Disasters: Sorry But You Are Not Important

In the event of a a disaster people with a disability are screwed. This is a harsh fact of life. I think about this every time I fly on a plane. I know the odds of surviving a plane crash are remote at best. I know my odds are far longer than most people I fly with. I would need help getting off any plane that crashed and I have no doubt when faced with a life and death situation precious few people will stick around to help me. This includes the flight attendants whose job description theoretically includes helping me. I live with the knowledge that in event of a disaster no help with be forthcoming. I do not let this knowledge prevent me from getting on a plane or other means of mass transportation. What does bother me is that our government makes no pretense that is will help people with a disability in the event of a disaster. Disaster studies make for scary reading--truly troubling if you have a disability. We people with a disability are the very bottom of the priority list. We will be the last, and I mean the very last, people saved. Shoot, pets have a better chance at survival and rescue.

This week the Federal Emergency Management Agency (FEMA) acknowledged what I already know--it cannot be expected to save people with a disability in the event of a natural disaster. Why is this the case? Marcie Roth, FEMA's senior advisor on disability issues says there is a lack of funds to do so. FEMA does have a plan in place though to evacuate, shelter, and supply people with a disability in case of a natural disaster. And who is in charge of this plan and what is the budget? One person is in charge and the budget is $150,00. So FEMA has a plan in theory and no ability to implement it. I feel so much safer! Of course, FEMA is also the government organization that in 2005 during Hurricane Katrina took three days to get water to the Superdome. Hence, my expectations, low to begin with, are really non existent now. The House Committee on Home Land security suggested FEMA create a registry--FEMA rejected this idea because it would give people with a disability a false sense of security. I translate this to mean no help with ever be forthcoming. No wonder I think my life has less value than others that can walk. FEMA has acknowledged this as have most disaster planners. My point is the next time people cluck about how we Americans are equal I suggest readers with a disability bring up disasters plan. They are proof positive our own government does not value our existence and lives. This is a fact of life I live with and don't like. It is not that I worry about disasters but rather the larger meaning of such plans and how they filter down into every day life.

Home Depot: A Missed Opportunity

I hate super stores. They are truly miserable places to shop. Customer service is non existent despite what the ads on television portray. When I go to stores such as Staples, Home Depot, Target etc. I have no expectations except cheap prices. However, I pay dearly for those lower prices. For me, I pay via ignorance, stunning stupidity, and often shockingly rude comments and questions. It is not just the customers that are the problem--employees are equally unaware. Yesterday, I was in the Home Depot and had a typically negative encounter. When I shop at the Home Depot I go during the week at an odd time. More often than not the store is devoid of customers and employees. Yesterday was typical. Aisle after aisle was empty and the store looked like a ghost town. All was well with the world until I encountered an employee I could not void. As I was passing her in a loud voice she stated "Hey, no speeding in the store. The speed limit is enforced". I stared at the woman with a face of stone. No comment was necessary. Oblivious, she cackled at her own joke clearly amused at my expense. What I did next bothers me--I did nothing. I kept on going and simply let my anger stew. In retrospect I should have stopped this employee and told her exactly how rude she was. I should have gone to customer service and complained. Her "joke" was not funny or remotely appropriate. I permitted myself to be the butt of this employee's joke. I felt less than human, reduced to an inanimate object told not to speed. I was not amused and have heard this so called joke about speeding more times than I care to remember. The joke tellers think they are hysterical. They are not funny at all. They are rude and thoughtless. This is a problem. How do I explain this so called joke is not funny? How do I tell them that I am deeply insulted and angry? How do I get them to acknowledge that I a human being?

