Two days ago I read a story in the local newspaper about the suicide of a mother and daughter. The people that died, Nejla Akkoc, age 71, and her daughter, Ayshe Akkoc, age 31, died in White Plains, N.Y. What makes this double suicide of interest to me is the fact the daughter, Ayshe had cerebral palsy. Based on news reports her mother was her primary care giver. The mother had also recently been diagnosed with terminal cancer. The apparent reason for the joint suicide is the mother was concerned about who would care for her daughter after her death. This is shocking, deeply distressing and provides ample evidence care giving for people with a disability is a profound and in some cases a life threatening problem. Given my current dependency, albeit temporary, on my family this story has been stuck in my mind. I have lost much sleep since I read the story. According to news reports, a suicide note was found by the police. Apparently emails were sent to family members and both bodies were discovered in the early morning by the police. The typed note, written by Nela Akkoc, the mother, described a lifetime of "hardships" and a belief a cure for cerebral palsy would never be found. My reaction to this why? Why focus on a cure? Why were the "hardships" of disability so overwhelming that it led to a double suicide? I surely do not know the details of the mother and daughter respective lives but I have no doubt their needless deaths are a social failure. Why was a mother driven to kill herself and her 31 year old daughter? Surely social services were available to support the daughter? Or are they available in this era of draconian budget cuts. And who is most likely to suffer when it comes to budget cuts? People without a voice, people like those with a disability.
How did these people die? With the help of the Final Exit Network or at least the literature they produce. It is not at all clear if the Akkocs sought out the "help" of the Final Exit Network. Newspaper reports mention the police found the book, The Final Exit, by Derek Humphrey published in 1992 and revised in 2005 to include the helium bag method of suicide--the way Akkoc's killed themselves. I for one would like to know exactly to what degree the Final Exit Network was or was not involved. Here I must have faith in the police department charged with investigating the deaths. News reports all state people familiar with the case consider it a sad case--disturbing at many levels. But aside from being sad I think the death of Ayshe Akkoc was preventable. I cannot help but speculate what would drive a healthy 31 year old person to end their life. Was she dependent upon her mother for all her needs? If so, why, why was she dependent upon a single care giver, an elderly person and her mother? In addition, who was the primary mover in the decision to end their lives? I assume the police are doing their best to sort all this out but know they can do nothing to prevent future people from ending their lives. And who is at risk? People with disabilities, elderly, and terminally ill. These populations can be found in every community in the country--and I firmly fit in the at risk category. What separates me from the Akkoc family is an utter rejection of ableist beliefs that dominate our society. That rejection also includes my family who are currently sacrificing much to be my sole caregivers. To them I owe a great debt and can relate to the angst Ayshe Akkoc must have faced knowing her mother and caregiver was terminally ill. Surely she must have been worried about her mother's fate as well as her own. Such a symbiotic relationship is both effective and dangerous. To me it highlights, we as a society must do far more to support people with disabilities.
What bothers me, keeps me awake at night, is the knowledge that I have the same legal rights as Ms. Akkoc did. What separates us was our response to disability based bias. I utterly reject dominate notions associated with disability as does my family and many friends. Sadly, for Ms. Akkoc into the void of social support we can find groups such as the Final Exit Network. Perhaps they were involved and perhaps they were not. But they did produce a book that is little more than a how to manual for suicide. I simply wish a how to caregiver manual of equal quality was available for people such as Ms. Akkoc that want to live and need basic care giving. Where I wonder is the support for people with disabilities? Based on my recent experiences, such support is grossly inadequate and the health car system we have is hopelessly flawed. Most reasonable people, aside from Tea Party extremists, accept the system is flawed. Despite multiple flaws, the Obama administration is trying to change the way health care and care giving is delivered but it is an uphill battle. For real change to take place we need the social demand. To date this is lacking and as a result I argue we need a social revolution. A revolution that acknowledges people like me and Ms. Akkoc have rights, rights that include care giving when needed.
