According to AP reports, Oscar Pistorius is going to contest the IAAF ruling that he cannot compete in the Olympics. Pistorius will bring his case to the Court of Arbitration for Sport in Switzerland. I admire Pistorius--not for contesting the IAAF conclusions that ban him from competing but for the larger framework in which he has based his argument. AP reports quote Pistorius: "I feel it is my responsibility, on behalf of myself and all other disabled athletes to stand firmly and not allow one organization to inhibit our ability to compete using the very tools without which we simply cannot walk let alone run".
I am interested to see how the media reacts to Pistorius stance. Sadly, I am not hopeful a nuanced view will prevail. Judging by reports and columns already published in the New York Times Pistorius' cause will be demeaning. The IAAF is already attacking Pistorius claiming they have no idea what his motivation is. Like any other athlete with or without legs, Pistorius dreams of competing in the Olympics. As to the IAAF claims that Pistorius prothesis give him an unfair advantage, I suggest they do a little bit of reading about the needless social obstacles disabled people are forced to overcome.
Friday, January 11, 2008
Thursday, January 10, 2008
Sport, Disability, and Media Distortion
Avid golfers probably recall the name Casey Martin. They likely remember Martin was the professional golfer who fought for the right to use a golf cart on the PGA tour. In 1997 Martin sued the PGA under the ADA arguing that a golf cart was a workplace accommodation. Martin's case went all the way to the Supreme Court and, much to the dismay of the PGA, the court ruled Martin was correct.
I have not thought about Martin until this morning when I read the New York Times with my coffee. In the sports section I was interested to read a story about Oscar Pistorius (Study Suggests That Amputee Holds Unfair Advantage). Very few Americans know who Pistorius is. I have heard the name and know he is a world class paralympic sprinter from South Africa. I only know this much because Pistorius has had the nerve to compete and beat some bipedal runners. In short, he is a world class athlete but this is not why Pistorius is controversial. Pistrorius wants to compete in the Olympics against able bodied runners. The International Association of Athletics Federations (IAAF), track's governing body, has been and remains opposed to including Pistorius. Even though there is no scientific evidence, the IAAF claims Pistorius' high tech prosthesis called cheetahs give him an unfair advantage over able bodies athletes. The chances of Pistorius ever competing in the Olympics are a long shot at best.
According to the New York Times, the IAAF spent $50,000 researching the Pistorius case and concluded that any disabled athlete that wants to compete against able bodied athletes must prove that any adaptive device such as Pistorius' prosthetic legs does not give them an advantage over able bodies athletes. The IAAF conclusion mirrors recent Supreme Court decisions, especially the Sutton Trilogy, that requires disabled people to prove they are in fact disabled (in the eyes of the court it is possible to be too disabled or, conversely, not disabled enough). When I made this connection between the IAAF and the Supreme Court I realized not much has changed when it comes to the perception of disabled athletes and how they are portrayed in the media.
Disabled athletes and adaptive sports provide mainstream media outlets with endless fodder for what I call feel good stories. Disabled people know what I am writing about--the dreaded 90 second piece at the end of the national news that portrays the "remarkable, "heart warming" story about a disabled person who finishes a marathon or some other athletic event. What is celebrated is not the athletic achievement but the ability of a person to "overcome" obstacles that prove the person in question is amazing. Reducing the accomplishments of disabled athletes to nothing more than such a feel good story is nothing short of demeaning. It reinforces every negative stereotype about disability and conveniently ignores the fact the overwhelming number of problems disabled people encounter are social. At issue is not a disabled person's ability but rather how they handle a specific physical disability. Thus Martin's athletic skills are reduced to a discussion about his request for a golf cart or Pistorius' use of high tech prosthesis. Both men violated a social norm--they are too good. They are significantly better than other disabled athletes and, worse yet, capable of beating able bodies athletes. This does not fit anywhere within the realm of "feel good stories". The result it that the New York Times and other mainstream media outlets do not know what to make of athletes such as Martin and Pistorius. In contrast, like other disabled people I have no such issues. To me, the two men in question are simply world class athletes who deserve respect.
