Last week I was able to ski twice. I wanted to end the season on a high note and made arrangements to ski with New England Disabled Sports at Loon Mountain and Vermont Adaptive Ski and Sports at Pico Mountain. I was able to ski with my favorite instructors who are not only gifted teachers but fine human beings. Over the last few days I have thought about how the ski season went for me in terms of my development and the larger implications of adaptive skiing. I am happy to report I have found the correct rig for my use. I have enjoyed success using a bi ski this season. In January I was not an independent skier. Today, aside from getting on and off the lift, I can ski independently. Depending on the conditions, I can ski on beginner or intermediate terrain. I am proud of my progress and look forward to next year. I want to improve my skills and work on getting on and off the lift with my son and bother in law.
Over the last few days my son and I have talked about how much fun we have had on and off the slopes. In my son's estimation seeing me ski is cool and I have earned a measure of respect. This is not easy to accomplish given the fact my son is a teenager and has an answer for every problem known to man. As for me, I regret that I began skiing in my late 40s. I played wheelchair basketball in college but was never really serious about the game. Last night I was restless and took out a big file of articles about the history of adaptive sports. I read a few articles about the origins of adaptive skiing and feel better. When I was first paralyzed adaptive skiing was in its infancy. For those unfamiliar with adaptive skiing, the sport began in 1942 in Europe. Franz Wendel was the first disabled person to "crutch ski". During World War II Wendel had a leg amputated and by the end of the 1940s he was giving demonstrations about how amputees could ski with crutches--what are called riggers today. Word of Wendel's skiing spread to the United States and elsewhere and in the late 1950s an Austrian adaptive ski school was formed.
Adaptive skiing did not really come of age until the 1980s. In large part, the Vietnam War was responsible for creating a large population of disabled veterans that had much different post disability expectations. These men began a new era in adaptive skiing. People like Doug Pringle, president of Disabled Sports USA Far West, invented some of the earliest equipment. Pringle and other veterans trained a generation of adaptive skiers, many of whom are now teaching a second generation of people with disabilities. The 1980s witnessed the greatest growth and experimentation in adaptive skiing. Adaptive skis circa 1980, and sit skis in particular, were very primitive devices. In fact sit skis were little more than sleds and do not resemble the rigs seen today. Ski resorts were not interested in drawing adaptive skiers to the slopes. People with adaptive skis were often not permitted to use the lifts and were pulled up the mountain by ski instructors. Yet within a decade adaptive programs were being established all over the country. The largest program, Breckenridge Outdoor Education Center, is a good example. The downhill program began in 1981 and by 1985 it hosted the first National Handicap Ski Championship where the first modern mono ski was tested. The 1990s witness robust national and international development. Ski resorts began to host adaptive ski programs and chair lift protocols were established.
The above history has led me to conclude I did not miss out on too much adaptive skiing. I missed a fascinating era of experimentation and the establishment of sit skis in use today. Adaptive sit skiers such as myself now have two choices--they can use a mono ski, the Ferrari on the slopes or a bi ski (a small niche market exists for a dual ski). The rig I use, Enabling Technology's bi ski, does not possess a "cool" factor but is the rig that works best for me given my age and high level of paralysis. Reading about the history of adaptive skiing made me aware that I am able to ski because of the paralyzed people that came before me. These people were trail blazers that created an industry and helped form hundreds of non profit groups that currently teach people such as myself how to ski, kayak, and become active in a myriad of other sports. Thus I and every other current adaptive skier owes much to Franz Wendel and other innovators that did not focus on what they could not do but rather what was possible. In some ways not much has changed. Too often people still think of the things a disabled person cannot do and this reinforces why adaptive sports are so important. When a person is participating in adaptive sports strangers do not see a disability and instead see another human being participating in a sport thereby forming a common bind.
Tuesday, March 17, 2009
Monday, March 16, 2009
Obama Question
I just read via various sources that President Obama has created new position designed "to oversee arts and culture". The person that earned this position is Kareem Dale, a lawyer who was recently appointed special assistant to the President for disability policy. Dale's appointment as it relates to disability was logical and I am not sure if I am confused or worried by this change. Could it be that Dale is being set up by President Obama to be the "arts czar"? If so, he will focus on coordinating the activities of the National Endowment of the Humanities and the Institute of Museum and Library Services with regard to White House objectives. Again, I am not sure what this entails but it appears Dale's appointment is good news for the NEH, NEA, and IMLS because each of these agencies received a significant budget increase.
What I am confused about is what does Dale's appointment mean to disability policy? Will Dale's post in disability policy be assigned to someone else? Will Dale's work in disability policy be tagged onto his new position? If this is the case, can he advocate on behalf of people with disabilities and those in the arts? I do not think this is possible but it sure is common. I never cease to be amazed how disability policy or coordination is an afterthought. In my experience, such a position is an added element to an already over worked stressed out administrator. For instance, on many college campuses the person assigned to assist students with a disability primary job has nothing to do with disability. It is also not unusual for the person that is assigned to handle disability related matters to have absolutely no experience whatsoever with disability issues. The fact is disability policy and coordination requires an understanding of the law, the ADA in particular, disability rights, disability history, and a measure of understanding with regard to the social obstacles disabled students encounter. When done well, a disability policy specialist can empower students and faculty alike and educate the academic community about civil rights violations that still exist. Sadly, this is unusual as I have come across very few disability analysts that are well paid and can devote the time required to do a good job. The point, is will the Obama administration fall into this trap? Will Dale's position be filled by a person with a detailed knowledge of disability rights and policy? If so, this is a great sign. Maybe Obama does indeed value the inclusion of people with a disability and disability policy in his administration. I for one will be scouring the news for more about who may or may not replace Dale.
