Skip to comments.Are we better off dead than disabled?
Posted on 12/15/2011 3:58:50 PM PST by wagglebee
The perils of the social devaluation of people include legal assisted suicide and euthanasia
It is not uncommon to hear people without disabilities and people who have recently acquired a disability say they would rather be dead than disabled.
Although politically incorrect, embedded perceptions that life with disability is full of suffering and indignity promote the idea that it's a death sentence. Able-ist social conditioning equates disability with pain, frailty, incapacity, and poor quality of life. It views persons with disabilities as problems that need to be fixed.
The 'problem' of disability
I would argue the "problem" of disability lies more in external social, physical, attitudinal, and architectural barriers.
I am considered legally blind. If you hand me something in 12 point font, I can't read it. You might say I am disabled because I can't see. However, if you give me a document in large print, I no longer have a problem. An external change resolves a biological "shortcoming."
At times I use a wheelchair. I am "disabled" by the environment around me: stairs, curbs with no access cuts, and doors that don't open automatically. However, when changes are made externally, I become self-reliant.
Negative images devaluing persons with disabilities infiltrate literature, movies, news media, and television. We are portrayed, at best, as having lives no one wants, and at worst, as freaks or deviants. Rarely are we depicted as empowered people with much to contribute to the world around us.
Unfortunately, many people who acquire a disability internalize able-ist perspectives. They see themselves as being of less value, rather than as people who have needs which, when accommodated, help them enjoy the same rights and responsibilities as every citizen.
Dignity and wellbeing are mistakenly equated with being able-bodied. Conversely, illness or disability is associated with lack of dignity. Dignity, a key component in actions before the courts that seek to legalize euthanasia, is often defined by the notion that something like incontinence indicates a lack of dignity because it is perceived as a loss of autonomy.
Although most people would not choose to be incontinent, toileting needs can be met through the assistance of another person or a disposable incontinence product. (Please note I'm not calling them diapers; infantilizing the people who use them only reduces their dignity.) Somehow needing help to go to the bathroom is considered to have a greater detrimental impact on dignity than relying on other supports.
Many people use eyeglasses. However wearing spectacles doesn't lessen one's dignity or even one's rightful place in the world. The need to don an invisible incontinence product, on the other hand, seems a good reason to encourage someone to end it all.
Able-ist attitudes permeate our politics. Canada's current immigration policy restricts persons with disabilities from immigrating to our country. It could deny someone like renowned scientist Stephen Hawking an opportunity to immigrate to Canada.
I admire Hawking. He has not succumbed to the idea that because he has ALS he has nothing left to offer. If a man who has made such significant contributions can't "make the cut," what message does that send? It says we don't really belong because we're not able-bodied.
Medical practitioners are not immune from acquiring these negative perceptions.
Years ago I initiated a conversation with an endocrinologist about the possibility of pregnancy and how it would affect a woman with my disabilities. I wanted to have children, but also wanted to be responsible by getting fair and balanced information from an expert.
My doctor's response was something like, "If people like you stopped having children, we could eliminate this disease from the face of the earth within a few generations."
I don't know if he considered that eliminating "the disease" also meant eliminating people like me. For him, the problem was inside me, and following that logic, I was the undesirable component.
The unworthy are at risk
If we are tacitly acknowledged as unworthy, we are at risk. At times of fiscal restraint, we can experience discrimination when medical budgets are limited.
It's very difficult to access information about how health care resources are allocated, but there is much evidence to support the idea that they are determined by measuring our value using subjective criteria like "quality of life."
If medical practitioners don't have the direct experience of living with disability, and if they don't make extraordinary efforts to explore beyond the bio-medical models available in med student curricula, how can doctors ever have anything but an able-ist evaluation of someone's quality of life?
If our quality of life is viewed as being narrowed, we risk having our health options shrink. If our health options are taken away, or never presented in the first place, our very existence is threatened.
It is especially when we are coming to terms with new conditions, changing conditions, or physical and psychological pain that we need to be reminded that we matter, that we are worth something.
Our dignity is inherent
Our dignity is inherent. We have dignity because we are human. Our dignity is framed within the context of our sense of, contribution to, and interaction with our communities, not about what does or doesn't work in our bodies.
If Hawking can add value to our society, we all can. We are only limited by our able-ist imaginations.
If assisted suicide or euthanasia is legalized, it could be devastating for persons with disabilities. Medical practitioners might never question the desire of someone who has acquired a disability to be euthanized, because they wouldn't consider the possibility that the requester is experiencing difficulty adjusting to a difficult change.
Realistically, acquiring a disability is about living with loss, which often requires profound adjustment and supports, but so does losing a child. Do we hand grieving parents a hypodermic of lethal medicine and say, "This must be unbearable; here's a way to end your suffering"?
Canadians seem enthusiastic about promoting suicide prevention, but is that only for able-bodied people? When we face the social message that it's better to be dead than disabled, the option of assisted suicide and euthanasia, rather than providing supports to help us live fully, puts our very lives at risk.
Rhonda Wiebe is a disability rights advocate from Winnipeg. She co-chairs the Ending of Life Ethics committee of the Council of Canadians with Disabilities and serves on the Board of Directors of Not Dead Yet. She has lived with a disability since she was 13.
