Baby RB will die. I fully expected this result but not the way it came about. According to British news outlets Baby RB's father withdrew his opposition to have life support removed. This took place one day after Andrew Bush, professor of pediatric respirology at Imperial College London testified that a mother's wishes should outweigh those of a father. Based on my understanding of the case via news sources, the pop psychology presented by Dr. Bush sealed Baby RB's fate. If this was not troubling enough, the words of the judge, Justice McFarlane, made it clear that Baby RB had no chance. And if you ask me Baby RB was never given an unbiased chance to survive. Once one gets past the superlatives heaped upon the parents involved, tears shed, clothes worn, and digs deeper the Judges words are sobering. In Justice McFarlane's estimation: "It is appropriate for me to say one or two words, not in judgement, but in endorsement of this sad but in my view inevitable outcome. It is I suspect impossible for those of us to whom such an event has not happened to do more than guess at the impact of it upon these two young parents. In one moment all of the hopes and dreams that they will have had for their expected baby will have been dashed and replaced with a life characterized by worry, stress, exhaustion, confusion and no doubt great sadness."
Clearly Justice McFarlane accepted the views of the "experts" that considered Baby RB's life a sad and pitiful existence. Is this assessment correct? I have no idea. But what I do know is that Justice McFarlane was unable or unwilling to accept that life with a severe disability does inevitably lead to a miserable life. It is as though Justice McFarlane took a page out of an old book, one which assumed a medical model of disability was gospel truth. In this book the doctor is always right (mothers too according to Dr. Bush) and life with a disability is bad--very bad. But why is life with a disability bad? This is the question that Justice McFarlane and many others conveniently ignore. The negative perception of disability is not based on science but rather on society's fear of life with a disability. Sure we build ramps, care for crippled kids and we do this out of the kindness of our heart. What society does not want acknowledge is the most basic need of people with or without a disability--the quest for our very humanity. Baby RB will be killed with kindness by two loving parents lauded by a judge. Baby RB had no chance--our cultural system never valued his existence. By extension, society does not value the presence of any person with a disability. I know this to be true because I have faced bigotry and ignorance for decades. The problems I encounter have nothing to do with my inability to walk but the societal bigotry placed on top of my physical deficit. This is the real issue, one that has not changed much since I was paralyzed 30 years ago or in the 19 years since the ADA was passed. My views are harsh but reinforced by ignorant comments, the utter lack of access, and simple refusal to negotiate difference. Thus in contrast to what others think when I see a person with a disability I see a hard assed survivor. Someone that has learned how to adapt and overcome a hostile social environment. A person that leaves their home with the knowledge they will encounter bigotry, be an unwanted presence yet asserts their most basic human rights. If there is anything sad about the case of Baby RB it that he was not given a chance. But then Baby RB has a lot of company--too many people with a disability are never given a chance or confront a system that prevents them from succeeding.
What a travesty. Legalized murder. Who knows what this child might have accomplished, given, or received?
ReplyDeleteThis whole issue gives me a stomachache and makes my heart heavy.
ReplyDeleteOn another note, I love and appreciate how you say "when I see a person with a disability I see a hard assed survivor".
Becs, Yes a travesty of justice has taken place. And it sends a message to all other parents in a similar situation: a child with a severe disability should not be allowed to live. Death is preferable to life with a disability.
ReplyDeleteErika, I know what it means to be a hard ass as I am one! Seriously, sometimes it is not easy to leave the confines of my home and be willing to encounter others who deem my life less valuable or pitiful. This makes my stomach ache as yours does for a baby we do not know that will surely die.
:(
ReplyDeleteShakes head and doesn't know how to change things.
It is hard to leave home sometimes, not just because of disability (pain can make it physically difficult for me).
A conclusion and an update must be drawn from this important child's experience. Otherwise we are lazy and stupid and letting him down.
ReplyDelete1. We are moving into a new era of business management. Business used to be about people as consumers and labourers. Now it's about people as the consumED. How much is this person worth? Are they worth more dead or alive?
2. Courts of law do not take an issue from scratch. judges are not blind. They reflect business which is where ethics now lie. For example the public is informed about organ donation through advertizing. Advertizing stems from business ethics where a caveat emptor is the starting point. Therefore when people agree to donate they are deemed to do so at their own peril and taste.
3. This baby was killed as part of the continuing war against "soul and spirit." Spending one's time in these pursuits is nowadays seen as unglamorous and without any sense of earthly achievement. Neurologists are the laughing stock of the medical hierarchy. You get shoved here when you are poor medical student and simply act as a motor mouth between stroke victims and their families.
4. What to do? The only way in my opinion is to tell it like it is. No more examples of patience.
Bring it down to its elements: A disabled person is a dog. We are allowed to have dogs. Dog worth is high in the marketplace.
Go ahead and be harsh, Bill. Bark more, I can't hear you!!!
Misterc, You raise interesting points. In my opinion there are no ethics in business. We have left an age of paternalistic capitalism and entered a world capitalist system in which money, profit, is valued more than anything else. This has profound consequences on people, especially the most vulnerable. The court system reflects strongly held cultural beliefs. The judge in the Baby RB case never gave the child a chance. He simply accepted what the experts told him. I for one have no faith in the legal system for it has failed people with disabilities for decades. I don't expect this to change any time soon. I am not sure about the "war against soul and spirit" but I am sure that doing the right thing is no longer valued. I cannot tell you how many times people have laughed at me when I told them I am a professor. They wonder why would you want to be a professor, the pay is terrible, you could make much more money being a high-school teacher. I have no idea how to reply to such a stupid mentality. As for what to do: write, fight, assert my rights are a start. I do what I think I can and makes ends meet at the same time. I am pretty good at barking. I wish people were better at listening.
