Yesterday, February 2, Steve Drake at Not Yet Dead wrote a reaction to an article about assisted suicide that appeared in the New Statesman. The article subject to debate was written by Victoria Brignell whose writing is usually thought provoking. Her article "Assisted Suicide" was surprising to me because she appears to accept many of the misconceptions associated with assisted suicide. I need not repeat Steve Drake's astute observations made on his blog about what Brignell got wrong foremost among them quality of life issues and personal autonomy.
What I want to address is the questions Brignell posed with regard to assisted suicide and social change. Brignell points out that social practices evolve quickly and wonders "Could we reach a point where it is regarded as normal for a tetraplegic [quadriplegia] person to commit suicide? And as the population ages and pressure on social care services grow, could the authorities regard legalising assisted death for severely disabled people as a convenient means of reducing the demand on an increasingly tight care budget? It seems unlikely such a dystopian vision will turn into reality in the near future". Brignell's assessment may be correct in the UK but I think we have already arrived at this dystopian vision in the United States and elsewhere.
A thriving business of death exists in the Netherlands. Dignitas, the controversial suicide clinic, is seeking to expand its market in spite of the fact it is under investigation for illegally profiting from deaths it has facilitated. Oregon and Washington have assisted suicide laws in place. New Hampshire is seeking to rewrite its laws to facilitate assisted suicide under the guise of redefining what a terminal illness is. Multiple studies have demonstrated beyond a shadow of doubt that the people that seek out assisted suicide are not terminally ill. But this is not what one reads in the newspapers and is a fact that assisted suicide activists avoid discussing. The result is that the average person is stunned or at least I hope they are when they learn about Daniel James parents taking their son to Dignitas to commit suicide. Paralysis is something I know a lot about having been paralyzed for over 30 years. If I have learned one thing, it is that it takes time, family support, and interactions with other people that have a disability before one realizes that paralysis is nothing more than a forced change in the direction one's life will take. What is much harder to accept is the social stigma associated with paralysis and the significant expense associated with using a wheelchair. This is another thing I know far too much about and I consider myself lucky to have been paralyzed in 1978 and not 2008. The world I knew in 1978 was simple. When I was paralyzed newly disabled people had lengthy rehabilitation stays. In retrospect I am not sure it was medically necessary to spend months and months in a rehab facility. What I learned in those months had little to do with my medical care. Instead I learned that I had entered a rabbit hole like Alice in Wonderland. The world as I knew walking was a very different place now that I used a wheelchair. My life, my civil rights no longer had the same value they once did. I was suddenly a quasi human and considered my self lucky to be alive. I heard whispers and comments about how my quality of life and expectations must now be limited. I heard about others who were in some ways better off than me--I was told this directly. You see back then high level quadriplegics were not perceived to be worth treating and allowed to die. My parents forcefully rejected these ideas. They did this with vigor, anger and love. Their position was highly unusual at the time and I learned how to assert my rights within days of being paralyzed.
Fast forward 30 years and a new reality exists. The love my parents showed me has morphed into people like Daniel James parents. They loved their son. They knew he was, to use their words, a second class citizen. Because they loved him so much they gave him access to Dignitas where he would take his own life. This is not what my parents had in mind when they talked and fought for access. No one lauds people like my parents who like many others that support the life of people with disabilities. In fact, such people are often characterized as difficult and selfish because wheelchair access is thought to be something we should get to choose to do. In contrast, the reaction to James' parents is overwhelming. They are paragons of virtue, selfless parents that put the wishes of their child before their own. This is exactly why assisted suicide is such a threat to the most vulnerable people: elderly, physically and cognitively disabled people. A judgment is being made, one in which the lives of some people is perceived to be less valuable. Sure lets make assisted suicide legal for the terminally ill. But are not all humans terminal? Exactly who is terminally ill? How is this determined and do the definitions differ. They sure do and everyone knows stories about a person that was told they had six months to live and are still alive and well years later. Thus we need to provide support and compassion to those that are vulnerable, those whose life is viewed as somehow less. This effort is what makes life and humans so unique. In the name of compassion we are killing people young and old alike in the Netherlands and in the states of Washington and Oregon. This is not compassion I learned about through my parents. What is needed is not assisted suicide but appropriate social services for people like Daniel James and his parents. This is not too much to ask but it is costly in terms of time and resources when compared with assisted suicide. I for one would not be here had my parents not chosen to support me in those first hard months of paralysis and spurred me on. This is the sort of parental love and social action I hope to pass on to my son and is a life lesson all should learn. Simply put, assisted suicide is a cheap solution to a much larger problem that can be solved if we value the solution.
