I am not impressed by any candidate running for president. The Republicans are, well Republicans and will not be getting my vote. As for the Democrats, I dislike Hilary Clinton for a host of reasons. The only candidate that intrigues me is Barack Obama. He is obviously a gifted speaker and writer. As a fellow Columbia graduate, I liked his book and overall am impressed with how well he is able to articulate his views.
This morning I decided I needed to become a bit more educated about Obama and what he stands for. Readers of this blog will not be surprised to read that the first thing I wanted to know more about was his position on disability rights. I went to BarackObama.com and came away impressed and annoyed. A well reasoned position paper is available entitled "Barack Obama's Plan to Empower Americans with Disabilities". I liked the title and the four point plan that is both forward looking and reactive. There is also a short personal video statement about disability as well.
Given my positive reaction to Obama's plan to empower disabled Americans, I decided that I should try and see the candidate at an event. I also thought going to an event would be a good experience for my son who in a few years will be old enough to vote and has repeatedly told me not to vote for Hilary Clinton. The Obama website is very professional and easy navigate. I clicked on "Find Events", plugged in my zip code and multiple events popped up in less than a second. I then went to event details and this is where things broke down for me. I went to each and every event listing within 100 miles of my home and not once was any information about wheelchair access included. No information about interpreters for the blind--not a single word about accommodations for any disabled people. Obama and his staff have written a good position paper but missed the point about real inclusion. Sure Obama may support the rights of disabled people but neglecting to include information about access at each and every event is more than just a mistake. It is a slap in the face to every disabled person aware of their civil rights. I am angry and this morning I sent two firm but polite emails to the Obama campaign. My vote will now hinge on the reply I get. Is Obama a poser? Does he really support disabled people, want their vote, and support equal access? If so, someone from the campaign will reply to my email and the gross oversight on the website will be corrected. If Obama is a fake and simply seeking to garner votes via position papers I will get no reply. I will keep you posted. And if you want to be part of this experiment in the democratic process send the Obama campaign an email too. Let's see if he is for real--a man of words and actions.
Tuesday, February 12, 2008
Wednesday, January 30, 2008
Why the ADA is Needed
I will readily admit that I am not as familiar with Deaf culture as I would like. Two recent stories, one about the upcoming Super Bowl Commercial by Pepsi and the other about a deaf Mom who was refused service at a local Steak and Shake, highlighted why I must rectify my ignorance and demonstrated why the ADA us needed.
On the blog A Deaf Mom Shares Her World a woman details her experience at a drive through Steak and Shake in Illinois. Here is the link to the story:
http://putzworld.blogspot.com/2008/01/steak-and-shake-denies-service.html
I was deeply touched by this story because it reminded me of the many unnecessary social obstacles I have had and still encounter raising my son. This story also reinforced why such seemingly small incidents have such a profound cumulative impact. It is too easy for those who are not disabled to remark that seemingly unimportant incidents should be quickly forgotten. The problem is that these so called small incidents are not isolated experiences. The social affronts may not appear particularly offensive but when they take place day after day they reinforce that the lives and inclusion of people with disabilities are not valued. Thus when I encounter needless obstacles like the deaf Mom that was refused service I get agitated quickly. I am also quick to point out when my civil rights are being violated. This opinion is rarely if ever appreciated and far too many people think I and other disabled people who assert our rights have a "chip on their shoulder". This convenient rationalization ignores the fact the problem disabled people encounter has nothing to do with a particular physical deficit but rather with societal prejudice.
On the blog A Deaf Mom Shares Her World a woman details her experience at a drive through Steak and Shake in Illinois. Here is the link to the story:
http://putzworld.blogspot.com/2008/01/steak-and-shake-denies-service.html
I was deeply touched by this story because it reminded me of the many unnecessary social obstacles I have had and still encounter raising my son. This story also reinforced why such seemingly small incidents have such a profound cumulative impact. It is too easy for those who are not disabled to remark that seemingly unimportant incidents should be quickly forgotten. The problem is that these so called small incidents are not isolated experiences. The social affronts may not appear particularly offensive but when they take place day after day they reinforce that the lives and inclusion of people with disabilities are not valued. Thus when I encounter needless obstacles like the deaf Mom that was refused service I get agitated quickly. I am also quick to point out when my civil rights are being violated. This opinion is rarely if ever appreciated and far too many people think I and other disabled people who assert our rights have a "chip on their shoulder". This convenient rationalization ignores the fact the problem disabled people encounter has nothing to do with a particular physical deficit but rather with societal prejudice.