I do not have any ready answers to the questions above. I wish I did. When I let such social violations pass without comment I feel like I missed an opportunity to educate and correct. Ignorance afterall can be cured by a little education. But why I wonder is such an educational effort left to me and other people with a disability. It is not our job to educate the masses about disability. Surely disability awareness is part of the secondary school curriculum or employee training. If this true, why does ignorance abound? Frankly, I am getting too old and way too cranky to tolerate ignorant comments. I try not to be confrontational but there are times I cannot or should not let comments go. Yesterday's speeding "joke" was one of those times I needed to stop and be confrontational. Aside from the ignorance of the question, the laughter at my expense hurt. Sadly, such comments are far from unusual. I have been subjected to rude comments from strangers for the last thirty years. These comments have not abated--they are uttered with stunning regularity. I have adapted by creating some pretty sharp if not devastating replies that shut people up fast. This makes me feel better but I am not sure how helpful this is. I suspect my cutting replies are quickly dismissed; I am perceived to be the "angry" disabled person that hates his lot in life, an antiquated stereotype. My other means of adapting is less than helpful--I have learned to avoid certain social situations. I never ever go to health food stores--an offer for a cure to paralysis via herbal remedy is common. I never go to church--someone will tell me if I pray hard enough I will be able to walk again. In the end, what I resent the most is being public property, having my humanity violated on a regular basis. I just do not understand why others, all other humans, don't get this.

Adaptation and Enhancement

FIXED (Trailer) from Regan Brashear on Vimeo.

The trailer for Fixed has put my brain in over drive the last few days. I am torn about the very idea of being fixed and title of the film. I do not think my body needs to be fixed. Let me be emphatic: I am quite happy with my body the way it is. I have no interest in stem cell research or a cure for paralysis. This does not mean I like being paralyzed. But paralysis is a fact of life for me and will not change. However, I can change society and the cultural response to paralysis and disability in general--this is why I write about and study disability. I want to make a concrete contribution to the lives of those with a disability. This effort is an uphill and often thankless battle. Disability is perceived to be a problem by many people and institutions. The medical establishment in particular views disability as the ultimate symbolic failure and seeks out cures no matter how impractical. I am not opposed to pure research but rather deal with the here and now. And right now I am wondering why disability in the broadest sense of the term yields so many stupid and needless inventions. I see silly and impractical inventions hailed all the time and can only shake my head in wonder. For example, a few months back I read about an exo-skeleton that enables a paraplegic to walk. This exo-skeleton may have a cool factor but is totally impractical. A wheelchair is a far superior technological device that is not only empowering but liberating. Yet no one thinks a wheelchair is cool. A wheelchair is bad, the ultimate symbol of disability and dependence. This is why the notion of being "fixed", the title of the trailer and film is so misleading. It ties directly into negative assumptions about disability. I deeply resent the popular cultural assumptions about disability because they are misguided and wrong. I do not see anything wrong with disability. Instead I see great beauty in disability--it brings out the best in the human spirit and our ability to adapt. And if we humans have proved anything we are very good at adapting--we have been doing it for millions of years. If you doubt me I suggest you read the work of Charles Darwin.

Why do I see beauty in disability? It has nothing, and I mean nil, about "overcoming" a disability or being "inspiring" to others. Such notions are demeaning and destructive. I find the way people adapt to their disabled bodies fascinating. One must discard all you have been taught and think in a radically different way. You must do this daily. This can entail something as mundane as how to navigate a street or get from the ground back into a wheelchair. The environment we people with a disability must navigate is hostile both practically and socially. Architectural barriers remain common place and discrimination is rampant. Thus we learn to adapt. This does not mean I am opposed to pure research for cures to a host of disabling conditions. I am also not opposed to human enhancement and technology. But my idea of enhancement does not often jive with people in the field. Enhancement in my estimation is too often rooted in a medical or profit model of disability. What people fail to realize is the beauty of disability and how it enhances our life. In the words of the artist Reva Lehrer: "In order to have a good life with a disability, you have to learn to re-invent your world almost hour by hour. You discover ways to re-imagine everything, and how not to take the average answers to everyday questions. There is a great deal of creativity in disability if you decide that "reality" is just a raw material for you to mould. So many times, these re-inventions have been the keys to open new doors for everyone."

