Baby Isaiah Dies

Various news outlets are reporting that Baby Isaiah died yesterday in his parents arms. I wrote about Bay Isaiah and the larger implications of the case. Baby Isaiah death was announced by Rosanna Saccomani, lawyer for the parents who read a prepared statement. The news of Baby Isaiah death came hours before the court was expected to hear testimony from Dr. Richard Taylor, a neonatal specialist that examined the infant. Dr. Taylor told CBS News that he agreed with earlier assessments that there was no brain function. In his estimation "there have been no cases in the literature or, as far as I am aware, of a child who has had this degree of injury to the brain ever recovering to any sort of meaningful extent". I cannot dispute this nor can I speculate on what sort of life Baby Isaiah may or may not have had. What I can comment on is that the life of those with profound cognitive and physical deficits are not valued. That goes for both Canada and the United States. By extension, the lives of other people that are deemed abnormal are also somehow diminished. Those whose lives are not valued or diminished include a wide variety of people, myself included. My existence is not valued because I use a wheelchair. People remind me of this every day. Why just today I was told I was "inspiring because I shop for groceries like anyone else". Gee, thanks. Obviously the expectations for my life, the degree to which it is meaningful to use Dr. Taylor's word is severely limited. I beg to differ in spite of the fact this assessment is made by many that see me during the course of a day. Again, I have no idea if the decision made by the parents was right or wrong. I do know my heart goes out to them. However, I worry about the other babies like Isaiah that do not have parents as willing to fight for the life of their child. What happens to other children whose existence is deemed marginal, their life somehow lacking in meaning? This thought keeps me up at night for two reasons: first, selfishly I wonder if some doctor will decide I have suffered enough and allow me die thereby ending my miserable existence. Second, exactly how do we determine whose life is worth living and whose life is not. I don't think I will sleep well tonight with these thoughts rattling around my brain.

Assisted Suicide in Washington: The Death Toll 36

News outlets are writing about the Washington State Department of Health 2009 Death with Dignity Act Report that was just released. I carefully read the Executive summary and am chilled to the bone. Of one thing I am sure: I will never reside in a state where assisted suicide is legal. I am not being hysterical or alarmist. I simply value my life however crippled I may be or become. Obviously, the residents of Washington, Oregon, and Montana do not feel the same way. And frankly so do many other people that live from coast to coast. I know this because in subtle and overt ways strangers and friends alike have made it clear the life of people with a disability are not as valuable. Don't doubt me. I have read multiple emergency preparedness plans and if a disaster takes place who is going to treated at a hospital and evacuated? No person that is elderly, disabled, or anyone else who is not physically fit.

Who exactly chose to die in Washington? Medication, don't you just love the euphemism here, was dispensed to 63 individuals. Prescriptions were written by 53 different physicians. Prescriptions dispensed by 29 different pharmacists. 47 individuals have died. 36 died after ingesting medication. 7 died without having ingested medication. The 4 remaining who died status is unknown. The age range was between 48 and 95 years. 94% lived west of the Cascades. 79% had cancer. 9% had neuro-degenerative disease including ALS. 12% had respiratory illness or disease. These statistics, charts and graphs and much more can be found in the Executive Summary. Death has been processed and is clearly very efficient. But what the figures above don't indicate is why. Why are people choosing to die? Here is where we get into why assisted suicide is so dangerous. I am opposed to assisted suicide as are many others with a disability (though not all) because of the reasoning involved and justifications used to make it legal. So, why did people choose to die in Washington: from the executive report.

Table 3. End of Life Concerns reported from the After Death Reporting From. Data is available for 44 of the 47 participants in 2009 that died.

