assistance and encouragement? For instance, will people in Daniel James' situation immediately following a spinal cord injury be told their options are life with paralysis or death? Will those options be explained in a balanced manner? Will a person that has no experience really be able to make an informed decision in such a situation? In asking these questions and many others in this post I keep returning to Daniel James. His death and the actions of his parents haunt me. No matter how depressed I was when initially paralyzed I never considered ending my life. In fact the hardest thing I have been forced to cope with as a person with a disability is the knowledge that others think my life is somehow less sweet and worthwhile because I use a wheelchair. I get this message loud and clear as did Daniel James and his parents. Thus significant obstacles remain common place and prevent people with a disability from leading a rich and rewarding life. Some people like Daniel James are even willing to end their life because they cannot confront the social and practical inequities associated with paralysis. Worse yet, his loving parents are lauded for their actions and one man in a position of power is going to use this case to pave the way for the deaths of many others, some with and some without a disability. Surely we humans are capable of much, much more.
Monday, September 21, 2009
David Paterson and the Price of Access
David Paterson is in the news again. No he did not stick his foot in his mouth, bring up the issue of race, change his facial hair, or talk about whether Obama wants him to run for re-election. The news is far more mundane. Governor Paterson signed 60 bills into law. I am not impressed with what he signed into law nor am I pleased with the 18 bills he vetoed. What did Paterson sign into law? Golly controversial laws that strengthen summer camp inspections and another that will allow residents to receive email updates when a sex offender moves into their neighborhood. Great, Peterson wants to keep children safe. That is a real vote getter. As to the laws Paterson vetoed one of the eighteen was of interest. The law of interest would have required each polling place in New York meet federal guidelines for physically disabled voters within the next six months. This too is not controversial. The ADA was signed into law almost 20 years ago and one would think all polling places would be accessible. Two decades seems like more than enough time to insure access is routine. But no, like the rest of America, access at polling places in New York is hit and miss. Why did Paterson veto this bill? As many have pointed out, this is an odd bill for a man with a disability to veto. Paterson has argued in vetoing 18 bills he will save the state of New York $28 million in the next two years. Paterson has argued the time frame of the vetoed legislation was "simply too onerous". Instead, he will work with local governments that have a federal waiver for access. I am not sure what this means. What will Paterson do in the next year that is any different than what has been done or not done in the past? Six months does not appear to be unreasonable or a burden in terms of making a polling place accessible. The federal guidelines are clear cut, have been in existence for a long time and surely all must agree access is a priority.
Please note the last few words of the above paragraph--read carefully--surely access is a priority. Yes, access is a priority. It always is subject of discussion and all agree it is the right thing to do. Many point out it is the law. Yet a funny thing always seems to happen between the drawing board meetings when one and all agree access is the right thing to do and when construction or renovation takes place. Access, once believed to be a requirement, becomes a problem at some point. Golly those pesky elevators and electric door openers sure do cost a lot of money. Do we really need every entrance to be accessible? Is it required to have an electric door opener at every entrance? And, wow, that ramp sure does take up a tremendous amount of space and is a real eye sore. Why can't people with a disability enter through the backdoor? We can give anyone who is disabled a "special key". The rationalizations are endless and signify that access is valued in theory but when it comes to budgeting is always the first line item cut. Deleting access is a great cost savings. Why have two accessible bathrooms when one will suffice. Well you need more than one bathroom because every constipated person in America gravitates to the one damn bathroom stall I can enter. Electric door openers are needed at the entrance to the library because people often have their hands full of books they are trying to take out or return. I know this because I often drop books when opening and closing library doors. And Governor Paterson when I vote I would like to vote in the town where I live. I hardly think this is much to ask. We do live in a Democracy! But no, I must send in an absentee ballot or vote in a nearby town that has an accessible polling place. Despite my complaint I am lucky. I have a car and getting to the next town is no problem. What about the members of the community that do not own a car? No mass transportation is available, two acre zoning is the norm where I live, and I am sure people do not vote because they do not have access to a polling place.
