Almost a year ago a teacher from Port St. Lucie Florida was thrust into the national spot light. Some may recall Wendy Portillo permitted or perhaps encouraged her kindergarten class to vote on whether Alex Barton could remain in Kindergarten. Alex Barton was predictably voted out of Kindergarten, humiliated by his peers and teacher, and forced to withdraw from school. The uproar that followed was nothing short of a type of hysteria and I vowed not to write a single word despite the fact I was as outraged as many others. The ugly incident reminded me of many horrible school incidents I experienced as a child with profound neurological deficits. At the time I thought no competent teacher could be that insensitive to a child. Whether the child in question had a disability or not seemed to lack relevance. No teacher should knowingly humiliate a child. If such an event took place the teacher should be fired and never permitted back in a classroom. Once the media spot light died down I thought the truth about what took place in Port St. Lucie would eventually emerge. The news coming out of Florida in recent days is not positive in my estimation.
The Port St. Lucie School District has quietly reinstated Ms. Portillo with full tenure. The vote to reinstate her by the School Board was unanimous and did not merit a word on the national news or a single newspaper outside of Florida. I am sure Ms. Portillo has a had a hard time but I have grave reservations about her judgement and teaching skills. Whether she ever sets foot in a classroom again has not been decided. Her unpaid suspension ends in five months. Based on news reports, the effort to reinstate Ms. Portillo was strong--parents and teachers alike wanted her back. Fine, but what I want to know is why Melissa Barton, Alex's mother, was not asked to comment at the Board of Education meeting when Ms. Portillo was reinstated. Surely the mother of the child that was humiliated should have at least been present if not asked to give her opinion before Ms. Portillo was reinstated. I have no idea if Ms. Portillo is a competent teacher or not. However, I do have serious reservations about any adult that would ask young children to vote on whether a child should be permitted in class. I am also disheartened to read that in the estimation of some the disability blogging community is largely responsible for the emotional firestorm that ensued and needlessly "crucified" a teacher. From a distance, it seems to me that the Port St. Lucie School School District has played a cool game of politics. They reinstated a teacher they wanted to keep regardless of the fact she humiliated a child. The larger significance of the school board's action is important. It sends a clear message to all those that do not fit in, disabled and not disabled, that difference will not be tolerated. We may acquiesce to pressure but in the end we will get exactly what we want. What do schools want? Compliant children that do not question authority. Children that will do exactly what they are told and take innumerable standardized exams and not ask why they are doing so. Education is secondary to the control of young minds that are being wasted across our nation. Secondary education is in deep trouble and I for one am concerned about the future as we are raising a generation of young people that do not know how to think and act independently.
Friday, June 19, 2009
Thursday, June 18, 2009
Scary Thoughts: How Many with SCI Needlessly Die
Yesterday I described myself as "an old time crip". It never ceases to amaze me how things have changed since i was first paralyzed. My first wheelchair was a piece of crap manufactured by Everest and Jennings. It weighed 50 pounds, was poorly made, and came in one color and fell apart in 6 months. What did I do to this wheelchair? I went up and down curbs, played basketball, and led an active life. For this, the "lifetime" warranty was voided and in the next two years went through at least four other wheelchairs until I found one of the first rigid frame wheelchairs ever made. I happily parted ways with E&J and did a little dance years later when they went out of business.