The new doors Lehrer describes can take many different forms. These forms do not include sitting around hoping, praying or supporting a cure to paralysis. These doors do not include any technology that is an impractical attempt to mitigate disability, to make others feel more comfortable with the disabled body. Don't misunderstand the point I am trying to make. I support all efforts to enhance the quality of life of people with a disability. At issue is how is that life perceived. For instance, I keep up with the latest technological gadgets and advancements in the wheelchair, bike, and ski industry. I rapidly incorporate those advances into my life. None of this involves a desire to walk, to fit in and make my disability disappear. In my case, paralysis is part of who I am as a human being--it is an integral part of my identity. I see nothing wrong with my body. This viewpoint is radically different from what people in human enhancement think. They see the body as a platform to incorporate and improve the human body. Well, this works in some case but not all. For instance, I laud the advances in prosthetic technology. Such advances improve the quality of life for amputees. But I do question where and why such advances have been made. The fact amputation is one of the "signature" wounds of the Iraq war cannot be ignored. It is undoubtedly a factor in the evolution and advancement of such technology. At the other end of the spectrum we have the Ashley Treatment and growth attenuation. I consider this ethically unacceptable. It is a medical solution to a social problem, one that could be solved if we as a society provided the appropriate support services for those with cognitive and physical disabilities. Hence I find the words of people like George Devorsky who supported the Ashley Treatment disturbing at best.

As to the film Fixed that prompted me to write, I have great hopes it will be well done. The scene with John Hockenberry and his family is wonderful. I loved his book Moving Violations and have found his subsequent comments about disability thought provoking. I am usually in agreement with what Hockenberry has to say about disability. Interestingly, he has played with the idea of how to make disability cool. He has put lights on his wheelchair, painted it different colors and listened to some smart people--his children. I too listen to kids as they have no preconceived ideas about disability. This makes me wish we could put children in charger of the durable medical goods industry that has a penchant for treating its customers like dirt, making over priced and inferior products, and stifling innovation. Why is this this attitude common? It gets back to what I have been writing about since I began this blog--valuing the life of those that live with a disability. We are afterall creative people that exemplify human adaptability.

Anger: Political and Crippled

There is a fascinating article in the Washington Post dated June 9. The article by Dana Milbank, "Nancy Pelosi, the Liberal House Speaker, is Heckled by Liberals", is a mixture of astute political observation, rhetoric and ignorance in terms of disability issues. Those that follow disability rights will know I am referring to an ADAPT protest that briefly made the news early this week. ADPAT hit the news because they loudly heckled Nancy Pelosi. The news coverage was superficial at best--filler on a slow news day. In contrast, Milbank's article struck a chord with me. In her estimation, the ADPAT protest was the culmination of 17 months of anger that has been building against Obama. Who is angry with Obama? Why liberals of course who have collectively decided to "eat their own", specifically the "celebrated San Francisco liberal" Nancy Pelosi. Who are the angriest group of liberals? Yes, we crippled people are angry, very angry. In fact we are filled with rage! That's right the ADPAT protest was not about reason or politics but rage. A "wheelchair-bound woman named Carrie James" is singled out as your archetypical angry cripple. James screamed from her table with 15 other people "Our homes, not nursing homes". The protesters all wore orange t-shirts that proclaimed the "Community Choice Act Now" and had the audacity to unfurl bed sheet banners. In response Pelosi's body guards rushed forward and formed a protective ring around her. Pelosi refused to stop her speech and for "an excruciating half-hour. The hecklers screamed themselves hoarse, dominating Pelosi's speech through her concluding lines".

According to Milbank, some political movements unravel gradually but the ADAPT protest was proof positive that "Obama's hope-and-change left has faded" while conservative political movements such as the Tea Party are gaining popularity. I have no idea if Milbank's assessment is correct. If I am any indication, she may be right. I am disillusioned with Obama penchant to compromise, compromise and compromise some more characterized by some as "split the baby politics". Regardless, what fascinated me about Milbank's article was the way the ADAPT protesters were described and the reaction to their protest. ADAPT is angry, protesters filled with rage, absent of reason. They could not be reasoned with. Some audience members tried to get ADAPT to quiet down--an effort that only "worsened the disturbance". Apparently this caused James, the "wheelchair-bound" woman to shout louder because "the stakes are a little high". James is described as "pumping her fists into the air, she chanted "Hey, hey, ho, ho nursing homes have got to go!". The conference organizer, Robert Borosage, "shaking his head and licking his lips, tried to shoo the wheelchairs away from the podium". Clearly, ADPAT was an unwanted presence.

