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Wednesday, April 18, 2012

Better off Dead Than Disabled

In the last week a few people have asked if I am going to comment on a day time TV show Dr. Phil. After my experience with Dr. OZ months ago I am gun shy to say the least about weighing in any topic discussed on day time TV. I do not get the allure of day time TV. The only time I would think of turning on the TV during the day would be to follow a breaking national news story or local weather alerts. I cannot imagine siting down in the middle of the day and watching a TV program. So with some trepidation I am going to make some general observations about Dr. Phil and how he recently advocated for the "mercy killing" of people with disabilities.  I will not provide the link to his show. It is simply too offensive. Dr. Phil had a mother, Annette Corriveau, on his show who wanted to euthanasia her children. Yes, she wanted the right to kill her children. Is that putting it too harshly? I think not. Who else was on the show? The lawyer  Geoffrey Fleiger who defended Jack Kevorkian. So much for balance.  What the show was all about was pulling on viewers heart strings. Corriveau's children have Sanfilippo Syndrome. It was not clear what type they have. It was not clear the level of their cognition. It was not clear whether they were in pain. It was not clear what their daily life is like. It was not clear whether they could see or hear. It was not clear how much they are able to communicate. Inconvenient facts such as these only get in the way of the gut wrenching emotion TV programs thrive on.

No hard questions were asked. No one who actually spends time with Corriveau's children were interviewed. No one asked what their daily lives are like. No one asked why they have not left the institution they reside in for over two decades. No one asked Corriveau how she determined her children are suffering--a hard to access fact when she seems them infrequently. Apparently simply visiting her children is too upsetting. Yet Corriveau does the have the time to go on the Dr. Phil show and be interviewed on Canadian TV with Robert Latimer, a man who was convicted of murdering his disabled daughter.  Corriveau is setting herself up to be the expert on when it is acceptable for a parent to kill their children. Worse yet, Canadians seem to be rewriting history as it pertains to Latimer. He is not identified as a convicted murder but as an expert on children and disability. What shocks me is the social support parents receive when they express a desire to kill their children with a disability. Oh, how horrible it must be to raise a special needs child. Oh, how you must suffer. Only these parents know what such a miserable existence parenting a child can entail. I am not exaggerating. When Dr. Phil asked for a show of hands as to who supports Corriveau virtually the entire audience raised their hand. I just hung my head.

I do not know if it is the weak economy, the health care reform debate, or that the divide between rich and poor is expanding daily but these are hard times for people with a disability and by extension anyone else that does not fit into society. I have never truly believed people thought I was better off dead as the disability rights slogan mockingly proclaims. That belief has been shattered in the last two years. I have no doubt people with a disability are perceived to be suffering and those people that have no experience with disability think we should be put out of our misery.  I am not being mellow dramatic. I was offered assisted suicide in an underhanded way in 2010. Next week a paper will be put on line in advance of publication detailing my experience. The point, here is we are well on our way down a slippery slope if the masses are listening and watching people like Dr. Phil and Dr. Oz. Killing people with a disability is not seen as inherently wrong but rather an act of compassion, mercy even.  Great for day time emotional tear jerking TV shows but way short of facts and devoid of reality. The fact is people with a disability lead rich and full lives. I am one of many.  But I am one of many at risk. And that thought keeps me up at night and fearful of accessing the health care system that is hostile to my existence.

15 comments:

Elizabeth said...

I maintain that it's really difficult --and would venture to assert my antipathy toward -- the judging of these women (and men) who are parents to the significantly disabled. While I appreciate your identification with the disabled child, I don't think the paradigm works. I have a difficult time articulating this other than to say that my heart contracts when I hear these stories -- but not in revulsion. It contracts in recognition and, also, the strange ability to hold all the sorrow in the world.

william Peace said...

Elizabeth, I am not one prone to second guess the actions of others, particularly parents. However, some times people, parents included, are just wrong. Grossly wrong. I was offended by Corriveau who has courted the media and the utter lack of ethics on the part of the Dr. Phil show. Yes, the bigotry I encounter is substantially different than what a person with a cognitive disability encounters. But the root of the discrimination is identical. This is a very difficult concept to grasp--and I did not get it myself until I delved deeply into the Ashley Treatment. As always thanks for your comment.

Phil Dzialo said...