The skeptic in me would love to point out that it is in Paterson's best interest to insure all polling places are accessible. Paterson needs all the votes he can get as he faces an uphill battle for his re-election. Paterson however knows the disability community well. Too many of us do not vote and few politicians see us as a voting block--Paterson included. Here is the additional problem. Paterson has no connection to the disability community. If he did, he would not have vetoed the bill in question regardless of the cost or time frame. He should know you cannot place a price tag on one's civil rights and ability to access a polling place. When elected Paterson talked about the discrimination he encountered as a young man because he was blind. He overcame the needless obstacles that were placed in his way when trying to access an education. But I think he has forgotten where he came from. Like many successful politicians, he is insulated from reality and surrounded by handlers that control the ebb and flow of information. I sincerely doubt he is connected with others who are blind and is distant from the vibrant disability community. Perhaps he has always maintained this distance. I do not know the man but it is obvious he desperately wants to retain his position. Maybe I am not being fair as every politician is self centered. Moreover, Paterson was not elected to the governorship and perhaps he feels as though he has something to prove. Regardless, the bottom line is that he knows access is not valued and hence an easy item to cut. Given the dismal state of the economy, many such cuts are being made. However, this veto is dead wrong and sends a very bad message. Access is a "burden" and federal waivers are not only acceptable but Paterson is willing to let them remain. I may be all wrong and for a different take on Paterson please read Planet of the Blind today. Kuusisto has a post, "Why Governor Paterson Doesn't Get It", that I found thought provoking. We may have a different take on the matter but the important point is that the veto is as wrong as wrong can be. I hope Paterson realizes this and his veto was just a matter of politics. Yet sometimes a politician must go against the grain and this was surely one of those times for Paterson. Thus he not only lost an opportunity but lost my vote as well.
Please note the last few words of the above paragraph--read carefully--surely access is a priority. Yes, access is a priority. It always is subject of discussion and all agree it is the right thing to do. Many point out it is the law. Yet a funny thing always seems to happen between the drawing board meetings when one and all agree access is the right thing to do and when construction or renovation takes place. Access, once believed to be a requirement, becomes a problem at some point. Golly those pesky elevators and electric door openers sure do cost a lot of money. Do we really need every entrance to be accessible? Is it required to have an electric door opener at every entrance? And, wow, that ramp sure does take up a tremendous amount of space and is a real eye sore. Why can't people with a disability enter through the backdoor? We can give anyone who is disabled a "special key". The rationalizations are endless and signify that access is valued in theory but when it comes to budgeting is always the first line item cut. Deleting access is a great cost savings. Why have two accessible bathrooms when one will suffice. Well you need more than one bathroom because every constipated person in America gravitates to the one damn bathroom stall I can enter. Electric door openers are needed at the entrance to the library because people often have their hands full of books they are trying to take out or return. I know this because I often drop books when opening and closing library doors. And Governor Paterson when I vote I would like to vote in the town where I live. I hardly think this is much to ask. We do live in a Democracy! But no, I must send in an absentee ballot or vote in a nearby town that has an accessible polling place. Despite my complaint I am lucky. I have a car and getting to the next town is no problem. What about the members of the community that do not own a car? No mass transportation is available, two acre zoning is the norm where I live, and I am sure people do not vote because they do not have access to a polling place.
The skeptic in me would love to point out that it is in Paterson's best interest to insure all polling places are accessible. Paterson needs all the votes he can get as he faces an uphill battle for his re-election. Paterson however knows the disability community well. Too many of us do not vote and few politicians see us as a voting block--Paterson included. Here is the additional problem. Paterson has no connection to the disability community. If he did, he would not have vetoed the bill in question regardless of the cost or time frame. He should know you cannot place a price tag on one's civil rights and ability to access a polling place. When elected Paterson talked about the discrimination he encountered as a young man because he was blind. He overcame the needless obstacles that were placed in his way when trying to access an education. But I think he has forgotten where he came from. Like many successful politicians, he is insulated from reality and surrounded by handlers that control the ebb and flow of information. I sincerely doubt he is connected with others who are blind and is distant from the vibrant disability community. Perhaps he has always maintained this distance. I do not know the man but it is obvious he desperately wants to retain his position. Maybe I am not being fair as every politician is self centered. Moreover, Paterson was not elected to the governorship and perhaps he feels as though he has something to prove. Regardless, the bottom line is that he knows access is not valued and hence an easy item to cut. Given the dismal state of the economy, many such cuts are being made. However, this veto is dead wrong and sends a very bad message. Access is a "burden" and federal waivers are not only acceptable but Paterson is willing to let them remain. I may be all wrong and for a different take on Paterson please read Planet of the Blind today. Kuusisto has a post, "Why Governor Paterson Doesn't Get It", that I found thought provoking. We may have a different take on the matter but the important point is that the veto is as wrong as wrong can be. I hope Paterson realizes this and his veto was just a matter of politics. Yet sometimes a politician must go against the grain and this was surely one of those times for Paterson. Thus he not only lost an opportunity but lost my vote as well.
