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.

Retard: The Meaning Behind the Word

Retard according to my dictionary is a noun. Offensive slang. Used as a disparaging term for a mentally retarded person. An organized campaign has been undertaken to purge this word our vocabulary. Major inroads have been made and any usage of the word is frowned upon. People such as Patricia Bauer has chronicled the effort to ban the use of the word retard on her website and it is well worth reading what she has written and the many links she provides. Her website is veritable wealth of information. To date, I have refrained from writing anything about how the word retard is used. Perhaps being around my son as he has grown has made me hesitant to enter the fray. I hear him and his friends use the word retard far too often. I correct them once in a while and the response is always the same--rolling of the eyes and belief I am being ever so sensitive. This bothers me but not too much. They don't understand the history and legacy of exclusion as it pertains to people with a physical or cognitive deficit. They have never been taught a thing about disability rights at school and I am certain not a single person within my son's peer group has ever heard of what took place at Willowbrook Institution 30 year ago. At an abstract level they understand people with a cognitive deficit are easy targets and my son and his friends would agree teasing or picking on such people would be wrong. But in their minds the word retard has nothing to do with people who have a cognitive deficit. When I make the connection they respond with silence--they do not see any link. And here is the important question: why do they not see the link? The answer is not complicated: people with a cognitive deficit are the most stigmatized and isolated population in this country. They are segregated in "special schools" and group homes. The bigotry they face is overwhelming and makes everything I have experienced as a paralyzed man pale in comparison.

The latest controversy regarding the use of the word retard is tied to White House Chief of Staff Rahm Emanuel. Before that President Obama got in trouble for his derogatory remark about the Special Olympics on the Tonight Show. All this has become political theatre. Sarah Palin, perceived to be an expert on disability issues because she gave birth to a child with Down Syndrome, called for Emanuel to resign and then turned around to defend Rush Limbaugh for his repeated use of the word retard on his radio program. Sadly, this is what national politics has deteriorated to. Lost among the furor and screaming is the social and economic plight of people with a cognitive deficit. Funds for "special education", adult education, job training for adults, and support for group homes are being slashed nationwide. Waiting list for essential services are the norm and no one cares. Out of sight and out of mind; the most vulnerable among us are suffering. In place of a real debate about why such services are being cut we get political pundits discussing Palin's silly Facebook demand for Emanuel to resign. Gosh, it is embarrassing to be an American sometimes.

Progress can be made for those that want inclusion. I see such inclusion when I ski. At adaptive programs I have been exposed to a range of people with cognitive issues I did not know existed. At first, I was ill at ease. I had never been around people with such conditions before. What I have learned is that such people are just like me. They have strengths and weaknesses. They have likes and dislikes. They have good days and bad. They are not the problem. We are the problem. We meaning our society that needlessly discriminates and isolates people with cognitive deficits. Language may be malleable but one thing has not changed: the broader problem is a legacy of exclusion that remains firmly entrenched. Thus I fully support the campaign to end the use of the "r" word. But it is not just the word that I want to ban. I want real social change to take place. I want to see children and adults with cognitive deficits embraced by society as valuable members. Not so long ago people with physical disabilities faced the same challenge. This battle has not been won in spite of 40 years of legislation that has sought to empower people such as myself. Laws are one thing and the social demand for equality something else entirely. People have been taught inclusion for people with a physical disability is the right thing to do. Attitudinally people may accept me provided my inclusion is not too expensive. But when it comes to inclusion for people with a cognitive deficit there is no such effort or even pretense of inclusion. I realized this a few years ago at a minor league hockey game. My son and observed a group of people with cognitive disabilities show up to a game. I pointed this out and told him what a great idea it was. Anyone I told my son can enjoy a hockey game. However, within 30 minute I saw a this group of people surrounded by a sea of empty seats. It was painfully obvious the other fans had all moved in mass away from them. This deeply disturbed me and brought back many painful memories when it was socially acceptable to complain about the presence of people with a physical disability. That night I recalled the times when I was refused service in restaurants, was prevented from boarding an airplane because I was deemed a flight risk, or barred from entering a multitude of buildings because there was no need to build a ramp. Progress has been made for me and millions of others with a physical disability but I lament the utter lack of progress made for those with a cognitive deficit. This is a human rights violation worthy of discussion.