I have not thought about Martin until this morning when I read the New York Times with my coffee. In the sports section I was interested to read a story about Oscar Pistorius (Study Suggests That Amputee Holds Unfair Advantage). Very few Americans know who Pistorius is. I have heard the name and know he is a world class paralympic sprinter from South Africa. I only know this much because Pistorius has had the nerve to compete and beat some bipedal runners. In short, he is a world class athlete but this is not why Pistorius is controversial. Pistrorius wants to compete in the Olympics against able bodied runners. The International Association of Athletics Federations (IAAF), track's governing body, has been and remains opposed to including Pistorius. Even though there is no scientific evidence, the IAAF claims Pistorius' high tech prosthesis called cheetahs give him an unfair advantage over able bodies athletes. The chances of Pistorius ever competing in the Olympics are a long shot at best.
According to the New York Times, the IAAF spent $50,000 researching the Pistorius case and concluded that any disabled athlete that wants to compete against able bodied athletes must prove that any adaptive device such as Pistorius' prosthetic legs does not give them an advantage over able bodies athletes. The IAAF conclusion mirrors recent Supreme Court decisions, especially the Sutton Trilogy, that requires disabled people to prove they are in fact disabled (in the eyes of the court it is possible to be too disabled or, conversely, not disabled enough). When I made this connection between the IAAF and the Supreme Court I realized not much has changed when it comes to the perception of disabled athletes and how they are portrayed in the media.
Disabled athletes and adaptive sports provide mainstream media outlets with endless fodder for what I call feel good stories. Disabled people know what I am writing about--the dreaded 90 second piece at the end of the national news that portrays the "remarkable, "heart warming" story about a disabled person who finishes a marathon or some other athletic event. What is celebrated is not the athletic achievement but the ability of a person to "overcome" obstacles that prove the person in question is amazing. Reducing the accomplishments of disabled athletes to nothing more than such a feel good story is nothing short of demeaning. It reinforces every negative stereotype about disability and conveniently ignores the fact the overwhelming number of problems disabled people encounter are social. At issue is not a disabled person's ability but rather how they handle a specific physical disability. Thus Martin's athletic skills are reduced to a discussion about his request for a golf cart or Pistorius' use of high tech prosthesis. Both men violated a social norm--they are too good. They are significantly better than other disabled athletes and, worse yet, capable of beating able bodies athletes. This does not fit anywhere within the realm of "feel good stories". The result it that the New York Times and other mainstream media outlets do not know what to make of athletes such as Martin and Pistorius. In contrast, like other disabled people I have no such issues. To me, the two men in question are simply world class athletes who deserve respect.
Thursday, January 3, 2008
Adaptive Skiing and Sports
My son Tom and I are new to alpine skiing. After he "retired" from hockey last year we were interested in taking up a new sport--something that was physically taxing, fun, and, from my viewpoint, would take him far away from his Xbox. When my niece, who works as a program co-ordinator for Vermont Adaptive, invited us up last winter we jumped at the chance. It turned out my son was a natural on skis. I was not so gifted and struggled for a variety of reasons foremost among them finding the correct sit ski (for a person with a high level of injury, t-3, the correct gear is very important).
This ski season has gone much better. Using a dual sit ski as opposed to a mono ski that is common I expect (hope) to be independent by the end of the season. I love the freedom and sensation of skiing. Being outside in the cold, the views from the summit, and seeing my son speeding by me are all wonderful. But I wonder what other non-disabled people really think about my efforts. In Vermont I rarely get that "Oh my gosh, you are such an inspiration" comment that I detest. Yet I remain concerned about how I am perceived. Do others understand that I am like any other parent who simply wants to spend time with their kid? This question leads me to wonder about the value of adaptive sports. Here I am not referring to events such as the Para-Olympics where the athletes are young, gifted, and driven. These men and women are professionals and should be perceived as such.