Tuesday, September 15, 2009
The MDA Telethon is Destructive
Every Labor Day weekend the MDA hosts its annual telethon with Jerry Lewis as its host. Held every year since 1966, the MDA telethon was and remains the most well-known telethon in America. Historically, telethons are extremely successful means to raise money. According to various news organizations, the MDA telethon raised nearly $60 million this year. This is proof positive pity as a means of fundraising worked in the past and still works today. In spite of the telethons effectiveness financially, most organizations abandoned them years ago. The reason telethons no longer exist is simple--their reliance on pity and the exploitation of degrading visual images of children were deemed objectionable. Pity may remain an effective way to raise money but even pity as a ploy to raise money has its limits. In the words of Ms. Crip Chick, "disabled people protest the telethon because of its outdated, negative portrayal of disabilities. These images that the telethon promotes sticks in people’s minds and continually serve as a barrier for disabled people. Disability is not the problem, but rather the attitudes and barriers that society places on us."
The MDA and Jerry Lewis have not gotten this message as they have refused to abandon their annual telethon. In addition the MDA and Jerry Lewis in particular have been obnoxious about their refusal to change and use modern fundraising techniques that are not inherently dehumanizing. Jerry Lewis has also said many derogatory and shockingly nasty things about not only people with disabilities but his critics. Anyone familiar with disability rights and an organization called Jerry Orphans knows the exchanges between Jerry Lewis and his critics have been extremely pointed. What amazes me about these exchanges is how poorly those that protest against the MDA telethon and Jerry Lewis come across in media sound bites. If you doubt me, read what Harriet McBryde Johnson wrote in her wonderful memoir Too Late to Die Young.
With great trepidation I sat down to watch the MDA telethon with my son. We did not watch long as I got increasingly angry with every minute that passed while my son complained about how bad the coverage was. A patina of political correctness cannot gloss over the fact pity remains the heart and soul of all telethons. All the flowery imagery in the world cannot change the premise upon which the MDA telethon is based. Sitting with my son I literally screamed "piss on pity" at the television screen and pondered calling the MDA. Should I tie up a phone line and explain to the operator working for the MDA that the telethon was setting back disability rights and hurting the very people it was trying to help? My son pointed out how useless and frustrating such an endeavor would be and suggested instead that I carefully read and support all the critical news reports that would surely appear following the telethon. I agreed and waited for such reports. I created a google news alert on my computer and was rewarded with a big fat zero--as in no reports of protests that took place. What I did get was news reports on how much money the MDA raised. Yes, $60 million was raised, a remarkable amount given the state of the economy. The MDA slapped itself on the back for a job well done. This only fueled my fury until yesterday. Finally someone wrote a great post about the MDA. Here I refer to Beth Haller at Media dis&dat. For those unfamiliar with Haller's blog, it is a wonderful resource on disability and the news media. Updated daily, Hallar provides an outstanding database of news and information that appear in the media about people with disabilities. I consider her blog must reading.
In Haller's blog entry of September 14, "Have MDA and Parade Magazine Parted Ways?", she provides a few great links to disability community protests and raises a fascinating point: a tradition of the MDA telethon is that Jerry Lewis appears on the cover of Parade magazine to promote the telethon. This year no such image appeared. Haller, referring to a columnist from the Roanoke Times, raises another interesting point. An article about muscular dystrophy research appeared in Parade magazine that plugged the telethon but did not feature Jerry Lewis. In Haller's estimation this is a positive development. She wrote: "I have noticed fewer and fewer local TV stations carrying it, which I personally think is a good thing. Every organization has the right to raise funds, but to me, telethons are a relic of a bygone TV era and many telethon tactics can be very demeaning to people with disabilities. So here's hoping that this Parade MDA cover omission signals an understanding of just how hurtful a pity approach to fundraising can be for people with disabilities." I can only second Haller's hope that the MDA telethon will become a relic of the past. To this end, I sent an email to the editor of Parade magazine praising the absence of Jerry Lewis on its cover and encouraged them to publish an article on why telethons should not be aired on television. I realize such an article will never be written but at least progress is being made. Parade magazine is afterall targeted at mainstream America. Who knows, perhaps the MDA will abandon its telethon and distance itself from Jerry Lewis. While I doubt this will happen while Jerry Lewis still yields great power I think the end of the MDA telethon is inevitable. When it does come to an end, who knows, I may just make a donation to the MDA.