6 comments:
One of my rules - and there are many - is that I not make a major decision after a crisis for at least one year, preferably two. Who knows what James and his parents would have learned after two years of dealing with his disability? Maybe that life was still worth living? We'll never know.
As much as we Boomers take a bad rap for the evils in America, Boomers are too egotistic and outspoken to allow some pitying soul advance on them with a pillow to smother them.
People who murder without conscience, who smilingly assert they know what's best, don't. And more than that, think they are above the law, secular and divine.
I've been trying to find another post on this--ha, got it!--Wheelie Catholic's blog reports that the law allows such a wide reading that people without terminal illness are included: http://wheeliecatholic.blogspot.com/search?q=assisted+suicide
It's amazing how much the disability perspective gets ignored on this issue(always).
I'm remembering back to Million Dollar Baby and felt strange that they didn't treat her for depression or get her out.
The right to die quickly becomes the duty to die. When one of my three best friends went on a vent, others were horrified, asked how she could want to live that way. Why not? She can speak, write, teach. It grieves me to write this, but she's several times thought. Insurance and then Medicare won't pay for her oxygen or care, though they paid for the surgery for her to survive.
I have mixed feelings about end stage illness where pain relief is inadequate, but God, it just doesn't feel right. And what James had was not a terminal illness, but a disability. What happened was needless--we as people with disabilities can give in other ways, society should acommodate more. Too often we (as a society) encourage self victimization as much as the overcoming myth, perpetuating the idea that life as someone disabled is truly terrible. But getting out, making connections, having friends, living and learning and giving back in some way (which he could have done)--those are all beautiful.
It does seem that we as a society are awfully close to the Nazi's "solution" again. Not only is there cost savings for insurance companies and employers and the government, but there's a whole new money making industry around death.
I'm glad you're here, and Ruth, and my friend (not SCI, but very severe condition). And my grandfather, who is fighting death to the end; he wants to live so much, loves it. My other grandfather did not want to let go either, not even at the very end. They love life. Why take it?
Proofreading error--my friend has several times considered going off her vent, turning it off, because of the lack of availability of care and medically necessities such as oxygen.
Becs, I think we are very different in that I follow few if any hard and fast rules. Yet, what you mention, waiting at least a year after experiencing a major crisis is sage advise. Too bad James parents did not feel tha same way. His parents and many others failed him.
Frida, There is no need for assisted suicide laws. Pain management has progressed to the point where suffering is not as much of an issue as it once was. The law also permits a doctor to treat a patient with pain medication that may hasten death. NH is not the only state where assisted suicide bills have been introduced.
You are also correct the disability component is largely ignored. But that is just one of many things people overlook. Undiagnosed depression, inadequate safeguards, the stress on saving money in managed care, and the myth of free will are all variables. Another good point you make is about vent use. I am stunned by the media portrayal of vent use. One would think this is a fate worse than death (pun not intended). ER and films such as Million Dollar Baby push forward the idea that death is preferable to disability and especially vent use. This is offensive to me.
When a lot of people say "life support," they mean vent use specifically, not so much a feeding tube or cath, etc. If someone asked me if I wanted on life support following accident(versus a DNR order) then I'd have to say that depends.
We've all learned a lot over time with my friend's illness (as has she); it's knowledge that's gained through actual experience rather than just myth and speculation.
I think a lot of people are pressured into DNR orders when they still have or could have quality of life.
Thanks for addressing this issue.
Frida, I have no doubt some people are pressured into signing DNR forms. I think the distinction you make between vent use and life support is food for thought. I see a big difference between let's say a person with ALS that has decided to use a vent and a person that had a massive stroke whose life expectancy is measured in hours. But please not I am not familiar with vent use and will need to read more before I can make an informed comment. I am just shooting from the hip now.
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