An Example the New York Times Can Follow

Yesterday I posted an entry on my blog that was critical of the New York Times. This was not the first time I have taken an article in the New York Times to task. I do not anticipate it will be the last time I am critical of this influential national paper that seems to invariably screw up all stories about disability related topics. A friend sent me an email after reading my blog and asked if I had read any recent stories in the mainstream press that did not warrant such a stinging critique like the one I gave the New York Times. It did not take too long to come up with an affirmative response.

Although not of the same stature of the New York Times, I read an article in Diveristyinc entitled "7 Things NEVER to Say to People with Disabilities". Normally I do not like such lists but this article by Daryl Hannah was an exception. The author did her homework, talked to people at the National Organization on Disability and made a concerted effort to not only inform potential employers about possible pitfalls when interviewing a disabled person but provided U.S. Census Bureau data about the number of disabled people in the work force. More personally, I have been asked each of the seven things Ms. Hannah listed that should not be said to people with disabilities. Each and every question is rude, intrusive, and grossly inappropriate to ask any person who is or is not disabled.

It would be easy for me to quibble about some things Ms. Hannah wrote. However, the general points she made were on target, perfectly suited for a large or small company that might be seeking to hire a disabled employee. Given Ms. Hannah's probable audience, people who work in human resources that have little knowledge of disability, her article is constructive and likely to prevent a potential employer from inadvertently asking an insulting question. If Diversityinc can publish an informative article about disability surely the New York Times and other major media outlets can do so as well. Until that happens I will keep on reading the New York Times and skewering them when needed.

New York Times and Rich Cripples

The New York Times has a penchant for publishing amazingly demeaning articles about people who are disabled. A friend sent me a link to an article published last Sunday that took demeaning to an entirely new level. The article was published April 13 and should have appeared in Town and Country. In a special Sunday section, Habitats, an article by Celia Barbour appeared about Bronxville, NY. Entitled "A Place to Get Better and Thrive", the article was as thoughtless as it was vacuous--a life styles of the rich and famous about a wealthy man, Francesco Clark who has been a quadriplegic for six years.

By the second paragraph I knew the article would be dreadful. Mr. Clark is an ambassador for the Christopher Reeve foundation a sure sign that he is oblivious to the civil rights of disabled people. In the article readers are informed Mr. Clark was injured in a swimming accident six years ago and is a quadriplegic. Readers are told tidbits about Mr. Clark's life that include the fact he traveled to China for stem cell surgery, lives in an opulent home in Bronxville, and that two years ago he spent $35,000 converting the family garage into a gym. Mr. Clark is characterized as "well-to-do-enough to afford top-notch treatment" and that he learned Spanish to help him communicate with some of his caretakers. He also comes from a long line of doctors and inherited a creative outlook toward healing.

Obviously Mr. Clark is wealthy. I do not begrudge Mr. Clark his wealth but I sure do question his penchant for surrounding himself with others who share his outlook and interest in innovative treatments and clinical trials. These are the same buzz words and "interests" that Mr. Reeve used to distance himself from other disabled people who did not share the economic power these men clearly enjoy.

In sharp contrast to Mr. Clark, I am far more interested in the economic and social reality that most disabled people are forced to confront. Statistics demonstrate that the vast majority of paralyzed people in this country are unemployed, live at or below the poverty level, cannot afford substandard health care, and many quadriplegics such as Mr. Clark have no choice but to live in a nursing home. Few paralyzed people can afford to purchase state of the art exercise equipment and hire local trainers to work with them for hours on end. Mr. Clark exclaims that the result of his hard work has left "medical community dumbfounded by my progress" (similar claims were made by Mr. Reeve). Perhaps doctors would not be surprised by Mr. Clark's condition if they knew more about the grim social and economic conditions most paralyzed people deal with. I know not a single individual that can afford to live the life Mr. Clark leads.