The MDA and Jerry Lewis have not gotten this message as they have refused to abandon their annual telethon. In addition the MDA and Jerry Lewis in particular have been obnoxious about their refusal to change and use modern fundraising techniques that are not inherently dehumanizing. Jerry Lewis has also said many derogatory and shockingly nasty things about not only people with disabilities but his critics. Anyone familiar with disability rights and an organization called Jerry Orphans knows the exchanges between Jerry Lewis and his critics have been extremely pointed. What amazes me about these exchanges is how poorly those that protest against the MDA telethon and Jerry Lewis come across in media sound bites. If you doubt me, read what Harriet McBryde Johnson wrote in her wonderful memoir Too Late to Die Young.
With great trepidation I sat down to watch the MDA telethon with my son. We did not watch long as I got increasingly angry with every minute that passed while my son complained about how bad the coverage was. A patina of political correctness cannot gloss over the fact pity remains the heart and soul of all telethons. All the flowery imagery in the world cannot change the premise upon which the MDA telethon is based. Sitting with my son I literally screamed "piss on pity" at the television screen and pondered calling the MDA. Should I tie up a phone line and explain to the operator working for the MDA that the telethon was setting back disability rights and hurting the very people it was trying to help? My son pointed out how useless and frustrating such an endeavor would be and suggested instead that I carefully read and support all the critical news reports that would surely appear following the telethon. I agreed and waited for such reports. I created a google news alert on my computer and was rewarded with a big fat zero--as in no reports of protests that took place. What I did get was news reports on how much money the MDA raised. Yes, $60 million was raised, a remarkable amount given the state of the economy. The MDA slapped itself on the back for a job well done. This only fueled my fury until yesterday. Finally someone wrote a great post about the MDA. Here I refer to Beth Haller at Media dis&dat. For those unfamiliar with Haller's blog, it is a wonderful resource on disability and the news media. Updated daily, Hallar provides an outstanding database of news and information that appear in the media about people with disabilities. I consider her blog must reading.
In Haller's blog entry of September 14, "Have MDA and Parade Magazine Parted Ways?", she provides a few great links to disability community protests and raises a fascinating point: a tradition of the MDA telethon is that Jerry Lewis appears on the cover of Parade magazine to promote the telethon. This year no such image appeared. Haller, referring to a columnist from the Roanoke Times, raises another interesting point. An article about muscular dystrophy research appeared in Parade magazine that plugged the telethon but did not feature Jerry Lewis. In Haller's estimation this is a positive development. She wrote: "I have noticed fewer and fewer local TV stations carrying it, which I personally think is a good thing. Every organization has the right to raise funds, but to me, telethons are a relic of a bygone TV era and many telethon tactics can be very demeaning to people with disabilities. So here's hoping that this Parade MDA cover omission signals an understanding of just how hurtful a pity approach to fundraising can be for people with disabilities." I can only second Haller's hope that the MDA telethon will become a relic of the past. To this end, I sent an email to the editor of Parade magazine praising the absence of Jerry Lewis on its cover and encouraged them to publish an article on why telethons should not be aired on television. I realize such an article will never be written but at least progress is being made. Parade magazine is afterall targeted at mainstream America. Who knows, perhaps the MDA will abandon its telethon and distance itself from Jerry Lewis. While I doubt this will happen while Jerry Lewis still yields great power I think the end of the MDA telethon is inevitable. When it does come to an end, who knows, I may just make a donation to the MDA.