The I Word Infects the X Games and Mono Skiing

The Winter X Games were held last weekend. As always, my primary interest was to the mono ski competition. Since 2005 the best mono skiers have competed at the X Games. Since its inception, the mono ski race is known to be an exciting, featuring spectacular crashes, huge table top jumps, and speeds that approach 80 MPH. Last year I was amazed that ESPN used the mono ski race as a teaser to keep viewers interested. This was a sure sign that the mono ski race had become a primary feature of the X Games. In the words of my son, the mono skiers are bad asses, a compliment and recognition of the skill and nerve necessary to compete at the highest level. This cool factor amazes me as does the fact the mono skiers race on the same course as Boardercross and Skier X races.

On Sunday I watched great mono ski races marred by the I word--the announcers repeatedly stated the mere fact the mono skiers were able to get to the mountain was "inspiring". Ugh! If there is one word I hate when used to describe a person with a disability it is inspiring. What is inspiring is the race and intense competition. There is nothing inspiring about getting to the mountain to compete, any suggestion to this affect diminishes the ability and world class skill of the athletes involved. If the executives at ESPN really want to grow this event into a premier part of the X Games they need to be fare more careful about the way the announcers describe the race. The mono ski race is incredibly popular and gets more exposure than the Paralympics. This is gratifying to the racers such as Tyler Walker who won his second straight Gold Medal. He stated that "This event is really big for adaptive skiing because it gets a huge amount of exposure. People really seem to enjoy watching the event. It gives us a lot of recognition. It's pretty cool". Cool, indeed! What is fascinating to me is how inclusive the mono ski event is. This is in direct contrast to the Paralympics that exist in a vacuum, at least within the mainstream media. Paralympians have been slow to gain parity with non disabled athletes and coverage is often broadcast weeks later as a special 90 minute broadcast on a slow Sunday afternoon.

What I find gratifying is the X Games have changed the way adaptive sports in the form of the mono ski race are covered. Thanks to ESPN, not its announcers, viewers are exposed to the best mono skiers in the world. The coverage of the event is no different. The winners are interviewed after the race and brief biography is provided. If the word inspiring is to be applied here there is only one way it can be constructive. So instead of getting angry at the use of the word inspiring I thought the race could be inspiring but not for the reason implied by the announcers. Who could be inspired? My first thought was a child who is a novice adaptive skier. Imagine a young boy or girl with a disability that is seeking a role model, a figure to inspire them to be the best. A person like Tyler Walker, a gifted mono skier that appears on television. Mr. Walker is not on a special program but rather included in the X Games with other athletes those with and without a disability. I can readily imagine a young person with a disability being tremendously impressed. I know if I were young I would have been in awe. I had no crippled role models when I was young so maybe I am too critical of the I word. Thus I hope there is some kid in New Hampshire where Walker lives or any other state for that matter who has been inspired. At worst they along with millions of others viewers got to see a few great mono ski races. I just wish my skill level approached those that competed.

Playing God and the Ashley Treatment

In Diekema and Fost article, "Ashley Revisited: A Response to Critics", the authors seek to address 25 distinct and substantive ethical arguments that contend the Ashley Treatment is unethical. I was one of the critics supposedly engaged and summarily dismissed. This bothers me but not because I strenuously object to what was done to Ashley. I cannot get this article out my head because there is no effort on the part of Diekema and Fost to really engage their critics. This is frustrating in the extreme. The entire tone of their article is dismissive and to date I have refrained from objecting to how they framed what I wrote in my 2007 article, "Protest from a Bad Cripple", published by Counter Punch. I recently came across a quote from Diekema that has inspired me to directly address what they refer to as "Objection 12 You are playing God".

I did indeed write that Diekema and his deceased colleague, D. Gunther, were caught "playing God". In reply Diekema and Fost argue there are several problems with this argument. First, "if playing God refers to intervening with nature's or God's plan than all of medicine involves playing God". Second, "if we play God in offering certain interventions we also play God when we decide not to intervene". Third, "if God is responsible for Ashley's condition then he is also responsible for creating those with the ability to alter her condition".

Frankly, the reference to "playing God" was a throw away line meant to emphasize a point. And what was the point I was trying to get across? I will quote my next sentence, one that appeared in the second paragraph where I suspect Diekema and Fost stopped reading: "The Ashley Treatment affects not just one girl in Seattle but all people—those with and without a disability. Doctors have established a precedent with Ashley—it is ethically and socially acceptable to mutilate the bodies of disabled people. What Ashley and her doctors have failed to grasp is that all disabled people share a common bond."