Wednesday, January 23, 2008
Rolling: Film and Disability
The vast majority of films produced to date portray disabled people in a way that reinforces negative stereotypes. Disabled people are often depicted as angry, sad, or bitter individuals who are unable or unwilling to overcome their physical deficit. The "problem" always rests with the individual and their flawed or damaged character. There are, of course, some exceptions. For example Coming Home (1978), Children of a Lesser God (1986), Born on the Fourth of July (1989), My Left Foot (1989), Water Dance (1992), and Passion Fish (1992) all have some redeeming value. At the opposite end of the spectrum there are films that openly advocate or at least tacitly approve killing disabled people (Million Dollar Baby). Regardless, the message sent to society by film makers is clear: the lives of disabled people are not valued--America has no use for such flawed people.
In the past few years, independent film makers and documentaries have begun to shed positive light on disabled people. The first such film was Murder Ball (2005), critically acclaimed but a box office bust. Murder Ball was ground breaking in that it portrayed the lives of young paralyzed men who played international Quad rugby and followed the intense competition between Para Olympic teams. The men depicted were cool, funny, and typical jocks. The year after Murder Ball was released another documentary, So Much So Fast, was released that was well received. This film was about Stephen Haywood and the impact his diagnosis of ALS had on him and his family. So Much So Fast also explored why rare conditions such ALS have not been studied by drug companies. Both Murder Ball and So Much So Fast are excellent films and in different ways try to explore what life is like for disabled people. To a certain extent they succeed but the gritty reality of every day life for disabled people is not the focus.
The real world experiences of disabled people are the subject of Gretchen Berland's superb documentary Rolling that will be airing this month on Public Television. More than any other film I have ever seen, Rolling provides the viewer with a real life understanding of what life is like when one uses a wheelchair. The film is based on 212 hour of tape taken over a period of two years (2001 to 2003). The vast majority of the film footage was recorded by three people (Galen Buckwalter, Vicki Elman, and Ernie Wallengren) from Los Angeles who had video cameras mounted on their wheelchairs. For those unfamiliar with disability, the film is not easy to watch yet gripping at the same time. It took less than thirty seconds for me to be hooked and realize Rolling was going where no other film about disability has ever gone. The opening observation made by Buckwalter was: "Because most people can walk and run and climb, and since I can't, I'm defined as disabled. Not only defined as disabled, I'm expected to act and feel disabled. For many years I did the same, but what they don't see now is that I'm a survivor". What Buckwalter is able to survive is not the injury that rendered him paralyzed but the stigma, prejudice, and social isolation that results from using a wheelchair. This is exactly where Rolling excels--it graphically reveals the gross social inequities that exist for people who use a wheelchair.
Several themes are evident throughout Rolling and Berland is obviously a first rate story teller. Among the themes that struck me as particularly important are independence versus dependence, the utter failure of the health care system to provide basic services to disabled people, the lack of wheelchair access and the resulting social isolation as well as the lack of common respect awarded to people that use a wheelchair. To me, this is old story but never have I seen a film get to the nitty gritty of what it is like to be disabled. This is not a sexy or cool film--it is a remorseless indictment of American society that reveals the overwhelming social and practical obstacles disabled people routinely encounter. For those unfamiliar with disability, some scenes are bound to be shocking. For example, when Vicki Elman's wheelchair breaks her doctor wonders aloud "what are we going to do with you? Do you want to go to a nursing home or get a baby sitter at home?" During filming of Rolling Elman was forced to enter a nursing home and where an aide tells her to urinate in a bed pan or in diaper she states "the degradation begins".