Wednesday, September 9, 2009
Wheelchair Bound
I do not get into semantic discussions about the differences between disabled, handicapped, physically challenged, crippled, differently abled, etc. I find such discussions boring and pointless. The average American is far too unaware of disability to grasp the implications of such a discussion. I prefer to spend my time focusing on disability rights as civil rights, a connection very few people make in spite of the fact the ADA was passed almost 20 years ago. However, one term I despise is wheelchair bound. This pops up in headlines on a regular basis and I find it shockingly dehumanizing. I am inspired to write about this today because I have been reading reports about the "wheelchair bound" woman that was shouted down at a town hall meeting. The town hall meeting in question was organized by Congressman Frank Pallone, a NJ Democrat. The meeting took place in Red Bank, NJ and You Tube videos illustrate the meeting was ugly--it brought out the worst in people rather than a debate about the merits of the proposed health care reform pushed by President Obama. I for one would never attend such a meeting. I know my views would be decided unwelcome and I do not want to subject myself to the sort of abuse the "wheelchair bound woman" was subjected to. The woman in question pointed out what many people with a disability know all too well: access to health care for people with a disability is expensive and virtually impossible to access without full time employment and benefits. Given the fact 66% of people with a disability are unemployed nearly two thirds lack adequate health care. The woman pointed out this was wrong and that she was worried she would lose her home because she had to pay so much for required medications.
The reaction of people at the town hall meeting to the woman above was as I expected: nasty and mean spirited. What I did not expect was the press reaction. Multiple news stories have appeared and all state a new low was set by the audience in question that shouted down a "wheelchair bound woman". In many reports the woman's name is not even mentioned. The new low that has been set was not established by the rude people that attended the town hall meeting. Their behavior was boorish in the extreme, totally unacceptable by all standards. To me, the new low was set by the press that characterized the woman as "wheelchair bound". This term is as antiquated as it is dehumanizing. I assure you I am not nor have I ever been "bound to my wheelchair". What people do not understand is that my wheelchair, all wheelchairs, are adaptive devices that liberate and empower people with a host of disabilities. I think my wheelchair is cool. Little kids think my wheelchair is very cool. In fact I was once favorable compared to a Power Ranger when eating at a local pizza place by a pre-school aged boy. This was a heady compliment. The problem is that people are taught wheelchairs are bad and those that use them tragic figures. I forcefully reject such faulty logic. The reality is that using a wheelchair is in some environments a distinct advantage. I never get tired in museums and can navigate an airline terminal far faster than a person walking. Can a wheelchair be limiting? Sure, finding hiking trails wide enough is always a problem as they are usual narrow foot paths. Some major Western cities present difficulties. For instance, navigating from the Seattle waterfront to the center of the city can be challenge due to steep hills. However, a little creativity and use of public garages and elevators negates this problem.
The point I am trying to emphasize is that a wheelchair is an adaptive device and an efficient one. I am no more bound to a wheelchair than one is bound to their feet or bipedal locomotion. The stigma attached to the use of a wheelchair is a social designation that is simply wrong and an injustice to every wheelchair user. Thus I am appalled when a few minutes ago I googled wheelchair bound. The results were as follows:
"Wheelchair-Bound Woman Shouted Down"
"Traveling with the Wheelchair Bound"
"School Emergency Policy: Leave Wheelchair Bound Behind"
"Wheelchair-bound triathlete Embraces Life"
"Wheelchair Bound Man Struck and Killed by Car"
"Wheelchair Bound Woman Dies"
Replace the words "wheelchair bound" with "bipedal" and do they make sense? In a word, no. They do not make sense because it is not socially acceptable to dehumanize those that walk with two feet. However, the same dehumanization is acceptable when referring to people that use a wheelchair. Note here the word use. I use a wheelchair like one uses their legs. It is nothing more and nothing less than a different way to navigate the world. The problems I encounter are thus not physical but social, the failure of society to negotiate difference. In my case the use of a wheelchair. This is as wrong as the headlines above and frankly it pisses me off. I am angry not because of my inability to walk but because I am not treated equally, that is with the same respect as a man that can walk. I am weary of this lack of respect and had hoped at this point in my life society would have evolved more than it has. Headlines with the words "wheelchair bound" in them reveal nothing about the person being written about but rather a significant social failure that needlessly makes life more difficult for millions of Americans.