It is obvious to me that Mr. Clark is using his wealth to insulate himself from other disabled people. In many ways I cannot blame him for who wants to deal with stigma, economic deprivation, and social isolation. Money can buy many things but it cannot purchase equality even for Mr. Clark. Ms. Barbour's article contains many unfortunate phrases such as "confined to a wheelchair" that demean not just Mr. Clark but all paralyzed people. Ms. Barbour is also blissfully unaware of the difference between a medical and social model of disability. She writes that doctors expected Mr. Clark to "accept his fate, curb his expectations, and get used to living on the margins". No such message is sent by the medical community. Based on my experiences as a paralyzed man for the last 30 years doctors are unaware of such social obstacles. The idea that disabled people have limited lives is a social norm enforced by ordinary citizens--your neighbors and mine. Disabled people are marginalized by a social system that denies them their humanity by placing needless obstacles in their way. Sure no one wakes up and thinks I am against the disabled--the social oppression is sanitized and rationalized in a myriad of ways that makes it palatable. Thus people are not bigots but rather fiscally responsible when they refuse to include expenses that provide equal transportation for disabled students in a given school system.

What I hope to see in the New York Times someday is an article about the social and economic variables that prevent equality for all that have some sort of physical deficit. I want to read an article about average people that do not live in Bronxville but rather in a nursing home because they cannot afford a personal attendant at home to assist them with routine aspects of daily life. This is a gripping story and a human rights violation that the New York Times chooses to overlook and conspicuously ignores. I guess fluff pieces like the one penned by Ms. Barbour sell papers.

Obama and Clinton

I just finished reading two interesting articles about Obama and Clinton. The first article was by Nat Hentoff in the Sacramento Bee entitled "Barack Obama vs. Terry Schiavo" and the second by Stephen Drake at Not Dead Yet entitled "Hilary Clinton says Assisted Suicide is Appropriate Right to Have". Each article raises serious concerns with regard to the depth of knowledge Obama and Clinton have on disability rights. My expectations for Obama and Clinton are minimal at best--disability rights are not a priority for either candidate and there has not been one substantive discussion in the mainstream media about disability rights during the election campaign. I do not expect this to change any time soon. I am also aware it is simply too late in the tight campaign race to alienate voters hence I doubt Obama or Clinton will take a firm stand on any issue. But this has not stopped Obama or Clinton from annoying me to no end.

In the February 26 debate Obama and Clinton were asked if they would take back any of their votes made as public servants. Obama replied that he regretted congress interjected itself in the Schiavo case. Obama stated he thought this was a mistake, that the American people knew it was a mistake, and that as a professor of constitutional law he knew it was a mistake. The Shiavo case was handled miserably by the mainstream press. Aside from sensational headlines, few will recall that the real issue was not a right to die case as Nat Hentoff put it but a "right to continue living". Shiavo's parents and her ex husband did not help clarify the issues--indeed I for one thought they behaved quite poorly. What was never mentioned or discussed was the implications of letting the courts decide if Shiavo would live or die. A quick internet search reveals that every major disability rights group in the country was opposed to removing Shiavo's feeing tube thereby killing her. Disabled people are all too well aware that society devalues their lives and the Schivo case served as a reminder of this unacknowledged social fact. Obama should stand behind his original vote in the senate and think long and hard before he changes his mind.

As for Clinton, she sure lost my vote (not that she had it to begin with) when she stated that assisted suicide was an appropriate right to have. Of course, this statement contained multiple contradictions and refers to Oregon's assisted suicide law. Just like Obama failed, Clinton needed to conduct a quick search of assisted suicide and the handiwork of the notorious convicted Jack Kevorkian. Had she done so such a search would have revealed that those who commit suicide are not the terminally ill but often disabled people with a physical or cognitive deficit. The Oregon law has "safeguards" built into the law but somehow I do not trust the state to make an effort to help me when my life as a disabled person already has less value than bipedal citizens. Here I cannot help but note that Oregon's abutting state of Washington failed to protect Ashley X who was sterilized, an action that broke the law.