What I am confused about is what does Dale's appointment mean to disability policy? Will Dale's post in disability policy be assigned to someone else? Will Dale's work in disability policy be tagged onto his new position? If this is the case, can he advocate on behalf of people with disabilities and those in the arts? I do not think this is possible but it sure is common. I never cease to be amazed how disability policy or coordination is an afterthought. In my experience, such a position is an added element to an already over worked stressed out administrator. For instance, on many college campuses the person assigned to assist students with a disability primary job has nothing to do with disability. It is also not unusual for the person that is assigned to handle disability related matters to have absolutely no experience whatsoever with disability issues. The fact is disability policy and coordination requires an understanding of the law, the ADA in particular, disability rights, disability history, and a measure of understanding with regard to the social obstacles disabled students encounter. When done well, a disability policy specialist can empower students and faculty alike and educate the academic community about civil rights violations that still exist. Sadly, this is unusual as I have come across very few disability analysts that are well paid and can devote the time required to do a good job. The point, is will the Obama administration fall into this trap? Will Dale's position be filled by a person with a detailed knowledge of disability rights and policy? If so, this is a great sign. Maybe Obama does indeed value the inclusion of people with a disability and disability policy in his administration. I for one will be scouring the news for more about who may or may not replace Dale.
Tuesday, March 10, 2009
Idaho is a Dangerous Place to Live
I have posted about assisted suicide and its impact on the disability community. The link between disability and assisted suicide is a constant and ever present reminder that life with a disability is not valued. Of all the people I have met that have a disability those with cognitive issues are the most stigmatized. This is so wrong, so hurtful, so unnecessary that I am at a total loss as to how any caring human can tolerate such stigmatization. But stigma abounds for those with a cognitive deficit and I never cease to be appalled by the way people with cognitive disabilities are isolated from routine social interaction. One experience I had a few years ago highlighted this. I vividly recall going to a Hartford Wolfpack game in Hartford, CT. The Wolfpack are an American Hockey League Team affiliated with my beloved New York Rangers. I was at the game with my son and shortly after we arrived we saw a group of ten to fifteen cognitively disabled adults being escorted to their seats. This group of men and women were seated about ten to fifteen rows away from me. In spite of the fact the arena was crowded within a short period of time I was shocked to notice that this group was circled by rows of empty seats. This was the strangest seating configuration I had ever seen until it dawned on me that the people sitting next to the group people with a cognitively disability purposely left their seats. Why did people move from their seats? They did not want to sit next to a person with a cognitive disability. This bigoted behavior haunts me. I will never forget what took place. How can people be so closed minded? Would these people move if a black man sat next to them? Of course not, that would be bigotry. But these same people saw nothing wrong with moving when a person with a cognitive deficit sat next to them.
I thought of the above group of people with a cognitive disability when I read about an assisted suicide bill that passed in Idaho by a count of 34-0. The bill will allow medical treatment to be withheld from developmentally disabled people if their guardians or conservators consider continued medical care futile or inhumane. Read that last sentence very carefully. The Idaho bill, Senate Bill NO. 1114, would allow a guardian or conservator to withhold medical treatment. In essence, if a person with a "developmental disability" wants to live life support and life sustaining measures can be removed. And who gets to decide what "futile" and "inhumane" means? Doctors and ethics committees. This boggles my mind. Surely the men and women that wrote this law know a little bit of history. Did they ever hear of the T4 program in Nazi Germany? How about the Eugenics Movement in this country? What about Willowbrook Institution? Let me expand upon my reference to Willowbrook Institution. The deplorable conditions at Willowbrook Institution were gut wrenching and a national disgrace. Yet to me the worst part of the Willowbrook controversy was that doctors, social workers, school administrators, neighbors, priests, rabbis, and people too numerous to mention all convinced, forced, parents to institutionalize their children. Fast forward 30 years and the law makers in Idaho now want to give people in identical positions the power to decide whether a person with a developmental disability lives or dies? This thought kept me up last night and I shudder to think of the consequences this law can have on one group of needlessly stigmatized people.
I thought of the above group of people with a cognitive disability when I read about an assisted suicide bill that passed in Idaho by a count of 34-0. The bill will allow medical treatment to be withheld from developmentally disabled people if their guardians or conservators consider continued medical care futile or inhumane. Read that last sentence very carefully. The Idaho bill, Senate Bill NO. 1114, would allow a guardian or conservator to withhold medical treatment. In essence, if a person with a "developmental disability" wants to live life support and life sustaining measures can be removed. And who gets to decide what "futile" and "inhumane" means? Doctors and ethics committees. This boggles my mind. Surely the men and women that wrote this law know a little bit of history. Did they ever hear of the T4 program in Nazi Germany? How about the Eugenics Movement in this country? What about Willowbrook Institution? Let me expand upon my reference to Willowbrook Institution. The deplorable conditions at Willowbrook Institution were gut wrenching and a national disgrace. Yet to me the worst part of the Willowbrook controversy was that doctors, social workers, school administrators, neighbors, priests, rabbis, and people too numerous to mention all convinced, forced, parents to institutionalize their children. Fast forward 30 years and the law makers in Idaho now want to give people in identical positions the power to decide whether a person with a developmental disability lives or dies? This thought kept me up last night and I shudder to think of the consequences this law can have on one group of needlessly stigmatized people.