Technology has changed dramatically. People with SCI can expect to live a rich and full life post injury. This should not be subject to question. However, I have no doubt questions about the quality of life post SCI is still subject to intense discussion. I am sure people with high level SCI injuries are given a crystal clear image of life post injury that is far from positive. The focus is on respirators, a total lack of independence, pressure sores, nursing home care, chronic infection and worse. No doubt some people will hear all this and read between the lines: life with a high level SCI injury is not worth living. The message can be delivered subtly or bluntly. We can make your loved one comfortable and they will expire from secondary complications associated with their injury. Does this take place today? You're damn right it does. I saw this 30 years ago and sadly we have not progressed that much socially. I vividly recall late one night asking a rehab nurse why there were no people with a high level SCIs on the ward. She looked at me with an odd expression and replied "think about it". Naive, I thought and thought and could not think of an answer that made sense. The nurse shook her head and told me to raise my level of injury from T-3 to C-3 and asked me if I really wanted to live that sort of life. After a pause I said not but that was not up to me, people had the right to choose. Such a decision I thought was made by doctor, patient, and family. Again she shook her head. That decision, she told me, was made in the ER and operating rooms by doctors. Patients who would be dependent upon a respirator and unable to independently move died. "They were allowed to die with dignity" she told me. I lost a lot of sleep that night wondering about the so called "quality of my life", what doctors and other medical professionals thought of my existence and shuddered to think of the many who would die not of a high level SCI but a social assumption that their life was not worth living.
These thoughts flooded back to me yesterday when I read "How I Didn't Die" by Terrie Lincoln, Systems Advocate, at the Center for Disability Rights and cross posted at Not Dead Yet. Apparently the Center for Disability Rights and Not Dead Yet share some office space in the same building. Stephen Drake, one of my favorite people in the fight for disability rights, had been contacted by someone from "How We Die, a website and TV series devoted to "end of life decisions". Drake was able to convince the people at this show to include the stories of people who were supposed to die--indeed were pushed to die by doctors. Ms. Lincoln's story is among the first to be discussed. I encourage you to all read her story. It did not happen thirty years ago but a mere twelve. Twelve years ago! Twelve years ago a person with a SCI was pushed to die! When I read her story all I could think of was the disparity between her life and mine. I was the father of a 5 year old boy living the good life in suburbia. Ms. Lincoln was being pressured by doctors to die, that her life was not worth living. What Ms. Lincoln and I shared was a supportive family. Her mother refused to listen to doctors and fought back. Likewise, my parents never questioned my ability. I was going to live a rich and full life like my siblings. I may be paralyzed but the most important part of my body, my brain, worked perfectly and it was up to me to use it. My parents did not give a damn whether I was paralyzed or not. They loved me for who I was.
Ms. Lincoln's story deeply depressed me. Surely we have come far technologically but the social lag, the stigma attached to life after SCI has not abated. It should not be up to a strong and supportive family to encourage a person with a SCI to continue to live. This should be a given no matter the level of injury. But this sort of thinking was naive thirty years ago and as Ms. Lincoln demonstrated was equally naive twelve years ago. I suspect it is naive thinking today. And it makes me wonder just how many people today will die of complications associated with SCI that need not die. How many doctors exist that are wiling to make this decision for a patient? How many people have died over the years? I suspect the numbers are staggering. These sorts of thought kept me awake thirty years and I wonder if the problem, needless deaths--is worse not better. How many people die today as a result of a value judgment made by doctors? I think of Daniel James and his "loving" parents that received a tidal wave of support when they escorted him to Dignitas shortly after his SCI where he died, a result of assisted suicide. More generally, I wonder about the elderly and all those that have had extended hospitalizations and are given a choice between assisted suicide and continued care? Are people such as this, surely depressed, given a real choice? What about the elderly who are visited by well funded right to die groups? Are these people really being a given choice or being told to die? I do not have answers to the questions I pose but I am convinced of one thing: good people, young and old alike, die needlessly everyday. These needless deaths have less to with medicine than the value judgments made by those that work in a supposedly hard science we call medicine.
