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Friday, November 6, 2009

Baby RB: A Miserable, Sad and Pitiful Existence?

A legal battle is taking place in Britain regarding Baby RB. Doctors caring for a child known only as Baby RB is at the center of a life and death court case. This battle pits two parents against one another. The mother, supported by Baby RB's doctors want to withdraw life support from the one year old child. The father who is separated from his wife is fighting the mother and doctors efforts. The Family Division of the High Court in Britain and Justice McFarlane will decide if Baby RB lives or dies. As one would expect the press has sensationalized the story. Newspaper articles refer to the age of the parents, how they split up amicably, the number of hours they visit their child daily, and what the mother has worn in court. Nuanced debate is utterly absent. The important issue that is lost in the hysteria and headlines is basic: for the very first time a court will decide whether a child lives or dies, a child whose brain function is normal. You read that last sentence correctly: Baby RB's brain function is not impaired. This is subject to some debate because in the words of one doctor "it would take many months or years to develop a two way communication system". Thus it is entirely possible Baby RB can think as clearly as me and the people reading these words. Think long and hard about the implications of this.

Baby RB has a rare condition known as Congenital Myasthenic Syndrome (CMS). I cannot comment on what life with CMS is like. What I can comment on is the overwhelmingly negative assessment of what life is like for a person with a severe disability that have been made in court. What the mother and the doctors that support her decision want to do is kill; kill with love and kindness by removing life support. This is as perverse as it is wrong. It is an emotional argument, one designed to make us cry rather than think. And, as humans we must think long and hard about what is being said in court. For instance, the mother's legal representative has stated "She has seen the pain he experiences just to survive. In her mind the intolerable suffering experienced by her son must outweigh her own personal grief should she lose her child". Michael Mylonas, acting for the hospital trust, stated Baby RB was the "most severely injured child" and evidence compelled the hospital to seek "a peaceful calm and dignified death with palliative care to prevent suffering". Doctors that have appeared in court who support the mother state Baby RB is living "on a knife's edge". This a great sound bite that garnered many headlines. A more sober assessment was buried in a newspaper article that gets to the crux of the issue: "It troubles me that I am committing him on a daily basis to ongoing ventilation in an intensive care unit where I think his daily existence is distressing and that he does not have the basic building blocks which I see as necessary to live in the outside world". How does this doctor know whether Baby RB is distressed? Baby RB knows no other reality and his parents report they can recognize when he is unhappy or in distress. They can also tell when he is experiencing pleasure or, conversely, stress. This leads me to wonder who is in fact distressed, Baby RB or the doctors charged with his care who are making a subjective assessment about his quality of life. What I find amazing is that Baby RB's cognition is being used to justify ending his life. One news report stated "tragically his brain is not affected, so he can hear, feel and see but is locked in a helpless body". These comments echo what the mother's lawyer stated in court: "Witnesses for the trust will say that the fact is that cognition will simply make his own plight all the more unbearable to him. As he gets older he will see glimpses of what others are able to do". Please spare me the melancholy.

When I read the words above I could not help but worry. I know that on a regular basis I pass people that think my existence is not that much different from Baby RB--miserable, sad and pitiful. Scholars, doctors, and strangers alike seem incapable or unwilling to accept the fact that life with a disability regardless of its severity need not involve pain and suffering. I do not suffer nor am I in pain. Any pain I experience is not the result of a bodily deficit but caused by the stigma that tenaciously clings to cultural ideas associated with disability. I am well aware of what others can do--I catch more than mere glimpses of this daily. Frankly, I don't care nor do I even think about what others can do. Walking, jogging, running is not relevant to my life. I fail to understand why we as a culture place such great value on such mundane abilities. Sure the human body was intended to be upright, locomotion bipedal, and for our lungs to operate independently and without mechanical intervention. But this is not always possible and we humans are an amazingly adaptable species. When it is cold we put on warm clothes, when it is hot we seek the shade. We live in all sorts of different environments and we adapt to our surroundings without question or thought. That is we adapt without thought or question until disability enters into the equation. We do not equate adaptation, the bedrock of modern biology and evolutionary theory, with disability. Instead, we perceive disability as inherently bad--something that must be overcome or in Baby RB's case a disability so severe death is preferable. I completely and utterly reject this line of reasoning. I value my existence even though society would prefer my silence, isolation or death.