Losing autonomy, 100%
Less able to engage in activities making life enjoyable, 91%
Loss of dignity, 82%
Losing control of bodily functions, 41%
Burden on family, friends/caregivers, 23%
Inadequate pain control or concerns about it, 25%
Financial implications of treatment, 2%

I am not terminally ill but have experienced or felt every single one of the above feelings. I do not have the ability to walk and hence have lost some individual autonomy in certain circumstances. There are activities I once enjoyed that I can no longer do that made life enjoyable. I have lost a degree of dignity. I am certainly socially inferior, less dignified, to those who are bipedal. I have lost control of many bodily functions. I do worry about being a burden to my son when I am old. I do worry about the financial implications of my disability. I would be a fool if I thought otherwise considering that I am sitting on a $400 wheelchair cushion designed to last two years at most (insurance does not cover such luxuries). I have in the past experienced gut wrenching pain that made me wish I was dead. Yet here I sit at my desk and cannot help but be perplexed. Why does my crippled body command so little respect. Why is my existence so easily called into question? Well, in part few have the experience of disability. Few realize just how fleeting our autonomy is and that its loss is hardly a tragedy. Bodily functions are just that and does it really matter how or under what circumstances one urinates and defecates. Why is so hard to accept that all life is valuable? Is the ability to control the flow of our own urine really critical to our existence and humanity? If this was the case I should have been put to death 30 years ago.

All sentient beings need to think long and hard about the assisted suicide. Sure on the surface assisted suicide sounds like a reasonable idea. We should be in control of our own destiny including the way we die. Well that control can be found in hospices that have revolutionized end of life care. What we need to do is keep our attention on the real issue--who is likely to want to die and why. Who may be encouraged to die and why? The answer to these questions is simple--those who want to die believe their life has no value. Hence who is at most risk. My crippled body, the elderly, terminally ill and those born with profound physical and cognitive deficits. We may be very different humans but one thing unites us--our life is thought to lack value. We humans value our autonomy. But how do we perceive that autonomy? Do I lack autonomy? You bet your ass I do. Do I lack dignity? In the estimation of many, yes. This is inherently dangerous thinking and takes place in every day. To me the assisted suicide debate is a smoke screen that obscures our humanity. What best glimpse is their into our humanity than the way we perceive and care for the weakest and most vulnerable among us. Do we care for the elderly, value the end of their lives or put them in nursing home to rot away and die? Do we treat severely disabled children with compassion or kill them because we do consider their life worth living? These are hard questions with historical precedent and contemporary implications. Now that I am old (or at least in the eyes of my son) let me provide some historical precedent. In the olden days people with a high spinal cord injury did not survive. These people did not die of their injury, they died because doctors thought no one who was a quadriplegic could lead a rich and fill life. These people died of complications associated with their injury. This is a euphemism just as much as medication being prescribed for those in the State of Washington that fear the loss of autonomy, dignity, and the lack of control over bodily functions. We people with dysfunctional bodies have something to say about all this. We have a vested interest too. Just like all those that can walk, I too value my life. I just wish others thought the same way. This is a discussion that must be engaged by all people but especially those with a disability.

An Olympian Black Out

The Olympics have just concluded. NBC did its usual corporate type broadcasting. To me, that means there was a plethora of taped, pre-programed events in five and ten minute blocks. Media darlings were created before the games began and many of them lived up to expectations. I also saw way too many commercials as it seemed that half of every broadcast was spent selling something. Yikes, do I sound jaded or what! Perhaps I am just burned out from watching too many obscure sports such as curling. Despite my words of protest, I did enjoy aspects of the Olympics. The visual images were striking and I truly enjoyed watching skiers, the opening and closing ceremonies, and was glued to the television during the Gold Medal men's hockey game.

I believe the Olympic create what some pundits call "media saturation". NBC devoted hundreds if not thousands of broadcast hours on the games via its constellation of television stations. I have no problem with this--we are talking about big business and hundreds of millions of dollars in revenue. However, there is a down side to this sort of saturation. The Paralympic Games will be held in March, from the 12th to the 21st in Vancouver. I am intensely interested in the Paralympics and for the last few days have been searching for a way to watch the games on television. As near as I can determine, there will no live coverage on any television network in American or abroad. None. Not one hour. Not even on NBC owned Universal Sports, home of the obscure sports. According to the International Paralympic Committee (IPC) the games will go multimedia. What does this mean? An official newsletter will be distributed daily entitled "Vancouver 2010 News". The president of the IPC, Sir Philip Craven, will keep a blog during the games to inform readers about what is taking place. The IPC will also have an internet channel, ParalympicSportTV. There will also be FaceBook page and highlights can be watched on You Tube.