Technology has changed dramatically. People with SCI can expect to live a rich and full life post injury. This should not be subject to question. However, I have no doubt questions about the quality of life post SCI is still subject to intense discussion. I am sure people with high level SCI injuries are given a crystal clear image of life post injury that is far from positive. The focus is on respirators, a total lack of independence, pressure sores, nursing home care, chronic infection and worse. No doubt some people will hear all this and read between the lines: life with a high level SCI injury is not worth living. The message can be delivered subtly or bluntly. We can make your loved one comfortable and they will expire from secondary complications associated with their injury. Does this take place today? You're damn right it does. I saw this 30 years ago and sadly we have not progressed that much socially. I vividly recall late one night asking a rehab nurse why there were no people with a high level SCIs on the ward. She looked at me with an odd expression and replied "think about it". Naive, I thought and thought and could not think of an answer that made sense. The nurse shook her head and told me to raise my level of injury from T-3 to C-3 and asked me if I really wanted to live that sort of life. After a pause I said not but that was not up to me, people had the right to choose. Such a decision I thought was made by doctor, patient, and family. Again she shook her head. That decision, she told me, was made in the ER and operating rooms by doctors. Patients who would be dependent upon a respirator and unable to independently move died. "They were allowed to die with dignity" she told me. I lost a lot of sleep that night wondering about the so called "quality of my life", what doctors and other medical professionals thought of my existence and shuddered to think of the many who would die not of a high level SCI but a social assumption that their life was not worth living.
These thoughts flooded back to me yesterday when I read "How I Didn't Die" by Terrie Lincoln, Systems Advocate, at the Center for Disability Rights and cross posted at Not Dead Yet. Apparently the Center for Disability Rights and Not Dead Yet share some office space in the same building. Stephen Drake, one of my favorite people in the fight for disability rights, had been contacted by someone from "How We Die, a website and TV series devoted to "end of life decisions". Drake was able to convince the people at this show to include the stories of people who were supposed to die--indeed were pushed to die by doctors. Ms. Lincoln's story is among the first to be discussed. I encourage you to all read her story. It did not happen thirty years ago but a mere twelve. Twelve years ago! Twelve years ago a person with a SCI was pushed to die! When I read her story all I could think of was the disparity between her life and mine. I was the father of a 5 year old boy living the good life in suburbia. Ms. Lincoln was being pressured by doctors to die, that her life was not worth living. What Ms. Lincoln and I shared was a supportive family. Her mother refused to listen to doctors and fought back. Likewise, my parents never questioned my ability. I was going to live a rich and full life like my siblings. I may be paralyzed but the most important part of my body, my brain, worked perfectly and it was up to me to use it. My parents did not give a damn whether I was paralyzed or not. They loved me for who I was.
Ms. Lincoln's story deeply depressed me. Surely we have come far technologically but the social lag, the stigma attached to life after SCI has not abated. It should not be up to a strong and supportive family to encourage a person with a SCI to continue to live. This should be a given no matter the level of injury. But this sort of thinking was naive thirty years ago and as Ms. Lincoln demonstrated was equally naive twelve years ago. I suspect it is naive thinking today. And it makes me wonder just how many people today will die of complications associated with SCI that need not die. How many doctors exist that are wiling to make this decision for a patient? How many people have died over the years? I suspect the numbers are staggering. These sorts of thought kept me awake thirty years and I wonder if the problem, needless deaths--is worse not better. How many people die today as a result of a value judgment made by doctors? I think of Daniel James and his "loving" parents that received a tidal wave of support when they escorted him to Dignitas shortly after his SCI where he died, a result of assisted suicide. More generally, I wonder about the elderly and all those that have had extended hospitalizations and are given a choice between assisted suicide and continued care? Are people such as this, surely depressed, given a real choice? What about the elderly who are visited by well funded right to die groups? Are these people really being a given choice or being told to die? I do not have answers to the questions I pose but I am convinced of one thing: good people, young and old alike, die needlessly everyday. These needless deaths have less to with medicine than the value judgments made by those that work in a supposedly hard science we call medicine.
