Baby Isaiah and the Value of Human Life

Readers will recall I that wrote about Baby RB in Britain and a somewhat similar case has arisen in Alberta, Canada. Baby Isaiah James May was born last October and suffered severe oxygen deprivation. After a complicated and prolonged birth the baby was placed on a ventilator at Rocky Mountain Hospital and transferred to Alberta Health Services (AHS) Stollery Children’s Hospital. On January 13 the parents received a letter from the AHS that stated their child’s doctors thought everything had been done to help Baby Isaiah. In their estimation “the diagnosis is unchanged: your son suffered severe anoxic brain injury at birth and has irreversible brain damage. There is no hope of recovery”. The letter went on to state that “it is with sadness that we are advising you that your treatment team will discontinue mechanical ventilation support to Isaiah after 2p.m. Wednesday, January 20, 2010”.

I cannot imagine what Baby Isaiah’s parents, Isaac and Rebecka May have been through since their son was born. But even by the most cold hardened standards the letter quoted that I found on the CTV.ca website is hard to read much less accept. Like Baby RB, I have no idea what is in the best interests of Baby Isaiah. But Baby Isaiah’s parents do not want their child to be disconnected from his ventilator. The Mays and their lawyer want the hospital to delay their decision for 90 days. AHS and the Mays went to court in part because the AHS told the court they were willing to wait 30 days. Madame Justice Michelle Crighton is considering the position of the parents and AHS. She has stated that she needs time to consider the arguments presented to her. In short, the court will decide Baby Isaiah’s fate.

I find the case of Baby RB and Baby Isaiah disturbing. I cannot fathom how the parents and doctors cannot find common ground and work together and as a team decide what is in the best interests of the child. Such a divide between parents and doctors makes me wonder if I was lucky to be sick at a time when life and death decisions such as those my parents faced with me were clear cut. As medicine has advanced people are living longer as are infants born with profound physical and cognitive deficits. But what sort of life are people leading? And more to the point, how does society value those humans that have profound physical and or cognitive deficits? If I have learned one thing in my life it is that individuals with a disability life is subject to debate. That is, doctors, nurses, administrators, and people like Peter Singer feel free to openly question the quality of life for those with a physical or cognitive deficit. So called normal people, adults and children alike, are a class apart. The people with a disability that are at the greatest risk include infants born with profound physical and cognitive deficits and genetic conditions such as Trisomy 13 among others. Based on my reading, particularly the experiences of parents whose children are born with profound and complex disabilities, parents are given the illusion of choice and informed consent. The information they get from the doctors charged with caring for their children is heavily edited if not directly misleading. The underlying assumption made is their children are not fully human and as such do not have the same rights as others.

Two parental experiences in this regard have haunted me recently. First, the experience of Barbara Farlow as expressed in “Misgivings” published in the Hastings Center Report (September/October 2009) and Sam Sansalone’s story of how he fought to save the life of his daughter, Katya, who was born with Trisomy 13. For more about Sam Sansalone’s experiences see What Sorts of People and the Advisory Committee of Family to Family Connections at Alberta Children’s Hospital. Sansalones’s experiences should cause each and ever person to think long and hard about medical care, medical ethics, and what it means to be human. Sansalone’s does not mince words: He maintains that “in Canada profoundly disabled kids are routinely—and intentionally—not treated with life saving intervention”. Based on his experience, he thinks that when his daughter was born eight years ago “the clear mandate, at least at that time, was that you don’t save these disabled children’s lives. You allow them to die—even though the needed interventions are exactly the same as would routinely and unquestionably be given to quote unquote normal children” I disagree with just one aspect of Sansalone’s assessment of the situation. The exact same thing takes place in the United States. Surely Barbara Farlow’s experience with her daughter Annie is evidence of this. Farlow wrote about her experience having a child with Trisomy 13. She knew her decision to have her baby and knowing about her condition was not common. She was well aware of the fact most children born with Trisomy 13 live a very short life, just hours in some cases. But when her daughter was born she did not have the expected brain defect or cardiac condition that was anticipated. She was not blind or deaf and her major organs were structurally sound. She recalled being shocked and delighted until a medical fellow asked her “Do you really want to treat this child? She’s going to have disabilities”. Farlow’s daughter died some time later and she had a “nagging sense” that the events at the end of her life were illogical. Over the next two years what she learned was shocking—that her daughter not only needlessly suffered before she died but her death was most likely preventable. Imagine her dismay when she read the coroner’s report that declared the events of her daughter’s final admission to the hospital “do not represent appropriate forms of care”.