Monday, March 9, 2009
Choices for People with a Disability
Imagine that you are a 25 year old man: you are single, college educated, and have just started your career. You have an active dating life and hang out with friends on the weekend. You rent a small apartment and have a roommate. An only child, your parents are good hard working class people that made ends meet but have limited savings and some health care issues. Imagine this young man on a hot summer day. He is showing off for his buddies and a girl he is interested in by jumping headfirst into a river from a higher than usual spot. Beer abounds, hot dogs are cooking and all are laughing and having a good time. Yet this man does not pop up to the surface and friends think he is goofing around. A minute or two passes before it is obvious something is very wrong. Friends spring into action, drag him from the water to safety, and a cell phone is used to call EMS. The fun and games come to a jarring halt. Later that day the news is not good: this young man broke his neck and is a quadriplegic.
The young man I have conjured is far from unusual and could in fact be considered an archetype for millions of others his age. The scenario I have outlined is not unusual either. Is what took place a tragedy? In some ways yes. No one, myself included, wants to be paralyzed. Paralysis is a unique life altering experience but the real tragedy is not one's experience with paralysis. Modern medicine does a good job at putting the human body back together after paralysis (I speak from experience). The real tragedy takes place in the days, weeeks, months, and years after one is paralyzed. Our culture is hostile to the presence of people with a disability and does not value our presence. I have thought about this for thirty years and remain puzzled. Why is so much money and effort put into critical care for paralyzed people at the onset of injury and by comparison virtually nothing in support services?
Let me return to my archetypical paralyzed young man. As a quadriplegic he can do most things by himself but certainly not all. He needs help getting dressed and transferring from bed to wheelchair, wheelchair to car and wheelchair to toilet. He cannot lift himself off his butt and as a result is at a very high risk for a pressure sore. He will need an electric wheelchair, sliding board, and other durable medical goods. Once medically stable, he receives the prescribed amount of rehabilitation. Ready to renew his life is when the real trouble begins. The apartment where he lives is totally inaccessible. His parents home is not accessible and they are too infirm to help care for their son. His job involves some labor that he can no longer physically accomplish. His boss informs him he cannot return to work. With no where to go what happens? Thanks to federal and state laws this young man's only viable option is a nursing home. Federal medicaid law considers nursing home care an entitlement. In home care or community based services are an option but subject to available state funding. The state where the young man lives has a waiting list for in home services of over 20,000 names. Off to the nursing home he goes. Within weeks the young man is back in the hospital with a pressure sore. The nursing home did not check his skin until he had a significant sore because they were short staffed. Depressed, the young man lashes out at those around him. His friends and parents stop visiting because he is verbally abusive. The hospital does not want him as a patient nor does the nursing home. Miserable and isolated doctors prescribe medication to stabilize his depression and mood swings. The staff at the hospital and nursing home use his prescriptions to chemically restrain the young man.
The young man I have described is in a classic Catch-22 situation. The odds are within a decade the man will die of a complication related to his paralysis. His death will not be a medical failure but rather a social failure. Simply put, his life was not valued. Sending a man in his 20s to a nursing home is a measure of last resort and study after study has demonstrated that people with a disability fear a nursing home more than a hospital. Nursing homes however remain an entitlement while in home care or community based care is not. Medicaid, the program that provides medical care for the poor and disabled, is overwhelmingly biased in favor of institutional acre. This makes no sense and it is why groups such as ADAPT have embraced the Community Choice Act. I wrote about the CCA on my blog last year and I have learned Vermont, my favorite state, is leading the way in an effort to give people with disabilities the kind of in home or community based care they want. The real kicker here, pun intended, is that community care is not only what people want but a significant saving when compared to nursing home care. What Vermont has done is impressive and important. Its program, Choices for Care, essentially negated the nursing home bias and insured only those with the highest level of need end up in a nursing home.
The mission statement of the Vermont Department of Disabilities, Aging and Independent Living is to make the state the best place "in which to grow old or to live with a disability--with dignity, respect, and independence". The core principles of Choices for Care are lofty:
Person-Centered
The individual will be at the core of all plans and services.
Respect
Individuals, families, providers and staff are treated with respect.
Independence
The individual's personal and economic independence will be promoted.
Choice
Individuals will have options for services and supports.
Self-Determination
Individuals will direct their own lives.
Living Well
The individual's services and supports will promote health and well-being.
Contributing to the Community
Individuals are able to work, volunteer, and participate in local communities.
Flexibility
Individual needs will guide our actions.
Effective and Efficient
Individuals' needs will be met in a timely and cost effective way.
Collaboration
Individuals will benefit from our partnerships with families, communities, providers, and other federal, state and local organizations.
The Choices for Care program has been in existence since 2005 and for the last four years Vermonters with a disability can control the direction of their life. Although not intended to save money, Vermont now serves more people and spends less. This is great but the real key here is choice: people with a disability and the elderly can choose where and how they live. Community based care saves lives and the young man I conjured is a perfect example. What would his life had been like if he was able to live in low income housing and have someone come to his home twice a day to help him dress, shower, and use the toilet? I doubt he would become depressed and need to be chemically restrained. I bet he could have found work on line or within the community he lived. He would not become socially isolated since he had no reason to lash out in frustration. In short, he would lead an ordinary post paralysis life. Sadly, there is significant opposition to community based care in most states and within the federal government. The transition from a system reliant on institutional care versus one based on community based care is difficult but can be done. Vermont is but one example. Community based care makes sense but only if society values the existence of people with a disability.
The young man I have conjured is far from unusual and could in fact be considered an archetype for millions of others his age. The scenario I have outlined is not unusual either. Is what took place a tragedy? In some ways yes. No one, myself included, wants to be paralyzed. Paralysis is a unique life altering experience but the real tragedy is not one's experience with paralysis. Modern medicine does a good job at putting the human body back together after paralysis (I speak from experience). The real tragedy takes place in the days, weeeks, months, and years after one is paralyzed. Our culture is hostile to the presence of people with a disability and does not value our presence. I have thought about this for thirty years and remain puzzled. Why is so much money and effort put into critical care for paralyzed people at the onset of injury and by comparison virtually nothing in support services?