Wednesday, June 17, 2009
Punk Rock and Disability History
I do not like Punk music. However, I do understand why Punk musically and culturally is important. Originally a musically based movement, punk transformed into an important oppositional subculture. I knew this instinctively when I heard the Sex Pistols for the first time as a college student. What attracted me to Punk had less to do with the music produced than the anti-corporate and in your face anti establishment beliefs. The sort of anarchistic nihilism the punks fostered suited my mood circa 1978. I was newly disabled, hopelessly confused as to the meaning of disability and desperate to have sex ( I was 18 years old afterall). I did not understand the moral condemnation that punks were subjected to. I could not fathom how the Sex Pistols became demonized or to borrow the words of Dick Hebdige emerged as "folk devils". What I directly related to was the punk motto "no future". This is exactly what I was thinking and worrying about: did I have a future as a crippled man? What did I do while I contemplated my fate? I sat in my room, smoked too much pot and listened to the punk "national anthem" God Save the Queen again and again and again. I listened to Johnny Rotten of the Sex Pistols Scream:
God Save the Queen, the fascist regime
They made you a moron, a potential H-bomb
God Save the Queen, she ain't no human being
There is no future in England's dream
No future, no future, no future for you
Did I relate God Save the Queen to the dismal social situation in England? At an abstract level I suppose I did but what I really thought about was my growing disdain for the cultural construction of disability. I despised the people that smiled at me but considered ramps, elevators to be a waste of money and my life a tragedy. I despised the lack of value placed on my existence and grew increasingly angry. I dealt with this the only way I knew how: I retreated into a a social shell and was determined to excel the only way I knew how: I would get outstanding grades and whenever possible get as drunk or stoned as possible. This worked quite well circa 1980. I was in the perfect social environment, college, and had few responsibilities aside from school. My interest in punk never subsided even though God Save the Queen and the Sex Pistols were surpassed by many other punk bands. God Save the Queen as my favorite song was replaced by Ian Drury's single "Sex,& Drugs & Rock & Roll", and in 1981 by Spasticus Autisticus. Written by Drury and Chaz Jankel, it was released as a single and on the album Lord Upminister I instantly loved the fact the song the BBC deemed the song offensive and upset the delicate sensibilities of the British. The song also reminded me of the classic book and film Spartacus by Howard Fast. I vividly recalled watching this film with my brother and was drawn to the manly and defiant Kirk Douglas who starred as Spartacus. The song inspired me to read Fast's classic again and I was surprised at how little I knew about the text and its author despite the fact I loved the book. Sure I recalled the main character was born a slave, trained as a gladiator, led a slave revolt that was eventually crushed by Crassus. What I did not know was that Fast was among those black listed during the Cold War and that Spartacus was instrumental in turing the tide against McCarthyism that reigned supreme in Hollywood.
What you may be wondering does Spasticus Autisticus have do with the Howard Fast? The song was written to mark the International Year of the Disabled Persons in 1981. The song was banned by the BBC and the lyrics marked a transition in my life. I was done getting drunk and stoned as it became boring. I was also done being a wall flower content to get good grades but little else. At some level I was making the transition from confused and compliant to one that would eventually become defiant and a self described Bad Cripple. Spasticus Autisticus helped me make this change. The lyrics some 30 years later are worth reading anew:
I'm spasticus, I'm spasticus
I'm spasticus autisticus
I'm spasticus, I'm spasticus
I'm spasticus autisticus
I'm spasticus, I'm spasticus
I'm spasticus autisticus
I wiggle when I piddle
'Cos my middle is a riddle
I'm spasticus, I'm spasticus
I'm spasticus autisticus
I'm spasticus, I'm spasticus
I'm spasticus autisticus
I'm spasticus, I'm spasticus
I'm spasticus autisticus
I dribble when I nibble
And I quibble when I scribble
Hello to you out there in Normal Land
You may not comprehend my tale or understand
As I crawl past your window give me lucky looks
You can read my body but you'll never read my books
I'm spasticus, I'm spasticus
I'm spasticus autisticus
I'm spasticus, I'm spasticus
I'm spasticus autisticus
I'm spasticus, I'm spasticus
I'm spasticus autisticus
I'm knobbled on the cobbles
'Cos I hobble when I wobble
Swim!