Focus here: “do not represent appropriate forms of care”. Are infants such as those with Trisomy 13 out of the norm? Yes, but this does not mean they are not human. It does not mean they should be allowed to die and experience a “slow code blue” as Farlow’s child did on the final day of her life. This phrase “do not represent appropriate forms of care” does not begin nor does it end with children with Trisomy 13. The lack of appropriate care starts at birth for some, at the onset of a given disability later in life for others such as myself. But what this phrase reveals is the lack of appropriate care is a social not a medical failure. I contend the experience of Sansalone and Farlow is akin to the ripple effect on a pond and they are toward the center. People like me are farther away from the center but affected nonetheless. All human life has value and I for one cherish my autonomy. Yet I am not always autonomous, fully independent, because I am paralyzed. This rarely bothers me and I have learned there is nothing wrong with asking for help from time to time. What does keep me awake at night is the knowledge that others consider my existence a tragedy or that I am living proof of the limits of medical science. What this narrative overlooks is quite simple: I remain a human being.

Making Progress Two Kids at a Time

Last weekend I went skiing with my son and seven of his friends. Yikes, eight teenagers are a handful! The boys and girls I was with reminded me of puppies--they had high highs and low lows. The highs were accompanied by loud music, lots of laughter, drinking too much soda, and eating gigantic proportions of food. The lows were hard to wake up kids in the morning and sleeping kids after skiing on the drive back to where we stayed. When skiing I did not see much of my son or his friends. They went one way and I suspect wanted to strike out on their own without adult supervision. I cannot blame them too much as this is exactly what I would have done if I were seventeen and had my girlfriend with me as my son did. We all had a great time and I particularly enjoyed the evenings as I was able to socialize with friends while my son did the same thing with his peers.

The weekend was enhanced by good weather and the snow condition when skiing was excellent. The weekend for me had two highlights.

First, we skied at Sugarbush, Mt. Ellen. I skied with Vermont Adaptive and was lucky to have two great instructors. While all the instructors at Vermont Adaptive are good I happen to have a good rapport with the two people I went skiing with. I am proud to report I continue to make progress and have gotten over much of the fear I once had. I truly trust my equipment to do what it is supposed to do and spent most of the day on intermediate terrain. The best part of the trip though was making it to the top of the mountain. The lower mountain was socked in by clouds. It was pretty foggy and we heard it was clear at the top. Relying on iffy second hand reports we took the lift to the top of the mountain and at the second to last stanchion broke through the clouds. A crystal clear blue sky and trees covered in snow and ice were a sight to behold. I was not the only person to be amazed by the beauty. A group of people stopped near the lift and were looking at the cloud covered valley below. It was truly breath taking and something that I hope to never forget. When I see a sight like that I realize what gift life is and how marvelous nature can be.

Second, at the start of one run we stopped to discuss what direction we were going to go when I noticed two small girls skiing with their father. I was obviously fascinating to them as they were flat out starring at me in wonder and burning with curiosity. I caught their eye, said hello and asked them if they had any questions. Delight spread across their faces and they wanted to know how I skied, got on and off the lift, and if it was fun to sit ski. Their father looked mortified and I hope the broad smile on my face was evidence that his kids questions were welcome. I assure these girls skiing was fun, that with a little help getting and off the lift was no problem and asked them if they would like to watch me go and ski first. This delighted them even more and now the pressure was on! I had better not fall, spend any time traversing, and show them what I could do. I am happy to report that I did well and went about half way down the mountain before stopping and was delighted to see that the two kids had followed me the entire way. When we chatted again I told them that this time I was going to follow them and wanted to see how good they were. This too delighted the girls and off they went.

My experience getting off the lift that revealed a brilliant blue ski and short exchange with the two kids emphasized why skiing is so much fun for me personally and has the potential to change the way people perceive disability. The two kids I met on the slopes thought I was cool. They did not care one iota that I used a wheelchair and could not walk. They saw a person skiing in a different way and wanted to know if it was fun. This was innocent curiosity and open mindedness at is best. I would like to think those two kids will remember my broad smile, willingness to answer questions, and assurance that sit skiing is fun. And for most people the point of skiing is to have fun. So today days after skiing and getting back to work I still have a smile on my face. I changed the world or maybe at least influenced two little kids and saw a magnificent sight that is etched in my mind. I did all this and enabled my son to have an awesome weekend as well. Life is feeling really good right now.

