Today a jury awarded a couple 21 million in a wrongful birth case. One in which the doctor failed to inform them the probability of birthing another child with the same genetic disability as their other son:
The couple claimed that Dr. Boris Kousseff failed to diagnose their first son’s genetic disorder, called Smith-Lemli-Opitz syndrome, which is the inability to correctly produce or synthesize cholesterol, after his 2002 birth.
Had the disorder been correctly diagnosed, a test would have indicated whether the couple’s second child also was afflicted and they would have terminated the pregnancy, according to the lawsuit.
I find it of particular interest, that a jury found that not providing this couple with adequate information put them (and the child) in a position of undue hardship. Despite declarations that women only have abortions to avoid stretch marks or to go to rodeos, this jury seemed to overwhelmingly agree that women should be able to have a choice and at least be fully informed. I recognize that our current administration’s policy is of non-education, but it appears that most Americans prefer to be informed as much as possible when it comes to medical decisions of the reproductive nature.
Note, I posted this on my blog a little over a month ago, but felt it was worth re-posting:
I am always uncomfortable writing about issues that I have neither direct experience nor specific education/training in, but ehhh what the hell that hasn’t stopped me before. I more or less give that caveat for the purpose of allowing others the space to correct me or pipe up with their own opinions.
Belle points out that disability rights are women’s rights issues, and I tend to agree especially because my feminism is very much attached to human rights which includes the right to dignity. It is because of this I feel it is necessary to discuss life, disability, and death.
Philosophically a lot of the arguments surround issues of life; quality, sanctity, and definition. Most surprising is how close people are to the issues by virtue of being human, yet seem to distance themselves as far as they possibly can from the mirror of uncertainty of their own life.
Trinity’s post about Kevorkian is all the reminder I need on how this issue is neglected. I am in support of assisted suicide in cases of terminally ill patients, however as demonstrated it is often less than savory characters who are willing to take the risks challenging the current paradigm, not unlike pre-Roe abortion providers.
Our medical advances have outpaced our bodies, or the other way around depending on how you look at it. We no longer participate in mass institutionalizing of the disabled, which of course has various continuums and can not be drawn out in a linear fashion. While I celebrate the quality of life that many are now able to enjoy, I am still disturbed with our societies blind spot to the lives of the disabled and their families. It is impossible to write a narrative of the experience, yet we seem to be so focused on doing just that.
We like to feel warm and fuzzy when we hear inspirational stories of achievements from individuals who go on to accomplish amazing feats, psychologically it comforts us in our own vanity. However, for every savant autistic genius there is another disabled child or adult who may never reach such heights, and we prefer to be as far removed as possible from such. I do not suspect that the people who are affected seek sympathy as much as they do a voice, something that is all too often only reserved for those “success stories” that the media is so in love with. I believe this is a systemic problem and bleeds over to the fundraising arenas as well, the conditions with a famous face or “magic” appeal tend to be first in line for those ever so needed dollars.
Discussing the needs of disabled persons is something I think is better left to those who are aware of what would improve the lives of those affected. We talk about the need for research, the need for funds, and the need for facilities, yet we don’t talk about those who struggle nearly as much as those who overcome. It reminds me of poverty, instead of listening to the very direct needs of those afflicted we look to those who do not suffer in poverty as if that will give us the magic bullet of how not to be poor. Meanwhile, those with the means are focusing on theory and those in the struggle are weighted down with life, no cure, unheard voices and no easy answers.
In a culture that is so righteous about life, our concern stops there. I believe that it can be said that people do indeed deserve a choice. I’m not going to get into which conditions are more deserving than others, nor which ones are automatically off limits. I spent most of this morning reading this blog, and the only conclusion that I could come to was one of the need for education and choice. People are not puppies, you can not bring them into the world and decide that you no longer want them. However, I disagree with the concept of life being absolute and a heartbeat holding in a little pot of soul. With our current medical technologies we have saved lives and/or extended suffering.
I was the caretaker of my 89 year old grandmother before she died, due to the chronic nature of her illness’s (heart failure and COPD) there was a “do not resuscitate” order. As life would have it her body started shutting down in a gradual process versus a sudden state of desisting. Her final illness was not ultimately what killed her rather the catalyst for her death. There were difficult decisions to be made and doctors really do prefer to lean on the side of hope versus despair, so an expensive and risky surgery was planned to try to re-attach the lining to her lung. If she lived through the surgery and it was a success she would likely see 90, if not who knew what would happen. I had my suspicions and so did she, while recovering the next day following the surgery her lungs further deteriorated and her kidneys were the first to start shutting down.
She was moved to intensive care for some final efforts but it became clear that death was imminent. Conscious but tired, my grandmother was no longer able to even eat without choking, she was basically suffocating to death because her lungs were functioning at about 50% capacity. The time came when the doctors approached with either sustaining her life with a ventilator or making her comfortable with a drug induced slumber and then just waiting for her to die. Life at all costs would have had us put her on the ventilator and keep her around to look at while sitting in ICU, she wasn’t interested in that either. Family and friends all made their visits to say goodbye before she was likely to go out of it for good. Removing the tubes and oxygen did not kill her immediately, her body lasted for another 2 weeks but she was long gone. Personally, yes if there had been an option of a final dose after she lost consciousness… I believe we would have taken it.
The situation was similar with my grandfather, major surgery shortly before his death. He was against having his leg amputated and was clearly in significant pain from the vascular disease that gave him gangrene. At 85 years old dying peacefully was a more comforting thought to him than recovering from surgery minus his leg. Like my grandmother the operation was the only way to prevent him from dying a more cruel and painful death from the infection ravaging his body. In both cases they were subjected to more pain and significant surgeries in order to speed up their deaths, I wish there had been a more dignified way for the both of them to go.
I do feel the need to make a distinction between disease and disability, neither are exclusive to each other, yet both signal to our consciousness our own mortality. Defining life reminds me of the Sorites paradox in which when does a heap of sand cease to be a heap. Removing grain by grain, does it cease when you only have one grain left or is there another defining point? Does my desire for a more humane way for others to enter and leave this world mean that I do not think they deserve to share the same space as I? Of course not, but it also means that I support developing research that would improve the lives of those who suffer, even if it destroys what others took it upon themselves to define as “life”.
There is something incredibly hollow about the concept that ultimate dignity in life is preserving it above all else and at any cost.