So place your hard-earned peanuts in my tin
And thank the Creator you're not in the state I'm in
So long have I been languished on the shelf
I must give all proceedings to myself
I'm spasticus, I'm spasticus
I'm spasticus autisticus
I'm spasticus, I'm spasticus
I'm spasticus autisticus
I'm spasticus, I'm spasticus
I'm spasticus autisticus
54 appliances in leather and elastic
100,000 thank you's from 27 ... spastics
Spasticus, spasticus
Spasticus autisticus
Spasticus, spasticus
Spasticus autisticus
Spasticus, spasticus
Spasticus autisticus
Widdling, griddling, skittling, diddling, fiddling, diddling, widdling, diddling, spasticus
I'm spasticus, spasticus
Spasticus autisticus
Spasticus, spasticus
Spasticus autisticus
Spasticus, spasticus
Spasticus autisticus
Spasticus, spasticus
Spasticus autisticus
I'm spasticus!
I'm spasticus!
I'm spasticus!
I'm spasticus!
I'm spasticus!
I'm spasticus!
I'm spasticus!
Spasticus!
The refrain, "I'm Spasticus, autisticus" reminded me of Kirk Douglas at the end of Spartacus when he and his fellow slaves are hung and all reply defiantly "I am Spartacus". So began my journey of rebellion in college, one that has not as yet ended. But I hope someday it will as I am getting too old and cranky to fight. Thus I am increasingly interested and drawn to the work of the next generation of disability rights activists. They are small in number but strong in spirit and have embraced the internet with gusto. Thankfully, they start from a position of legal equality that has not yet been matched by social equality--not by a long shot in fact. But I hope like me they are full of piss and vinegar. For I am willing accept my roll as "an old time crip" and am happy provide a history lesson every once in a while.
God Save the Queen, the fascist regime
They made you a moron, a potential H-bomb
God Save the Queen, she ain't no human being
There is no future in England's dream
No future, no future, no future for you
Did I relate God Save the Queen to the dismal social situation in England? At an abstract level I suppose I did but what I really thought about was my growing disdain for the cultural construction of disability. I despised the people that smiled at me but considered ramps, elevators to be a waste of money and my life a tragedy. I despised the lack of value placed on my existence and grew increasingly angry. I dealt with this the only way I knew how: I retreated into a a social shell and was determined to excel the only way I knew how: I would get outstanding grades and whenever possible get as drunk or stoned as possible. This worked quite well circa 1980. I was in the perfect social environment, college, and had few responsibilities aside from school. My interest in punk never subsided even though God Save the Queen and the Sex Pistols were surpassed by many other punk bands. God Save the Queen as my favorite song was replaced by Ian Drury's single "Sex,& Drugs & Rock & Roll", and in 1981 by Spasticus Autisticus. Written by Drury and Chaz Jankel, it was released as a single and on the album Lord Upminister I instantly loved the fact the song the BBC deemed the song offensive and upset the delicate sensibilities of the British. The song also reminded me of the classic book and film Spartacus by Howard Fast. I vividly recalled watching this film with my brother and was drawn to the manly and defiant Kirk Douglas who starred as Spartacus. The song inspired me to read Fast's classic again and I was surprised at how little I knew about the text and its author despite the fact I loved the book. Sure I recalled the main character was born a slave, trained as a gladiator, led a slave revolt that was eventually crushed by Crassus. What I did not know was that Fast was among those black listed during the Cold War and that Spartacus was instrumental in turing the tide against McCarthyism that reigned supreme in Hollywood.
