"This leaves patients with the choice of ending their lives prematurely or crossing that threshold where they won’t be able to, thus damning them to a lingering end of dependence, misery and pain. Left with this choice, I must go with prematurely ending my life."
The second point raised by Mr. Johnson concerns organ donation. He believes his organs could help others who will die waiting for a life saving transplant. He notes:
"Although my motor neurons are wasted, only my muscle tissue is affected. Otherwise I’m a perfectly healthy 55-year-old male. I exercised daily. My blood pressure is still 110/70, and my heart rate a steady 70. I have perfectly functioning lungs, kidneys, heart and liver. There are candidates out there who could use my organs to save their lives. But even as a living donor, I am excluded from donating anything".
For those unfamiliar with assisted suicide legislation, likely the vast majority who will read Mr. Johnson's editorial, will be persuaded by his words. Mr. Johnson taps into very basic assumptions about disability and the end of life. For example, disability is a fate worse than death and that death is preferable when faced with a fatal condition like ALS. Mr Johnson wrote:
"I have become trapped inside a motionless body, a living mummy, a burden to those around me. The list of things I can’t do grows longer each day. My core is almost gone, and soon my arms and legs will become completely detached. Most of my muscles visibly vibrate 24/7. All that constant contraction causes perpetual fatigue and tension headaches. My doctor tells me ALS is a painless disease and that there is no reason to consider suicide. Maybe I’m just a wimp.
I am a social creature by nature, a party lover, invariably the last to leave. Now that my speech has lost its volume and become incoherently garbled, I find myself irrelevant in social situations. This isolation is every bit as painful as the physical pain and frustration imposed by ALS. Now, too, I am losing power in my arms and hands such that I type with one gnarled index finger and can no longer even pick up my iPhone."
Mr. Johnson is not a wimp. Mr. Johnson, like all of us, was not prepared to learn how to adapt to his condition. But adapt we do. In fact the vast majority of us when faced with a life altering disability or those who are forced to deal with end of life issues adapt. Some struggle for years with Depression while others rapidly move on. Some are ruined financially due to medical bills that insurance refuses to cover. Some die gracefully. Some rage at death and become embittered. Some people with a disability adapt with grace and beauty. Very, very few choose to die--they are the exception not the rule. And here is where I am left angry. Why is it that only people like Mr. Johnson who want to die are given support. Why is it that paralyzed people that want to walk are lauded while those who adapt to paralysis and want adaptive devices to empower them are perceived as a social burden or an economic drain.
When I read Mr. Johnson's editorial here is what I thought: why has no one spoken to him about brain scape or the myriad of ways he can communicate. I have met many respirator dependent quadriplegics, some with ALS, who lead rich and rewarding lives. Mr. Johnson can continue to have a rich and vibrant social life. While his condition is indeed fatal I see no reason why he cannot enjoy his life in the here and now. His words above are based on an implied social fallacy: life with a disability is inherently less, it is an existence that lacks dignity. People with a disability are not social beings. People with a disability cannot or do not socialize and are a burden on society. No one delves into the why behind this faulty premise. For example, I do not visit any of my friends homes--friends who do not have a disability that is because I cannot enter their home. Steps abound as do needless architectural barriers at work, stadiums, office buildings, hospitals, athletic facilities, libraries, and the list goes on and on. This is not a medical problem this is a social problem. American society does not value the existence of people like me and Mr. Johnson. The physical environment is built specifically for those that are bipedal. Access issues are an after thought--something that must be included because the law states it must be so. Such access is not valued--it is merely a box that must be checked off.
As for organ donation, Mr. Johnson's words sent chills down my spine--the chills only went to T-3, my level of paralysis and sort of wander down my side (a very strange sensation). Mr. Johnson's words are simply dangerous. What would happen to any individual with a high cervical spinal injury and more generally any spinal cord injury? Would this person become the ideal organ donor? Imagine if you were suddenly paralyzed, had never met a person with a spinal cord injury and knew nothing about disability. What would you think if you were told you will be paralyzed for the rest of your life? Would you be happy? Hardly. What if news of paralysis was followed by "you can be an organ donor and never live with paralysis". I have no doubt many would choose to donate their organs and die. This decision would be one based on fear and ignorance. Yes, disability may indeed be a fate worse than death. None of this even broaches the economic implications of long term disabling conditions. Simply put, it is expensive to be disabled. The other day I figured out that in the last 35 years I have spent nearly $25,000 on Roho Cushions alone. I shudder to think of what I have spent on basic necessities like catheters, wheelchairs, tires, inner tubes, medications, home renovations etc. Being paralyzed is an ever present economic drain. Would some choose to die rather than go into debt, declare bankruptcy and be forced to live in a nursing home? Worse yet, would organ brokers seek out paralyzed people. As Mr. Johnson notes our organs are perfect. Perhaps this sounds far fetched--too much like Soylent Green the classic science fiction film. I am not so sure. I am after all told once or twice a year by a total stranger that they would prefer to be dead than use a wheelchair. Don't take my word for it, Dr. Phil just had a show in which he advocated parents should be allowed to kill their disabled children. This was deemed "mercyful". Frankly, I fear such mercy. I truly fear for my life when I enter an institution such as a hospital. I am fearful not of death but some "caring soul", a "professional" who thinks I have suffered enough.
6 comments:
The whole shift from keeping people alive to applauding them for not wanting be kept alive through technology comes from the old "Whose Life Is It Anyways?", in my opinon. THe problem is that when the pendulum of opinions swings, it can go too far over, and this is truly a dangerous area. I am hoping that some moderation of all of this occurs, and those like you will be helping it along sooner rather than later, I hope.