The reaction of people at the town hall meeting to the woman above was as I expected: nasty and mean spirited. What I did not expect was the press reaction. Multiple news stories have appeared and all state a new low was set by the audience in question that shouted down a "wheelchair bound woman". In many reports the woman's name is not even mentioned. The new low that has been set was not established by the rude people that attended the town hall meeting. Their behavior was boorish in the extreme, totally unacceptable by all standards. To me, the new low was set by the press that characterized the woman as "wheelchair bound". This term is as antiquated as it is dehumanizing. I assure you I am not nor have I ever been "bound to my wheelchair". What people do not understand is that my wheelchair, all wheelchairs, are adaptive devices that liberate and empower people with a host of disabilities. I think my wheelchair is cool. Little kids think my wheelchair is very cool. In fact I was once favorable compared to a Power Ranger when eating at a local pizza place by a pre-school aged boy. This was a heady compliment. The problem is that people are taught wheelchairs are bad and those that use them tragic figures. I forcefully reject such faulty logic. The reality is that using a wheelchair is in some environments a distinct advantage. I never get tired in museums and can navigate an airline terminal far faster than a person walking. Can a wheelchair be limiting? Sure, finding hiking trails wide enough is always a problem as they are usual narrow foot paths. Some major Western cities present difficulties. For instance, navigating from the Seattle waterfront to the center of the city can be challenge due to steep hills. However, a little creativity and use of public garages and elevators negates this problem.
The point I am trying to emphasize is that a wheelchair is an adaptive device and an efficient one. I am no more bound to a wheelchair than one is bound to their feet or bipedal locomotion. The stigma attached to the use of a wheelchair is a social designation that is simply wrong and an injustice to every wheelchair user. Thus I am appalled when a few minutes ago I googled wheelchair bound. The results were as follows:
"Wheelchair-Bound Woman Shouted Down"
"Traveling with the Wheelchair Bound"
"School Emergency Policy: Leave Wheelchair Bound Behind"
"Wheelchair-bound triathlete Embraces Life"
"Wheelchair Bound Man Struck and Killed by Car"
"Wheelchair Bound Woman Dies"
Replace the words "wheelchair bound" with "bipedal" and do they make sense? In a word, no. They do not make sense because it is not socially acceptable to dehumanize those that walk with two feet. However, the same dehumanization is acceptable when referring to people that use a wheelchair. Note here the word use. I use a wheelchair like one uses their legs. It is nothing more and nothing less than a different way to navigate the world. The problems I encounter are thus not physical but social, the failure of society to negotiate difference. In my case the use of a wheelchair. This is as wrong as the headlines above and frankly it pisses me off. I am angry not because of my inability to walk but because I am not treated equally, that is with the same respect as a man that can walk. I am weary of this lack of respect and had hoped at this point in my life society would have evolved more than it has. Headlines with the words "wheelchair bound" in them reveal nothing about the person being written about but rather a significant social failure that needlessly makes life more difficult for millions of Americans.
Tuesday, September 8, 2009
Lessons Learned Among the Old and Young
My Labor weekend Labor was marked by not one but two parties. This is unusual for me because I hate parties. I do not like socializing among groups of more than a few people. At a practical level as the only wheelchair user at virtually every party I attend conversations take place two feet above my head. I always miss much of what is said and groups of bipedal people are hard to navigate around. And, truth be told, I simply do like being around large groups of people. Using a wheelchair simply gives me an excuse to avoid such experiences though there is a grounding in reality for my disliking parties. Regardless, the two parties I attended could not have been more different and yet paradoxically the same. The first party was at my home--a truly rare event. It was not actually my party but my son who invited 10 of his male and female friends over to our pool to discuss the up coming year for the local Venture Crew we are involved with (a coed part of the Boy Scouts for older teens). My son had a great time as I suspect his friends did. As one of three adults present, we had the plague. The teens avoided us and maintained their own private space. I respect this. The years before college are hard for a teenager as they are seeking to create an identity and philosophy of life that fits their belief system. Teenagers also struggle with authority for good reason. Too often they are not treated with respect but then again teenagers can be shockingly rude (they can be stunningly thoughtful at the other end of the spectrum). The second party I attended was a very large cook out where my mother lives. This was a community wide event held at a facility for older folks. My Mother lives at one of the few Kendal facilities, a continuing care residence for older folks organized by the Quakers. My mother lives within a vibrant community where old folks do not go to die but instead continue life with a built in support system based on individual need. I am tremendously impressed by those that live where my mother is and it is a truly unique environment. It is nothing like a nursing home or assisted living center though such options exist within the Kendal facility. What makes Kendal unique is the way older people live--by live I mean get the most out of life via festive dinners, parties, classes, on and off site events, lectures, etc. At the cook out my family and many others attended a good time was had and the weather was great.