The IPC is obviously trying very hard to gain media attention. A multimedia approach is surely the way to go but is a far cry from prime time television, spots on the national news, and extended newspaper coverage. The net result is the Paralympics will be held in a virtual media black out. Sure a few stories will appear in newspapers and I have no doubt a "heart warming" 30 to 90 second piece will be aired on a major network but that is the end of it. This is a shame as the Paralympics differ in no tangible way from the Olympics that had media saturation. Viewers will miss out on upsets, world class competition, and compelling story lines that make the Olympics a global phenomenon. I for one hope that ParalympicSportTV works well as I will be spending my evening trying to watch the games. I will even read the IPC newsletter and blog mentioned above. I do all this with a heavy heart as I know there is much that I and the rest of the country will miss.

Rampant Ableism and Politics

Virginia State Delegate Bob Marshall, a conservative Republican, is in deep trouble for good reason. At a press conference opposing funding for Planned Parenthood he stated the following:

"The number of children who are born subsequent to a first abortion with handicaps has increased dramatically. Why? Because when you abort the first born of any, nature takes its vengeance on the subsequent children. In the Old Testament, the first born of every being, animal and man, was dedicated to the Lord. There's a special punishment Christians would suggest."

In stating the above Marshall was preaching to a friendly audience composed of conservative Christians and other religious leaders. I listened and watched Marshall's statement. His words are not being taken out of context nor were they poorly constructed. He said what he said and meant it. Children with a disability are God's "vengeance", punishment for previous abortions. This claim is not only false but offensive. Disability representing God's wrath is a belief I would like to think has past into what my son calls the "olden days". Thirty years ago when I began using a wheelchair I was occasionally accosted by religious fundamentalists. Most thought my presence was offensive. More than once I was told that I was the "anti-Christ" or that if I really wanted to walk all I needed to do was pray harder. These comments hurt and drove me from having any connection with organized religion. It also reinforced why I believe strongly in the separation of Church and State.

I am stunned that an elected official no matter how conservative would have the audacity to state what Marshall did. His thinking is so antiquated it is hard to believe people believe such nonsense. Marshall issued an apology, not a very good one, and it is clear he has utterly failed to realize just how hateful his words were. Marshall has a penchant for controversy and has been nicknamed "Sideshow Bob". But Marshall's words transcend bad taste and conservative politics. They are tied to a deeply rooted fear of disability that is pervasive in American society. Disability is inherently bad, something to be feared. Disability is a tragedy and either God or someone else must be held responsible. This line of reasoning is dehumanizing in the extreme. I wonder where the great defender of "special needs families and children", Sarah Palin, is today. I am hardly alone for Penny Richards noted the same thing yesterday. Palin has not spoken out against Marshall or uttered one word of protest. Palin appears to only objects to bigoted remarks when it suits her political ambitions, something some have called Palin's satire clause. No wonder people in the disability rights community have no respect for her or conservatives like Marshall. Our existence, after all, is God's vengeance.

Lennard Davis, Sarah Palin and Disability Rights

There are many scholars in the field of disability studies that I respect. Foremost among those scholars is Lennard Davis, Distinguished Professor at the University of Illinois at Chicago who published a wonderful diatribe against Sarah Palin, "Don't Trust Sarah Palin When She Cries Disability" in the Huffington Post (February 23). Many have weighed in on the use of the word retard, myself included, and the most recent political theatre related to an episode of the Family Guy. This prompted Davis to perceptively lament the latest "Sarah-Palin-Stands-Up-For-Disabled-People" incident. How and why Palin is perceived as a champion of disability rights is a mystery. Yes she gave birth to a son who has Down Syndrome and talks about "children with special needs". However, this hardly makes her an expert on all things disability. Indeed, scratch the surface and her record regarding advocacy for people with a disability is slim or at best mixed. I never hear her talk about the ADA, disability rights, health care reform as it relates to people with a disability, waiting lists in states for needed services that affect many adults like her son Trig. Instead, Trig and her entire family are used as props in an effort to exploit any situation to her political advantage. I suppose in America today this passes as effective politics. I just don't like it nor does Davis who noted the Family Guy controversy "isn't about Palin getting the joke: it's about her exploiting the situation to attack the left in any form". Davis concluded the "moral of this story isn't that the Family Guy is an insensitive show; it's that Palin is using Trig as hostage to shield her from the shoot-out of the last election. With Trig in tow she's not the incompetent former governor of Alaska or the incendiary anti-wonk, she is simply good Mom protecting her child and all people with disabilities."