A very dear friend of mine and Godmother to my two youngest, chose not to live with ALS. There was no talking her out of it. She live less than 2 years after dx and to her that was too long. Yes, she did not want to live the way her disease was forcing her to go. She had access to all of the information and way more funds than most, but living with that kind of dependence was not for her.
Bill, I am so sensitive to nearly everything you write about and have been educated, profoundly, when I've visited here. But I have to say that I find your own views just as extreme as those expressed by some of those you excoriate. As the parent of a child with severe disabilities, I am in agreement with you that people with disabilities are often an afterthought, but I don't believe that all of American society "disvalues" people like Mr. Johnson and yourself. I think thousands, if not more, people have worked damn hard for many, many years to rectify abysmal conditions and cultural constraints, and while there is mind-boggling work to do, there has been much "progress." It might be entirely subjective, but I find the arguments used in the disability community against "mercy killing" and "euthanasia" to often be horribly simplistic and more indicative of the extreme aversion to death of Americans and perhaps other western industrialized countries.
Bill,I have read and re-read your post on the ramifications of choosing death. I do not believe that when a person chooses to die that he or she contributes to the devaluation of the disabled or the very sick.
Some people choose not to adapt, not to "suffer", not to be alone...some people believe that their life is not worth living. These choices are personal choices which are complex, driven by forces unknown to us and perhaps not understandable. In many cases, the choice to die is shaped by a person's belief in the afterlife.
One cannot alter a person's choice to die by telling them how to adapt nor by illustrating how that choice devalues disability (the latter is an intellectual debate dying is a personal, spiritual and emotional choice.) Death is a right, for whatever reason drives a person and ultimately it does have ramifications only for the decision maker.
Perhaps we need to develop an ethic is allowing people to just die is they choose. Dying is ok and should not be questioned by anyone.
Phil, I disagree with your first statement. It is a choice that I believe a person should have in extreme situations, but it does contribute to the devaluation of the disabled and/or the very sick just by making it a legitimate possibility. It's a line that when it is crossed gets fuzzier with each crossing.
There would be an awful lot of deaths, suicides of depressed people if that becomes an accepted thing. It's contagious enough--one teen commits suicide and it becomes a frightening reality and possibility, with a statistical increase in those in that community following suit. That is well known in psychological circles. Sick people, handicapped people can be a lot of work, trouble and money. That alone is motive to encourage any of them to suicide when others do not want to contribute to their care and have to do so.
I agree that choosing to die has ramificiations. I am not completely convinced that our lives are completely our own. When one of us chooses to end our life, there are ramifications for many other people. If one believes that we are an interdependent species, I believe that when we are chooseing to end our own life we have to be cognisant of all of the people we know and who we don't know who will be affected by that decision. I am not convinced that dependency justifies death. I can't tell you why but I believe that people in extreme physical pain who are also dying may choose to take enough medication to ease the pain knowing that it may kill them. I'm not convinced that dependency alone is a good enough reason though I know I say this as a person who has the means to be quite independent.
I would agree to disagree, but worry, that like Curtis Johnson, such would be disallowed.
Suicide is the 7th cause of the death in the US for males. But the underfunded and apathy generally for suicide (one ever 16 minutes) is one I agree on - give more support and options. Except it appears that you are not against suicide as much as those in wheelchairs who choose it.
Nor does your response seem to be about Curtis Johnson, the individual, but your anger at a misunderstood idea oft thought about some SCI's.
For me, this is about Mr Curtis Johnson, who wrote the article in April, which was reprinted. In all versions, there is an easy 'contact' button. I mention that because you say, 'why has no one spoken to him about brain scape...' I emailed him on another matter, but am not familiar with 'brain scape'. Did you contact him? You could be that someone, his advocate of options. I myself would like to learn more, as Dragon does not work degenerating vocal cords and diaphram and this 'comment' has taken three hours to type. This common issues, his inability to be understood, is why he is no longer as sociable, not the accessibility issues you bring up.
His article was in part about choice, but also an arguement for turning a bad situation of rapid terminal disease into what he sees as a good one through organ donation. It is not about adapting to a new stable reality, as you did 35 years ago, because it is not about SCI. The grief cycle, which for many in rehab or post rehab of SCI may be longer than his entire lifespan. I don't know. But I do know that every change, every loss requires a new grief cycle and new challenges to adapt, knowing that there continues to be constant flux downward, until death. I don't know how often he has adapted, so I can't understand your conclusion that he 'was not prepared to learn how to adapt...'
In mixing a rapid degenerative terminal disease and drawing conclusions instead about possible individuals post traumatic injuries which are stable and non degenerative, it seems there is a lack of ability to adapt or accept the differences.
Studies put suicide for those with ALS at six times higher than average, and that does not include TS (terminal sedation, for those who have exceeded pain control). That stat is something to get angry about, and a drive to improve quality of life. However you state what But that is not what angers you is that because he is so different, and dying, his ideas might be seen with sympathy, and thus might make people view those in wheelchairs differently.
I admire your personal example of determination and expectation of equality as an individual (like when you went skiing with family). Yet the picture you paint is of those, like you, SCI's, who by being disabled, are easily led, weak willed, unwanting and unable to adapt or even collectively to be seen or treated as individuals. If this is the future you see, then yes, advocate for SCI's or other wheelchair stable users to adapt. But I see no connection to Mr. Johnson and ALS.
It seems that you and Mr. Johnson are talking past each other, as he talks about views and choices for the dying, and you talk about choices and views for those with disabilities. As he says, "it appears we are a primitive species when comes to dealing with death, and especially inevitable death."
I hope you continue to advocate for the rights of the disabled, particularly preserving those who are unable to defend or advocate for themselves. And I also hope that your views and understanding of terminal and degenerative diseases allow those individuals involved to take that journey, physically and mentally, as they are able.
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