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Sunday, May 11, 2014

A Reply to "What Should We Do About Severely Impaired Babies".

In the Kingston Whig I read an editorial by Udo Schuklenk who teaches bioethics at Queen’s University. Schuklenk’s, “What Should We do About Severely Impaired babies”? made me lose sleep last night. Link: Utilitarianism has its its hooks into the health industrial complex, mainstream press, and contemporary popular culture. Access to health care is increasingly based on the lives we perceive as being worth living. This is a dangerous if not a deadly line of thought for vulnerable populations. I am one of those people whose life is not worth living in the estimation of many—paging Peter Singer at Princeton University and all those at the the University of Oxford Uehiro Centre for Practical Ethics. So whose life lacks value? Severely disabled infants, elderly people with Alzheimer’s Disease, those with a profound cognitive deficits, vent dependent quadriplegics, and many other costly and undesirable human beings. This makes me shudder. It is sobering and distressing to know my existence is unwanted. It is frightening to know some, highly educated others, think my life has no value and would like to end my suffering. 
It is does not take a great deal of insight to establish whose life is worth living. All those that are productive and contribute to society in a very narrow sense have value: bipedal people with typical cognition who are employed and supposedly fully autonomous. What utilitarianism fosters is a business model of life or bottom line approach that is essentially heartless, unimaginative, and draconian. Compassion in health care? Forget it. All hail modern medical science and expensive high tech diagnostic tools. Of course the proviso is only those we value have access high priced high profit medical technology. Worse, we can use that technology to prevent expensive, oops, I mean severely disabled infants from existing. Schuklenk celebrates prenatal testing.
Every year a small number of fetuses are carried to term who have no reasonable chance of living a life worth living. They are so severely impaired that they will live a miserable, short life until they eventually expire. The good news is that, courtesy of prenatal screening, only few such births take place and the numbers are decreasing. We have some data from the Netherlands, where a few hundred out of about 200,000 newborns annually tend to fall into this category.
What Schuklenk is celebrating is a new form Eugenics. In stating this I just lost my bioethicists and neonatology readership. When I use the E word bioethicists and neonatologists shut down. These heath care professionals believe my views are offensive and unbalanced. Surely I must be a religious fundamentalist whose faith and adherence to religious doctrine clouds my thought. Worse, some neonatologists will furiously assert “I am not  Nazi” when asked probing ethical questions. There is no effort to look beyond the narrow confines of the institution and NICU where they ply their trade. This enables a scholar such as Schuklenk to wonder:
Would it make much sense to undertake significant surgery with the – unlikely but possible – result that the newborn might live a miserable life for another year or two before his impairment eventually catches up with him and kills him? Should we withdraw nutrition and hydration while providing palliative care so that he doesn’t suffer? Should we actively terminate his life to end his nightmare quickly and painlessly, as well as that of his parents? 
I find the above stunning. Schuklenk is a widely published philosopher and I cannot help but ask what if any experience does he have among those that live and thrive with severe disabilities. Has he ever talked to a vent dependent quadriplegic? Spent time at a group home?  Talked to people who care for a beloved elderly parent with dementia? Has he ever thought about the contribution those with a profound disability can make to society? I suspect the answer to all these questions is a resounding no. This is in part why I find utilitarian philosophers dangerous. They have not seen the power and creativity of the disability experience. They could not grasp that my entire conception of disability radically changed because of my exposure to a vibrant, funny, and profoundly disabled young woman who would be deemed non verbal by neurologists. They do not see what Eva Kittay calls emotional labor. They do not get why I am comfortable using the word Eugenics. You see when I was an undergraduate the most common person using a wheelchair was a person with spina bifida. I have not met a man or woman with spina bifida in a decade. Unlike Schuklenk I do not celebrate prenatal testing. I cannot celebrate the 93% termination rate when spina bifida is identified prenatally. The decision a woman makes to terminate a pregnancy is not done in a social vacuum. If 93% of women terminate such a pregnancy it takes a lot of intestinal fortitude to reject what virtually all women do in a comparable situation. I call this the illusion of choice. 

What Schuklenk fails to consider is that life with a disability, even the most severe of disabilities contains great value. Like many other scholars, he cannot make the required intellectual leap in logic. Disability is bad. Disability must be eradicated. Hence he can reasonably argue that health care professionals must give up the sanctity of life doctrine and replace it with a quality-of-life ethic. 