The two articles about Obama and Clinton underscore the degree to which they are both ignorant about disability rights. Another possibility is that they are stating what the mainstream press and American population wants to hear. What is very clear is that they are not pandering to disabled voters--indeed, they have no interest in them at all. As I have pointed out previously Obama and Clinton do not even bother to post information about disabled access at campaign events--and in this failure they have lots of company as not one candidate posts this information. To me, this is infuriating. While I do not like Clinton, I have no doubt she is a smart charismatic woman who has surrounded herself with a professional campaign staff. Obama too is very smart, a gifted speaker and has a professional campaign staff. Why then are Obama and Clinton unaware of disability rights? The skeptic in me thinks it is because number crunchers have told them that disabled people are among the poorest and most disenfranchised minority groups in the country. Not a single influential, rich, Hollywood figure exists among the disabled. Perhaps Obama and Clinton simply do not care. If this is the case they are typical Americans for few care about the rights of disabled people. This fact is thrust upon me every day when I leave my home and encounter needles social and architectural obstacles that were supposed to be made illegal by the ADA--a law the Supreme Court has done its level best to gut. Ugh, today is a frustrating day one in which I am not enamored with my fellow citizens or elected officials.

David Paterson: Governor of NY

This blog post heading omitted one fact that is not relevant. As all New Yorkers must know David Paterson is not just a democrat, black, and the new governor of the state. Drum roll please... yes he is blind. Oh my, the headlines have been oh so cute and comments oh so stupid. My favorite stupid comment was made by a radio commentator who I refuse to name that wondered "how can a blind man lead the state when he cannot even see where he is walking". This was not a joke and I cringe when I pick up a newspaper these days. The catchy headlines and bad puns about blindness do not bother me. The New York Times, Washington Post, CNN, tabloids like the NY Daily News and NY Post have all been guilty of being too cute for my taste. But hey, the headlines sure do sell papers.

What angers me about the news reports are that David Paterson is always identified as blind. At first I thought this was great and hoped disability matters might be discussed with a level of seriousness. Wrong and I have quickly grown weary and depressed. The mainstream media thinks David Paterson is amazing. Wow, a blind man is the governor! Wow, the blind governor made a great speech! The blind governor got a standing ovation! The blind man who is governor ran in a marathon! The blind governor is a lawyer! The blind governor is married! The blind governor had an affair! Oops, maybe I should have left out the affair the blind governor had or the prostitutes his predecessor Customer #9 visited.

My overwhelming sarcasm above has served as a reminder for two facts: first, that mainstream media outlets always cater to the lowest common denominator. Second, society always sees a disability first and the human being with a disability second. This conveniently lets society off the hook for placing needless obstacles in the way of people who are blind or have another type of disability. Does anyone with vision (pun intended) care to understand why 70% of blind people are unemployed? Do bipedal citizens care that 66% of all people with a disability are unemployed in our country? These are grim facts that are quickly and silently swept under the carpet. Thinking about the astronomical unemployment rates and rampant poverty experienced by disabled people makes others uncomfortable. So, instead the media and average citizen laud over disabled people who overcome their disability. I can assure you I for one never think this way because if I have overcome anything it is bigotry and ignorance of my peers. I have not overcome my disability because there is nothing to overcome in this regard. What I have overcome is the assumption that I cannot do anything with my life--that the ordinary, marriage, family, a career are not possible for people like me or David Paterson. Why do people think this way? I wish I knew because I have spent most of my adult life trying to figure this out.

I do not want to be paralyzed and I assume David Paterson does not want to be blind. But who is ever really completely happy with their body and position in life. I wish my teeth were straighter; I wish my son got better grades in school; I wish I could afford to do many things that are beyond my economic reach. What is not on this wish list is the desire to walk. What I wish for is something I have been working toward my entire life: to be treated equally and not be defined by my wheelchair. I suspect David Paterson feels the same about being blind and is just as annoyed with the media as I am. He has, afterall, stated that his blindness created more problems for him than did the color of his skin. Now this is an astute observation that no one has thought worth following up on.