So, to return to my original question: how were these parties different and the same? They were different in that the teenagers ate about as much food as I imagine an army might consume. They sucked down coke like it was water and it appeared as though they had not had a thing to drink in ages. They swam for hours on end, yelled, and whooped it up. They played music too loud via an ipod speaker and had serious discussions about various play lists. They mourned the fact they would be stuck in a classroom within 48 hours and complained bitterly about extended summer reading lists and homework for AP classes. In contrast the party where my mother lived had no ipod or music of any sort. The only people in the pool were children under 10 years old. Tables were organized, had nice table clothes on them and things were as organized as humanly possible. Food was cooked by real chefs and the diversity and quality was outstanding. Nothing was left to chance.
None of the above is a surprise. What is of interest to me was the similarities I observed. At both parties everyone had a great time. Both physical environments were accessible to me, an all too rare experience. I did not worry about getting into a bathroom--my only worry in this regard was to be sure my toilets were clean. Thus I got to drink as much fluid as desired. But what really stood out, pun intended, was how easily and relaxed I felt. I did not feel excluded or like a rare species infrequently sighted. Sure I was the only wheelchair user at my home but the adults present and surely my sons peers have long ago dismissed my crippled body as a social barrier. In fact what struck me was how normal I felt. My sons friends do not think twice about my disability--or at least it appears as though they don't consider it a major issue. We joke about my old age--yes 49 is very, very old to a teenager. We goof on how slow I ski and my son teases me that I paddle my kayak at about the same pace a turtle swims. This all leads to good natured chuckles. Likewise when I was with my mother, I do not stick out and felt normal. I was one of quite a few people that used a wheelchair. Other adaptive devices such as walkers and canes abounded. What I saw were people who have adapted to old age with grace and dignity. Then it struck me: I saw and was interacting in an environment that presented no physical or social barriers. This was empowering to the teenagers my son had over, the old folks that live in the same community as my mother, their families, and myself.
As I fell asleep last night I thought that this sense of normalcy should be the norm. The presence of all people with a disability should not be unusual. According to statistics about 15 to 20% of Americans are disabled in some way. Why then are people with a disability so disenfranchised? I would argue people with a disability are needlessly disenfranchised and knowingly excluded. We remain excluded because disability based prejudice is socially accepted and taught by parents, schools, and institutions such as courts and in the hallowed halls of democracy. Of course disability based prejudice is not the same as racial bigotry, it is far more subtle. We do not have segregation of the sort blacks experienced in the 1950s. We have a sanitized form of prejudice in spite of forty years of legislation designed to empower people with disabilities. We talk as Sarah Palin did about "special children" whom we ship off to "special schools" or "resource rooms". We bus children on "short buses" that carry significant stigma. We bemoan the lack of community service for adults with disabilities yet do nothing more than complain. We isolate people with disabilities at stadiums where pro sports are played in a few sections for the handicapped and force us to call a special number to get those tickets. We force people such as myself who use a wheelchair to be the very first person on a plane and the very last person off. We have para transit bus services that are notoriously bad and poorly funded. At universities books about disability based prejudice are rarely read much less required. I could go on for paragraphs if not pages about the social and environmental inequities I encounter regularly. And what sort of response do I get when I complain? The most common response is an awkward silence followed by a mumbled apology and the issue is quickly forgotten. I am perceived to be a narcisstic individual interested in only my own needs to the exclusion of the needs of the many and a price tag is put on access. I am resented for any accommodation because we Americans love to delude ourselves into thinking we are all equal and should be treated the same. Worse yet, I am thought to have a "chip on my shoulder" because I cannot walk. The fact the law states equal access is a civil right not part of bitterness on my part is never considered. This all makes me crazy because I learned this weekend it does not have to be that way. I have tailored my environment to meet my needs and appear to be accepted by son's peers, an acceptance I find encouraging. The environment my mother lives in is accessible and accepting as well. So, why cannot the rest of society accept the presence of people with a disability? The answer is as plan as it is simple. There is no social demand for equality. Ramps, elevators, wheelchairs, etc. are great adaptive devices but mean little when social stigma and exclusion are still thought to be the norm. What we need, what American society needs, is a new norm, the norm of inclusion not exclusion.