Let me return to my archetypical paralyzed young man. As a quadriplegic he can do most things by himself but certainly not all. He needs help getting dressed and transferring from bed to wheelchair, wheelchair to car and wheelchair to toilet. He cannot lift himself off his butt and as a result is at a very high risk for a pressure sore. He will need an electric wheelchair, sliding board, and other durable medical goods. Once medically stable, he receives the prescribed amount of rehabilitation. Ready to renew his life is when the real trouble begins. The apartment where he lives is totally inaccessible. His parents home is not accessible and they are too infirm to help care for their son. His job involves some labor that he can no longer physically accomplish. His boss informs him he cannot return to work. With no where to go what happens? Thanks to federal and state laws this young man's only viable option is a nursing home. Federal medicaid law considers nursing home care an entitlement. In home care or community based services are an option but subject to available state funding. The state where the young man lives has a waiting list for in home services of over 20,000 names. Off to the nursing home he goes. Within weeks the young man is back in the hospital with a pressure sore. The nursing home did not check his skin until he had a significant sore because they were short staffed. Depressed, the young man lashes out at those around him. His friends and parents stop visiting because he is verbally abusive. The hospital does not want him as a patient nor does the nursing home. Miserable and isolated doctors prescribe medication to stabilize his depression and mood swings. The staff at the hospital and nursing home use his prescriptions to chemically restrain the young man.
The young man I have described is in a classic Catch-22 situation. The odds are within a decade the man will die of a complication related to his paralysis. His death will not be a medical failure but rather a social failure. Simply put, his life was not valued. Sending a man in his 20s to a nursing home is a measure of last resort and study after study has demonstrated that people with a disability fear a nursing home more than a hospital. Nursing homes however remain an entitlement while in home care or community based care is not. Medicaid, the program that provides medical care for the poor and disabled, is overwhelmingly biased in favor of institutional acre. This makes no sense and it is why groups such as ADAPT have embraced the Community Choice Act. I wrote about the CCA on my blog last year and I have learned Vermont, my favorite state, is leading the way in an effort to give people with disabilities the kind of in home or community based care they want. The real kicker here, pun intended, is that community care is not only what people want but a significant saving when compared to nursing home care. What Vermont has done is impressive and important. Its program, Choices for Care, essentially negated the nursing home bias and insured only those with the highest level of need end up in a nursing home.
The mission statement of the Vermont Department of Disabilities, Aging and Independent Living is to make the state the best place "in which to grow old or to live with a disability--with dignity, respect, and independence". The core principles of Choices for Care are lofty:
Person-Centered
The individual will be at the core of all plans and services.
Respect
Individuals, families, providers and staff are treated with respect.
Independence
The individual's personal and economic independence will be promoted.
Choice
Individuals will have options for services and supports.
Self-Determination
Individuals will direct their own lives.
Living Well
The individual's services and supports will promote health and well-being.
Contributing to the Community
Individuals are able to work, volunteer, and participate in local communities.
Flexibility
Individual needs will guide our actions.
Effective and Efficient
Individuals' needs will be met in a timely and cost effective way.
Collaboration
Individuals will benefit from our partnerships with families, communities, providers, and other federal, state and local organizations.
The Choices for Care program has been in existence since 2005 and for the last four years Vermonters with a disability can control the direction of their life. Although not intended to save money, Vermont now serves more people and spends less. This is great but the real key here is choice: people with a disability and the elderly can choose where and how they live. Community based care saves lives and the young man I conjured is a perfect example. What would his life had been like if he was able to live in low income housing and have someone come to his home twice a day to help him dress, shower, and use the toilet? I doubt he would become depressed and need to be chemically restrained. I bet he could have found work on line or within the community he lived. He would not become socially isolated since he had no reason to lash out in frustration. In short, he would lead an ordinary post paralysis life. Sadly, there is significant opposition to community based care in most states and within the federal government. The transition from a system reliant on institutional care versus one based on community based care is difficult but can be done. Vermont is but one example. Community based care makes sense but only if society values the existence of people with a disability.
Tuesday, March 3, 2009
This is to be Expected
In Britain disability is news worthy and two stories are of particular interest. First, Tory leader David Cameron created a stir when he sent out Christmas cards. What made Cameron's archetypical Christmas card photograph of his family controversial was that it included his young song Ivan who has cerebral palsy. Some pundits suggested that Cameron used his son as a political prop designed to make him appear caring and sympathetic. The second story concerns Cerrie Burnell. Ms. Burnell is a presenter on the popular British children's TV show CBeebies. Ms. Burnell's mere presence has upset parents. Within days of her debut the BBC received complaints that Ms. Burnell was "scaring" children and one parent alleged his child had nightmares after seeing the show. What made Ms. Burnell's appearance so frightening? She has no right hand.
I had hoped that these two stories would spark a nuanced debate about disability in the British media. I reasoned that in 2008 the death of Daniel James and Barry Baker provided the foundation for a less hysterical and more substantive debate about disability. I was wrong. A glance at the website for CBeebies revealed a flood of comments, some of which were so nasty they had to be removed. I was stunned by the viscous nature of the comments made about Ms. Burnell. None of the many negative comments came from children but rather parents. To me this is proof that bigotry is learned behavior. The public debate about Ms. Burnell reveals what people with a disability already know: discrimination is an every day phenomenon. Thus when asked by the BBC if she were surprised by the complaints that were levied about her presence Ms. Burnell replied "This is to be expected". Sadly, Ms. Burnell is correct. Worse yet, her sober dignified reply to questions about her missing right hand have been ignored. Instead, there is hysteria, fear, and panic under the guise of "protecting children".