Missing from Milbank's article, aside from any semblance of political balance, is a basic understanding of ADAPT or why they are protesting. Pelosi, like Obama (I think), supports the Community Choice Act. Readers know this act will increase access to community services for people with disabilities designed to allow them to live at home thereby ending the institutional bias toward nursing home care. The CCA is legislation that is "long-languishing". Are some members of ADAPT angry? You bet they are. And I would quickly add they have every right to be angry. Obama and Pelosi support the CCA in name only. Hell will freeze over before they forcefully push this much needed legislation forward. This bothers me but what bothers me is more is the stereotype Milbank seemed to rely on. Here I refer to the notion that all people with a disability are angry. In the olden days this was referred to as a "cripple's disposition". What is over looked is why people with a disability are mad. The popular misconception is that we crippled people are mad because we have a disability, some sort of horrible physical deficit. This could not be farther from the truth. The reality is anger, crippled anger, stems from just one thing--social injustice. Social injustice takes many forms foremost among them blatant discrimination. Ad in a dose of stigma, economic deprivation, a stunningly high unemployment rate, and barriers to education and I maintain crippled people have every right to be angry. However, this is not discussed much less acknowledged. 20 years after the passage of the ADA American society has continued to categorically refuse to negotiate or accommodate our difference. This refusal is worthy of detailed discussion. As James pointed out the stakes are high and lives are at stake. Many have already died and countless others have suffered. Am I being melodramatic? In a word, no. If you doubt me go for a drive this summer. The odds are good that at some point you will pass a shuttered institution that dots the American landscape. Once upon a time thousands of people with disabilities were ware-housed in such places, led a compromised life, barred from society. We no longer institutionalize people with a disability but that does not mean we are equal. If that were the case we would not lead civil rights legislation like the ADA. More personally if people with a disability were equal I would not feel estranged from society. In part this is why I am angry, an anger that is well placed and misunderstood.

Conjoined Twins, Disabilty and Ethics

Few books I read cause me to radically alter my preconceived ideas or thoughts. One such book that did this for me was One of Us by Alice Domurat Dreger. Dreger's book, subtitled Conjoined Twins and the Future of Normal, stunned me. Prior to reading One of Us I thought that the effort to separate conjoined twins was logical, the only viable choice parents had even if the mortality rate for such a procedure was very high. By the time I finished reading Dreger's book I learned that my preconceived ideas about conjoined twins, largely gleaned from the mass media, was wrong. Not only did I feel enlightened thanks to Dreger but I learned much about what she termed anatomical politics. Dreger's work successfully changed the archetypical story associated with conjoined twins and others with extraordinary human anatomies. She highlighted that the stories often told about people with unusual bodies involves changing that body to fit the social context. This led me to an "ah ha moment" that is all too rare in academics. The story of conjoined twins reveals a history of people who are comfortable with their own bodies. The problem is not with the unusual or disabled body but rather with society. Individuals have rights, human rights, and those rights for those who do not fit into a broad spectrum of normal are violated regularly. I know all too much about this as do others with a disability.

Dreger made me believe change is possible. For instance. she points out that progress made in treating those born with intersex conditions since the 1990s. While this is encouraging, I remain dismayed by the cultural perception of disability and how it seems impervious to significant change. Hence I thought of the Ashley Treatment--a child whose body was radically altered to fit society and its failure to accommodate people with profound cognitive and physical disabilities. I thought of the ADA and how twenty years after its passage access for all people with a disabilities remains a constant battle. I thought of ethicists in medicine who have a penchant for justifying treatments that are at best questionable or worse violate the bodily integrity of the most vulnerable among us. I thought of disability scholars who have largely failed to enhance the civil rights of people with a disability. I thought of disability activist that in spite of great effort are virtually invisible in mainstream news stories. I thought of people at risk--specifically the newborn, elderly, and those with a disability. These are hard times for such people, fearful times I would contend. In the words of Dreger: "In the United States, the values of individualism, self-improvement, free enterprise, and high-tech medicine have combined in the past few decades to create a culture in which one is able--indeed, even expected--to employ medical technologies to alter one's anatomy and make it more socially advantageous".