Exactly, dignity comes from God, it has NOTHING to do with how we look when we die.
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I can speak from experience. Having led a very healthy, active, sporting, woodsman, life, then contracting severe bone cancer two years ago requiring major/readical surgery to survive. Three major surgeries, 3 mmonths in the hospital at MD Anderson in Houston, 3 more months of very intensive rehab to teach me to walk again.
I am now disabled and can hobble around, but will never run, jump, climb, etc. again, and my bowel and bladder functions are severely constrained requiring a very strict diet and very attentive monitoring to be able to even accomplish those basic functions.
Hundreds and hundreds (many right here on FR) prayed and followed my experience and stoory.
Prayers were answered...many hearts were touched.
I have now seen two more grandkids boorn, a son return from a foreign mission for our church, a daughter preparing to get married (our other two daughters and one other son already are married), and have been able to enjoy my grandkids so much.
Would I be better off dead? That’s God’s decision...not mine. I need to be a tool in His hand and help others, and witness to others...which is what I am doing now.
The inclination to allow assisted suicide and somehow say its okay for folks to just die is not an inclination or thought that comes from God. He is perfectly capable of taking us when our time comes in innumerable ways.
He wants us to have faith, to come to Him and His Son, and then to bear witness of Him in all circumstance and use our free will to live as long as we can and help others.
I know this to be true.
My Sacral Chordoma
God bless you and your family and I wish you all a very Merry Christmas.
My father is an esophageal cancer survivor with similar challenges.(Plus he is unable to lay flat, which compromises not only his sleep but any medical care as well). My girls were babies when he was diagnosed, and now they are on the brink of adulthood (18 next month), extremely grateful to have their Grandpa in their lives.
The disability is something I have, it is not something I am.
Over the decades (I am 65)I have had to deal with some very ignorant people and had the pleasure of knowing some very marvelous people - just like everyone else.
As a child growing up in the 1950s my parents taught me to become as self-sufficient as possible. If something doesn't work for me in the “normal” way I had to find another way to accomplish it. Learning to tie my own shoes was a toughie, but I did it.
I learned early to dwell on what I could do rather than on what I couldn't. I accepted early on that I would never be much of a pianist or learn to juggle, but I did learn to fly airplanes (single engine and sailplanes), drive cars in off-road rally competition, and be a pretty speedy one-handed typist.
I never let the disability I have decide for me how I was going to live my life. If I wanted to try something I found a way to do it. In college I discovered the theater. Forty years later I can point to a long list of credits in theater, films, more nightclubs than I care to think about and commercial voiceovers. I've written novels, plays, jokes for comedians and even a textbook used to teach traffic safety.
When I see stories about euthenasia of the disabled it makes my skin crawl because I know that they are talking about me.
If these people get their way in this world and “get rid” of those with disabilities then all of humanity will become a race of cripples.
“...is not an inclination or thought that comes from God.”
Just today I was watching a homeless guy with a heavy pack and a cane slowing making his rounds of the dumpsters. I thought to myself what keeps that guy going? If it were me - I’d probably blow my head off.
Hopefully I would remember your sentiments above though. The kids and I were watching that zombie show on T.V., and the discussion of suicide came up - and they all thought they would kill themselves rather than to try to survive in a zombie infested place.
I explained to them that life always has its difficulties, and sometimes there seems like no hope, but there always is. And you fight for it and struggle for it. (”But dad - these are ZOMBIES!”)
Glad to see that you made it through all of your treatments so far from your home.
Hi, wagglebee and hello, Jeff Head. It’s great that Jeff’s back.
And me. And especially my husband. Of course, it made my skin crawl before we joined this elite group of "defectives," because even if it wasn't us, it was still real people they were threatening. If I can see that, why can't the euthanasists see it? I think their inability to see disabled people as real human beings makes them the true defectives. Oh, the irony!
I’m happy to see you here, sharing the good news of God’s blessings. I hope he continues to bless you.
From conception to natural death — let us live our lives.
Pro-life bump, back at you!
Here’s another side......
My MIL, a serious student of English History and literature, and former bank president, is now little more than a child in her dotage. Witnessing the agony of her daughters trying to cope with her declining mental/physical state is trying, to say the least !
How do you comfort a wife whose mother is little more than an infant ? A mother whose greatest pride was her mind, ( and her greatest fear was its loss) ?
And I’m facing the same issues myself, it seems !
So who “determines dignity” ? For my MIL, it seems it devolves upon her daughters. I can only be supportive. In my case, I’ve already made certain determinations based upon defined presenting conditions.
At some point we all must ask ourselves how much moral/ethical/legal burden are we willing to place upon our wives/husbands/children in these “end of life” decisions ?
Are you suggesting that the solution is to kill her?
My own mother is in a home now, near us. She has severe dimensia and is 86 years old.
She can remember very little and is slowly forgetting even how to eat.
We love her, we visit her often. Generally she is happy.
I am thanksful she is still here and my kids and grandkids can go with me to visit her and I can tell them stories and show them pictures of how she used to be.
The timing, IMHO, of end of life (though we all must make decisions and arrangements regarding it) is and should be in God’s hands.