The criticism levied against Ms. Burnell is baseless. It is akin to the raw sort of discrimination that black people, women, and other minority groups encounter. In Ms. Burnell's estimation, discrimination against people with a disability remains common because there are so few disabled characters on television. This point is undoubtedly correct but the inherent prejudice people with a disability encounter runs deeper and is more insidious. In order for people with a disability to make substantive progress in terms of equal rights they need to assert themselves and embrace an identity that tied to their disability. In short , be "disabled and proud". Those unfamiliar with disability don't get this. It is a foreign concept too far removed from "common sense". No one wants to be disabled, right? Correct, no one wants to acquire or be born with a disability. But this does not mean one should hide a disability or be ashamed of it. Yet, this is exactly what we teach children when their disabled peers are sent to school on the "special bus", spend most of the day in "resource rooms" and have to go to the nursing office to use the bathroom because it has the only accessible toilet. The message being sent is clear and accepted without question: disability is very bad and society will, out of the goodness of our heart, provide a "special" place for you. In another era this was called segregation and the Supreme Court ruled it was inherently unequal.
People with a disability that demand equality know a different reality from their bipedal peers. Any disability is part of who we are as human beings. Ms. Burnell maintains that "I'm just like everyone else in that I wear what I feel comfortable in. I don't deliberately try to make people confront my disability, but I do not try to hide it. This is me, and I am neither ashamed nor embarrassed by it". Francesca Martinez, a comedian, considers this to be the "huge secret" about disability--"a disability is like hair colour, eye colour, height, or weight, just another arbitrary feature". Few people without a disability grasp this concept. In Ms. Burnell's case the fact she does not have a right hand is used to dehumanize her--this a a social not a physical failure on her part. What comes first is her disability and her humanity second. Thus people with a disability are public property, subject to intense scrutiny and rude or intrusive questions are the norm. These questions are designed to assert a socially superior position the questioner enjoys. Disability is not "normal" and such difference is supposed to be hidden. Every day more people with a disability are rejecting this idea. I for one see nothing wrong with my paralyzed and twisted body or Ms. Burnell'a lack of a right hand. Disability is simply part of life and society needs to become less discriminating and people with a disability need to assert their civil rights.
I had hoped that these two stories would spark a nuanced debate about disability in the British media. I reasoned that in 2008 the death of Daniel James and Barry Baker provided the foundation for a less hysterical and more substantive debate about disability. I was wrong. A glance at the website for CBeebies revealed a flood of comments, some of which were so nasty they had to be removed. I was stunned by the viscous nature of the comments made about Ms. Burnell. None of the many negative comments came from children but rather parents. To me this is proof that bigotry is learned behavior. The public debate about Ms. Burnell reveals what people with a disability already know: discrimination is an every day phenomenon. Thus when asked by the BBC if she were surprised by the complaints that were levied about her presence Ms. Burnell replied "This is to be expected". Sadly, Ms. Burnell is correct. Worse yet, her sober dignified reply to questions about her missing right hand have been ignored. Instead, there is hysteria, fear, and panic under the guise of "protecting children".
The criticism levied against Ms. Burnell is baseless. It is akin to the raw sort of discrimination that black people, women, and other minority groups encounter. In Ms. Burnell's estimation, discrimination against people with a disability remains common because there are so few disabled characters on television. This point is undoubtedly correct but the inherent prejudice people with a disability encounter runs deeper and is more insidious. In order for people with a disability to make substantive progress in terms of equal rights they need to assert themselves and embrace an identity that tied to their disability. In short , be "disabled and proud". Those unfamiliar with disability don't get this. It is a foreign concept too far removed from "common sense". No one wants to be disabled, right? Correct, no one wants to acquire or be born with a disability. But this does not mean one should hide a disability or be ashamed of it. Yet, this is exactly what we teach children when their disabled peers are sent to school on the "special bus", spend most of the day in "resource rooms" and have to go to the nursing office to use the bathroom because it has the only accessible toilet. The message being sent is clear and accepted without question: disability is very bad and society will, out of the goodness of our heart, provide a "special" place for you. In another era this was called segregation and the Supreme Court ruled it was inherently unequal.
People with a disability that demand equality know a different reality from their bipedal peers. Any disability is part of who we are as human beings. Ms. Burnell maintains that "I'm just like everyone else in that I wear what I feel comfortable in. I don't deliberately try to make people confront my disability, but I do not try to hide it. This is me, and I am neither ashamed nor embarrassed by it". Francesca Martinez, a comedian, considers this to be the "huge secret" about disability--"a disability is like hair colour, eye colour, height, or weight, just another arbitrary feature". Few people without a disability grasp this concept. In Ms. Burnell's case the fact she does not have a right hand is used to dehumanize her--this a a social not a physical failure on her part. What comes first is her disability and her humanity second. Thus people with a disability are public property, subject to intense scrutiny and rude or intrusive questions are the norm. These questions are designed to assert a socially superior position the questioner enjoys. Disability is not "normal" and such difference is supposed to be hidden. Every day more people with a disability are rejecting this idea. I for one see nothing wrong with my paralyzed and twisted body or Ms. Burnell'a lack of a right hand. Disability is simply part of life and society needs to become less discriminating and people with a disability need to assert their civil rights.