I am your typical weekend warrior--nothing more and nothing less. I am skiing to have fun like the vast majority of people. But I am not like others. I use and wheelchair and sit ski. Do people look beyond my wheelchair and sit ski and see me for who I am? I would like to think so yet I am not sure this is the case. When you add in the high cost of skiing my concerns grow exponentially. What is the point of having adaptive sport programs if 70% of disabled people are unemployed? Do not misconstrue what I am trying to get at: adaptive sport programs are great and have a place in society. It is just that on our drive back home I was pre-occupied with the gross economic and social inequities that disabled people encounter on a daily basis. Social stigma and the lack of economic independence prevent far too many disabled people from leaving their home and, for some, visiting a ski area is a pipe dream. As we approached home I broached this issue with my son who has an innate ability to reduce complex issues to their most common denominator. He remarked that I could not change the world in one weekend and that I should really be thinking about ways to improve my form so that I could keep up with him. He went on to note that what made people think the most in his estimation was little a little sign my niece put on my wheelchair while I was skiing. It stated: "Gone Skiing". He told me that as people trudged by, many stopped, thought a second or two and laughed. This, he thought, was an indication that people questioned their preconceived notions about "dudes that use a wheelchair" and that I should just enjoy myself. I hope my son is correct and will work on not only my form but on advances the rights of disabled people.
This ski season has gone much better. Using a dual sit ski as opposed to a mono ski that is common I expect (hope) to be independent by the end of the season. I love the freedom and sensation of skiing. Being outside in the cold, the views from the summit, and seeing my son speeding by me are all wonderful. But I wonder what other non-disabled people really think about my efforts. In Vermont I rarely get that "Oh my gosh, you are such an inspiration" comment that I detest. Yet I remain concerned about how I am perceived. Do others understand that I am like any other parent who simply wants to spend time with their kid? This question leads me to wonder about the value of adaptive sports. Here I am not referring to events such as the Para-Olympics where the athletes are young, gifted, and driven. These men and women are professionals and should be perceived as such.
I am your typical weekend warrior--nothing more and nothing less. I am skiing to have fun like the vast majority of people. But I am not like others. I use and wheelchair and sit ski. Do people look beyond my wheelchair and sit ski and see me for who I am? I would like to think so yet I am not sure this is the case. When you add in the high cost of skiing my concerns grow exponentially. What is the point of having adaptive sport programs if 70% of disabled people are unemployed? Do not misconstrue what I am trying to get at: adaptive sport programs are great and have a place in society. It is just that on our drive back home I was pre-occupied with the gross economic and social inequities that disabled people encounter on a daily basis. Social stigma and the lack of economic independence prevent far too many disabled people from leaving their home and, for some, visiting a ski area is a pipe dream. As we approached home I broached this issue with my son who has an innate ability to reduce complex issues to their most common denominator. He remarked that I could not change the world in one weekend and that I should really be thinking about ways to improve my form so that I could keep up with him. He went on to note that what made people think the most in his estimation was little a little sign my niece put on my wheelchair while I was skiing. It stated: "Gone Skiing". He told me that as people trudged by, many stopped, thought a second or two and laughed. This, he thought, was an indication that people questioned their preconceived notions about "dudes that use a wheelchair" and that I should just enjoy myself. I hope my son is correct and will work on not only my form but on advances the rights of disabled people.