Disability in Advertising and Adaptive Sports

Regular readers of this blog will know I am enamored with adaptive sports--specifically skiing and kayaking. The reason I became interested in adaptive sports was basic: after thirty years of of pushing a wheelchair my shoulders began to hurt on a regular basis. A trip to the medical library to browse rehabilitation journals revealed what I already knew: the vast majority of people who are paralyzed for decades experience chronic shoulder pain. Based on my reading, I conclude the only known way to relieve chronic pain was to strengthen the entire shoulder or stop pushing a wheelchair. This knowledge combined with my niece who is a program director at Vermont Adaptive led me to learn how to kayak and ski. I love both activities. Since I began kayaking and skiing I have not experienced any pain in my shoulders because my overall strength has improved. I have also met some wonderful people, specifically the volunteers at Vermont Adaptive and many kayakers who paddle the Hudson River.

My skiing and kayaking have made me pay careful attention to the social ramifications of adaptive sports. I am extremely wary of being stereotyped--that is being perceived as possessing super human traits such as intense fortitude and perseverance often associated with athletically active disabled people. I assure you I do not possess any such traits. I am your average and boring middle aged man--a fact my teenage son often reminds me of. This concern was recently echoed by Simi Linton in her blog Disability Culture Watch. Linton is a New York City based disability rights activist, gifted scholar, and one of my favorite authors (her recent memoir, My Body Politic, is a wonderful book). In a recent blog entry Linton noted that advertisers have begun to use disabled athletes to sell products. She specifically refers to Sara Reinersten, a disabled triathlete and the star of Murderball, Mark Zupan who are used to sell a variety of products.

Advertisers are doing exactly what they are paid to do: using anything and anyone they can to influence people to buy a product. I know this all too well as this is exactly what my father did his entire business career. I have no problem with this. But Linton makes an astute observation, do the images used by advertisers "set up a false divide between those deemed robust and those the general public has been schooled to read as un-robust disabled people. The images buy into notions of fitness that privilege certain bodies. I think the advertisers think they are doing something progressive and liberal, but, instead, may be reiterating stereotypes of physical prowess, albeit with a slightly wider pool of acceptability".

Linton's words are sobering to me. Does society think less of non athletic or physically inactive disabled people? I do not think society has such a nuanced understanding of disability. Based on using a wheelchair for the last thirty years, it is my belief that society, that is the average able bodied person, thinks of one thing when they see a disabled person: limits. What a person cannot do rather than what can be done. Adaptive sports turns this thinking upside down. How do I know this? This point was made by son. He is perplexed and annoyed that his friends think I am cool. I told him this was based on my appearance being so different--I have a tattoo and long hair tied into a pony tail. When I told him this he shook his head in a way that only a teenager can do that signals how amazingly stupid his father is. He replied: "Dad, everyone assumes disabled people can't do anything. It has nothing to do with the way you look because the only thing people see is a wheelchair".

My son's observation made me realize Linton was onto something but not the dichotomy she identified between active and inactive disabled people. Society not only associates inability with a wheelchair but thinks the person "in a wheelchair" never gets out of a wheelchair. I have often been asked "were you born in a chair?" or "how long have you been in a chair?". The focus here is squarely on the chair and the assumption that there are millions of things that cannot be done. These assumptions are not made when a person who uses a wheelchair is in a sit ski or kayak. When one is not "in a chair" people think of what one can do rather than what cannot be done. Getting out of a wheelchair and into a sit ski is a radical social transformation--one that is normalizing. I simply become another skier. Few ask me about the sit ski though I will acknowledge some may perceive me as cool. But the majority people I have met skiing think I am just another person on the slopes. I know this because we talk about ordinary things--the weather, the view when we get off the chair lift, the conditions of the terrain etc. Rarely, if ever, do people ask me anything related to my disability when I am in a sit ski. At issue is one thing: skiing. But when I return to the ski lodge and my wheelchair the social perception changes--I return to my socially inferior status, the man "in a wheelchair". Getting out of my wheelchair then is the key to social equality. This is odd to me, a thought that would not have come to me without my son because I perceive my wheelchair as a liberating tool.

Ashley Treatment: First Year Anniversary

Not much has changed in the last year. CNN.com has a follow up story by Amy Burkholder about the Ashley Treatment. The comments posted to the story and appended interview with the "Pillow Angel" parents are overwhelmingly supportive of the so called Ashley Treatment. Those opposed to the parents decision are characterized as radicals and the parents refuse to reveal their identity because they want to protect themselves and their children from the media frenzy.

