About once or twice a year a complete stranger will utterly shock me. One theme of such unwanted statements made directly to me involve the belief that I would be better off dead than alive using a wheelchair. Hard to imagine but some people freely share this sentiment with me. Last Spring for instance I was eating a slice of pizza at my favorite place and a man looked at me as he was walking by and stated "I would rather be dead than use a wheelchair like you". After this endearing statement the man in question simply walked out of the restaurant. Sadly, this man has company--too much in fact. Is it rare for a person to make such a rude statement? Thankfully yes but that does not mean the notion of "better off dead than disabled" does not exist. In the "olden days" as my son would say when I was paralyzed people with high cervical injuries that would require a respirator to survive often died when "nature was allowed to takes its course". The thought was that a life on a ventilator was not worth living. Today many respirator dependent quadriplegics survive and thrive--they lead full and rich lives. In fact there are so many that space precludes me from naming some of the more well-known people.
When it comes to disability fear, like it or not, is major variable. No one wants to have a disability and some, certainly not all, fear disability. I don't understand this fear but my lack of understanding does not negate its existence. Surely part of this fear is the loss of autonomy and control over one's body. Things we as humans take for granted are lost or at minimum change dramatically. I cannot walk and as a result use a wheelchair. I see my wheelchair use as nothing more and nothing less than an alternate means of getting around. However, daily activities do take longer--dressing, showering, getting in and out of the car etc. The big loss to me is not how I do things but rather the time involved. I lose much time daily doing stupid ordinary stuff. People unfamiliar with disability don't get this point and instead see something "remarkable" about the ordinary. For some, again not all, the idea of having or worse yet acquiring a disability is feared. How these people wonder would I cope? At the core of this fear is the American glorification of independence and autonomy. I would rather be dead if I could not walk is not too far from I would rather be dead if I was cognitively impaired or dependent upon others. This notion in turn leads some to think assisted suicide makes sense--and on the surface it does. We humans should after all be able to live and die as we wish. But do our wishes, our dreams, ever match reality? In a word no. We do not get to pick and choose how we approach the end of our life. We do not get to pick and choose our parent. We are constrained by many factors in our lives--economic, social and political to mention but a few critically important variables. End of life issues are no different. Yes, we should control how we die but none of us really makes such a decision. Americans have medicalized death--it is perceived to be a failure when in fact it is an integral part of the life experience. And at the end of life who really makes the final decisions? In most cases it is a doctor or family members and in some cases the person who will die. Those dying and those busy living often state autonomy is valued--that without personal autonomy life is not worth living. Well, how autonomous are we really? Autonomy is an illusion--we are all dependent to certain degree. No amount of "safe guards" will ever change that--including the push to make assisted suicide legal. For instance, he Oregon Death with Dignity Act requires that a person" be: 1) 18 years of age or older, 2) a resident of Oregon, 3) capable of making and communicating health care decisions for him/herself, and 4) diagnosed with a terminal illness that will lead to death within six (6) months. It is up to the attending physician to determine whether these criteria have been met."
The above sounds very reasonable--logical in fact. Superficially, yes. But the Oregon law, held up as a paragon of law making, has its fair share of problems. As one familiar with the medical establishment, I am all too aware of how subjective any given diagnosis can be. Deciding who and is not terminal is equally subjective. ALS for instance is an invariably fatal condition. Many with ALS die rather than depend upon a respirator. If they chose to be respirator dependent they could in some cases significantly extend their lives. This is but one minor example. The greater concern is with what some are calling "doctor shopping". Terminal patients in Oregon are seeking out doctors and hospitals that will provide lethal prescriptions. As a result, on average a patient will only know their physician for a few weeks if that. In a fascinating paper published by a British organization, Living and Dying Well, Professor Onora O’Neill challenges the notion of autonomy discussed above. According to O'Neill the debate that is waged over assisted suicide is dominated by stereotypes--the terminal patient in unbearable pain being the archetype. The reality is far more complex--what toll does a dying relative take on the person's family and "loved ones". What is the economic impact on not just the person dying but their family members? Can the family provide the desired care? What about the impact a seemingly "hopeless case" has on doctors and those professionals charged with care? We do not live in a social vacuum--our lives and bodies affect others. I know for instance my mere presence is upsetting to some. Surely those dying experience something similar. The point O'Neil makes is worth serious consideration as states across this country consider copying Oregon's Death with Dignity Act. As anyone with an ounce of common sense will admit we live in a flawed world populated by flawed people--and here I include myself. Given this I think it behooves us to seriously consider O'Neill's words and conclusions. She wrote: “In a world of idealized, wholly autonomous patients, and of wholly selfless and compassionate families and professionals, legislation providing for assisted dying might, if ethically acceptable, not be risky. We do not live in that world, and I doubt whether we can draft legislation that is safe for human beings with their full variety of situations and dependence on one another”.
3 comments:
Actually, the amount of unkind, ignorant, if not mean, cruel, etc.. remarks said to even me as a caregiver ! "Get a life" "Lose the baggage" (my disabled husband) and stated ideas of "offing" myself, etc... & why didn't he? I found these remarks and attitude common. 80% approved of Terri Schiavo's demise. Most of this forced me to avoid public places. To find a kind person or kind remark was so rare I can count it on one hand. But, those rare individuals actually sustained me on a dark day. I recalled their sweetness into my soul. It was like water from Heaven.
I appreciate all you expose and how well you write it. Thank you for your advocacy and I am so glad you found those remarks rare !
Sonshine
Arts&, By unkind remarks I was specifically referring to comments regarding death is preferable to disability. Generally stupid remarks about disability abound. Sadly people just do not get disability rights at a fundamental level--it is something not taught or valued in this country.
Perhaps it should be taught in schools? There is a lot about racial and sexual discrimination, less about gender discrimination, but you hear nothing of disability discrimination.
I heard of a training course for Probation Officers here in the UK, entitled "Disability Awareness." Where they had to spend the day getting around a city, with one person sitting in a wheelchair, and the other pushing them around, and learning how to cope getting around. One thing I remember one of them saying, is that they felt so isolated, no one would look at them or speak to them. And with that understanding, maybe they would react, or at least think, differently in future. It might help if they taught something like this in schools?
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