Friday, December 7, 2007
ER Kills Again
ER is coming to a dreadful and painful end. Last night another bad episode appeared and continued the steady assault on disability rights. It seems the writers have decided to kill every person that uses a ventilator to breathe. Age does not matter--a few episodes ago the writers killed a child and last night they killed an elderly woman. Both murdered characters were sentient and aware. The dialogue was particularly dreadful last night and I have no doubt any one who uses a ventilator must have been deeply offended. I sincerely hope that others who have some experience in this area--not with death but use of a ventilator--will comment on the latest episode of ER and heap scorn on the episode
Thursday, December 6, 2007
NYT on Death and Disability
I read a very long article in the Sunday NYT Magazine section entitled "A Death in the Family". Much of what the author, Daniel Bergner, wrote about that touched upon disability I found offensive at multiple levels. The article in question is about Booth Gardner who was a two term governor of the state of Washington during the late 1980s and early 1990s. It has been 14 years since Gardner was in office and he now has Parkinson's disease. His "last campaign" is a single minded effort to get an expansive death with dignity bill passed Washington.
When I first read Bergner's article I was angry--how could the NYT publish such a well written piece of crap. I know, as do many others, that the NYT is more often than not antagonistic to disability rights but Bergner's article takes this to an entirely different level. I am not sure who I dislike more--the NYT, Bergner, or Gardner. I cannot dissect the NYT antagonism to disability rights but I can state with certainty that Bergner and Gardner have out of control and over sized egos.
I found Gardner a tragic figure but not for the reasons Bergner wrote about. Gardner seems to me to be an an ego maniac who is unable to live without a spotlight on himself. Bergner detail Gardner's disfunctional family life and his quest to pass a death with dignity law speaks volumes about the author and subject but little about the central issues involved in the right to die debate. Let me be explicit: Gardner's quest is not about control, "my life, my death, my control" as he puts it. If this was his aim there is nothing that can stop him except for himself. There is simply no basis in reality that assisted suicide is about self autonomy or control as Gardner puts it. If one is determined they can empower themselves and end their own life or seek out help--and if the person in question is terminally ill and makes a serious request I doubt many physicians would deny their request. Death with dignity laws are simply not needed and discriminatory--it is just to easy to target those society does not value foremost among them the elderly and disabled.
What Bergner's article does is cater to Gardner's quest for the spot light and reader's prurient interest in end of life decisions. But the sub-text, and it not very subtle at all, is an overwhelmingly negative view of aging and disability. Here is Bergner's description of Parkinson's: it "isn't terminal. The disease can leave the body trembling, contorted, rigid; it can rob the memory and muffle the voice; it can leave a person silent; but it doesn't offer an end to its torture". This passage and many others like it are gratuitous and not necessary. They are also damning and question why anyone would ever want to live with a disability. Is it not easier to just help the elderly, infirm, and disabled die?
After some reflection, I feel sorry for Gardner and Bergner. Gardner just cannot accept he will never be the center of attention again--that his time for the spotlight has come and gone. I also wonder to what extent he is being used by others to advance and expand the death with dignity laws. As for Bergner, I was stunned and saddened when he admitted that his father has Parkinson disease. I was stunned because there is one fine passage in the article. I was sad because his father's condition seems to prevent him from seeing his father as often as he might wish. It is as though he is afraid of his father with whom I suspect he once had a good relationship. Bergner writes that although he "lives close by, I visit him too briefly, too infrequently." He also struggled to tell his father about the article. It is in the same paragraph that I found one excellent passage: "I had been scared that the mere fact of the subject being broached between us would lower barriers--within him, within me; against suicide, against a quiet kind of patricide--barriers whose existence I didn't even want to think about, because to acknowledge them would be to confront the impulses they guard against". This leads me to wonder is Bergner afraid his father will ask him for help committing suicide or does he want to see his father to take his own life? I suspect Bergner does not want to see his father suffer and wants an easy way out--he does not want himself and other "sons and daughters like me" to "confront so much decrepitude and mortality, the realities that keep my visits too brief and too infrequent".
In conclusion, Bergner's article is self serving and sad. It has far more to do with his own cowardly behavior and refusal to accept his father's condition than it does death with dignity. It also reminded me why, in retrospect, I feel good about myself and the way I was able to be there for my own father after he had had a major stroke. Despite the fact seeing him and his impaired condition was profoundly depressing at times I was able to support him as much as possible and hope I made his last few months as meaningful as possible.