Bill, I'm also not a fan of superficial Dr. Phil, but I was emotionally struck by the 16X9 Canadian documentary....I am also left with thoughts that are the nature of an emotional chasm ... I also hold a place of tears and sorrow which leads me to a place that I refuse to judge. I did a blog post last week about this that may help share what I felt and believed.

http://healingandempowerment.blogspot.com/2012/04/taking-mercywhen-right-is-wrong-and.html

william Peace said...

Phil, I read your post and watched the 16X9 documentary. I do not know what it is like to care for a child or adult with a profound cognitive and physical disability. I do the best I can to understand this experience by reading how these people were treated in the past and how contemporary parents are coping through blogs such as yours. Despite my efforts a divide exists between my experience and yours as a caregiver--the emotional chasm as you put it. If possible, set that chasm aside and delve deeply into the social construction of bias and you will find we share much in common.

Rachel said...

Recently, I spoke with a friend in town who is the mother of a profoundly disabled child. He has multiple and severe physical and cognitive disabilities. He is also nonverbal, nonmobile, fed through a g-tube, and completely dependent on others for all of his activities of daily living. His mom has been reading my blog recently, particularly the posts in which, like Bill, I've been quite outraged about disabled people being killed by their parents and caregivers. She expressed how much she appreciated what I was writing, and as we discussed the issue of people killing disabled loved ones, she looked as though she was going to become physically ill. I have seen expressions of this same, visceral revulsion from many of my readers who have severely disabled children.

So I don't think that the chasm is always that wide between disabled people (many of whom are parents ourselves) and nondisabled parents. There is a great deal of variation in how parents feel about this issue.

SFmommy said...

I absolutely LOVE your comment. I AM A MOTHER RAISING A SANFILIPPO CHILD!!! So, I am able to talk on the subject, with knowledge of the subject. I agree with you 100% and was so upset by the show..more than I can tell you. I love my SF babygirl just as much as I love my three other nondisabled daughters..and they would be mortified if one day I said to them it's time to put Em out of her misery!! My Emily has known nothing but this type of life so who's to say she's unhappy??? She's not "ashamed" to be in diapers, it's normal for her. She knows she's loved and she loves unconditionally. I cannot say the same for many people I know. I can tell you that a mother who has not been an active part in raising her children for decades has no right to decide their fate at all. They are not her children to her, they are merely an inconvienence. My Emily has a Facebook page called Emily's Dance if you'd like to go see her. Please click like and help us raise awareness. You'll see my daughter is still mobile. She is 7 with type A, and two severe mutations. This means my daughter will not see far into her teens if she makes it there at all. Expected life for her is 10-12. Will I stop loving her when I have to feed her via tube? Absolutely not. Will I find her a pain because I have to suction her or change her? No, I will be thankful to still have my angel in my life for as long as SHE decides she is to be here. You see, no matter what life saving devices we use, tubes, vents, etc...the body goes when it's had enough. We see it everyday in our MPS family. Thank you for a wonderful comment and I hope that you are surrounded by loving and caring people like yourself!! ~Danielle

Erica said...

Although I haven't been watching his show recently, I have seen most of his shows, and I am a bit taken aback that Dr. Phil would be supportive of euthanizing a severely disabled child. What disturbs me even more is that you said that when asked for a show of hands in favour of murdering a child (because that's what it is), most put up their hands.

This speaks volumes to how the disabled are viewed in general. We are not people. We are not even considered human. One cannot kill another human being until one no longer views that person as human. When they have lost their status as a human being, it is easier to contemplate ending their life.

Hitler did not think of Jews as people so he quite easily dispatched them by the millions. The Hutu in Rwanda viewed the Tutsi as "cockroaches" and exterminated 800,000 of them.

The disabled aren't people, which is why we can even entertain the idea of killing them. And who is really benefiting? Supposedly the child is suffering torturous pain. How do we know this? I think if people like Latimer looked deep in their soul and admitted what they were really doing, the real reason would reveal itself. Disabled children or even a frail elderly parent may be "euthanized" because the caregivers are emotionally drained, financially drained and just can't do it anymore.

william Peace said...