The Ashley Treatment in AJOB

Last October I wrote about the latest article set to be published about the Ashley Treatment by Doug Diekema and Norman Fost. Here I refer to "Ashley Revisited: A Response to Critics". Well, the paper has just been published by the American Journal of Bioethics, AJOB, in its latest issue (V. 10, #1 January 2010). This was a dreadful paper when I read it months ago and it remains dreadful today. I need not rehash my criticism I posted in October despite the fact I am tempted to do so. What is of interest is the Open Peer Commentary. Nine scholars wrote short replies to the target article by Diekema and Fost. Of these nine commentaries I would consider one supportive and the other eight critical. It will take me a few days to assimilate all the critics various viewpoints. Suffice it to say I am delighted by the sharply critical replies. Most of the commentaries are polite to a fault but one stands out for the severity and tone of its critique. Here I refer to John Lantos, "It's Not Growth Attenuation It's Sterilization!" I do not know Lantos who works at Children's Mercy Hospital nor have I ever read a word he wrote but the man can write that's for sure.

Lantos appropriately praises Diekema for his 2003 paper "Involuntary Sterilization of Persons with Mental Retardation: An Ethical Analysis" that reviewed the controversial issue with a checkered past. The fact Diekema wrote this paper is fascinating as he of all people should have been acutely aware of the legal and moral issues involved in sterilizing a child like Ashley. Lantos points out Ashley's doctors should have sought a judicial review and the fact this was not done was a "major, inexplicable, and damning transgression". Worse yet, Diekema and Fost now defend that course of action or inaction. Others have raised this point and focused on the procedural violation but Lantos has a fascinating point to add: "The case becomes an example of arrogance and secretiveness by doctors and hospitals. It reinforces, rather than challenges, the strong societal prohibitions on sterilization for children like Ashley". Lantos also argues that the title of Diekema and Gunther original paper was misleading, an effort to get people not to look too closely to what was done, especially the removal of Ashley's breast buds. Lantos suggests that the original paper, "Attenuating Growth in Children with Profound Developmental Disability: A New Approach to an Old Dilemma" should have been titled "Attenuating Growth, Involuntary Sterilization, and Prophylactic Mastectomy in Children with Profound Disability: A New Approach". Ouch, that one hurts!

After reading all the commentaries about which I will have more to say in another post I was struck by Diekema and Fost staunch defense. They clearly believe they have done nothing wrong and that there are no flaws of any sort in their line of reasoning. Critics, especially those in the disability rights field are driven by ideology rather than factual information. This is not only wrong but ironic in that many errors in fact and contradictory statements have been made by Diekema and Fost since 2007. People such as Dick Sobsey and others have pointed out such factual errors. For more information in this regard read the excellent posts on What Sorts of People. What I find amazing is that an institution like Seattle Children Hospital can admit it made mistakes, state this publicly and yet Diekema and Fost cannot admit to any error or mistakes. Perfection I suppose must be a wonderful thing. Too bad we humans are incapable of this--even Diekema and Fost.

Terri Schiavo and the Politics of Disability

Like most people, I followed the Terri Schiavo case when it was splashed across the national news. I was not impressed with anyone or any group that spoke out. I was even less impressed when legislators got involved. To me, the case was a family matter, one that should have been resolved by those that knew and loved Schiavo. If blame needed to be assessed, and we Americans love to play the blame game, it should have been pointed squarely at the family for their inability to put aside their differences. In short, I think the case never should have become a media and political circus.