In retrospect I could have used a word other than "mutilate" but at the time I wrote the article I was furious. Then, as now, I considered the Ashley Treatment to be ethically questionable at best. My views have not changed appreciably. But to suggest that in some way I object to the Ashley Treatment due to the presence or absence of God is grossly misleading. Even if Diekema and Fost object to what I wrote they could at least direct their comments to substantive issues I raised. For instance, here is paragraph worth delving into:

"In choosing this course of action I consider the parents to be modern day Frankensteins or a perverse Modern Prometheus as Shelley’s 1818 classic novel was subtitled. In coining the term the Ashley Treatment and Pillow Angel doctors have not only over reached the bounds of ethics in medicine but sent a shot across the bow of every disabled person in American society. The message is very clear: disabled people are not human—they are profoundly flawed and extreme measures will be taken to transform their bodies. Consent is not necessary as the mere presence of disabled people, particularly those like Ashley with a profound mental disability, is inherently unacceptable. Modern science however has come to the rescue and doctors have the technology and know how to prevent her from becoming Frankenstein--a developmentally disabled adult."

To their credit Diekema and Fost may have understood my point as they wrote "this argument is trying to convey the sense that decisions of this kind are arrogant". Yes, arrogant is a word that I think nicely fits Diekema and in particular Fost. They are arrogant in a way that gives doctors a bad reputation. Apparently decisions that led to the Ashley Treatment can "easily be made in humility". They suggest a "theological lens through which to view decisions like those made on behalf of Ashley is the notion of stewardship". Humility is about the last word I would associate Diekema and Fost with. But the notion of "stewardship" is likely closer to the truth. It is possible Diekema and Fost consider themselves stewards--stewards of the less fortunate. People like Ashley that don't talk back. How convenient for them. What they apparently don't like is when those they theoretically "steward", people like me, talk back. Let me be clear: they are the experts when it comes to caring for the human body. In contrast, my expertise lies in the cultural construction of disability and it ramifications. Ashley is impacted by her disability as am I. Yes, my cognitive ability is not impaired but that does not mean the bias, stigma, and social isolation I experience is any different from what Ashley and her family encounter. There are social solutions to this that Ashley's family and her doctors do not want to consider. This thought echoes a recent comment made by N. Tan ad I. Brassington in their article "Agency, Duties, and the Ashley Treatment" published in the Journal of Medical ethics (November 2009): "In a sense the wider Ashley Treatment-taking into account that it also involved a hysterectomy, appendectomy and breast bud removal to protect against problems of as yet unknown severity that might not appear anyway—might represent less of an attempt to meet the challenges of Ashley’s condition than an attempt not to have to meet them. At the very least, it is not obvious that the Ashley treatment was the only or even the best response to the challenge of caring for her. Again, it is not clear that it would be acceptable to deal with most patients in this way: so, again, we might want to know whether and what different rules apply here".

What indeed are the rules that apply here? If the Ashley Treatment would not be considered for a so called normal child why are they socially and medically acceptable for Ashley? This is a discussion worth entering into, one Diekema and Fost have avoided via quotes taken out of context. But I suspect as Ashley's humble "stewards" they need not discuss such matters with a pesky crippled scholar such as myself. This is unfortunate as we people with a disability have much to say and share a lot in common with Ashley. She may lack the agency to understand such a debate but it does affect her life as well as mine. I wish Diekema and Fost were willing to listen an engage in this debate.

Ashley Treatment and the Parental Update

Ashley X parents have updated their blog. I know this because I have read the reactions at two sites: Mysteries and Questions Surrounding the Ashley Case (also posted at What Sorts of People) and Life with a Severely Disabled Child. I urge people to read these two reactions to the parental update. I am not surprised by what Ashley's parents have written. However, I am distressed by their continued salesmanship for such an ethically questionable "treatment". There is not doubt the parents think they have the answer for not only their daughter but all other so called "pillow angels". This term remains creepy years later and does nothing but divert attention from the meaty issues involved in the Ashley Treatment or what doctors involved now call growth attenuation.

I remain adamantly opposed to the Ashley Treatment. I would like to believe I am open minded on the subject. I keep reading, and hoping the major players involved, Douglas Diekema and Norman Fost among others will actually engage in a productive dialogue with those critical of the Ashley Treatment. To date, this has not happened in large part because, like Ashley's parents, they know they have the one and only answer to treating children with profound physical and cognitive disabilities. Critical views are read and dismissed. There is no real effort to engage in a nuanced debate and disability rights activists such as myself are quoted out of context or characterized as being driven by a political agenda. Ashley's parents views are even more strident. While I may disagree with people such as Diekema and Fost nor are my concerns regarding the ethics involved allayed by their work at least they make the pretense of engaging with others. Ashley's parents in contrast are not content with attenuating the growth of their child. They are now akin to the used car salesmen of growth attenuation. I have tried to be restrained in my criticism of Ashley's parents but the latest update to their blog, January 13 third anniversary, was disheartening and biased in the extreme. Ashley's parents raise six bulleted points:

1. Ashley has a significant scoliosis, a curve of 56 degrees that has been stable for the last 14 months. If her scoliosis gets worse, to 75 degrees, surgery to straighten her spine and protect her organs will be required. The lack of progression of her scoliosis has lead her parents to wonder if growth attenuation has slowed its development. This is pure speculation. Scoliosis treatment has changed radically in the last four decades. As one who spent years in braces and eventually had scoliosis surgery I am well aware much of what was done to me decades ago could be considered experimental. Science has advanced as has the treatment of scoliosis but there is by no means a definitive course of treatment. To suggest growth attenuation slows the progression of scoliosis is misleading if not irresponsible.

2. Ashley's parents report that a dozen parents from all over the world have contacted them and reported their children (boys and girls) have had the Ashley Treatment. No country or countries of origin is identified. The parents also maintain that some hospitals have provided treatment while others have not. They refer to a case where the hospital ethics committee approved the treatment but hospital officials declined citing public relations concerns. These statement are dubious. For instance, they make a point to mention that both boys and girls have received the Ashley Treatment. To the best of my knowledge, no doctor, including Diekema, has suggested growth attenuation was a viable option for males. As for for hospital administrators declining to perform the Ashley Treatment because of adverse public relations seems misleading. I suspect the truth is that it is legally difficult to sterilize a minor. The laws in this regard are quite strict (not that they helped Ashley). Moreover, if the Ashley Case was looked at as setting a precedent lawyers would surely be aware of the added safeguards agreed to by the hospital and WPAS.

3. The parents refer to a 2008 panel on growth attenuation at a pediatric conference held in Hawaii. For more on this see the Mysteries Surrounding the Ashley Case website. The parents state most people attending this conference and panel in particular were in favor of growth attenuation. This may or may not be true. The parents were not present nor was I. They seem to rely on the private email from an unnamed physician present. It is worth pointing out here that the panelists included David B Allen, Douglas Diekema, Norman Fost, and Michal Kappy. All four have written and are outspoken proponents of the Ashley Treatment. These men can hardly be considered an unbiased source.

4. According to the parents, at the 2009 Treuman Katz Center for Pediatric Bioethics Diekema stated that the ethics committee at two major children hospitals have investigated growth attenuation and concluded there was no ethical reasons why the treatment could not be performed. If this is true, why did Diekema not identify the hospitals by name? This could only lend more credence to his position. Is it possible he exaggerated to make a point? Is this claim true?

5. The parents refer to an article in Pediatrics entitled "Growth Attenuation Therapy" noting that two pediatric endocrinologists and two bioethicists are in favor of the Ashley Treatment. This is correct and misleading at the same time. The people they are referring to are none other than Allen, Diekema, Fost and Kappy. The same men who were in Hawaii to present their findings.

6. The parents refer to an article in the American Journal of Bioethics, "Ashley Revisted", by Diekema and Fost that I have already critiqued on my blog. This paper is dreadful and utterly failed to do what it set out to do--engage critics of the Ashley Treatment. What the parents do not mention is the devastating rejoinders that accompanied the AJOB article. As is the custom for AJOB, critics had a chance to reply to the target article. Of the nine people that replied, I would consider eight sharply critical. The authors of these critiques are a diverse group and their comments worth serious consideration.

I did not expect Ashley's parents to suddenly be balanced when they updated their blog. But their rigorous and unrelenting sales job for growth attenuation is hard to understand. They had their proverbial fifteen minutes of fame and were on Larry King. What more do they want? Such updates come across badly, as though they are slapping themselves on the back for a job well done. What the parents have done is make some inroads among four men--Allen, Diekema, Fost and Kappy. All their references in medical journals refer to these men alone. No mention is made of a single critic. Hundreds of "supportive" and private emails are referred to on their blog yet not a single critic is identified or worthy of passing reference. One possible explanation for this is the fact the parents accept without question a medical model of disability. That is their daughter's problem is a physical and cognitive deficit. This is of course correct but the solution to the issues need not be met with a radical surgical solution. Doctors under a medical model of disability are the "experts" and this is true provided this expertise is limited to the human body. When it comes to the social ramifications of disability I have a far greater understanding than most people, including Ashley's doctors. I have spent much of my adult life thinking about disability and its meaning inside and outside of a hospital. I do not mean to dismiss the profound consequences of Ashley's disabilities but rather know that many of the issues she and her parents will encounter have well established solutions. They appear to me to not like these solutions and have instead distanced themselves from the very people who could provide answers to the dilemmas they will encounter. In short, Ashley's parents and their most recent update reveals they are hopelessly misguided. This is sad, a social failure if you will, and one I hope will not delude other parents into making a comparable mistake.