What you may be wondering does Spasticus Autisticus have do with the Howard Fast? The song was written to mark the International Year of the Disabled Persons in 1981. The song was banned by the BBC and the lyrics marked a transition in my life. I was done getting drunk and stoned as it became boring. I was also done being a wall flower content to get good grades but little else. At some level I was making the transition from confused and compliant to one that would eventually become defiant and a self described Bad Cripple. Spasticus Autisticus helped me make this change. The lyrics some 30 years later are worth reading anew:
I'm spasticus, I'm spasticus
I'm spasticus autisticus
I'm spasticus, I'm spasticus
I'm spasticus autisticus
I'm spasticus, I'm spasticus
I'm spasticus autisticus
I wiggle when I piddle
'Cos my middle is a riddle
I'm spasticus, I'm spasticus
I'm spasticus autisticus
I'm spasticus, I'm spasticus
I'm spasticus autisticus
I'm spasticus, I'm spasticus
I'm spasticus autisticus
I dribble when I nibble
And I quibble when I scribble
Hello to you out there in Normal Land
You may not comprehend my tale or understand
As I crawl past your window give me lucky looks
You can read my body but you'll never read my books
I'm spasticus, I'm spasticus
I'm spasticus autisticus
I'm spasticus, I'm spasticus
I'm spasticus autisticus
I'm spasticus, I'm spasticus
I'm spasticus autisticus
I'm knobbled on the cobbles
'Cos I hobble when I wobble
Swim!
So place your hard-earned peanuts in my tin
And thank the Creator you're not in the state I'm in
So long have I been languished on the shelf
I must give all proceedings to myself
I'm spasticus, I'm spasticus
I'm spasticus autisticus
I'm spasticus, I'm spasticus
I'm spasticus autisticus
I'm spasticus, I'm spasticus
I'm spasticus autisticus
54 appliances in leather and elastic
100,000 thank you's from 27 ... spastics
Spasticus, spasticus
Spasticus autisticus
Spasticus, spasticus
Spasticus autisticus
Spasticus, spasticus
Spasticus autisticus
Widdling, griddling, skittling, diddling, fiddling, diddling, widdling, diddling, spasticus
I'm spasticus, spasticus
Spasticus autisticus
Spasticus, spasticus
Spasticus autisticus
Spasticus, spasticus
Spasticus autisticus
Spasticus, spasticus
Spasticus autisticus
I'm spasticus!
I'm spasticus!
I'm spasticus!
I'm spasticus!
I'm spasticus!
I'm spasticus!
I'm spasticus!
Spasticus!
The refrain, "I'm Spasticus, autisticus" reminded me of Kirk Douglas at the end of Spartacus when he and his fellow slaves are hung and all reply defiantly "I am Spartacus". So began my journey of rebellion in college, one that has not as yet ended. But I hope someday it will as I am getting too old and cranky to fight. Thus I am increasingly interested and drawn to the work of the next generation of disability rights activists. They are small in number but strong in spirit and have embraced the internet with gusto. Thankfully, they start from a position of legal equality that has not yet been matched by social equality--not by a long shot in fact. But I hope like me they are full of piss and vinegar. For I am willing accept my roll as "an old time crip" and am happy provide a history lesson every once in a while.
Tuesday, June 16, 2009
White Castle Misses the Point
A news report coming out of Minneapolis St. Paul caught my eye this morning as I ate my usual boring but healthy breakfast. On the surface, the report is a supposedly supportive story about a woman that was turned away from White Castle. The woman in question, Ariel Wade, was not turned away from the front door or refused service inside the well-known hamburger chain. Ariel Wade was refused service when she appeared in her electric mobility scooter at the drive through window. Not surprisingly, she was turned away because it is well established policy that drive through windows are for licensed motor vehicles only.
What the story in the Minneapolis St. Paul Tribune by James Eli Shiffer is about has nothing to do with disability rights. The subtext, what is not stated, is obvious: ain't it a hoot to think about some lady in an electric scooter trying to get White Castle hamburgers past midnight and within sight of the State Capital. Better yet, Ariel Wade is "madder than fish grease" that White Castle staff refused to fork over burgers to her in the drive through. Ariel Wade refused to be bought off with free meal vouchers despite the fact she is a former exotic dancer and until recently worked selling bingo tickets at a bar. Ariel Wade claims the fact she was refused service is evidence that the White Castle policy discriminates against disabled people that cannot drive. Based on some 249 replies to this story the general public thinks Ariel Wade is nuts, one of those crazy and unreasonable people that abound when it comes to those pesky cripple people and their "civil rights". One outraged person wrote if Ariel Wade wanted a hamburger so badly she should have called a taxi and gone to the drive through. Many people cited safety issues and wondered what the story had to do with disability rights.
