Wednesday, January 4, 2012

Are we better off dead than disabled?

The perils of the social devaluation of people include legal assisted suicide and euthanasia

By Rhonda Wiebe

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.

Same rights

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.

Permeating politics

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"?

Suicide prevention

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.

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