Sam Sullivan, Mayor

Few Americans know who same Sam Sullivan is. Perhaps those with a keen interest in the Olympics will recall the closing moments of the 2006 Winter games in Turin, Italy. As tradition dictates, Sullivan, the Mayor of Vancouver, was selected to hold the Olympic flag. While this ceremony is well worn, the fact Sullivan was a quadriplegic was outside the norm. There simply are not many quadriplegic Mayors in Canada, Europe, or the United States. Holding the Olympic flag is a powerful symbol and for a brief moment Sullivan was the most famous mayor in the world.

Fast forward to 2008. Sullivan has fallen out of grace with the citizens of Vancouver and his political party. He just lost the nomination vote within his own party, the Non-Partisan Association. What makes Sullivan so interesting is that he was the first disabled mayor of a major Canadian city. He is also one of the first politicians to not win a nomination without a some sort of lurid scandal leading to his downfall. I am not well versed in Vancouver politics and my knowledge of Sullivan is limited to the You Tube documentary and a few articles I have read since he was elected. Like most politicians, Sullivan is skilled at providing sound bites--my favorite is contained on the Your Tube clip-"I like the fact people under estimate me, they pat me on the head and then I rip their throats out".

What I have found particularly interesting in the last few days is the news accounts of Sullivan's rapid political rise and fall. Reports can be found in most Canadian news outlets such as the Globe & Mail, Star, Vancouver Sun, and Canada.com. Far too many accounts refer to Sullivan as "wheelchair bound" while others refer to him as the "accidental mayor", a moniker he does not dispute. What did Sullivan do so wrong? Here are some reasons that have been mentioned:

He was not cut out for the job in the first place.
He had trouble figuring out what to do.
He does not inspire.
He made everything out to be about his disability.
He was too self absorbed and worried about his image.

The nastiest comments have largely been left unsaid. There is no doubt in my mind that Sullivan's disability figures prominently in his down fall. According to one of his advisors who was quoted in the Globe & Mail: "the hatred for Sam is amazing. I've talked to lots of people about why and no one can put a finger on it. It's not his handling of a specific issue or issues, it's more ephemeral than that. They just don't like him--period".

Why do people dislike Sullivan? According to Gary Mason of the Globe & Mail, Sullivan had many detractors, none of whom could articulate their intense dislike for the man. This leads Mason to write that Sullivan was elected principally because his personal story was so inspiring, that it was a narrative that the world could not resist. This so called "narrative" is all too familiar to disabled people--the Horatio Alger formula of rags to riches in literature or the super cripple image of a person "overcoming" their disability. The only person willing to voice their opinion on this matter is Bob Rennie, an important real estate figure in Vancouver. Rennie, an outspoken critic of Sullivan, has sated that he "thinks his wheelchair got him there [the mayor's office] But it wasn't enough to keep him there". I detest this comment but respect that he had the nerve to voice what others likely think. This highlights a big problem: no one considers Rennie's comment to be bigoted. Thus I suggest readers substitute the word wheelchair with the word black. What would the reaction of the media have been? Outrage for sure. Sadly, this indicates to me it is still socially acceptable to be prejudiced against disabled people. People do not state this explicitly nor do they wake up in the morning and think they are bigots. But just because it is not thought about or uttered does not mean bigotry does not exist. I assure bigotry is alive and well. I experience it on a daily basis at work and in public. The bigotry I encounter is both voiced and unvoiced. It also hurts and leads me to ceaselessly wonder why people without disabilities are so quick to judge others with a disability. This has always infuriated and puzzled me. I have and will continue to rail against being judged as a human based upon the fact I use a wheelchair. To me, my wheelchair is simply a means of locomotion, one that is both more and less efficient than walking. Yet society seems utterly incapable of seeing past my wheelchair. Instead most people conjure up grossly out dated and worn out stereotypes about disabled people. I hope these stereotypes will be shattered and stories such as the one's I read about Sullivan become a thing of the past. Sadly, I think this is in the very distant future.

Harriet McBryde Johnson Dies

Most people with any familiarity with disability rights or law will have heard the sad news that Johnson unexpectedly died this week. Many disability related blogs have posted moving and detailed tributes to Johnson. I only know Johnson through her published work. She was a gifted writer and a skilled story teller in the Southern American tradition. I was captivated by her style, blunt to a fault and opinionated. This is not a critique but high praise. Her class and dignity surfaced for all when she clashed with Princeton University's Peter Singer in a cover story in the New York Times Magazine section. Her ability to politely skewer Singer and get across a disability rights agenda was nothing short of brilliant. The subsequent book, Too Late to Die Young, built on the New York Times essay and exceeded my sky high expectations.