Given the way the story is framed, I too was initially puzzled. Ariel Wade is no saint nor is she a whistle blower. In fact, it would not surprise me if Ariel Wade had a lot to drink the night she showed up at the White Castle. I state this not to slander Ms. Wade but acknowledge the few times in my life I have sought out post midnight burgers had less to do with hunger than the amount of beer I had ben drinking and my impaired judgement. So, buried deep within the story is the real issue. The White Castle "dining room" closed at 11PM but the drive through remained open 24 hours. The only access to White Castle burgers is via the drive through. Thus the argument could be made under the ADA that if a store is open 24 hours it must be made accessible during that 24 hour period. This is an interesting but unexplored aspect of the ADA. It also has wide ranging implications: any store can be open 24 hours a day but what if only limited access was made available to people with a disability? To me, this is a clear violation of the ADA. I have encountered a similar problem in the past--not at stores but at libraries. During exam periods the library had extended hours and in many cases the only accessible entrance was closed. Security was supposed to have a key but that damn key was elusive or its existence a total mystery. The point is Ariel Wade has raised an interesting legal question pertaining to the ADA. Sadly it is framed in way that is designed to prompt outrage, a gut reaction, and no thought. A passing glance of this story reinforces the antiquated notion that people with a disability are unreasonable and narcisstic. The reality as I know it is quite different and yet another opportunity to discuss the civil rights of people with a disability has been hopelessly skewed.
What the story in the Minneapolis St. Paul Tribune by James Eli Shiffer is about has nothing to do with disability rights. The subtext, what is not stated, is obvious: ain't it a hoot to think about some lady in an electric scooter trying to get White Castle hamburgers past midnight and within sight of the State Capital. Better yet, Ariel Wade is "madder than fish grease" that White Castle staff refused to fork over burgers to her in the drive through. Ariel Wade refused to be bought off with free meal vouchers despite the fact she is a former exotic dancer and until recently worked selling bingo tickets at a bar. Ariel Wade claims the fact she was refused service is evidence that the White Castle policy discriminates against disabled people that cannot drive. Based on some 249 replies to this story the general public thinks Ariel Wade is nuts, one of those crazy and unreasonable people that abound when it comes to those pesky cripple people and their "civil rights". One outraged person wrote if Ariel Wade wanted a hamburger so badly she should have called a taxi and gone to the drive through. Many people cited safety issues and wondered what the story had to do with disability rights.
Given the way the story is framed, I too was initially puzzled. Ariel Wade is no saint nor is she a whistle blower. In fact, it would not surprise me if Ariel Wade had a lot to drink the night she showed up at the White Castle. I state this not to slander Ms. Wade but acknowledge the few times in my life I have sought out post midnight burgers had less to do with hunger than the amount of beer I had ben drinking and my impaired judgement. So, buried deep within the story is the real issue. The White Castle "dining room" closed at 11PM but the drive through remained open 24 hours. The only access to White Castle burgers is via the drive through. Thus the argument could be made under the ADA that if a store is open 24 hours it must be made accessible during that 24 hour period. This is an interesting but unexplored aspect of the ADA. It also has wide ranging implications: any store can be open 24 hours a day but what if only limited access was made available to people with a disability? To me, this is a clear violation of the ADA. I have encountered a similar problem in the past--not at stores but at libraries. During exam periods the library had extended hours and in many cases the only accessible entrance was closed. Security was supposed to have a key but that damn key was elusive or its existence a total mystery. The point is Ariel Wade has raised an interesting legal question pertaining to the ADA. Sadly it is framed in way that is designed to prompt outrage, a gut reaction, and no thought. A passing glance of this story reinforces the antiquated notion that people with a disability are unreasonable and narcisstic. The reality as I know it is quite different and yet another opportunity to discuss the civil rights of people with a disability has been hopelessly skewed.
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