The greatest strength of Rolling is that by the end of the film Buckwalter, Elman, and Wallengren are humans who even the most resistant person to inclusion will acknowledge are treated poorly by their bipedal peers. Once the social stigma associated with using a wheelchair is removed the viewer simply sees three ordinary people who have learned how to adapt. Using a wheelchair is a means of empowerment and enables people to lead a rich and full life. This is what makes Rolling such an important contribution for illustrating this is a major accomplishment on the part of Berland. I hope Rolling and the website created by Thirteen.org for the film will be widely utilized by colleges and groups interested in disability rights, health care reform, and disability awareness advocates. Berland and all those associated with Rolling are to be commended for making a major contribution one that I hope will enlighten those willing to think about their preconceived notions about the meaning of disability.
In the past few years, independent film makers and documentaries have begun to shed positive light on disabled people. The first such film was Murder Ball (2005), critically acclaimed but a box office bust. Murder Ball was ground breaking in that it portrayed the lives of young paralyzed men who played international Quad rugby and followed the intense competition between Para Olympic teams. The men depicted were cool, funny, and typical jocks. The year after Murder Ball was released another documentary, So Much So Fast, was released that was well received. This film was about Stephen Haywood and the impact his diagnosis of ALS had on him and his family. So Much So Fast also explored why rare conditions such ALS have not been studied by drug companies. Both Murder Ball and So Much So Fast are excellent films and in different ways try to explore what life is like for disabled people. To a certain extent they succeed but the gritty reality of every day life for disabled people is not the focus.
The real world experiences of disabled people are the subject of Gretchen Berland's superb documentary Rolling that will be airing this month on Public Television. More than any other film I have ever seen, Rolling provides the viewer with a real life understanding of what life is like when one uses a wheelchair. The film is based on 212 hour of tape taken over a period of two years (2001 to 2003). The vast majority of the film footage was recorded by three people (Galen Buckwalter, Vicki Elman, and Ernie Wallengren) from Los Angeles who had video cameras mounted on their wheelchairs. For those unfamiliar with disability, the film is not easy to watch yet gripping at the same time. It took less than thirty seconds for me to be hooked and realize Rolling was going where no other film about disability has ever gone. The opening observation made by Buckwalter was: "Because most people can walk and run and climb, and since I can't, I'm defined as disabled. Not only defined as disabled, I'm expected to act and feel disabled. For many years I did the same, but what they don't see now is that I'm a survivor". What Buckwalter is able to survive is not the injury that rendered him paralyzed but the stigma, prejudice, and social isolation that results from using a wheelchair. This is exactly where Rolling excels--it graphically reveals the gross social inequities that exist for people who use a wheelchair.
Several themes are evident throughout Rolling and Berland is obviously a first rate story teller. Among the themes that struck me as particularly important are independence versus dependence, the utter failure of the health care system to provide basic services to disabled people, the lack of wheelchair access and the resulting social isolation as well as the lack of common respect awarded to people that use a wheelchair. To me, this is old story but never have I seen a film get to the nitty gritty of what it is like to be disabled. This is not a sexy or cool film--it is a remorseless indictment of American society that reveals the overwhelming social and practical obstacles disabled people routinely encounter. For those unfamiliar with disability, some scenes are bound to be shocking. For example, when Vicki Elman's wheelchair breaks her doctor wonders aloud "what are we going to do with you? Do you want to go to a nursing home or get a baby sitter at home?" During filming of Rolling Elman was forced to enter a nursing home and where an aide tells her to urinate in a bed pan or in diaper she states "the degradation begins".