ReplyDeleteFrida, Yes, pain can be debilitating and prevent one from leaving home. I spent a decade often in severe pain and it left memories and permanent scars on my body and mind. But progress has been made in the form of medications, adaptive devices, and pain specialists, a field that did not exist when I was young. Of course, this does not eliminate your pain--I am just trying to give a broader viewpoint.
ReplyDeleteBill, in your response you hit the nail on the head with "cultural beliefs." The question is whose beliefs are these? We live in a multi-cultural soup of viewpoints regarding the value and purpose of life and how life should be lived. There are stark differences here. Whose are winning?
ReplyDeleteIn one of my other posts, I mention "spirits and souls." Believe me I do not talk about these in a literal or denominational sense. I talk of them only as cultural beliefs and label them in the way that they are pejoratively called by those who feel they must position themselves relatively. By the same token, I call my relative opposite, "earthy."
I do not believe that the disabled should be put out of their "misery." I believe disabled people like all others, are distinct personalities with willpower and vision of their own. In my cultural view these are all you need for life (and misery).
The culture who is stronger as you say, and forcing the minds of judges, say that physical appearance is all that is needed for life, and wonder how anyone would want to live if they are unattractive (according to a pre-appointed Hollywood standard).
This attitude has gained momentum in the last 30 years and has surreptitiously changed the "ethic"
It has been largely fuelled by the need for organs, and they have to get them somewhere and somehow.
About technology. Technology comes from engineers. Medicine is about doctors. These in themselves are two different cultures. The one seems to progress/regress regardless of the other. There are lots of people struggling to find a thesis topic for their PhD.
Medical technology is a great fundraiser in hospitals. It is also used to give the appearance of goodwill and human kindness in the medical industry. It is also used selectively.
There are as well the token beneficiaries of technology. There are those who get some only because the industry needs tools to go out and say, "My doctors were wonderful. They helped me so much. It's a miracle."
For every person who is helped by technology, there are 50 who aren't. With more people now and more disabled, it is going to look as though more are living the miracle.
The thing that always keeps me in focus is that the dead can't speak in a way that people in power can hear. I mean those with the strings can't even hear living decible-d logic.
And as you say too, those who have crawled into power, obvious or behind the scenes aren't into empathy, consideration, imagination or creativity.
These things are able to go unheard because they can call them the stuff of "spirits and souls" and rely upon our culture's born-again Christian/intellectual rift to justify it.
We, intellectuals are terrified to acknowledge our beliefs in rights, dignity, empathy, autonomy and human expression. We are terrified we will be lumped in with the Bible Belt and perceived as having no thoughts of our own. This is by design, I think. Why? Well, because it is working so well! Debates in rights, enjoyment, expression etc are all hitting the wall. We are too scared to carry on.
I have only recently broken out of my fear of being seen as a religious nutbar. I recently realized that this is why critics of the system aren't getting anywhere.
I speak now of souls and spirits as a relative term and do so with pride i.e. OK call me anything you want and let's get on with it. I do so to reclaim my right to a belief in good thoughts and ethereal concepts like, the beauty of all who appreciate and enjoy, suffer and bear alike. I use "spirit" as the word for this (and I am a galloping intellectual, don't worry).
I remember when "spirit" DID mean lively, expressive and capricious. By design, and while we were off being capricious and spritely, this word was taken up in Crystal Churches.
I don't blame you for recoiling in horror when I said it the way it was once intended. The homosexual population went through this with the word, gay and fag. Now they use them, themselves and say "hey, thanks, you did that for me!"
Everyone has one's lot in life. Where there's life there's hope and always something one can do in an even pace and with patience and creativity.
ReplyDeleteI am the parent of a disabled person who was trapped in a hospital and denied care because he belonged to the statistic whose family would say Yes to organ donation in the face of bad news. His condition, when everything was examined after the fact, was not fatal in the least.
Families who say YES to organ donation are the biggest threat to the disabled.
I did not, and do not, say yes to organ donation but my son died anyway because he was so grievously harmed in the hospital's lead-up to deterioration and wait to announce it as the required bad news. They are careful not to ask you beforehand. Emotions and shock make for more Yesses.
I just want to introduce myself to this blog as someone who knows that had her son survived, he would never have complained about his state or his lack of devices. He would have been ecstatic to be alive.
What can one say about this dreadful situation? Well all I know is that I don't feel the judge ruled on this case on it's merits. He simply went with the hospital and the mother(who you honestly have to ask, what kind of mother could do this to her child). He never really heard the case, the father gave in for whatever reasons and we shall never reaaly know what they were. The judge however had a chance to hear the case on baby RB but decided not to because it was easier for him. This was going to set a precidence for future cases, he had the chance to make people think about things and to really think about what they were doing, but chose not to. Such a shame. Rest in Peace Baby RB. You deserved so much more for lasting as long as you did, a clear indication that you were not ready to go!! Please excuse any spelling errors.
ReplyDelete