To me, Davis' comments highlight the fact that Palin is the latest person mistakenly cast to represent the interests of people with a disability by the mainstream media. Before Palin we had Christopher Reeve and they share one thing in common. They either knew little about disability rights or simply did not care about the violation of those rights. Reeve accepted a medical model of disability without thought and focused on cure alone. While cure was a laudable goal, the way he went about raising money was offensive, demeaning and undermined decades of disability activism. Palin loves to talk about "special needs children yet she fails to acknowledge such children become adults. Those adults need resources and support services but that is not on Pailin's agenda. Shame on both Reeve and Palin for being so narrow minded.

Rather than just bemoan the lack of any nuance as it relates to disability rights let me ask the following: What can be done to advance disability rights? This brings me back to Davis and disability studies. If one goes to lennarddavis.com a wealth of information can be found. Not all of Davis work will appear to the general reader or activist in disability rights. But what really has always made me respect Davis is not just his scholarship but rather his ability to emphasize the importance of disability studies in the world we live in. Disability studies is not an abstract idea--it is a field that can make a real contribution to society and those with and without a disability. Thus he wrote:

I have come to see that disability studies is imperative. It is crucial that students in elementary and secondary school, as well as students in the university, grow up in close contact with people with all kinds of disabilities. It is crucial that disability studies be included in the curricula of schools so that when Rosa Parks and the civil rights movement are studied, when films on Stonewall are screened, Chicano authors are read — that disability history and culture be included as well from the accomplishments of Vietnam Vets and Ron Kovic to the Berkeley movement led by disability activist Ed Roberts to the Deaf President Now movement at Gallaudet University. The drafting of the ADA should be studied the way that the drafting of the Declaration of Independence is studied. Students should be able to read the work of Nancy Mairs or Andre Dubus, to know about the disabilities of artists and writers like James Joyce, Harriet Martineau, and William DeKooning, as well as the more obvious Beethoven or Ray Charles.

To date, disability studies is an after thought in education. Few secondary schools mention much less teach anything remotely related to disability rights. Institutions of higher education are even more hostile to the inclusion of disability rights. Exceptions exist but they are as common as a man or woman with a disability that is gainfully employed. Here lies the problem: decades after forced institutionalization and segregation ended a legacy of invisibility remains. We people with a disability are out of sight and out of mind. People may cluck about access but when it comes down to a vote on whether to purchase that expensive bus lift or install an elevator it gets shot down every time. Why do such expenses get shot down? Based on my experiences there is only one logical explanation: the presence of people with a disability is not wanted nor is it valued. My existence is not valued. Trig Palin, the adult he will become, will not be valued. People simply don't care about disability rights, it is not a blip on the radar of most Americans. If people did care transportation, housing, and employment would not be inherently difficult for people with a disability. But difficult is common place and barriers, social and architectural, abound nearly two decades after the ADA passed. So on this gloomy Tuesday morning I wonder when and if I will ever be equal.

Why Equality is Elusive: Part II

Skeptics may wonder if I am being unfair in my last post. Surely images of the sort I posted are unusual. Sorry, but this is simply not the case. Take the above image from a notorious notorious ad campaign in 2000 that appeared in dozens of outdoor and sporting magazines across the country. I recall seeing this ad and being shocked. I was not alone. Nike received a wave of complaints and not only pulled the ad but issued an apology. If anything is unusual about the above Nike ad it is the fact it was pulled. Imagery of this sort is sadly the norm and abounds. I see it every day on television, in newspapers, on the internet and in a plethora of magazines. Some people in disability studies call such images examples of the "defective person industry". The fact is mainstream imagery associated with disability is overwhelming bad. There is simply nothing cool whatsoever about disability. Disability in the minds of most is bad, inherently bad. The only exception I have come across in my life time is sports. Adaptive sports, especially mono skiers, have made major inroads toward being cool. I am not an elite adaptive athlete but I sure do appreciate the trickle down effect they are creating. I will surely never enter the X Games or even come close to what athletes such as Tyler Walker can accomplish on his mono ski but his accomplishments resonate within me and the general public. I know this because when I ski there is a residual cool factor I find captivating. When I ski I am not the poor bastard that uses a wheelchair and lives a limited existence. No sir. I am another guy out skiing, one who is cool in the eyes of many. This is liberating and I only wish more people with a disability could find a way to access the slopes. If I am to ever truly be equal in American society the above Nike ad will be replaced by radically different images. Those images may be starting to change with adaptive athletes and I hope will be accompanied by those that depict people with a disability active in every facet of society. When that day takes place I will enjoy real equality. I hope to live to see that day.