The greatest strength of Rolling is that by the end of the film Buckwalter, Elman, and Wallengren are humans who even the most resistant person to inclusion will acknowledge are treated poorly by their bipedal peers. Once the social stigma associated with using a wheelchair is removed the viewer simply sees three ordinary people who have learned how to adapt. Using a wheelchair is a means of empowerment and enables people to lead a rich and full life. This is what makes Rolling such an important contribution for illustrating this is a major accomplishment on the part of Berland. I hope Rolling and the website created by Thirteen.org for the film will be widely utilized by colleges and groups interested in disability rights, health care reform, and disability awareness advocates. Berland and all those associated with Rolling are to be commended for making a major contribution one that I hope will enlighten those willing to think about their preconceived notions about the meaning of disability.
Friday, January 18, 2008
Katie Thorpe: No Hysterectomy and Disability Rights Attacked
The press in the UK is reporting that Katie Thorpe will not have a hysterectomy. Readers of this blog will recall the Thorpe case is similar to the Ashley Treatment that sparked wide spread controversy in 2007. A spokeswoman for the Mid Essex Hospital NHS Trust refused to comment on the Thorpe case due to patient confidentiality. Two disability rights groups, Scope and the Disabled People's Council were pleased with the decision.
I am relieved that Ms. Thorpe's will not be subjected to surgery. I wish others, including Katie Thorpe's mother, felt this way but based on comments in newspapers such as the Telegraph and Daily Mail, this is not the case. Indeed, the venom spewed toward disability rights is nothing short of stunning. Ms. Thorpe's mother claims she had "overwhelming support" and that the NHS was scared by a tiny minority--disability rights groups such as Scope. Thorpe's mother cited "political correctness" as being a factor in the refusal to remove her daughter's womb and stated in the Daily Mail that "the Trust has bowed down to what they perceived to be public opinion". Apparently Thorpe was told that the surgery would not be performed because it was not clinically necessary.
Two of the aforementioned disability rights groups, Scope and the Disabled People's Council, were singled out by Thorpe for sharp criticism. Thorpe's comments were echoed by the vast majority of comments published in newspapers. The comments I read were all supportive of Thorpe and graphically illustrate the cultural divide between those with and without a disability remains immense. Here is a small sampling of what some had to say:
"Katie's mum know what's best for her in this case" and the "buffoons should back down"
"People who know nothing about the family's day-to-day situation are just full of what's right and wrong"
"Nature, for whatever reason, has essentially taken away this girls normal life"
"Disabled groups are delighted, shame on you"
"Its all about the well being and quality of life of a person, why is this even an issue?"
"This is ludicrous! Common sense needs to be brought in occasionally"
The Ashley Treatment and Thorpe case are disturbing at multiple levels and are not yet resolved. In the United States Douglas Diekema who was the medical ethicist involved in the Ashley Treatment is on the lecture circuit speaking about the so called "Pillow Angel". Katie Thorpe's mother vows to keep fighting and hopes her daughter will eventually be permitted to have a hysterectomy. These developments are troubling and demonstrate that equality for disabled people is illusive and an up hill battle.
I am relieved that Ms. Thorpe's will not be subjected to surgery. I wish others, including Katie Thorpe's mother, felt this way but based on comments in newspapers such as the Telegraph and Daily Mail, this is not the case. Indeed, the venom spewed toward disability rights is nothing short of stunning. Ms. Thorpe's mother claims she had "overwhelming support" and that the NHS was scared by a tiny minority--disability rights groups such as Scope. Thorpe's mother cited "political correctness" as being a factor in the refusal to remove her daughter's womb and stated in the Daily Mail that "the Trust has bowed down to what they perceived to be public opinion". Apparently Thorpe was told that the surgery would not be performed because it was not clinically necessary.
Two of the aforementioned disability rights groups, Scope and the Disabled People's Council, were singled out by Thorpe for sharp criticism. Thorpe's comments were echoed by the vast majority of comments published in newspapers. The comments I read were all supportive of Thorpe and graphically illustrate the cultural divide between those with and without a disability remains immense. Here is a small sampling of what some had to say:
"Katie's mum know what's best for her in this case" and the "buffoons should back down"
"People who know nothing about the family's day-to-day situation are just full of what's right and wrong"
"Nature, for whatever reason, has essentially taken away this girls normal life"
"Disabled groups are delighted, shame on you"
"Its all about the well being and quality of life of a person, why is this even an issue?"