Dreger's words were echoing in my brain when I read about Brianna Manns. Manns gave birth to conjoined twin boys on March 31, 2010. The boys cannot be separated because they share a single heart and have complicated anatomy. At issue is how much medical intervention is appropriate. Doctors have been clear they do want to see the twin boys suffer. Their mother, Brianna Manns, wants every effort to be made to extend the life of her children. According to Helen Kusi, a neonatalogist, "we empathize with her but as health care providers, knowing what we know, we don't want to see the babies die in an agonizing way. That's where we are not on the same page with her. We haven't given up, but we have to face reality". What prompted this statement was the refusal of the mother to sign a do not resuscitate order. Here we have a collision between two opposing world views. It is my understanding that the mother is deeply religious and thinks there is a reason God made special babies such as those she gave birth to. While I do not know any more than what I read in the news and on line it appears that Manns has been at odds with doctors for sometime. Doctors discussed terminating the pregnancy but Manns refused to do so. Doctors then maintained the twins were not likely to survive birth. Survive they did and Manns and the doctors charged with the care of her children remain at odds.

The above is an extreme case, one that will likely lead to great emotional angst for the mother and health care providers. I am sure medical ethicists will weigh in on what transpires as will many others. I sincerely hope not only have those involved read Dreger's work but have called her in to lend her expertise. To me, this case is but a sign of troubled times for those that do not conform to societal and medical norms. It is my belief that as our economy continues to falter and health care dollars are watched like a hawk all those that do not fit in will be perceived as a problem--an expensive problem that we can ill afford. Hence the media reports about how expensive it is to care for the elderly as they approach the end of their life or how much it costs to keep a person alive per day that is dependent upon a respirator. At no point do we read about the contributions the elderly make to society nor a word about the person that not only survives but thrives using a respirator. What is conveniently ignored are the social barriers to education, personal relationships, and community involvement. Instead, we create institutions to house and separate the unwanted or in the case above convince ourselves we do not want babies to suffer. The fact is society simply refuses to accommodate some bodies. I know all about this as my body is lacking socially and physically--I cannot walk, that is not in question. But my inability to walk should not preclude me from being an accepted member of society. Yet, my very existence in the estimation of many is an odious burden. I have been told point blank by utter strangers that they would "rather be dead than use a wheelchair". How I wonder can one think that something as insignificant as the inability to walk makes me so inferior, not worthy of life itself. I may have a physical deficit but that does not make me inferior to others. Thus I have no interest in changing my body to conform to what others expect. I need not be saved by science or technology but rather expect, demand really, that society accept me for the man I am. Afterall, I am as human as is any person with or without a disability.

Canoe and Kayak Screw Up--Sortof

BIRTHRIGHT from Sean Mullens on Vimeo.

It is kayak season. I try and get out on the water on a weekly basis. I am not always successful but really do my best. Paddling is great for my sometime cranky shoulders that are showing wear and tear after 30 years of pushing a wheelchair. I also like to paddle because it makes me very happy. I feel free when I am on the water and at peace with the world. I enjoy gazing at aquatic life both above and below the water. I am not fast by any means but I can go a long way--miles and miles, a fact that puts a smile on my face. While I return to certain paddle spots because I like them I also return to some places because I know help is present. Getting a 14 foot kayak on and off my car is not easy. I can do it independently but it takes a long time and is very tiring. Hence I like to paddle with my son (I exploit his height, strength, and bipedal ability) or put my boat in where assistance is readily available. New places to put in however always intrigue me. Luckily I live near the Hudson River Estuary and there are many places I can easily access the water within an hour of my home. As part of my never ending search for new places to put in I subscribe to Canoe and Kayak. I read about new boats, technology, gear and exotic as well as ordinary places to paddle. It also helps that the American Canoe Association has a major commitment to adaptive paddling. They hold workshops for certified instructors every summer--and this is exactly how I got started.