Why Equality is Elusive

I came across this ad campaign this morning. I am offended. I am worried too. My son is about to get his drivers license. Like most parents, I have mixed feelings about this milestone. Part of me is proud and delighted I will no longer need to taxi my son to and fro day and night. However, this thought is tempered by the knowledge an unacceptable number of teens die every year in car accidents. I am worried about his lack of experience and judgement. I am also not happy about what is going to happen to my car insurance rates that will surely sky rocket once he has his license. But what I have really been thinking about is the meaning of this ad campaign. A clear message is being sent and it extends well beyond the tag line "Don't Drive Stupid". I am not opposed to the idea that teens need to be educated about the inherent dangers of distracted driving. I am all for anything that effectively saves the lives of young people that have so much of their lives ahead of them. But I seriously question if such damaging efforts at mind control work. Sadly this is what passes for education today that is routinely directed at teens. Nuance is absent and in its place is fear mongering. Based on my experience and knowledge of my son's peer group ads such as the one above are grossly ineffective. Teens lack experience and I question their judgement but they are not stupid people. Treat them with respect and give them the facts. With regard to driving, the facts are crystal clear--teens are far more likely to get in an accident than other drivers. This is not in dispute. Even the most jaded teen will admit this. I hammer home this point every time I drive with my son and I hope the message sinks in when he is on his own.

So what is the point of the above ad and why am I offended? The point of the ad is to scare teens. And what should teens be afraid of? Why using a wheelchair of course. Lost among the text and sad sack image is the fact that "nothing kills more Utah teens than auto crashes". This statement is more than sobering enough. But the ad relies on antiquated and deeply rooted fears to scare teens noting that "every year far too many Utah teens go from cool to crippled in the blink of the eye". Great, this undermines forty years of legislative initiatives meant to empower people with a disability. Teens are being taught that a wheelchair is akin to a tragedy, a fate worse than death. Thus if you drive stupid you can "start shopping for your wheelchair now. And hey, if you think that's harsh , wait until the day you roll it into school". Note the use of the word it. This is the ultimate dehumanization. A person that uses a wheelchair is not recognized, they are an it. And that it, a wheelchair is bad, very bad. By extension anyone that uses a wheelchair is not fully human and that is indeed a harsh reality. Yet that reality, dehumanization, is a social creation. I am just as human as someone that can walk. Well, I was fully human until this ad was posted and this human is pissed off.

When I combine the dehumanizing aspect of the ad with the fundamental flaws of secondary schools it is no wonder people have a skewed view of disability and its meaning. Based on my son's experience to date, I cannot help but conclude schools do a terrible job teaching history. Sure students learn a lot of supposedly important dates and milestones (mostly in American history) but no attempt to is made to teach them the importance of the many facts they are required to parrot back on standardized exams. What they are taught quickly becomes boring if not meaningless. Worse yet is what they are not taught. Foremost on that list is a vibrant history related to disability rights. They are exposed to the Civil Rights Movement and Women's Rights as being essential moments in American history. Yet in my son's AP American History text book not a single word is devoted to the ADA or disability rights. I am sure there is not a single student or teacher in my son's school that has ever heard of Ed Roberts, the man known as the founder of the independent living center movement. This omission is glaring and has far reaching implications. In place of knowledge students are exposed to well financed and public ads that depict wheelchair use as a fate worse than death--"to go from being cool to crippled in the blink of an eye". What I want to know is what do teens in Utah think after they see this ad? Do they really change their driving habits? Maybe they do. But they have also been sent a blunt message about disability and wheelchair use. No wonder people with a disability encounter so much bigotry nationwide. I cannot possibly be cool. I am afterall the ultimate symbol of all that go wrong in the blink of an eye. Surely we can do a better job educating young people.