There is no point in maintaining human life for the sake of it if that human life cannot enjoy a moment of its existence and is trapped in a never-ending cycle of immense pain and suffering. A quality-of-life ethics would not merely ask ‘do you exist’, but ‘do you have a life worth living?’, or ‘will you have a life worth living?’
What is conveniently overlooked is the long a dismal history associated with disability. When it comes to disability—the social and physical implications—most will think a person such as myself has a very poor “quality of life ethic.”  People often assume I am unemployed and asexual. People are often taken aback I have a PhD from Columbia University. People are shocked to learn I have a son, was married and divorced. In fact I am routinely asked “are you the biological father” or "how long after your son was born were you paralyzed".  Essentially, the typical is thought to be beyond my grasp. What people see is all that I cannot do. First and foremost is my inability to walk. In response I routinely joke that bipedalism is grossly over rated. Behind this joke, a pointed joke, few get the fact quality of life ethic does not include virtually all people with a disability. This is wrong and the consequences are built upon 100 years of being a marginalized other.  

I find the cultural response to disability disheartening and the power imbalance between myself, bioethicists and health care professionals to be profound. Barbara Farlow who brought the editorial by Schuklenk to my attention is correct when she asserted that the mere fact the prestigious American Thoracic Society entertained such a discussion is deeply problematic. Worse, the argument against Schuklenk was framed strictly within religious terms and utilized an amorphous concept of dignity. This I cannot help but to conclude is not just misleading but disingenuous—a straw man approach to debating.

The editorial by Schuklenk reminded me of Harriet McBryde Johnson’s famous debate with Peter Singer. Her enlightening exchange brought Johnson into the national spot light. It helped that she whipped Singer in her public debate with him. An unabashed atheist Johnson, dismissed religious claims about the sanctity of life. She did not invoke the slippery slope. Instead, she asserted her humanity. How dare you or anyone else question or subvert the quality of my life. I am a human being and no human should be forced to defend their humanity, There is no such thing as a nonperson. So called nonpersons or those that think certain thresholds must be obtained to be considered human are missing a very basic aspect of humanity—disability and difference is a natural part of the human experience. It is in fact good for the human species. And it has been ever present. It need not be eradicated.

After more than 40 years of progressive legislation designed to empower people with a disability, the battle for equal rights remains very much an uphill battle. For Harriet McBryde Johnson, myself and all those with a disability that have the gall to assert their humanity we take our lives seriously. We value our existence. She wrote that Singer:

insisted he doesn’t want to kill me. He simply thinks it would have been better, all things considered, to have given my parents the option of killing the baby I once was, and to let other parents kill similar babies as they come along, and thereby avoid the suffering that coms with lives like mine and satisfy the reasonable preferences of parents for a different kind of child. It has nothing to do with me. I should not feel threatened. Whenever I try to wrap my head around his tight syllogisms, my brain gets so freed it’s—almost fun. Mercy! Its like Alice in Wonderland. No, having leapt down the rabbit hole and landed in this place, I find things becoming curiouser and curiouser. 

The fact is the presence or absence of a disability provides no indication about a human being’s quality of life. I know more than a few people with no disability whose quality of life is less than ideal. I know many people with a disability whose quality of life is envious. Life is not about thresholds we must reach but rather about social inter connectedness and doing the best we as human beings can do.  


Unknown said...

Here is the story of one of the lives that Schuklenk deems to be worthless. This little girl lived for 4 years. Her life had such a profound effect on her mother that she left her job as a news reporter, went back to school, and became a special needs teacher.

Here is another "worthless life". Even Oprah showed this video. In this case, the baby's life was short. The parents had two more children and then went on to adopt a special needs child from Eastern Europe.

Sometimes, some of the most intense and enriching experiences of our lives are also painful and difficult. To rise to the challenge, give everything you have and love without reserve, knowing you will lose is what the human spirit is about.

Myria said...

I am so glad we did not have a prenatal diagnosis for my daughter (she has Patau syndrome, like Barb's daughter). I have heard enough horror stories - there is immense pressure and often purposeful information given to mothers to make them fall in line with what the doctors think is best. No one should have to deal with that while they are adjusting their expectations for their baby. Even so we have had a lot of "soft" medical discrimination that I did not understand at the time - stuff like the neurologist telling me not to treat a seizure as an emergency unless it was longer than nine minutes (it's supposed to be after five minutes...for real people I guess *sarcasm*).
The cultural idea that disabled lives are not worth living is so ingrained that even my daughter's father once said it would be better if she died. I don't even want to know what other people say behind our backs. Anyone who thinks that can fuck right off.

Michael Watson said...

There is a rampant ableism now in Western culture. It goes along with a focus on self and a terrible survival anxiety. It also reflects the state of the world, a place of diminishing resources. Perhaps were we to focus more on interpersonal richness and compassion, and less on stuff, we could make room for all people, even us crips, without regard for ability or dis-ability.

william Peace said...