Wednesday, February 25, 2009
Higher Education and Disability Based Discrimination
I have a PhD from Columbia University. My parents are very proud of my degree from an Ivy League school. To this day my favorite photograph of my parents sits on my desk. The photograph has them, my son who was an infant, and me in full academic regalia all smiling. I love this photograph because they look so happy and proud. When I look at this photograph I am reminded of a special time in my life. But alongside fond memories are thoughts and experiences that are not so warm and fuzzy. I was among the first disabled students accepted to Columbia University. I was accepted because I was qualified and had the full support of Robert Murphy, a famous anthropologist who happened to be paralyzed. When I arrived on campus I was scared and considered myself woefully unprepared for the rigors of graduate school. This was an accurate assessment. Murphy could not have been more supportive of me and he was brilliant and blunt man. My first semester at Columbia he told me he would get whatever accommodation I needed. He also warned me that I could not fail. If I failed there was no doubt in his mind that this would be used to justify the future exclusion of disabled students at Columbia for many years. This thought terrified and inspired me because I knew it was true. I worked as hard as humanly possible and when access problems arose as they did daily Murphy had the power to solve them. Without Murphy, there is no chance I would have succeeded and he trusted me to carry a heavy burden. I felt overwhelming pressure to excel. In fact, I did not want to just excel I wanted to exceed all expectations and be an academic star.
My experience at Columbia came back to me today when I read an article, "U. Reports Lower Number of Disabled Students than Peer Institutions" published by the Daily Princetonian. According to staff writer Joanne Chong disabled students make up less than 2% of the Princeton University body. To me, this is a depressing statistic when one considers it is even lower than the average 3 to 4% of disabled students at other Ivy League universities. Why is this a depressing statistic? It is proof that the educational and cultural barriers that existed when I was an undergraduate and graduate student remain common place. Worse yet, at Princeton the Office of Disability Services is less than three years old. This does not surprise me in the least in spite of the fact the ADA was passed almost 20 years ago. My experience has been that prestigious universities such as Columbia, Harvard, Princeton, Yale, etc all are needlessly exclusionary. Barriers in terms of wheelchair access and accommodations for people with a host of disabilities are the norm. A culture of perfection exists at schools like Princeton and Columbia and it is assumed students with disabilities have no place on campus. High academic standards, excellence, rigorous work, outstanding performance are not the first things that come to mind when one thinks of disability. What do most people think when they see a man such as myself that uses a wheelchair and is paralyzed? Limits. People without any knowledge of disability think of all the things I cannot do rather than the myriad of ways I have adapted to paralysis. Given this instant negative evaluation, lowered expectations exist and the belief that accommodations are tantamount to charity are all too common. This is a deadly combination that creates overwhelming obstacles for many people with disabilities. Such obstacles exist in most institutions and are more obvious at places like Princeton.
In the article I read one quote struck me as particularly astute. A disabled student noted that everyone at Princeton was nice but there was an "unmovable wall of tradition that is very difficult to change". I encountered this metaphorical wall at Columbia in the early 1990s, Ed Roberts, founder of the independent living movement, encountered this wall at the University of California in the 1970s, and students with disabilities encounter this at secondary and post secondary educational institutions today. Progress is taking place but at a glacial pace. This is infuriating to me and thousands of other people with disabilities that simply want access to an equal education.
What has changed is the law. Laws exist that are designed to empower students with disabilities but attitudinal and architectural barriers remain. Students with disabilities know this and are often afraid or too timid to assert their rights. Thus students with invisible cognitive disabilities to give but one example do not seek extra time for a test because such an accommodation may be perceived as unfair advantage. No one explicitly states this and the discrimination is more subtle and insidious. It takes the form of a professor who bemoans the fact campuses are "over run by students with learning disabilities". This statement was made by a colleague of mine who embraces diversity for everyone but people with disabilities.
It is not easy to ask or demand accommodations be made. This is a time consuming thankless task that is perceived by those unfamiliar with disability as a narcisstic endeavor. If I have learned one thing about academic life it is that universities hate change. Making any exception, i.e. accommodations, to well established traditions are not taken lightly. Given this I was not surprised to read that "At the heart of our philosophy is the belief that the course structure is an essential element of a Princeton education. As part of a comprehensive approach to a liberal arts education, we expect the full engagement of our students as members of an intellectual community, and our degree program assumes a common experience of full-time residential study". This rigid structure works for most students but certainly not all. If such rigidity is strictly enforced the number of students with disabilities at Princeton and other universities will remain statistically insignificant. In fact, I would not be writing these words if a basic and reasonable accommodation was not made for me when I was an undergraduate. You see in 1978 I was a newly minted paraplegic just out of the hospital. Like my peers, I headed off to college but I was far from physically capable of carrying a full schedule of classes. The university I attended, Hofstra, permitted me to live in the dorms even though I took three classes, one class short of the minimum allowed. This basic accommodation made in my freshman year gave me the time needed to strengthen my body and mind after years of serious debilitating illness. Today, Princeton would categorically refuse to make such an accommodation.
It is in the best interest of universities to accommodate and embrace students with disabilities. Diversity is important and incorporating disabled students and faculty members on campus can only enhance academic communities. What is lacking on far too many campuses nationwide is the utter lack of progressive attitudes when it comes to disability. Faculty members who vigorously seek to incorporate students of color, women, gays, and other minority groups that are under represented have conspicuously ignored if not actively discriminated against students with disabilities. Is it really that hard to make sure buildings are accessible, hire interpreters for deaf students, provide students with a learning disability extra time to take an exam, and have a disability services officer on campus that can facilitate all this? Not in my estimation. What institutions of higher education lack is the insight and will to make this happen. I for one think academic tradition and tight budgets, a one two knock out punch regularly used to exclude people with disabilities, are poor excuses. Surely if one is smart enough to teach and work at an institution of higher education a solution to the inclusion of people with disabilities can be found and implemented.