So, to return to my original question: how were these parties different and the same? They were different in that the teenagers ate about as much food as I imagine an army might consume. They sucked down coke like it was water and it appeared as though they had not had a thing to drink in ages. They swam for hours on end, yelled, and whooped it up. They played music too loud via an ipod speaker and had serious discussions about various play lists. They mourned the fact they would be stuck in a classroom within 48 hours and complained bitterly about extended summer reading lists and homework for AP classes. In contrast the party where my mother lived had no ipod or music of any sort. The only people in the pool were children under 10 years old. Tables were organized, had nice table clothes on them and things were as organized as humanly possible. Food was cooked by real chefs and the diversity and quality was outstanding. Nothing was left to chance.
None of the above is a surprise. What is of interest to me was the similarities I observed. At both parties everyone had a great time. Both physical environments were accessible to me, an all too rare experience. I did not worry about getting into a bathroom--my only worry in this regard was to be sure my toilets were clean. Thus I got to drink as much fluid as desired. But what really stood out, pun intended, was how easily and relaxed I felt. I did not feel excluded or like a rare species infrequently sighted. Sure I was the only wheelchair user at my home but the adults present and surely my sons peers have long ago dismissed my crippled body as a social barrier. In fact what struck me was how normal I felt. My sons friends do not think twice about my disability--or at least it appears as though they don't consider it a major issue. We joke about my old age--yes 49 is very, very old to a teenager. We goof on how slow I ski and my son teases me that I paddle my kayak at about the same pace a turtle swims. This all leads to good natured chuckles. Likewise when I was with my mother, I do not stick out and felt normal. I was one of quite a few people that used a wheelchair. Other adaptive devices such as walkers and canes abounded. What I saw were people who have adapted to old age with grace and dignity. Then it struck me: I saw and was interacting in an environment that presented no physical or social barriers. This was empowering to the teenagers my son had over, the old folks that live in the same community as my mother, their families, and myself.
As I fell asleep last night I thought that this sense of normalcy should be the norm. The presence of all people with a disability should not be unusual. According to statistics about 15 to 20% of Americans are disabled in some way. Why then are people with a disability so disenfranchised? I would argue people with a disability are needlessly disenfranchised and knowingly excluded. We remain excluded because disability based prejudice is socially accepted and taught by parents, schools, and institutions such as courts and in the hallowed halls of democracy. Of course disability based prejudice is not the same as racial bigotry, it is far more subtle. We do not have segregation of the sort blacks experienced in the 1950s. We have a sanitized form of prejudice in spite of forty years of legislation designed to empower people with disabilities. We talk as Sarah Palin did about "special children" whom we ship off to "special schools" or "resource rooms". We bus children on "short buses" that carry significant stigma. We bemoan the lack of community service for adults with disabilities yet do nothing more than complain. We isolate people with disabilities at stadiums where pro sports are played in a few sections for the handicapped and force us to call a special number to get those tickets. We force people such as myself who use a wheelchair to be the very first person on a plane and the very last person off. We have para transit bus services that are notoriously bad and poorly funded. At universities books about disability based prejudice are rarely read much less required. I could go on for paragraphs if not pages about the social and environmental inequities I encounter regularly. And what sort of response do I get when I complain? The most common response is an awkward silence followed by a mumbled apology and the issue is quickly forgotten. I am perceived to be a narcisstic individual interested in only my own needs to the exclusion of the needs of the many and a price tag is put on access. I am resented for any accommodation because we Americans love to delude ourselves into thinking we are all equal and should be treated the same. Worse yet, I am thought to have a "chip on my shoulder" because I cannot walk. The fact the law states equal access is a civil right not part of bitterness on my part is never considered. This all makes me crazy because I learned this weekend it does not have to be that way. I have tailored my environment to meet my needs and appear to be accepted by son's peers, an acceptance I find encouraging. The environment my mother lives in is accessible and accepting as well. So, why cannot the rest of society accept the presence of people with a disability? The answer is as plan as it is simple. There is no social demand for equality. Ramps, elevators, wheelchairs, etc. are great adaptive devices but mean little when social stigma and exclusion are still thought to be the norm. What we need, what American society needs, is a new norm, the norm of inclusion not exclusion.
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