Paralyzed since I was 18 years old, I have spent much of the last 30 years thinking about the reasons why the social life of crippled people is so different from those who ambulate on two feet. After reading about the so called Ashley Treatment I decided it was time to write a book about my life as a crippled man. My book, Bad Cripple: A Protest from an Invisible Man, will be published by Counter Punch. I hope my book will completed soon.
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Friday, October 22, 2010
Assisted Suicide: Not an Abstract Issue
Posted by william Peace at 10:11 AM
PhD 1992 in anthropology Columbia University, I am interested in disability rights and bioethics.
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My God, Bill
I am speechless....
you said it all
Love, always in our Lord
Don't forget you have a 16 year old son who will soon fly the coop. Don't be a downer. You stand to lose your son emotionally if you do not pay attention to his needs!
As a mom, I do see it as ableist to believe that a person with a disability couldn't make it without me - disability does not negate capacity or resilience (though it certainly plays out differently sometimes.) I hear tones of isolation from community.. and distrust. Sad. Terribly sad.
Ableism shows up too in the folks who read this article and nod their heads thinking 'what else could she do???' There are many options... and there is much the community can do to promote access and welcome.
Assisted suicide stories always leave me a little bewildered. Is it hard to get supports? Yeah, it really can be. But it can be done-whether through the social services sector, or through a private network of friends and family. And yet at least once a year, I swear, I read a story of a family who had "no other choice". I find it heartwrenching and frustrating to see the life of a disabled person shut down by the idea that there is nothing out there. There is.
And I can also see ableism playing into this, because there IS devaluation of the life of a disabled people in society, which *can* lead some caregivers to figure that if this is the life they're going to have to lead, they might as well end it.
I don't know any of the details of this case beyond what you have presented, but I do get a twinge in my heart when I read it.
It is possible you missed the mark of my comment. I am 70 (seventy) years old and work for the Advocacy For The Handicapped. Far too many parents assume their offspring will be there for them as they age. Independence is a right under the USA constitution. However, far too many people have denied this right to the disabled. It could be to your advantage to email your legislators to fight for your rights. Remember also that the world has gone global. Thank you
It's so sad that society devalues disability to the point where these tragedies take place.
I'm beginning to think any thought of disability and how disability would/could/should operate in society, justly, is beyond reach. Articles like the one you've posted make me feel hopeless, angry and drained just reading them. All I can wonder was, were there supports realistically available and if there weren't, how can we change that? Part of me does not want to entertain the possibility that the mother felt she had no other option (regardless of the reality).
I have been doing much reading on Assisted Suicide since Peter Singer is coming to my college next month. Just today I was pointed at an op-ed by the person who invited him claiming
"So my 12 week old daughter Nora, who is not disabled (as far as we know), is not yet a person according to Singer. Because Singer thinks that all newborns are morally equivalent to fetuses, and he thinks it is morally acceptable for mothers to choose to abort a disabled fetus, he thinks that parents should be permitted to euthanize a disabled newborn."
And oddly enough after some noise on campus re: Peter Singer, he has set-up three panels to talk about Peter Singer's view on personhood and disability. Just reading his op-ed's (http://themhnews.org/2010/10/op-ed/letter-to-the-editor-6) SLOPPY defense of Singer is more than enough for me, thanks.
We need a revolution before it's too late. It's starting to feel like it already is.
Suggestion!!! In addition to posting comments on situations, how about emailing your legislators!
The homosexual communities are now legally getting married in some places.
Legislators will not ignore emails if they are polite and consistent.
I know this family and for what I understand there was a care plan and trust in place. I don't know who or why it was decided this was inadequate. I also don't know what the dynamics were leading up to this. It was a huge shock to those who knew them. Yet, I can easily conceive of both of them not being able to imagine life without one another. I think there needs to be more attention to depression and community support especially as it intersects with disability, as well as a greater range of assisted living options. They will both be missed.
Dominika, Thanks for your comment. This was a true tragedy, social and familial. I am distressed by all aspects of their deaths. I am also stunned there has been no press interest. My heart goes out to surviving family and friends.
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