I have been thinking about the Schiavo case for two reasons: first, I am struggling to get through the Montana Supreme Court decision in the Baxter case. I am not a lawyer and reading through the 68 page decision is an exercise in frustration. Second, a book has been published, The Case of Terri Schiavo: Ethics, Politics, and Death in the 21st Century edited by Kenneth W. Goodman. The book consists of ten chapters written by different scholars and includes a fascinating chapter by Schiavo's guardian ad litum and a particularly useful appendix that has a timeline of key events. The scope of the book is impressive and for those interested in first hand accounts of what took place I highly recommend the book with the proviso the entries all have a particular point to make. Politics and passion abound even after the passage of time. Of great interest to me was the Introduction by Kenneth W. Goodman and the chapter, Disability Rights and Wrongs in the Terri Schiavo Case, by Lawrence Nelson. Both Goodman and Nelson are severely critical of the disability rights activists involved in the Schiavo case, notably Not Dead Yet. Goodman decries the fact the the Schiavo case became the "cause celebre by the militant wing of the disability rights community". Goodman did not consider Schiavo to be disabled. He wrote that "to regard Schiavo disabled was a perverse disservice to the millions of people who need assistance with tasks involving moving, hearing, seeing, even thinking. With assistance, they can accomplish and experience many things". Gee thanks! I guess with assistance we crippled people can accomplish amazing things! Obviously Goodman perceives disability as being nothing more than a physical or cognitive deficit and those with a disability in need of assistance. He acknowledges and quickly dismisses the social dimensions of disability and disability based prejudice. A medical model of disability is accepted without question but what seems to annoy Goodman the most is the lack of rigor among disability activists. He considers the position of disability activists in the Schiavo case flawed on three grounds:

1. They had no coherent definition of disability.
2. Disability activists actions were politically motivated. Disability activists also made alliances with conservative groups that had expressed no prior interest in disability rights.
3. The actions of disability rights activists reduced the rights of people with a disability who wanted to refuse burdensome treatment.

Goodman is correct in maintaining that the Schiavo case created strange political alliances. These alliances, particularly between disability activists and conservative Christians, exist to this day and are highly problematic in my estimation. As I have already noted it is these alliances that prevent me from becoming more active in the movement against assisted suicide. But what bothers me is why Goodman cannot understand why the definition of disability must be precise or in his words coherent. Disability is an elastic term, its definition broad by design, and this has not changed legally in over 30 years. Like Goodman, in Nelson's chapter on disability and the Schiavo case he struggles with the idea she was disabled. He considered the position of disability rights activists inherently flawed because of this and based on ideology and their own convictions. Thus Nelson does not even begin to grasp the points made by Diane Coleman of Not Dead Yet for instance. While Nelson, like Goodman acknowledges prejudice exists against people with a disability and condemns such behavior but considers it to be apart from from individual cases like Schiavo. In his estimation it is not wrong to forego medical treatment in any individual case involving a disabled person. In a world free of bias I would agree with Nelson's position. However, we live in a world where people with a disability existence is not valued, they are likely to be poor, under or not insured, socially disadvantaged, and with far fewer options than a person without a disability. Accordingly, it is disingenuous to characterize Coleman's claim that some people want to kill the disabled behind closed doors as being "bizarre", "unsupported by evidence", and "irresponsible". The fact is people with a disability have often been subject to questionable medical treatment, forcibly sterilized during the Eugenics era, and considered "dogs" by contemporary insurance companies. A pattern of abuse is well established as is a long history of devaluation.

Nelson concluded his chapter by writing the disability activists involved in the Schiavo case were shrewdly practical and political. I agree the involvement of disability activists was political. This does not mean their ultimate aim, equality for people with a disability is wrong as I am all for creating a new and positive view of disability in American society. What Goodman and Nelson do not consider or want to write about is the shadowy history and tenuous place people with a disability have in American society. When the Schiavo case was in the news Iowa Sen. Tom Harkin, a Democrat and proponent of disability rights told reporters, "There are a lot of people in the shadows, all over this country, who are incapacitated because of a disability, and many times there is no one to speak for them, and it is hard to determine what their wishes really are or were. So I think there ought to be a broader type of a proceeding that would apply to people in similar circumstances who are incapacitated." I for one think this is not only a good idea but in the best interests of all people, those with and those without a disability at the present time.

O' Canada: Citizenship and Disability

Some readers may recall I wrote about the Chapman family in the summer of 2008. Briefly, the Chapman family was denied entry into Canada because they have a child with a disability. I was outraged by this story and it appears the same thing is happening again. This time a French family who were encouraged to move to Montreal by an embassy official in Paris hasve been told they cannot remain in Canada. The reason given is the same one the Chapman's heard: their daughter, who has cerebral palsy, would place an "excessive burden on social services". It is estimated that the child might cost health and social services up to $5,000 a year more than a so called normal child. Essentially what Canadian officials have decided is that any person, adult or child, with a disabling condition is not eligible for citizenship because they are deemed too costly. If you want to take an even harder view, one could argue children with a disability whose parent wants to move to Canada are not fully human and instead are a kind of unwanted property.