"This is ludicrous! Common sense needs to be brought in occasionally"
The Ashley Treatment and Thorpe case are disturbing at multiple levels and are not yet resolved. In the United States Douglas Diekema who was the medical ethicist involved in the Ashley Treatment is on the lecture circuit speaking about the so called "Pillow Angel". Katie Thorpe's mother vows to keep fighting and hopes her daughter will eventually be permitted to have a hysterectomy. These developments are troubling and demonstrate that equality for disabled people is illusive and an up hill battle.
Wednesday, January 16, 2008
Rolling Documentary
Most films about disability are terrible. The emotions that film makers want to illicit are consistently negative--fear, pity, and awe. This is the subject of Martin F. Norden's The Cinema of Isolation that discusses the way disabled people have been portrayed in films. In recent years terrible films remain the norm. In fact I would argue a new genre has been created that I characterize as being disability snuff films. Million Dollar Baby is a perfect example and received critical acclaim. I cannot help but note here when I saw the film the audience cheered when the main character was killed--a shocking reaction to me.
In sharp contrast to bad films, at least one documentary, Murder Ball, stands out in that it sends out a very different and positive thought provoking message. I hope another documentary that is currently being aired on PBS, Rolling, can be as successful as Murder Ball. Rolling was created by Gretchen Berland a physician and film maker at Yale University. While I have not seen the film I have heard Dr. Berland interviewed on NPR's Talk of the Nation (http://www.npr.org/templates/story/story.php?storyId=17993638) and saw three short clips from the documentary. Berland, I suspect, is unlike many of her peers in that she appears to be socially skilled and particularly empathetic. The film has an interesting and novel approach. For two years three people who live in Los Angeles that use a wheelchair mounted a camera on their wheelchair and filmed their daily lives. The results seem impressive and I look forward to seeing the film in its entirety.
Rolling will be aired on PBS in the New York Metropolitan area on January 31 at 10PM. Thirteen.org will have the complete listings. In the meantime I encourage people to listen to the NPR show linked above. I would also love to hear from those who may have seen the film.
In sharp contrast to bad films, at least one documentary, Murder Ball, stands out in that it sends out a very different and positive thought provoking message. I hope another documentary that is currently being aired on PBS, Rolling, can be as successful as Murder Ball. Rolling was created by Gretchen Berland a physician and film maker at Yale University. While I have not seen the film I have heard Dr. Berland interviewed on NPR's Talk of the Nation (http://www.npr.org/templates/story/story.php?storyId=17993638) and saw three short clips from the documentary. Berland, I suspect, is unlike many of her peers in that she appears to be socially skilled and particularly empathetic. The film has an interesting and novel approach. For two years three people who live in Los Angeles that use a wheelchair mounted a camera on their wheelchair and filmed their daily lives. The results seem impressive and I look forward to seeing the film in its entirety.
Rolling will be aired on PBS in the New York Metropolitan area on January 31 at 10PM. Thirteen.org will have the complete listings. In the meantime I encourage people to listen to the NPR show linked above. I would also love to hear from those who may have seen the film.
Tuesday, January 15, 2008
Reaction to the Pistorius Ban
The reaction to the ban of Oscar Pistorius competing in the Olympics has been as swift as it is negative. AP reports declare that Pistorius' prostheses known as Cheetahs give him a "clear edge over able-bodied runners". This has been stated so many times that it is not even subject of discussion much less dispute. Yet the man who supposedly reached this conclusion, Peter Brueggemann a professor at the German Sport University, did not explicitly state this--the IAAF that banned Pistorius did. Brueggemann studied the protheses used by Pistorius for just two days and specifically concluded that Pistorius was able to expend "25% less energy" and that "the mechanical advantage of the blade in relation to the healthy ankle joint of an able-bodied athlete is higher than 30%". Does this mean Pistorius has a "clear edge over able-bodied runners"? Brueggemann himself does not necessarily think this translates into an advantage. I am by no means an expert on human physiology and sport science but it seems to me more evidence is needed to reach a conclusive decision to ban Pistorius. It also seems to me that the debate about Pistorius has less to do with the limits of technology than it does with one person's inate ability to run very fast via unconventional means.