Given the above I was delighted and then annoyed to read in the current issue of Canoe and Kayak "Behind the Scenes of Birthright". Look at the short five minute film for yourself embedded above. What annoyed me was the tone of the Canoe and Kayak story about the film and the sole character Michael Mitchell, 49 who has been paralyzed thirty years. In the estimation of Canoe and Kayak the film Birthright is about "one man's extraordinary struggle" and "never has a paddling film evoked such eye-watering emotion". The camera focuses on "Mitchell's excruciating effort to drag himself and his wave ski to the waters edge". The filmmaker sets up the viewer for a "rush of emotion when Mitchell finally catches a wave and accelerates down the face. For that fleeting moment he's completely free". Oh please spare me the tear jerking hyper emotional crap. Is it a struggle for a paralyzed person to get a boat in the water independently? You bet it is. So what. That so called struggle does not make me or Mitchell extraordinary. What we share to borrow the title of the film is the breathtaking feeling once we are on the water. If anything is fleeting it is the social equality our boats empower us with. Such freedom is not present on land due to social barriers and prejudice.

This is what I wish Canoe and Kayak would write about: the real struggle involved for people with disabilities to get a boat on the water. This struggle takes place well before one sees the water. Adaptive paddling clinics despite the ACA's major commitment to inclusion are few and far between. This is problematic for two reasons: there are not enough trained instructors and one might need to drive many hours to attend a clinic (I drove over four hours to Vermont to attend a two day clinic). For most paralyzed people some sort of modification must be made in order to paddle a boat. These modifications need not be complex: for me it involved removing the existing seat and making a custom seat out of dry cell foam using lots and lots of duct tape. Adaptive clinics are in my estimation are the best way to learn in large part because water safety is of paramount importance and can never ever be dismissed. If one is lucky enough to take a adaptive paddling class the next problem is simply getting to the water--the film highlights this quite well. Virtually all paddling books are worthless--access is never mentioned. Many paddling organizations and their publications are of no help as well. For instance, the Hudson River Watertrail Association has published six editions of The Hudson River Water Trail Guide. There is no mention of wheelchair access in any edition. When I contacted the organization about this omission I was informed access information was too much work to include and no one was sure exactly what the term meant. So much for help. Another major problem is finding a paddle shop. Some shops I went to when I was looking to buy a boat were point blank rude to me--paralyzed people I was told more than once were an insurance liability. When I expressed an interest in a tour one paddle shop owner told me I was welcome but would be charged double because I represented a safety risk. Finally, boat companies and those businesses affiliated with the industry do little or nothing to promote adaptive paddling. I see many boats and gear specifically designed and marketed to women. Why not do the same for adaptive paddling? For instance I use a Hull-a-Vator made by Thule. This is a great rack for the car that makes independent loading of a boat possible. Many of Thule's ads for this rack are targeted to women. I would imagine a comparable ad with a paralyzed guy would not only sell but inspire others--others meaning other paralyzed people interested in paddling.

I suppose my criticism of Canoe and Kayak is naive--they will not sell magazines nor will they promote a knee jerk emotional response. But they would empower more people with a disability to get out and onto the water. In terms of adaptive sports paddling is a bargain. A boat can be purchased for well under $1,000 and the season in New York lasts from about April to mid October. Contrast that with adaptive skiing--a new rig costs at least $2,500 and upwards. The ski season is a mere three to four months long. I enjoy both sports but do not own a ski rig--they are just too expensive and I got more bang for my buck purchasing a boat. If you really want to know why I love to paddle watch the film Birthright. Do not think of the struggle to get to the water but rather the freedom the water offers. This sensation is universal to all paddlers.

Windows of Opportunity: Scary Thoughts

I had a great Memorial Day weekend. While I Was happy without access to the news or internet my son went through what appeared to be withdrawl symptoms. On the drive home he asked me "How do people live without the internet?" A question asked with great sincerity and curiosity. After a depressing morning of catching up on disability related news stories my answer to my son's question today might be "happily". What disturbed me the most was a subject I was following up on via Thadeus Pope and his thought provoking blog Medical Futility. I disagree with much of what Pope writes but respect his scholarship and do not question the factual basis of what he writes. We may disagree but he does not mislead readers. Pope referred to current debates on "informed consent"--specifically an article by Alexander Kon (Informed Nondissent Rather than Informed Consent). Kon's article led me to read another article he had written, "The Window of Opportunity: Helping Parents Make the Most of Difficult Decision They Will Ever Face Using an Informed Non-Dissent Model" in the American Journal of Bioethics (94, #4:55-62). Kon believes we have been moving toward a shared decision making strategy between doctors and patients. He also thinks doctors can "unburden some parents" as they face an agonizing decision--deciding whether a child should live or die when they face end of life decisions. In Kon's estimation between days 2 and 5 of the event that indicates there is certainty a child will not experience meaningful neurological recovery a window of opportunity exists--when it is considered appropriate to withdraw life support. Kon argues, and read this direct quote very closely:

I advocate for an informed non-dissent approach to decision making. Under such a model, the physician, with the help of other members of the healthcare team, informs the parents of the dismal prognosis and that unless life-support is withdrawn within a short period of time, the child will regain sufficient brainstem function to maintain minimal, but inadequate, respiratory function off the ventilator. After extensive discussion, the physician can ascertain to what extent the parents wish to bear the burden of decision making. When the parent appears to agree that life in a persistent vegetative or minimally conscious state is not acceptable for their child but cannot bring themselves to verbally agree with withdrawing life-support, the physician informs the parents that he will make the decision to withdraw life-support, but that the parents have veto authority over this decision.

If Kon's "non-dissent model" comes into vogue I fear many will die--that is die needlessly and before their time. Anyone that has spent time around doctors and within a hospital setting know many physicians do not communicate well (I am being very polite here). In my experience, few physicians are socially skilled, that is people I would trust to understand what my wishes are. Add in the inherent power and knowledge imbalance and a physicians words and opinion carry great weight. Indeed, many patients and their loved ones do not question what a physician states and even fewer would question what a healthcare team believes. Given this, problems abound with the non-dissent model. Parents are not passive recipients of bad news as Kon would have the reader to believe. Parents with a critically ill child find themselves in a different world--a profoundly different cultural setting where they are unfamiliar with the rules and the environmental setting. Most parents are woefully unprepared for such an experience. Now Kon wants to step up the pressure on these people, tell them they have a window of opportunity and need to make a decision now. However, if they have second thoughts, veto authority, they can inform the physician or healthcare team. Sure, they do. If you believe this I have a pink elephant for sale too--at a great price I may add.

I do not understand the medical industrial complex. The experiences I had as a child were radically different. I am not referring to the advances in science--they are revolutionary and significant, life saving in fact. What I do not get is the lack of humanity in contemporary medicine. We have great technology that can extend and enhance life but we have a gross failure to communicate. End of life issues, and by extension disability, magnify the failure to communicate. Today quality of life, autonomy and end of life decisions all require patients, parents, children and doctors to work together. This does not happen and people are too often pressed into making decisions or conversely left on their own. Kon is pressing parents or at minimum enabling them to avoid making a decision. I for one do not trust Kon or most doctors to make anything but the most basic decisions. I surely do not trust them or anyone else for that matter to make life and death decisions. But that is exactly what Kon wants--the power to make a life and death decision. He does not want this power for himself of course but for the medical industrial complex. This is not about releasing parents from making a choice as Kon argues but the assertion of power. Power is a subject I know a good bit about. I lack power as do most people with a disability. I know this for a fact as we, that is the American government, decided inequities existed and needed a law to protect the civil rights of people with disabilities--the ADA. I believe patients and parents of children have rights too. One of those rights to make the decisions for themselves and their children. They should do so without being pressured and told about windows of opportunity.

After reading Kon's paper I thought of my parents and what they experienced with me. Luckily we had an unusual physician in charge of my care--a man that empowered me even as a child into believing I was an integral part of the decision making process. He did not making decisions for me or for my parents. We did that together. No power games were played or employed. What I wonder has taken place in the medical industrial complex that has led us to where we are today. I think of Barbara Farlow and the death of her child. I think of other children and their parents that have horrific experiences with physicians making decisions for them. I think of the elderly and their loved one pondering under what circumstances will one live and die. I think of people with life altering and disabling injuries who are reliant on the expertise of those providing care. Too may are given bad advice, rendered powerless, exploited, or flat out lied to. The irony here is that we can do so much with science but as a people we are failing socially. Thus I think I was lucky to get sick when I did in the 1970s. Modern science had not taken over the medical industrial complex as we were on the cusp of technological change. Too bad that technological change has not been matched by a similar social change.