After reading and thinking about Baby RB this week I feel as though I am at war in my own country and well beyond its borders. Baby RB's mother wants her own child dead and as such is quite like Daniel James' parents that took their son to a suicide clinic and helped him end his own life after a spinal cord injury. These good people only saw pain and suffering--a thought that sends chills down my paralyzed spinal cord. I feel chills because I have no doubt many would like to end my suffering and pitiable existence. Few are willing to voice such an opinion as this would be in bad taste. No one will baldly state life with a disability is not worth living. But the lack of statement to this end does not stop the thought process or its implications. Instead we get people like Peter Singer who writes about lofty goals such as the amelioration of poverty throughout the world. One way to reach this goal is to seek to help the greatest number of people. Singer's goals are great and given unwarranted respect given his position at Princeton University but dig a little deeper and next thing you know babies like Baby RB will die. What will follow this? Should all babies determined to be severely disabled die. Should elderly people experiencing dementia die. Should people with cancer die. Should people with spinal cord injuries die. If so, who gets to make these decisions? And more to the point what does this say about humanity? I can tell you where this line of reasoning will go. The weakest least respected members of society will suffer and needlessly die. I might die. You might die. I am not being reactionary. I know this because I am perceived to be weak, lack social respect, and many think I am suffering and in search of a cure. I am a member of an underclass that has a long and depressing history filled with tragedies such as forced institutionalization and almost universal social invisibility.

I think we people with a disability are on the cusp of major social breakthrough in spite of stories like Baby RB. I suspect, hope, enough people such as myself and others are now in communities across the land that we are reaching a critical mass. We are not silent, we are not meek, and if I am any indication we are angry. We have rights and are willing to assert them. And now is a good time to let our voice be heard. We must protect not only our rights as people with a disability but we must band together with those like Baby RB that have no voice. We must protect Baby RB, fight for his right to live. We must fight for the rights of another child known only as Ashley X who has the right to grow into an adult body, a right that was violated and laws broken in the process. We must fight together and for one another regardless of our respective disability or cognitive functioning. We are all in this together, those with and without a disability. We are fighting for nothing more and nothing less than our very existence. Baby RB reinforced this belief, one I hope many share.


erika said...

I think it boils down to our views on the value of human life and the point of our existence. If we believe that the worth of a human life is not 'intrinsic' but rather it is tied to 'conditions' and achievements than it's inevitable to assign less value to people who can achieve less, or whose contributions are less esteemed by society. If we believe that pleasure and happiness are the purpose of our existence and pain and suffering are inherently bad, pointless, and to be avoided by any means, than preventing or stopping someone's suffering by all means is the obvious choice. Singer's support for involuntary euthanasia stem directly from his views on the sanctity of human life (or rather the lack of) and his utilitarian views on the purpose of human existence.

I'm really not worried that my baby's disability itself will prevent her living a happy, satisfying life. What I'm worried about is society doing it.

Excellent post!

FridaWrites said...

It breaks my heart that they're considering killing this child, and I hope that the right thing is done and that he's given every chance.

By the way, I was looking for information on Scouting and specific disability issues yesterday and came across your article in Ragged Edge as one of the first hits--as usual, right on. It made me feel less alone--my husband is Cubmaster, but he can't change the fact that others won't speak to me.

Matthew Smith said...

There is another feature on this case in the Observer (which is effectively the Sunday edition of the Guardian) today. No names or real-life pictures (although there is a courtroom drawing in the print edition, not replicated on the website) but it does make it appear that the couple are not as "amicably separated" as is being made out.