Barb, The closed world of neonatology needs to opened up so others can see the sorts of draconian assessments of life. In my experience neonatologists deeply resent any person that questions their ethics. Rather than be open minded they are all too often close minded, especially when it comes to disability.
Myria, The pressure brought to bear on a woman with a prenatal diagnosis is extreme. A positive test is in reality a recommendation to terminate the pregnancy. Those that defy this are stigmatized.
As for comments from others at least once a year someone will come up to me and state "I would rather be dead than use a wheelchair".
Michael, Like the phrase survivor anxiety. It is good way to describe how I feel when accessing health care.

Anonymous said...

One of the hidden tragedies, at least for folks who don't spend much time around the hospital professions, is the amount of unconscious ableism among medical staffers.

From 'death is the enemy' to 'we have to fix this (broken/non-standard) body' ... it's all too short a hop to the standard medical prognostication that this or that baby "will never be able to walk, read, or feed himself."

Fast forward 10 years and the child does all these and much more, but the doc hasn't updated his predictions, just claims that some tiny minority of such patients will be the exceptions, but still tells parents his impression of what the child 'can't' do. Without the least actual evidence.

Thanks for continuing to bring attention to this mess. We need to clean up our 'ableism' act.

Unknown said...

The Journal of Perinatology has an interesting article from May 2013 titled "Saving vs Creating: perceptions of intensive care at different ages and the potential for injustice." I am a neonatal nurse in a NICU, I have found it very true that babies are more easily let go. The justification is usually quality of life. The families that choose to do everything for their baby are seen as an annoyance and waste of time. That is such a scary reflection on our culture.
Keep up the good work William!

william Peace said...

Corinne, Delighted and a bit shocked by what you wrote. The NICU is an insular and isolated world. Those that work in this environment from my experience do not take kindly to the observations of people such as myself. Quality of life arguments are inherently misleading and it is easy to give up, kill, those who are far from typical. In ending the life of people who are very different, too often those with profound cognitive disabilities, creates great risk for those that survive. Worse, if we deem one's quality of life as being low then we provide grounds for cutting social serves to the bone. And yes this does reflect contemporary society--the rich versus the poor. A sorry state of affairs indeed.

Anonymous said...

Thank you for this well thought out article. I wonder if you have a bibliography for this? I ask not because I disagree with you but as a clergy person with an interest in bioethics I would like to follow-up on some of the quotes you offer. Thanks.

Anonymous said...

Oh, I am a clergy person with disabilities.should have included that in the first comment.

curlymare said...

Who has the right to judge another person's quality of life, anyway? Just because it doesn't fit into the able-to-walk-on-two-legs and having a brain like that of the majority doesn't mean it's not enjoyable or satisfying to the individual living it. I personally have a learning disability, and I am, for the most part, very satisfied and happy with how my life is and where it is going.

Unknown said...

John Robertson did some very good research on attitudes toward disabled newborns. As I recall, physicians were the single most rejecting group. High income, white skin, and male gender were all predictive of rejection. That was back in the day, but I can't see that anything has changed.

Andrew Cater said...

"Lives not worth living" leads to "Three generations of idiots is enough" / "This family will cost 60M RM over four generations" and all the other discredited Third Reich propaganda ...

william Peace said...

Patrick, You are correct about physicians negative assess me t of newborns with a disability. Nurses also have an extremely negative assessment. A study in Pediatrics reveled NIU nurses considered death preferable to a life with a disability.
Andrew, Love your comment Wish history were different but it shameful in terms of disability rights.

Unknown said...

I was, like all who have posted, deeply disturbed by the article your replied to. I also can believe that there are a number of health professionals who have the attitude that is being described. But I feel very uncomfortable with the generalizations that are made. My own experience has been quite in contrast to the views that are being expressed toward health professionals and NICU doctors and nurses in particular.

When my daughter was born, she could not breathe, move, or feed. These first weeks were the most difficult we ever experienced as new parents. After two months of critical care we learned that she has a very serious condition that would likely result in multiple disabilities. She came home after 5 months in the NICU, with a g-tube, on a ventilator, and requiring 24hrs monitoring and treatments around the clock. Surely an example of those babies mentioned in the article that is the subject of this post. And expensive too!

To return to the topic of NICU health professionals: There was not one moment during this experience that my daughter did not find the support, compassion, and loving care she deserved. Sure, there were a few (very, very few) less optimistic encounters, but the great majority of those involved in her care (and that was a lot of people) gave her the best that was humanly possible. Those nurses who I came to interact on a daily basis were true heroes, loving and ferocious advocates for the babies they cared for, including my daughter, even when it was clear that the events she was facing were part of a life-long challenge.

I think it is unfair to put all in the same bag. All deserve to be taken for who they are and all they can be.

william Peace said...

Eve, I am very pleased to know your experience with a critically ill infant in the NICU was dominated by memories of good care, support, and compassion. I would suggest your experience was sadly out of the norm. I hasten to add I have no direct experience with a NICU so I can only rely on what others such as yourself tell me.