My experience at Columbia came back to me today when I read an article, "U. Reports Lower Number of Disabled Students than Peer Institutions" published by the Daily Princetonian. According to staff writer Joanne Chong disabled students make up less than 2% of the Princeton University body. To me, this is a depressing statistic when one considers it is even lower than the average 3 to 4% of disabled students at other Ivy League universities. Why is this a depressing statistic? It is proof that the educational and cultural barriers that existed when I was an undergraduate and graduate student remain common place. Worse yet, at Princeton the Office of Disability Services is less than three years old. This does not surprise me in the least in spite of the fact the ADA was passed almost 20 years ago. My experience has been that prestigious universities such as Columbia, Harvard, Princeton, Yale, etc all are needlessly exclusionary. Barriers in terms of wheelchair access and accommodations for people with a host of disabilities are the norm. A culture of perfection exists at schools like Princeton and Columbia and it is assumed students with disabilities have no place on campus. High academic standards, excellence, rigorous work, outstanding performance are not the first things that come to mind when one thinks of disability. What do most people think when they see a man such as myself that uses a wheelchair and is paralyzed? Limits. People without any knowledge of disability think of all the things I cannot do rather than the myriad of ways I have adapted to paralysis. Given this instant negative evaluation, lowered expectations exist and the belief that accommodations are tantamount to charity are all too common. This is a deadly combination that creates overwhelming obstacles for many people with disabilities. Such obstacles exist in most institutions and are more obvious at places like Princeton.
In the article I read one quote struck me as particularly astute. A disabled student noted that everyone at Princeton was nice but there was an "unmovable wall of tradition that is very difficult to change". I encountered this metaphorical wall at Columbia in the early 1990s, Ed Roberts, founder of the independent living movement, encountered this wall at the University of California in the 1970s, and students with disabilities encounter this at secondary and post secondary educational institutions today. Progress is taking place but at a glacial pace. This is infuriating to me and thousands of other people with disabilities that simply want access to an equal education.
What has changed is the law. Laws exist that are designed to empower students with disabilities but attitudinal and architectural barriers remain. Students with disabilities know this and are often afraid or too timid to assert their rights. Thus students with invisible cognitive disabilities to give but one example do not seek extra time for a test because such an accommodation may be perceived as unfair advantage. No one explicitly states this and the discrimination is more subtle and insidious. It takes the form of a professor who bemoans the fact campuses are "over run by students with learning disabilities". This statement was made by a colleague of mine who embraces diversity for everyone but people with disabilities.
It is not easy to ask or demand accommodations be made. This is a time consuming thankless task that is perceived by those unfamiliar with disability as a narcisstic endeavor. If I have learned one thing about academic life it is that universities hate change. Making any exception, i.e. accommodations, to well established traditions are not taken lightly. Given this I was not surprised to read that "At the heart of our philosophy is the belief that the course structure is an essential element of a Princeton education. As part of a comprehensive approach to a liberal arts education, we expect the full engagement of our students as members of an intellectual community, and our degree program assumes a common experience of full-time residential study". This rigid structure works for most students but certainly not all. If such rigidity is strictly enforced the number of students with disabilities at Princeton and other universities will remain statistically insignificant. In fact, I would not be writing these words if a basic and reasonable accommodation was not made for me when I was an undergraduate. You see in 1978 I was a newly minted paraplegic just out of the hospital. Like my peers, I headed off to college but I was far from physically capable of carrying a full schedule of classes. The university I attended, Hofstra, permitted me to live in the dorms even though I took three classes, one class short of the minimum allowed. This basic accommodation made in my freshman year gave me the time needed to strengthen my body and mind after years of serious debilitating illness. Today, Princeton would categorically refuse to make such an accommodation.
It is in the best interest of universities to accommodate and embrace students with disabilities. Diversity is important and incorporating disabled students and faculty members on campus can only enhance academic communities. What is lacking on far too many campuses nationwide is the utter lack of progressive attitudes when it comes to disability. Faculty members who vigorously seek to incorporate students of color, women, gays, and other minority groups that are under represented have conspicuously ignored if not actively discriminated against students with disabilities. Is it really that hard to make sure buildings are accessible, hire interpreters for deaf students, provide students with a learning disability extra time to take an exam, and have a disability services officer on campus that can facilitate all this? Not in my estimation. What institutions of higher education lack is the insight and will to make this happen. I for one think academic tradition and tight budgets, a one two knock out punch regularly used to exclude people with disabilities, are poor excuses. Surely if one is smart enough to teach and work at an institution of higher education a solution to the inclusion of people with disabilities can be found and implemented.
Monday, February 23, 2009
David Paterson and the Blind NY POST
A few hours ago I read Planet of the Blind blog entry "Governor Paterson's Blindness and the Public's Incomprehension Leads to an Avalanche of Stereotypes". In Steve Kuusisto's wonderfully acerbic entry he deconstructs the flawed logic of Ben Smith, a writer at Politico, and a New York Post editorial that assert Governor Paterson has failed to perform adequately because he is blind. Smith and the NY Post acknowledge the Spitzer fiasco and the financial crisis are major variables but they maintain Paterson's "troubles" are largely of his own making. Politically, they have a point but like Kuusisto I strenuously object to their assertion that Paterson's failure is tied to the fact he is blind. The NY Post is entertaining to read but often unbalance, biased and in this case dead wrong. On February 19 the NY Post maintained: "Paterson's blindness severely constricts his ability to acquire basic information. His administration is adrift; he is inconsistent, imprecise and often contradictory in his public statements. To put it bluntly, the governor needs competent help". I don't disagree with the political content of the NY Post editorial. Paterson has truly struggled since he took office and some of his decisions make me scratch my head. But connecting Paterson's blindness with his struggles in office is wrong and based on antiquated stereotypes. Kuusisto deconstructs this logic better than I can and as he points out it is based on painfully simple logic: "Blind People can't see. One must see to read. Therefore blind people can't read".