Johnson's death will leave a huge void in the disability community, one I cannot imagine will ever be replaced. As sad as I am for the passing of such a great mind, I mourn for her father David D. Johnson. A parent should never be forced to bury their child. To him, I pass along my deepest and most sincere sympathy. In the weeks and months to come I know I will reread much of what Johnson wrote. The world is a better place because if her efforts and I am grateful for her contribution. This is a small condolence to her family, one I hope they appreciate when they get over the shock of her death.

Pistorius News Reports

Here is one CNN report about Pistorius from You Tube. This news report is better than most I saw in that the focus is on his ability to run fast. Other television stories about Pistorius relied on dated and worn out cliches about overcoming disability and entirely missed the point--if Pistorius "overcame" anything it was social stigma and oppression.

Pistorius Victorious

MSNBC, the New York Times, AP and other press outlets are reporting that Oscar Pistorius will be able to compete in the Olympics. Pistorius, an elite South African runner that uses two prostheses had previously been banned from competing in the Oympics earlier this year. The ban was imposed by the IAAF and based on the mistaken belief that Pistorius' prostheses gave him an unfair advantage against athletes who do not use protheses. Overturning the ban is a watershed event for elite disabled athletes world wide.

The decision that permit permits Pistorius to compete is limited but opens the door for other athletes with a disability. Future challenges are sure to come and the ruling sends an important message to elite disabled athletes: You can compete! You are equal! This is what I am choosing to focus on this morning and I have a broad grin spread across my face. If Pistorius can overcome all the time he lost fighting his ban, perhaps he can earn a sport on the South African Olympic team. This would not only be a victory for Pistorius but a symbolic moment for disabled people: equality at the highest level of competition exists. If Pistorius can do what no other amputee has done before in court and on the track than imagine what others can do with the same dedication. Oppression can indeed be surmounted and Pistorius is truly a trailblazer to be emulated.

For more on Pistorius please read a great new blog: An Impossibility in an Impossible Universe. Here is a link: http://impossibleuniverse.blogspot.com/ This blog by Sarah Heacox delves into adaptive sports and should readers have an interest it is a great site where one can access helpful information about sports such as skiing. I for one look forward to more posts on this blog.

The NY Times Gets it

Today the NY Times got a disability story right. In "For Disabled, Age 18 Brings Difficult Choices" Marc Santora wrote about the profound problems disabled people encounter when they age out of the system and become adults at 18. For 500,000 young adults with serious disabilities the options they have are limited at best. Many labeled "medically fragile" end up in nursing homes and a their life is profoundly compromised. For instance, two young disabled people featured in the story are currently living in a 700 bed institution for the elderly. The executive officer acknowledged that it was impossible to "create a milieu that is best for them".

The problems and options 18 year old disabled people have are severely limited--a fact highlighted in the article. This issue is not new to disability rights activists such as ADAPT and disability rights publications like Mouth. What is new is the number of young disabled people in this unenviable situation is growing. In spite of the actions of disability rights activists the fact is doctors, parents, and hospital administrators do not know what to do and up to 70% of young disabled adults can end up in a nursing home. The ignorance involved in deciding what to do highlights the divide between disability activists and the public at large leading the one doctor to state "It's something totally new, so part of it is just educating people about the situation". I could not agree more that further education is needed as is new legislation. Legislation and viable options beyond life in a nursing home are a must. But what sort of education and options will people be exposed to? The nursing home industry is powerful and well connected while disability rights groups despite a major commitment are virtually invisible. I wish I had a solution to the issues involved and my heart goes out to parents and disabled adults who are in an impossible situation that need not exist. What I can do is continue my support of disability rights groups like ADAPT and try to educate the public via this blog and my academic writing. This seems like a paltry contribution when I know other disabled people have a life that is compromised for truly bad reasons.

Disability and Language

Yesterday a long article appeared in the New York Times entitled "Taking a Chance on a Second Child". The article was written by Michael Winerip, a Pulitzer Prize wining writer. Mr. Winerip is a seasoned reporter, graduate of Harvard University and a gifted writer. Yet a day later I remain stunned and outraged by the language Winerip used. The article in question is about Jordana Holovach, her son Jacob who is severely disabled, and her decision to have a second "healthy" child.

The tone of Winerip's article is shocking. Each and every mention of disability is overwhelmingly negative. The language is antiquated, insulting, and devalues the life of a child and by extension all disabled children and adults. Among the snippets I found particularly appalling include the following:

In referring to Ms. Holovach's son: "And as much as she loves that boy and as hard as she's worked to make him whole...she felt snake bit"

Ms. Holovach's son is "confined to a wheelchair".

Ms. Holovach's son was responsible for her divorce: "Her first marriage ended in divorce under the strain" and "Jacob was a big reason".