When I first read Bergner's article I was angry--how could the NYT publish such a well written piece of crap. I know, as do many others, that the NYT is more often than not antagonistic to disability rights but Bergner's article takes this to an entirely different level. I am not sure who I dislike more--the NYT, Bergner, or Gardner. I cannot dissect the NYT antagonism to disability rights but I can state with certainty that Bergner and Gardner have out of control and over sized egos.
I found Gardner a tragic figure but not for the reasons Bergner wrote about. Gardner seems to me to be an an ego maniac who is unable to live without a spotlight on himself. Bergner detail Gardner's disfunctional family life and his quest to pass a death with dignity law speaks volumes about the author and subject but little about the central issues involved in the right to die debate. Let me be explicit: Gardner's quest is not about control, "my life, my death, my control" as he puts it. If this was his aim there is nothing that can stop him except for himself. There is simply no basis in reality that assisted suicide is about self autonomy or control as Gardner puts it. If one is determined they can empower themselves and end their own life or seek out help--and if the person in question is terminally ill and makes a serious request I doubt many physicians would deny their request. Death with dignity laws are simply not needed and discriminatory--it is just to easy to target those society does not value foremost among them the elderly and disabled.
What Bergner's article does is cater to Gardner's quest for the spot light and reader's prurient interest in end of life decisions. But the sub-text, and it not very subtle at all, is an overwhelmingly negative view of aging and disability. Here is Bergner's description of Parkinson's: it "isn't terminal. The disease can leave the body trembling, contorted, rigid; it can rob the memory and muffle the voice; it can leave a person silent; but it doesn't offer an end to its torture". This passage and many others like it are gratuitous and not necessary. They are also damning and question why anyone would ever want to live with a disability. Is it not easier to just help the elderly, infirm, and disabled die?
After some reflection, I feel sorry for Gardner and Bergner. Gardner just cannot accept he will never be the center of attention again--that his time for the spotlight has come and gone. I also wonder to what extent he is being used by others to advance and expand the death with dignity laws. As for Bergner, I was stunned and saddened when he admitted that his father has Parkinson disease. I was stunned because there is one fine passage in the article. I was sad because his father's condition seems to prevent him from seeing his father as often as he might wish. It is as though he is afraid of his father with whom I suspect he once had a good relationship. Bergner writes that although he "lives close by, I visit him too briefly, too infrequently." He also struggled to tell his father about the article. It is in the same paragraph that I found one excellent passage: "I had been scared that the mere fact of the subject being broached between us would lower barriers--within him, within me; against suicide, against a quiet kind of patricide--barriers whose existence I didn't even want to think about, because to acknowledge them would be to confront the impulses they guard against". This leads me to wonder is Bergner afraid his father will ask him for help committing suicide or does he want to see his father to take his own life? I suspect Bergner does not want to see his father suffer and wants an easy way out--he does not want himself and other "sons and daughters like me" to "confront so much decrepitude and mortality, the realities that keep my visits too brief and too infrequent".
In conclusion, Bergner's article is self serving and sad. It has far more to do with his own cowardly behavior and refusal to accept his father's condition than it does death with dignity. It also reminded me why, in retrospect, I feel good about myself and the way I was able to be there for my own father after he had had a major stroke. Despite the fact seeing him and his impaired condition was profoundly depressing at times I was able to support him as much as possible and hope I made his last few months as meaningful as possible.
Friday, November 16, 2007
ER Time Warp
First aired in 1994, the one hour drama ER was an innovative TV show. Initially it was thought to be a bit too gory and filled with needless medical jargon. Within a short period of time the show became a major hit for NBC. In my view, its success was built on the ethical and personal dilemmas the cast and characters in specific episodes encountered. I don't know when or even why but somewhere along the line ER deteriorated into nothing more than your average soap opera--though a well written and had a cast of attractive men and women. Of course the doctors remain handsome and heroic and the nurses pretty and dedicted.