I have just one point to add to Kuusisto's comments about Paterson and that has to do with Ben Smith's opening remarks in "Paterson's Blindness" made on February 19. Smith wrote: "New York Gov. Paterson's story was, when he unexpectedly took office upon Eliot Spitzer's fall, told in familiar terms as triumph over adversity. He had risen to the highest level of government despite being almost entirely blind since birth, and despite not ever having learned to read Braille. This is how America talks about disabilities, and there was no reason to initially not to portray Paterson as having risen to the challenge". Sadly, this is indeed how Americans think of disability in the broadest sense of the term. Governor Paterson overcame "adversity" but what sort of adversity did he encounter? Paterson has been clear on this point: the "adversity" he had to overcome was an educational system that did not want to teach him because he was blind. Schools did not want to spend money on the technology that would make it possible for him to read. He was not worth the effort or expense. This is a form of bigotry few who can walk, see, and hear are willing to acknowledge. In refusing to recognize the civil rights of people with a host of disabilities society clings to stereotypes and the result is that Paterson becomes a straw figure in the eyes of many. He "overcame" a disability and thus is a prime example of superman iconography. He is no mere mortal but a super human person who in spite of his blindness puts all others to shame. The other way Paterson is portrayed is the SNL version: a bumbling fool, disoriented, unable to read, and grossly incompetent.
The total lack of nuance associated with media portrayals of disability ignores a basic fact: people with disabilities are no different than anyone else with the exception of the way they have adapted to a type of physical deficit. We as a species, that is the animal that we humans are, possess an inherent prejudice against all those that are different. Difference is feared and stigmatized. This is learned behavior and people with disabilities are considered a class a part. In Paterson's case he is not just an ordinary politician who has struggled once he took office in a prominent position. No, Paterson is the "blind governor" and what comes first and foremost is that word blind. Blindness is feared just as much as paralysis and many other disabilities. This infuriates me and I for one wonder why can't the media delve into what "legally blind" means? What are the options open to people with profound visual deficits? How many people use guide dogs and what other mobility options exist for blind people? Sadly, these sorts of questions do not generate catchy titles and are heavy on substance. Instead we read editorials such as the one about Paterson in the NY Post that assumes Paterson failed because he is blind. This is an opinion based on a stereotype and lacks any foundation. The implications are great for one could easily assume not only is Paterson incompetent but so are all other blind people and by extension anyone with a disability. To me, this accounts for why so many people with a disability are unemployed and encounter needless obstacles on a daily basis. We as a society can do much better if we would only be willing to use our best asset: our powerful and ever adaptable minds.
I have just one point to add to Kuusisto's comments about Paterson and that has to do with Ben Smith's opening remarks in "Paterson's Blindness" made on February 19. Smith wrote: "New York Gov. Paterson's story was, when he unexpectedly took office upon Eliot Spitzer's fall, told in familiar terms as triumph over adversity. He had risen to the highest level of government despite being almost entirely blind since birth, and despite not ever having learned to read Braille. This is how America talks about disabilities, and there was no reason to initially not to portray Paterson as having risen to the challenge". Sadly, this is indeed how Americans think of disability in the broadest sense of the term. Governor Paterson overcame "adversity" but what sort of adversity did he encounter? Paterson has been clear on this point: the "adversity" he had to overcome was an educational system that did not want to teach him because he was blind. Schools did not want to spend money on the technology that would make it possible for him to read. He was not worth the effort or expense. This is a form of bigotry few who can walk, see, and hear are willing to acknowledge. In refusing to recognize the civil rights of people with a host of disabilities society clings to stereotypes and the result is that Paterson becomes a straw figure in the eyes of many. He "overcame" a disability and thus is a prime example of superman iconography. He is no mere mortal but a super human person who in spite of his blindness puts all others to shame. The other way Paterson is portrayed is the SNL version: a bumbling fool, disoriented, unable to read, and grossly incompetent.
The total lack of nuance associated with media portrayals of disability ignores a basic fact: people with disabilities are no different than anyone else with the exception of the way they have adapted to a type of physical deficit. We as a species, that is the animal that we humans are, possess an inherent prejudice against all those that are different. Difference is feared and stigmatized. This is learned behavior and people with disabilities are considered a class a part. In Paterson's case he is not just an ordinary politician who has struggled once he took office in a prominent position. No, Paterson is the "blind governor" and what comes first and foremost is that word blind. Blindness is feared just as much as paralysis and many other disabilities. This infuriates me and I for one wonder why can't the media delve into what "legally blind" means? What are the options open to people with profound visual deficits? How many people use guide dogs and what other mobility options exist for blind people? Sadly, these sorts of questions do not generate catchy titles and are heavy on substance. Instead we read editorials such as the one about Paterson in the NY Post that assumes Paterson failed because he is blind. This is an opinion based on a stereotype and lacks any foundation. The implications are great for one could easily assume not only is Paterson incompetent but so are all other blind people and by extension anyone with a disability. To me, this accounts for why so many people with a disability are unemployed and encounter needless obstacles on a daily basis. We as a society can do much better if we would only be willing to use our best asset: our powerful and ever adaptable minds.
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