Before Ms. Holovach's son was born "they were successful people" (note tense).

Ms. Holovach's second husband believes siblings of disabled people "felt burdened and cheated by having to care for a disabled sibling".

Other parents of children with a similar disability "let the child die quietly at home" or were "institutionalized".

Ms. Holovach's son represents "the curse and blessing of modern medicine".

Subtlety is absent as is any respect for the life of Ms. Holovach's son. Winerip describes the child as "not whole" and "confined to a wheelchair". He is also a "burden to his sibling" and responsible for the divorce of his parents. Until his birth, his parents "were successful people" meaning his birth was a failure and represented the "curse" modern medicine. If the parents had any sense they would send him to an institution or "let the child die quietly at home".

I am not parsing words nor am I taking quotes out context. The tortured language Winerip utilizes to describe disability is about as subtle as a burning cross erected outside the house of a black family. Disabled people are a burden at best. The lives of disabled people has no value when compared to "healthy people". In spite of these damning words Ms. Holovach has "made peace with Jacob as he is". Here is where I am stuck--why is the existence of disabled people such an affront to those who do not have a disability? What is so horrific about using a wheelchair? Why are disabled children segregated from their non disabled peers?

For readers of the New York Times and Winerip in particular let me clue you in on a few facts. My life has value as does the life of every disabled person in this country. Many of us are sentient and some people such as myself get angry when demeaned. The problem disabled people are forced to overcome has little to do with a cognitive or physical disability but rather social bigotry and ignorance. Disability is a social problem first and a logistical problem second. Logistical problems such as architectural barriers and inaccessible mass transportation systems would not exist if there was a social demand for the inclusion of disabled people. Instead, we get articles such as the one written by Winerip that perceive disability as some sort of perverse failure.

The New York Times routinely casts disability in a negative fashion (though I will acknowledge a small number of good articles are published). What I do not understand is why, that is why does the NY Times refuse to acknowledge what the vast majority of disabled people already know: disability rights are civil rights. If you do not believe me look it up--it has been the law for the last seventeen years. Yes, the Americans with Disability Act is indeed civil rights legislation in spite of the fact the Supreme Court has spent the last decade gutting into oblivion.

Placing Value on Human Life

When I enter an airplane I know that if there is a crash my chance of survival, already slim to begin with, are virtually nil because of my inability to walk. In the event of a disastrous crash I am under no illusion that any of my fellow passengers or airline personnel are going to help me get out of a plane. While I have no trouble accepting this reality, I was disturbed to read an AP report about a group of doctors who are trying to determine who should be saved in the event of a pandemic flu or other large scale disaster. In 2007 a task force was created to address this issue. Among those agencies involved were the Department of Homeland Security, the Centers for Disease Control and Prevention, and the Department of Health and Human Services.

The people involved had an unenviable job--make God like decisions about who will live and who will die. Among those selected to die include the following:

People over 85.
People with severe trauma such as victims of shootings or car accidents.
People older than 60 who are burn patients.
People with sever mental impairments such as Alzheimers.
People with sever chronic illnesses sucha s heart disease or diabetes.

My first thought when I read the AP report, "Who Should MDs let Die in a Pandemic" was singularly selfish--I was relieved to know I was not at the top of the list thereby assured that my life had value. This article led me to read the Summary of Suggestions From the Task Force for Mass Critical Care Summit held in January of 2007. Now, this summary was truly scary (http://www.chestjournal.org/cgi/content/full/133/5_suppl/1S). Part of me thinks that such a document is necessary. Afterall someone has to think about dooms day scenarios. But this thought was quickly replaced by the knowledge that disasters do indeed happen on a regular basis. As Hurricane Katrina taught us the people most likely to suffer are not necessarily the sickest members of society but rather the poor and disenfranchised. I understand that doctors are often faced with unenviable ethical dilemmas and are forced to play God. But I wonder how much attention those that attended this summit meeting gave to the poorest members of our society that are routinely denied adequate medical care. Study after study has shown that a disproportionate number of poor people suffer from chronic illnesses listed above and that disabled people often live at or below the poverty line. If a disaster occurs the poor and disabled are among the most likely to die. The reasons for this are as much social as they are medical.

The efforts made to determine who to save in the event of a disaster are a grim reminder that humans are forever vulnerable to disease and the power of nature. Yet the document produced is not a straight forward blueprint about how hospitals and institutions should react than it is a referendum about the value we place on the lives of others. To me, the recommendations are a political minefield that speaks volumes about members of our society who are either too poor or physically unable to care themselves. Surely the people in question who attended this summit meeting can do better or at least try to determine a way to save all humans--those rich and poor, disabled and not disabled.