After reading the CNN story and the interview with Ashley X parents I am truly depressed. Disability rights is simply not making any progress. Sadly I think the social acceptance of the civil rights of disabled people has regressed substantially in the last year. The Ashley Treatment is an extreme but one that highlights the divide between those with and those without a disability has widened. The mainstream media repeats and accepts as fact what Ashley X parents write. Millions of people, if Ashley X parents are to be believed, have visited their website and all except for a tiny minority of disability rights activists support them.

I find the position of the parents self serving. They bemoan the media frenzy that surrounds them yet keep their blog active and grant interviews to CNN. They chastise disability rights activists and scholars for their extreme views yet maintain parents seeking the Ashley Treatment must be diligent and tenacious. The parents estimate under 1 % of children with a disability are like Ashley X. No foundation in fact exists for such a figure.

Those that oppose their decision are characterized as a "loud minority", infuriated that their decision does not conform to a disability rights ideology. This is pure bull shit. I am sorry to use such vulgar words but I am perplexed how the parents can dismiss the entire disability community. I find comments such as the following misleading at best: "We are in the unfortunate situation today where activists with political power and motivated by their ideology have successfully taken a potentially helpful option away from families whose pillow angels might benefit". If disability rights activists had such power it is news to me. In fact, the disability rights perspective has been totally ignored by the media and medical ethics professionals.

The parents maintain Ashley X and people with all other disabilities are vastly different--a chasm separates the two and no slippery slope exists. This may help the parents sleep at night and dismiss the views of others without thought but such a position is dead wrong. Slippery slopes exist and I for one do not consider my social condition to be any different from Ashley X. I know people often think I cannot walk and as a result cannot think. Whether I like it or not I carry the same stigma as Ashley X. My life and Ashley X life is simply not valued by mainstream society.

The future for disability rights is grim and people such as Ashley X parents are of no help. Like Christopher Reeve, they are so overwhelmed by their own interests they refuse to consider the broader implications of their views. Ashley X parents are even considering writing a book and telling their story in other ways. I shudder to think of the options available and I cannot think of one positive thing that could result. The Ashley Treatment thus remains as depressing today as it was a year ago.

A Second Case of Wheelchair Dumping

Mr. Sterner is not the only disabled person to be assaulted by the police at the Orient Road Jail. A second case has come to light. According to John Trevena, Mr. Sterner's lawyer, Benjamin Rayburn, 32, who is paralyzed and currently serving a 10 year prison sentence was also dumped out of his wheelchair (Trevena represents Rayburn). Rayburn was arrested October 3, 2006 on charges of aggravated battery with a firearm and a warrant for grand theft. According to an incident report, Rayburn was verbally abusive and threw a crack pipe at the police officers. Rayburn refused to calm down and Detention Deputy Bret Strohsack wrote he was forced to "relocate Rayburn from his wheelchair to the holding cell floor". A video clearly shows Rayburn being dumped out of his wheelchair. Unlike Sterner, Rayburn broke the law and has a long criminal history. He was arrested for good reason--he shot a man in the back with a .32 caliber handgun (the victim recovered). No one at the jail has any intention offering Rayburn an apology.

The second case must prompt the Florida attorney general's office to broaden their investigation. Regardless of what a disabled person has done wrong, dumping them out of their wheelchair is inexcusable. I would also like the attorney general's office to investigate why it is standard practice to take away a person's personal wheelchair when arrested and replace it with a jail issued wheelchair. This by itself can cause a disabled person to be injured.

Sadly, the emergence of a second so called wheelchair dumping incident is not a surprise. I expect other cases will come to light in Florida and elsewhere. I suspect when disabled people are arrested they are more likely to be abused by police and inmates. The easiest and most effective way to abuse and humiliate a person that uses a wheelchair is to dump them onto the floor. This is clearly not only a physical violation but a human rights violation as well. Guilt is or innocence is not relevant. The sooner this fact is acknowledged the better.