David Barlagne and his family are now in a difficult situation. They took a chance and moved to Montreal in 2005. Barlagne told Canadian officials his daughter had cerebral palsy upfront. He was assured that if his business was successful he would not encounter any problems becoming citizen. Five years later Barlagne is in trouble despite the fact his business is thriving. Citizenship and Immigration Canada has rejected Barlagne's request for permanent residency because his daughter is "medically inadmissible". In a letter to Barlagne Citizenship and Immigration Canada wrote that his daughter suffered from a "global delay" and she "risks giving rise to an excessive burden on social health services". Barlagne is mad and I cannot blame him. He told news reporters that "it's very unfair. What I find particularly unjust is that a representative of the government of Canada told me 'Come to Canada, no problem' yet after arriving in Quebec and contributing to society here, we can't stay anymore." Sadly, there is not much Barlagne can do. He is seeking a judicial review in Federal Court of Immigration Canada's decision. If he wins another Immigration Canada adjudicator would review the case. If he loses he and his family must leave Canada immediately.

There is no doubt in my mind Barlagne was mislead, perhaps mistakenly, and is in deep trouble. Based on how the Chapman's were treated in 2008 I think he and his family have no chance to stay in Canada. The Canadian press has been neutral in the reports I have seen. Some have been supportive of immigration officials. For instance, Jacqueline Ruby, an Immigration Canada spokesperson noted that such cases "are difficult for our department and are heartbreaking to our staff". Oh, spare the false pity. What is heartbreaking is a family that tore up its roots and moved to a different country. In addition through hard work and determination during a time of financial chaos a family man started a successful business only to be told sorry your crippled daughter is a costly burden on Canadian society. Of course Immigration Canada views the situation differently: "In general Canada is hoping that more skilled workers, investors, entrepreneurs, and other individuals will immigrate to Canada. Nonetheless, it is also the goal of Citizenship and Immigration Canada to maintain an appropriate balance between welcoming new members into Canadian society while protecting our publicly funded health and social services".

What a great country Canada is! It is protecting itself rather than discriminating against a class of people. That class of people are all those with a disability. Now I know where I rate. I am an "expensive burden on social services". I bet Canadian officials will be more than willing to take my tourism dollars if I care to visit but I am not worthy of citizenship. Immigration officials have made this abundantly clear with the Chapman's and now have reinforced that position with the Barlagne's. I also suspect that the Chapman's and the Barlagne's are far from unique. How many families I wonder do not fight back and make their stories public? Immigration Canada's position is truly outrageous and highly bigoted. A class of people have been deemed unfit for citizenship and I am a member of this group. So the next time someone tells me the disability rights battle has been won I will point out that in Canada I am welcome to visit but in reality an excessive burden on social services and as such not eligible for citizenship. Yikes, and I thought we had problems in the USA!

Assisted Suicide: Legal In Montana

For months I have been expecting the Montana Supreme Court to make assisted suicide legal. On Thursday December 31, this became reality. Montana is now the third state to allow doctor assisted suicide. What exactly does this ruling mean for residents of Montana? Well, doctors can prescribe the required drugs to mentally competent, terminally ill people without worrying about being prosecuted. This may sound reasonable as no one wants a person who is terminally ill to suffer when death is inevitable. But life and deciding who is terminally ill is not always simple or clearly defined. For instance, ALS is a terminal condition and any person diagnosed with this condition will be devastated. This is a reasonable reaction. But this same person can live many years and in some cases be alive decades later (this is not the norm but possible). Here is my concern: what happens if this person lives in Montana? What options will be discussed when ALS is the diagnosis? Will the focus be on loss alone, the slow deterioration of one's physical ability? Will a seemingly good hearted and caring physician state that assisted suicide is a viable option? This will be perfectly legal and a deadly choice some people may choose. The implications do not end with this one example nor are they limited to ALS. Let me turn to something I know a lot about--paralysis. What will happen to an athletically fit young man in his early 20s who experiences a high level spinal cord injury. If he lives in Montana will assisted suicide be a treatment option? I can readily imagine it would be easy to sway such a man to end his life shortly after such an injury. No one wants to be paralyzed, myself included. What if the post spinal cord injury portrait painted by the attending physician is hopelessly bleak? This is not far fetched. Indeed, such an approach was the norm when I was paralyzed. It was assumed high level quadriplegics could have no "quality of life". This assumption was wrong and based not on science or medical facts but a cultural belief that death was preferable to a severe disability like quadriplegia.