Errors in Fact: Baby Isaiah Updated

If one thing characterizes this blog I hope it is my passion. I passionately believe in disability rights. There is no doubt in my mind that disability rights and civil rights are one in the same. This passion is great but has a down side--sometimes I let my passion get ahead of me. I did this in my last post and as a result made some errors in fact. Two people were kind enough to point this out--Sam Sansalone and Barbara Farlow. Barbara Farlow left a long comment on my last post I urge everyone to read. She has also been kind enough to communicate with me via email. So what errors did I make?

I implied Barbara Farlow's daughter Annie died in the United States. This is wrong. Farlow has written about her experiences in Canadian and medical ethics journals. I read an interview with Farlow and articles she wrote, one that was published in the Hastings Center Report. I incorrectly assumed she was an American. Farlow has much to say, all of which is critically important, about her experiences with the medical establishment, human rights, and the legal system. Farlow is seeking to bring public awareness to a problem that is incredibly complex. But I would argue that complexity is a red herring. The fact is children, even those with what are deemed "lethal anomalies" deserve medical care, care that is in their best interests. This is what Farlow sought for her daughter and what every parent expects when dealing with a sick child. Based on what I have read Farlow's daughter needlessly suffered and as she wrote in her comment to my post " this reality must set off major alarm bells". I hear those bells loud and clear and can only hope through her efforts the medical establishment will as well.

I referred to Sam Sansalone and his daughter Katya who had Trisomy 13 like Farlow's daughter. I quoted Sansalone and those quotes came from Life Site News. While the quotes are correct I did not mean to imply Sansalone was speaking on behalf of the Family to Family Connections at Alberta Children's Hospital. Sansalone was speaking personally as the father of Katya. Sansalone is Co-Chair of the Advisory Committee to Family to Family Connections but he was not in any way representing the views of this group. I apologize for this error. I also need to point out that Sansalone did not claim that a child with or without Trisomy 13 is denied medical treatment or access to health care in the United States. The suggestion that what Sansalone and Farlow respective daughter's experienced takes place in other countries is my opinion. An opinion, that I will seek to support in future entries. But this contention is mine not Sansalone.

I spent a great deal of time this weekend thinking about Farlow and Sansalone. I remain as impassioned and troubled as I was last week. Here we have educated, dedicated, and caring parents that wanted what was best for their respective children. The medical system failed them and in my opinion did so in spectacular fashion. Both have become fierce advocates as a result in the hope no other children will experience a similar fate. I wish them well and hope to remain in contact with them as they have much to say. Frankly, I think the entire system inside and outside of the medical establishment must be changed. We need to embrace what children, all children, have to offer the world. We do not get to pick and choose who we decide treat. If a child, a so called normal child, receives routine medical care than what does it say about us as when we withhold the exact same treatment from child with profound disabilities. Judgments are being made and I would contend they are based less on science than an inherent bias against the most vulnerable and dare I say costly humans. The problem is not a matter of semantics but rather life and death--and I am not being melodramatic--just ask Sansalone and Farlow.

Two thoughts have looped through my mind the last few days. First, I wish an organization like Family to Family Connections existed when I was a sick child. I am sure my parents, and especially myself, would not have felt as isolated and alone. I surely would not have been as scared as I was when I approached major surgeries and painful procedures. I am sure my parents would have benefited from talking with other parents that were going through a comparable experience with their child. Second, I admire the determination and courage it takes to assert one's self as Sansalone and Farlow have done. I sincerely hope they have a strong bond as I suspect they do. But what I worry about is the children that do not have outstanding parents. What happens to children that have Trisomy 13 or comparable condition whose parents are not as dedicated? What happens to children or those whose parents simply accept what their doctor suggest? Farlow wrote to me that in the 1960s, the veritable Dark Ages of neonatology, that 15% of children like her daughter lived beyond a year. Now, they quote 5% live to six months. Could it be these children are encountering a lethal form of discrimination? I cannot answer this question but it is one worth serious thought. Afterall a recent report I read in Pediatrics revealed neonatal nurses thought death was preferable to life with a profound physical and cognitive disabilities. And here is where I am not all that different from such children. I know there are people that see me and a few who tell me directly that they would prefer to be dead than use a wheelchair. This comment always leaves me speechless. What, I wonder, is the point of making such an observation? Surely asserting one's social superiority is a variable but far more is going on socially. The same can be said when it comes to the treatment of children with profound disabilities and I hope Farlow and Sansalone can make others think about this important subject.