The implications of banning Pistorius could be profound. Will all other disabled people be banned from competing in the Olympics? Where does the IAAF draw the line on what is socially acceptable technology? Sneakers are fine as is lasik surgery but not prosthetic devices? I have tried to remain objective about Pistorius--a level playing field is the goal for all who compete in the Olympics and governing bodies such as the IAAF are needed. Yet after reading the reaction and comments about the ban of Pistorius I cannot help but conclude a lot more is going on than a discussion about the orthodoxy of running. This in turn has led me to wonder if there are other reasons, far more prejudicial ones, that are preventing Pistorius from racing against other bipedal men. Pistorius is not the stereotypical image of an Olympian--his body is profoundly different than the idealized Olympian athlete. Thus I cannot help but conclude that it is Pistorius' mere presence that is so objectionable to many. This thought came to me after reading the comments appended to an AP report and a particularly thoughtless article by Michael Rosenberg (I feel bad but Pistorius shouldn't be an Olympian, Fox Sports 1/14/08). The tone of Rosenberg's article was snide and demeaning--he portrayed himself as a horrible man for supporting the ban of Pistorius because he "couldn't get past the idea that you run with your legs, and that the best runners in the world, by definition, need to run with their legs". I refuse to repeat the comments left by readers that are nothing short of shockingly prejudicial and bigoted.
If I used Rosenberg's logic I along with every other paralyzed person in the country would be unable to leave our homes and the Para Olympic games would not exist. The only form of normal locomotion is a bipedal gate and based on the comments I read about Pistorius we crippled people had better shut up. Such venom is and remains a shock to me. It makes me realize that we only pay lip service to the rights of disabled people in this country--for if one scratches below the surface the image that emerges is one of out right bigotry. Disabled people are not wanted and their expectations of being treated equally is deeply resented by the majority of people who are bipedal.
The implications of banning Pistorius could be profound. Will all other disabled people be banned from competing in the Olympics? Where does the IAAF draw the line on what is socially acceptable technology? Sneakers are fine as is lasik surgery but not prosthetic devices? I have tried to remain objective about Pistorius--a level playing field is the goal for all who compete in the Olympics and governing bodies such as the IAAF are needed. Yet after reading the reaction and comments about the ban of Pistorius I cannot help but conclude a lot more is going on than a discussion about the orthodoxy of running. This in turn has led me to wonder if there are other reasons, far more prejudicial ones, that are preventing Pistorius from racing against other bipedal men. Pistorius is not the stereotypical image of an Olympian--his body is profoundly different than the idealized Olympian athlete. Thus I cannot help but conclude that it is Pistorius' mere presence that is so objectionable to many. This thought came to me after reading the comments appended to an AP report and a particularly thoughtless article by Michael Rosenberg (I feel bad but Pistorius shouldn't be an Olympian, Fox Sports 1/14/08). The tone of Rosenberg's article was snide and demeaning--he portrayed himself as a horrible man for supporting the ban of Pistorius because he "couldn't get past the idea that you run with your legs, and that the best runners in the world, by definition, need to run with their legs". I refuse to repeat the comments left by readers that are nothing short of shockingly prejudicial and bigoted.
If I used Rosenberg's logic I along with every other paralyzed person in the country would be unable to leave our homes and the Para Olympic games would not exist. The only form of normal locomotion is a bipedal gate and based on the comments I read about Pistorius we crippled people had better shut up. Such venom is and remains a shock to me. It makes me realize that we only pay lip service to the rights of disabled people in this country--for if one scratches below the surface the image that emerges is one of out right bigotry. Disabled people are not wanted and their expectations of being treated equally is deeply resented by the majority of people who are bipedal.
Friday, January 11, 2008
Oscar Pistorius Fights for his Rights
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.
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.
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