There is not much positive that can be found in the Montana Supreme Court decision. The one silver lining is that the court did not determine whether the Montana Constitution guarantees the right to an assisted suicide. Thus the court did not go as far as District Judge Dorothy McCarter had in 2008. Instead, the court ruled that "We find nothing in Montana Supreme Court precedent or Montana statues indicating that physician aid in dying is against public policy". Why does this not make me feel any better or less worried? Let's not mince words here: the Montana Supreme Court ruling represents yet another legal victory for powerful and well funded right to die groups like Compassion and Choices. This group in particular is adept at swaying the media and those unfamiliar with assisted suicide. Hence, comments such as those found in the New York Times that appear reasonable are in fact misleading. For example, the legal director of Compassion and Choices is quoted: "Montanans trapped in an unbearable dying process deserve, and will now have, this end-of-life choice". Again, on the surface this sounds reasonable but ignores the fact hospice care is available in every state. Nor does such a statement consider the gray areas I have already mentioned where bias against people with a disability rears it ugly head in a myriad of different ways.

Readers of this blog will know an ever present refrain of mine is nuanced debate--we need a nuanced debate about disability. Sadly, nuance is utterly absent in most cases where disability is discussed and this deeply troubles me. Yet when it comes to the discussion of assisted suicide the situation is far worse. Both sides of the debate, those for and those against assisted suicide, do nothing but scream at one another. Nuance is utterly absent, views are deeply entrenched and unwavering. In addition, strange political bedfellows exist such as conservative pro lifers siding with liberal disability rights activists. In part this is why I limit my comments about assisted suicide. I sincerely doubt I can sway people one way or another and restrict my observations to how assisted suicide can impact the lives of those with or who may incur a disability. This approach does not make me a popular guy. I can live with this but I remain deeply frustrated. But I would like to believe my frustration comes out in a constructive manner. In contrast the frustrated words of others such as Mark Mostert of the Institute for the Study of Disability and Bioethics (ISDB) leave much to be desired. He wrote: "My greatest frustration? That people with disabilities are so (forgive me) brain-dead in not seeing how they will soon be in the sights of the pro-death lobby. In my more perverse moments, I can't wait to say I told you so. More rationally, if more people with disabilities don't stand up along with those of us who are trying to get the word out, then our future is very dark indeed". I do not share Mostert's deep pessimism and regret his choice of words. They are alarmist and counter productive. Obviously I am quite adept at voicing my opinion as are millions of other so called "brain-dead" people with a disability. Thus I may accept his support but wish he could frame it in a nuanced manner.

Legit Skiing and Parenting

I am officially out of the holiday season blues. A ski trip to Vermont with my son was the perfect antidote to my depressed mood and the commercialization of Christmas season. Our trip was interesting and highlighted why I love Vermont, skiing, and my son. We skied Sunday in spite of a questionable weather. Sunday morning could lead anyone to question my judgement. We woke up early and drove through rain, heavy rain, to Sugarbush ski resort. When we arrived it was pouring outside. My son thought I was nuts and when we got to the Vermont Adaptive office I was the only student that did not cancel. I was not a popular guy! When my instructor arrived she looked like she just got out of bed and said "I knew you would not cancel". I felt bad as she had to get out of bed on a rotten day. But the skies parted, well sort of, and the conditions were very wet but acceptable. All day the instructor pushed me hard and forced me to ski on intermediate terrain. I like this hard ass approach and for the first day of the season I did well. But the best was yet to come. On Monday the rain turned into snow and over the course of the day almost a foot of snow fell. The conditions improved with each and every run. And an amazing thing happened. Everything I had been told for the last few ski seasons suddenly clicked in my head. I stopped leaning my head into the hill, I was not hammering my right turns, I was looking down hill, I was turning instead of traversing, my riggers were in the correct position, and I was going fast. I am not sure who was happier me or my instructor. But it was my son that made me think and laugh with delight. He skied with us toward the end of the morning and he was full of praise. He said "Dad, that was amazing, it was like legit skiing. You went from the speed of a bike to the international space station". Let me tell you it is hard, almost impossible really, for a parent to impress their seventeen year old son.