I was aghast at the suggestion that life on a ventilator is not worth living (as in, the tracheostomy is not worth doing because he'll still be on a ventilator). They know (but the journalists might not) that a trache is the standard way of putting a ventilator into a person who needs it for the long haul, because it frees up their nose and (particularly) the mouth. I wrote the Guardian and told them that I had an American friend who has been in this condition for seven years and clearly doesn't regard her life as not worth living (they didn't print it, but I posted it as a comment at Wheelie Catholic and the lady herself runs this blog).

There is a suggestion running through this that a parent (particularly a mother) always knows what's best for their child and whatever they say is best, is. That's not true, in my experience. Parents can be very selfish and may put their own, or their other children's, needs in front of a needy child. They are very capable of self-deception, kidding themselves that short-term harm is worth it in pursuit of long-term gain even if it's uncertain. I'm sure this mother loves her son, but also doesn't want to keep "watching him suffer" - or watching what she perceives as his suffering when she doesn't have the wit to stimulate him - and doesn't want to be tied to a child this disabled when she could be remarrying and having more kids. I recall seeing a programme on TV about two parents whose child became severely brain damaged early on and was deaf and blind, and who said they immediately sought euthanasia, hunting from country to country and trying to make a moral crusade in the UK as well. They allowed him to be shown screaming his head off, which they said he did all day long until he went to sleep exhausted. I watched this with my Mum and she commented that he was unstimulated and didn't know what to do with himself.

I find your position regarding the wheelchair as an adaptive device quite interesting. There are an awful lot of people who won't walk pretty much anywhere beyond the bounds of their property and use seated and wheeled transport even for going to the shops. I've always wondered why people talk of (usually someone else) being "sentenced to a lifetime in a wheelchair" when, even if someone is extensively paralysed, the wheelchair is, by a long way, not the worst thing about that. I know that's easy for me to say as someone who's never been through it, of course.

Anonymous said...

The biggest single characteristic of living on this planet, or living in general is to have something to do for 80 years.

The way I see it, looking after or sharing life with someone for mutual benefit is one very fulfilling way to devote one's time to.

People usually get married for this reason, or have children, friends, workmates.

Why in hell then, can't people share their lives with the disabled? Why can't this be a meaningful experience?

See the logic has been perverted here in favour of some very sinister and very powerful interests. There is a lot of money to be made from reducing medical costs for the disabled as well as taking their bodyparts. It's the same as harvesting trees and getting past the eco people.

The consumer rationale which is everywhere, is that spouses and babies are beautiful accessories so, yes go ahead and spend your time with them.

In constrast why would you burden yourself with someone ugly and drooling?

Well, the irony here is that Singer who proposes getting rid of ugly things is also physically ugly and bothered by it. So where does this leave the issue?

Don't blame me people for noticing this. EVERY darn thing comes down to physical looks now. We have been absolutely bashed over the heads to believe in the Singer-types deep, dark, secret preoccupation with looks. He thinks that if he hates being ugly so will everyone else.

william Peace said...

Misterc, I wish I could disagree with your comments regarding sinister forces at work when it comes to disability. As a group people with a disability are major players, consumers, in the health care system. In the past our numbers were small and easy to overlook. With the advancement of medical science and technology people with disabilities are living longer, in greater numbers, and for the first time expect to be treated as equal human beings. Our culture is not prepared to handle this social change and is proof to me that technological changes often proceeds social change.

Unknown said...

You may not have the abilities that I a so called "normal" human being might possess, but your existance and being has just an equal if not more important reason for being in this world as I have.

It's not about how many arms you have or legs or whatever, it's about a persons soul which by reading this entry in your blog proves is intact whatever the situation with its vessal.

william Peace said...

Mohammad, I wish more people saw the world as you do. Outward appearance and physical ability is far less important than what one does with their life.