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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.

Tuesday, November 3, 2009

Hostile Social Environments

With election day almost here I have been thinking of hostile social environments. I know when I vote I will most likely have a negative social encounter with either a poll worker or fellow voter. It happens all the time. This made me think of the other places I try to avoid because I know I will have a bad experience. By bad I mean I will be treated with disrespect or encounter a needless architectural or attitudinal barrier. Major professional sporting events are often problematic. Architectural barriers in the form of grossly inadequate handicap seating areas are a major variable as are ignorant drunks that seem magnetically drawn to my wheelchair. Secondary schools in my area, particularly my son's public school, seem hostile to the presence of a parent with a disability. But these place pale in comparison to the following places:

1. All Catholic churches: I grew up Catholic and went to Catholic secondary school. I have the emotional scars that often come with such an upbringing. Yet in spite of it all I still consider myself to be Catholic and when troubled read the Bible. In short, I am a believer. But I cannot believe nor could I ever pray or worship at Church. My problem is that I expect to be treated like everyone else. This does not happen in the Catholic Churches I have visited. Many churches have architectural barriers that are easily overcome and I often notice Churches have ramps. What no Churches have is a welcoming social environment. Each every time I go to Church I have a bad experience. It is the norm for someone to come up to me and state "If you prayed harder you would walk again" or "If you accept Christ as your savior you will rise up and walk". Usually this comment is uttered by an elderly person. This sort of old fashioned ignorance is somewhat forgivable though certainly demeaning. But this is not the lone reason why I dislike going to Church. It is the truly strange reaction I get from religious zealots who seem to think one of two things: 1. I am the anti-Christ. 2. I was struck down by God to punish me for sins I committed in my lifetime. This sort of reaction I cannot live with. Frankly, part of me is worried about my personal safety when I encounter these people. The fact the Church and so called leaders such as priests and nuns are present when these comments are made and do nothing is unforgivable. Their silence in the face of such blasphemy is an afront to my humanity.

2. Health Food Stores: I never ever go into health food stores. Thanks to the internet, I have not been to a health food store in a long time. When shopping in such a place I encounter people who are intensely curious about my disability. They want to know why I use a wheelchair and how long I have used one. I do my best to avoid this line of questioning because I know what is coming next. Comments such as this are the norm: "If you took the following vitamin regime I am sure you could walk again" or "Have you ever tried the following non traditional medical routine". There is the unquestioned belief I have needlessly accepted my fate, paralysis, and that they have the knowledge to cure me. How does one respond to such an ill founded conclusion? If feeling nasty I have told those especially aggressive in their quest to cure me that all my medical problems started from an unusual vitamin regime. I do not recommend this course of action--when I have done this I have worried about getting punched in the nose.

3. Health Clubs/Athletic Gyms: Paralyzed or not, I have always disliked gyms. If I want to physically exert myself I go kayaking, hiking, or skiing. I do not enjoy lifting weights or working out on any machine. I find such activities inherently boring. But what bothers me about gyms is the stares. A gym is a place where one is very body aware, it is the nature of the beast. My body does not fit in. And when confronted with a body such as mine people stare-and they stare a lot. Mirrors abound and as do the stares. What these stares mean I am not so sure. Pity from some, curiosity, revulsion, supercripdom, whatever. It is not a positive experience. Ironically gyms from what I have observed often go out of their way to be physically accessible. I know one local gym that even offers a membership discount to people with a disability. But the barriers present are not architectural but social. Simply put, I do not like being stared at and hence avoid gyms.

4. Hospitals: I hate hospitals but when I walk into one I feel at home, as though an inner calm envelopes me. That antiseptic smell is comforting and akin I suppose to the smell of an apple pie baking in a kitchen. The problem is that people like me with a complex medical past draw the interest of curious doctors. Good doctors are always curious and they love to ask detailed questions about my medical history. The fact they miss is that my medical history and paralysis is more often than not irrelevant. This does not stop them from asking many questions which need not be asked. The real issue though is when I am in a hospital one and all think I am a patient. This leap in logic leads to many to make false assumptions and many hospital workers treat me as though I have no role in society. Thus in the past when I have brought my son to the emergency room staff members are stunned I am a father responsible for the care of my child. I know this because they ask "Are you the biological father?" or "Where is the child's guardian?" This of course ignores the obvious--like my son needs stitches and his finger is covered in a bloody bandage. On the rare occasion I have been a patient, the fact my needs are different are always a problem. The overwhelming concern is will my care be more work for the staff. Once it is clear this is not an issue, the problem becomes hospitals are not prepared to deal with a paralyzed body. For example, upon admission one needs to be weighed. The scale to weigh someone in their wheelchair never ever works. Examination tables are never accessible nor are most procedure rooms. In short, architectural and attitudinal barriers abound leading me to conclude hospitals are dangerous places. You see I am not fully human in the eyes of many staff workers and fear, truly and sincerely fear, my life will somehow be snuffed out because someone decides I have suffered enough.

I am very curious if readers can add to this list. I have not mentioned airline terminals and the experience of getting on and off an airplane. The point here is that mass transportation as anyone that uses a wheelchair knows is often a problem. I am sure I have missed some places that generate negative experiences. So please comment. I want to know where else I should avoid!