I only watch the show once in a while and saw the latest eprisode last night--11/15/07. By the end of the hour, I was ready to throw a rock through the TV I was so angry. Last night's ER epsisode was typical soap opera fodder and I had no intention of watching the entire show until one of the episode characters turned out to be a paraplegic father. Wow, I thought, this is great. Mainstream TV will demonstrate the barriers disabled parents face when caring for their children. I could not have been more wrong for the ER writers took a step back in time--way back in time to demonstrate that crippled people are angry. Not exactly ground breaking material. Why are crippled people angry? Because they cannot walk and hate what happened to them and are tortured by their disability. When watching the show it reminded me of an old expression that was once common--"crippled disposition"--that is, crippled people are miserable because they are crippled. This is dead wrong. I get angry, as do other cripples, but it has nothing to do with my inability to walk. Crippled people get angry because they are treated poorly and their civil rights are violated on a regular basis. This was never raised.
ER writer must have missed the last twenty years of disability rights. The plot line was simple and had potential. The paraplegic character is the father of an early teenage boy who enters the ER with a serious injury. Doctors ask him how he got hurt and his reply was "cleaning out the gutters". After doctors and nurses exchange glance the boy quicly explains his father is a paraplegic and his father could get in the ambulance. What is the focus here? What the father cannot do and implies way too much responsibility is placed ont he child. When the father appears he is angry, confrontational and bitter about what happened to him when he was injured. Of course all this is revealed in a overly dramatic way. I need not bore readers with further plot line developments--they are all bad and convoluted.
The gross misconception of the paralyzed father character was summed up in one line. During a heart to heart talk after his son is saved during surgery the man states that "anger is my base line". This is not a bad line--in fact it could have used to effectively show the myriad of social barriers crippled parents encounter. ER writers could have demonstrated how crippled parents competence is often questioned by strangers and medical personnel. But no, the writers of ER accepted an antiquated perception of disability and furthered the stereotype of the angry cripple. This was a missed opportunity.
Unfortunately my son missed this episode--he went to bed after the New York Ranger game--and I wonder what he would have thought. I suspect he would have pointed out he has never been asked to clean out the gutters or do any other such chore not ordinarily assigned to a kid. However, I will confess he is the man when it comes to changing light bulbs in our house.
I only watch the show once in a while and saw the latest eprisode last night--11/15/07. By the end of the hour, I was ready to throw a rock through the TV I was so angry. Last night's ER epsisode was typical soap opera fodder and I had no intention of watching the entire show until one of the episode characters turned out to be a paraplegic father. Wow, I thought, this is great. Mainstream TV will demonstrate the barriers disabled parents face when caring for their children. I could not have been more wrong for the ER writers took a step back in time--way back in time to demonstrate that crippled people are angry. Not exactly ground breaking material. Why are crippled people angry? Because they cannot walk and hate what happened to them and are tortured by their disability. When watching the show it reminded me of an old expression that was once common--"crippled disposition"--that is, crippled people are miserable because they are crippled. This is dead wrong. I get angry, as do other cripples, but it has nothing to do with my inability to walk. Crippled people get angry because they are treated poorly and their civil rights are violated on a regular basis. This was never raised.
ER writer must have missed the last twenty years of disability rights. The plot line was simple and had potential. The paraplegic character is the father of an early teenage boy who enters the ER with a serious injury. Doctors ask him how he got hurt and his reply was "cleaning out the gutters". After doctors and nurses exchange glance the boy quicly explains his father is a paraplegic and his father could get in the ambulance. What is the focus here? What the father cannot do and implies way too much responsibility is placed ont he child. When the father appears he is angry, confrontational and bitter about what happened to him when he was injured. Of course all this is revealed in a overly dramatic way. I need not bore readers with further plot line developments--they are all bad and convoluted.