SFMommy, I cannot begin to express how much your comment means to me. I have long maintained the greatest untapped resource in disability rights are parents such as yourself. Your comment gives me hope that the divide between those with and without a disability is not as great as I often feel it is. Your voice is so important as day time TV seeks to exploit the few parents with extreme and deadly views,
Rachel, I have faithfully been reading your posts and share your outrage. I went to a talk this week about SCI and motherhood. There is still virtually no literature on the subject 20+ years after the ADA was passed. Amazing.
Erica, Read the latest post at Not Dead Yet on Dr. Phil. From what I have heard he is grossly unethical. When he asked for a show of hands 90-95% of the audience raised their hands.

Jennifer said...

Hey there Bill - leaving a comment here as it's my first exposure to the 16x9 video...

I am really struck by the generosity of the commenters here - I have no such lack of judgement! I am frequently taken aback at the intellectual laziness and fear society holds about disability--and that video, and I suppose Dr. Phil's show (which I haven't seen), displays it in full bloom. Corriveau didn't earn my respect at any time in the video, but if she had, she would have lost me at that nonsense about how god is not keeping them alive, the tubes are.

My son was easily as disabled as her children. But I have never felt the way she does. So the fact of disability is not the issue here - it's the lens through which we view it. In my opinion, to support this is to condone killing children when the parent can't take it any more, which negates the rights of those individuals who are perceived to be suffering.

Jennifer said...

Hm. I realize I 'condemned' your commenters here when I was thinking of another blog! Sorry people above! Not you guys.

Jennifer said...

Hi again - just wanted to share my blog post on the same topic. Thanks Bill, for raising my awareness.

http://johannesen.ca/yesorno/2012/04/the-world-is-going-mad-my-commentary-on-so-called-mercy-killings/

william Peace said...

Jennifer, Thanks for your comments. I too do not respect Corriveau. I do not understand how any person can court the media with such a request--asking for public support to kill her children. The fact such people are put on daytime television and exploited for ratings only confuses me more. Though I will acknowledge such shows are perfect for highly emotional content devoid of any substance. What bothers me about the entire subject of assisted suicide is that at first glance it seems to make sense. No one wants to suffer and we should be able to control our own destiny. But scratch the surface and a different reality emerges. We are not autonomous being living in a vacuum. We have hospice care, we can control pain in the vast majority of cases, we can choose not to accept life saving medication, etc. There is no need for assisted suicide legislation. None. Read your post. I especially liked the video clip at the end.

A Caine said...

It is an interesting issue. I have a living will writing out regarding when I want the plug pulled on me. Also depending on the level of injury I had taken and the long term impacts I would consider suicide. Although in the last case its kind of a catch 22, because at the point I'd want to pull my own plug, I'd be incapable of doing so.

Basically as dark as it sounds, I've watched older generations of my family go through a period of their life where they had no quality of life and said "That won't be me. When the time comes I'm going out with dignity, not spending the last 5 years of my life incapable of recognizing my own family or controlling my own bowels".

So if I had a child who was to the point being able to communicate it would be a constant mental guessing game. I believe no matter what kind of brain trauma I suffered in an accident or cognitive problems that rose up, somewhere deep down in my head would be a voice saying "End it, pull the plug, get the Glock, end this." I'd be looking at my child every day and wondering "Is there some voice in my child's head screaming in pain for release...". On the other hand, its my child and I should try to give them the best life they can, not end it.

I could see how concern over how the child feels and possibly guilt over the disability could drive people to do the unthinkable and kill their child. Also guilt in the sense of "You know I had a sip of wine/stood near a smoker/something else when I was pregnant, maybe that caused this, maybe I did this to my child". At some level I'm kind of shocked I don't see more murder suicides involve a disabled child and a parent (especially with the mother as the actor).

Liz said...

Thanks for another great post William. I'm going to reblog this and pass it on to a bunch more people. I really love your writing and your politics.

And can't wait to read your story of being offered assisted suicide though it will be horrifying.

warriormommajane said...

I saw that show too, and I am the mother of a severely autistic child who will need life long care... The spin on the mercy killing was clearly for the ignorant masses and ratings due to the gut wrenching video. I used to like dr Phil until this year not bc of this show, but his lack of addressing our autism epidemic.. April is autism awareness month but none of those blowhards cared to have a show on it. Too much controversy surrounding its causes and too much big Pharma bankrolling our economy.. Was shocked there was only one lady in the audience that day defending the disabled... What will happen to my son when I'm gone if this is the way people view his existence. I understand the pain and putting a terminal older person out of pain if that is their choice. Our disabled children are not deemed human! Sad and true.