We only skied half a day on Monday and drove home afterwards. The drive was very long and gave me a lot of time to think thanks to the fact my son ignored me almost all the way home. While I could rail against the social isolation my son's ipod creates, I valued the quiet drive and was retrospective. My son will be going to college next fall and I have been thinking about my experience as a parent. I thought about the things I have done right, regretted the mistakes I have made, and compared my parenting skills with those of my parents. While measuring up to my parents is impossible, I think I have done a good job raising my son. We are very close, or as close as a parent can be to a teenager bent on independence. Aside from the usual ups and downs all parents and children experience, the custody case I wrote about in my last post had me thinking about the impact my disability has had on my son. This is not the first or last time I have thought about this. My disability is far too visible for others to ignore and we have been born the brunt of intrusive stares and unwanted and rude comments. Like it or not, he is very well aware that being disabled in American society carries great stigma. Thankfully, like me, he forcefully rejects that stigma. And like me when the issue of disability comes up he advocates on behalf of all people with a disability. At school he points out violations of the ADA to teachers and administrators and always frames disability rights as civil rights. I have not pushed or thrust my ideas upon him. I worried about this as the fight for equality is not his fight but mine. Yet he has taken up the mantle of equality for all that few if any teenagers I know have. He has also embraced a radical ideology that I hope will last. The colleges he applied to are all hippie schools with a strong radical bent. These thoughts went through my mind on the drive home from Vermont and it dawned on me that my disability has been a positive influence on his life and my parenting skills. My son is out going, always the first to defend the rights of others, is never discriminatory, and accepting of all others. How did he come to be like this? Surely encountering discrimination head on for much of his life was a major variable. He has seen me needlessly stigmatized by strangers, locked out of routine interaction via social and architectural barriers, and treated as less than human. At a fundamental level he has always known this was wrong and as he has gotten older become more vocal about it. This vocalization has taken many forms. For instance, he is decidedly unhappy that as a teenage he does not share the same rights as an adult. He often asks me why is it okay for him to join the military, die for his country, have sex, father a child but cannot buy a beer or rent a car.

In thinking about being a parent with a disability, in some ways I consider it to be an advantage. My son understands that the world is full of gray areas and answers to seemingly simple questions are not black and white. He understands what the law states and reality are two very different things. He understands in a visceral way that world is not fair, the disenfranchised are most likely to get screwed, and he does like this one bit. He understands there is power in solidarity and thinks people with a disability need a Martin Luther King type leader to rally around. He expects the world to be a just place yet knows this is an ideal we Americans have not yet achieved. He knows the problems I encounter are almost entirely social rather than physical and though he cannot articulate it knows the difference between a medical and social model of disability. Does all this make him unusual? Yes and no. Yes, in that he is far more socially astute than his peers. No, in that he is as self absorbed as any other teenager.

To return to our drive, on the way home I did engage him once about the case of Kaney O'Neill. I briefly described the case and asked him what he thought. In his estimation O'Neill is in deep trouble if she cannot reach an agreement with the child's father. The courts, according to him, will not treat her fairly. There is no doubt in his mind that the "best interests of the child"
will be used against her. I asked him why he felt so strongly about this. In reply he said "Dad, every time you took me to the ER for stitches or an official place where no one knew you they looked at you as though you were incompetent or a Martian. Do you really think a judge is going to look past a wheelchair and see the person using it?" My son's statement is as sad as it is true. I just wish others saw it in the same way. For instance, in a recent story about O'Neill published by ABC News Arthur Caplan, a respected bioethicist at the University of Pennsylvania stated "From a bioethics point of view, this case is not particularly compelling. To me, it's a straightforward example of disability rights where the law is completely on the side of disabled persons". Caplan is correct, the law is on the side people with disabilities. But those laws are interpreted and ruled on by humans with little or no understanding of disability rights. Thus I share my son's deep pessimism that O'Neill will be perceived to be equal to the child's father simply because he will be walking into the court room.

From my great distance and with no direct knowledge of the situation I have no idea who should get custody of the O'Neill's child. What I do know is that the mother, father, and child will all lose if they step into a court of law. Having been through a divorce and separation that is the one lasting lesson I learned. I also know, as my son does, that the mother's disability is not relevant. But life is not fair nor are the courts when a case involves a person with a disability. If you question this conclusion just ask my son what he thinks.