The gross misconception of the paralyzed father character was summed up in one line. During a heart to heart talk after his son is saved during surgery the man states that "anger is my base line". This is not a bad line--in fact it could have used to effectively show the myriad of social barriers crippled parents encounter. ER writers could have demonstrated how crippled parents competence is often questioned by strangers and medical personnel. But no, the writers of ER accepted an antiquated perception of disability and furthered the stereotype of the angry cripple. This was a missed opportunity.
Unfortunately my son missed this episode--he went to bed after the New York Ranger game--and I wonder what he would have thought. I suspect he would have pointed out he has never been asked to clean out the gutters or do any other such chore not ordinarily assigned to a kid. However, I will confess he is the man when it comes to changing light bulbs in our house.
Tuesday, November 13, 2007
Hospital Settings and the Lack of Rights
This weekend my son added to his growing collection of stitches. On Friday afternoon I received a call from the school nurse that I needed to pick him up ASAP because he had just cut himself and would need stitches to close the laceration. I left home immediately and had no trouble finding the nurses office--I simply followed the blood trail my son left behind him. After a few minutes the nurse walked me and my son to our car and wished us well. Within 20 minutes we arrived at the local ER. This is all very ordinary--that is until we entered the hospital. The first person we met was the triage nurse who directed each and every question to my son and seemed perplexed by my presence. In a questioning tone she asked "You are his father?" Yes I answered and after she took a quick look at my son's wound we were directed to the waiting room. The next person we met looked equally perplexed and asked "Who is the patient?" This was decidedly odd given the fact my son had a fresh bandage wrapped around his hand. Then he too asked "Are you his father?" Again I answered yes and this reply really confused him. This man then asked "So, you are his parent and legal guardian?" I realized then that the question was directed to my son and a patern quickly developed. Each person we spoke to asked me if I was the father and then proceeded to ignore me.
While in the ER my son was asked questions that should have been directed to me--like "what is the name of your insurance carrier?" No child knows the answer to this question nor should they be expected to. Very quickly I realized I was perceived to be somehow less human--not sentient. My ability to parent was openly questioned as was my competence. I have no doubt most of those I met felt bad for my son--the poor kid needs stitches and needs to care for his crippled father. Not once did it dawn on those working in the ER that I could be good parent.
Over the last few days my experience has led me to wonder if other disabled parents have had similar problems--this was not the first time my ability to care for my son has been called into question by strangers. The trip to the ER also made me think about the problems disabled people encounter when they try to direct their own health care choices (see a recent post on Gimp Parade). This weekend reinforced my deep concern about what will happen to me when I get sick. Will some doctor assume my life has less value because I cannot walk? If so, am I going to receive substandard care. The sad fact is that many in the medical community preceive disabled people to be failures. This perception can affect medical care and I for one am deeply worried when I am hospitalized. I worry first about my rights as a human and secondly about the care I will receive.
While in the ER my son was asked questions that should have been directed to me--like "what is the name of your insurance carrier?" No child knows the answer to this question nor should they be expected to. Very quickly I realized I was perceived to be somehow less human--not sentient. My ability to parent was openly questioned as was my competence. I have no doubt most of those I met felt bad for my son--the poor kid needs stitches and needs to care for his crippled father. Not once did it dawn on those working in the ER that I could be good parent.
Over the last few days my experience has led me to wonder if other disabled parents have had similar problems--this was not the first time my ability to care for my son has been called into question by strangers. The trip to the ER also made me think about the problems disabled people encounter when they try to direct their own health care choices (see a recent post on Gimp Parade). This weekend reinforced my deep concern about what will happen to me when I get sick. Will some doctor assume my life has less value because I cannot walk? If so, am I going to receive substandard care. The sad fact is that many in the medical community preceive disabled people to be failures. This perception can affect medical care and I for one am deeply worried when I am hospitalized. I worry first about my rights as a human and secondly about the care I will receive.
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