Rhonda Wiebe Debates Assisted Suicide

Delegates at Summit on Sustainable Health and Health Care Hear from CCD

(The Conference Board of Canada held a Summit on Sustainable Health and Health Care in Toronto, Ontario. On 20 October 2012, as part of the program, the Conference Board organized a debate of the motion that end-of-life decisions belong to the individual.  The Conference Board of Canada invited Rhonda Wiebe, the Co-chair of CCD’s Ending of Life Ethics Committee to argue against the motion.  The other participants were: Moderator: Ralph Benmergui, Senior Advisor to the President, Sheridan College; Arguing for the motion: Wanda Morris, Executive Director, Dying with Dignity Canada; Daniel Weinstock, Professor, Faculty of Law, McGill University.  Arguing against the motion: Bernard J. Lapointe, Eric M. Flanders Chair in Palliative Care, McGill University.  Rhonda shared her speaking notes with CCD and these are shared below.)

Introduction:
 

On behalf of the Council of Canadians with Disabilities, thank you for inviting me to this event.  What makes this debate so different from most media coverage, reports or discussions on this issue is that you’ve invited the perspective of people with disabilities who oppose a change to the law.  Thank you for broadening this discussion to include us.

I will also declare myself as a person who lives with disability - a cluster of medical conditions that affect most of my major organs and systems.  I’ve undergone 17 surgeries.  I’m visually impaired, I have mobility restrictions, sometimes I need a wheelchair, and I live with significant pain. I will continue to lose capacity.  I need to keep defining what it is to be a person with dignity.

My argument today is this - before we can consider legalizing assisted suicide, we need to take a hard look at what it’s like now for people with disabilities, and the risks we already face.

Our debate topic is framed as a question that the decision is really up to the individual.  The hazard of intense individualism is that it only focuses on the physical risks to one person and not the moral risks to society.  You de-contextualize the individual at the centre by pulling that choice out of the larger dynamics at play.  The question, “Do end-of-life decisions belong to the individual?” needs challenging because it assumes all Canadians have the same choices in the first place.  If you view this through the experiences of people with disabilities, you will see that our autonomy is sometimes whittled away long before that happens to able-bodied Canadians. You can’t say that people should be “given choices” and then be silent about the fact that some of us don’t have equal access to health care.  For example, there are women who use wheelchairs who wait four times as long for breast cancer screening because there’s a lack of accessible mammogram machines. If you can’t get a diagnosis until it’s far too late, what kind of autonomy is that?

Lack of access to diagnosis is the tip of the iceberg.  You can’t espouse individual autonomy if people with disabilities don’t know what their choices are because it’s not communicated to them in ways they understand.  A lot of physicians don’t have the skills to explain choices to someone who needs sign language interpretation, or someone with autism, or aphasia, or cognitive disability, or mental health issues, or people who are deafblind.  If people can’t understand the information they need, they can’t participate in decisions about their own care.  It makes them unnecessarily vulnerable, and talking about autonomy without acknowledging these barriers is absurd.  Yet ensuring that real choice happens for people with disabilities appears to be of very little interest to those promoting so-called autonomy.

The idea of individual autonomy bears little relation to the bigger social factors at play in the lives of people with disabilities.  Canadian society has been discriminatory to the point that it is necessary for persons with disabilities to need protection under the Charter.  Even now, in the province of Manitoba, there are more human rights complaints based on disability discrimination than those based on race, gender, age, ethnicity, religion or sexual orientation combined. 

Canada has an ugly history of policies regarding disability, including eugenics, infanticide, neglect, forced institutionalization (which is still going on), forced sterilization, and segregation.  Health care professionals have played significant roles in these atrocities, and yet we have always been told by able-bodied Canadians that “this is for your own good.”

So given this uneven playing field, what do “autonomy” and “dignity” mean?  Why should we believe that dignity isn’t a slogan that camouflages unarticulated prejudice?

The word is co-opted into phrases like “death with dignity.”  We don’t hear nearly enough about “living with dignity,” except that some people with disabilities apparently don’t – because once you have a body that starts leaking from “undignified” places, there’s no point in going on.

How are people with disabilities portrayed in mainstream Canadian life?

“I’d rather be dead than disabled.” Although politically incorrect, this strongly held opinion is reflected in able-ist portrayals that say being disabled is like being given a death sentence.  Unfortunately, many people who acquire a disability are buying into this.  You can always find a person with a disability who wants to commit suicide.  And the go-to place for pro-assisted suicide supporters is to find that person who sees this loss as so significant they can’t go on.

When you acquire a disability, you may well be about adjusting to loss. You can’t do what you could easily do before.  Every day you may face renegotiating the world in new and frightening ways.  No one wants it, but that’s what has to be done if you want to live a vibrant, meaningful life.  Few supporters of “autonomy” acknowledge the problem might lie in our lack of supports to go on living.

And why wouldn’t you want to kill yourself?  Even in the highest levels of national policy, Canada sends the message that we are not wanted.  According to our current immigration policies, even physicist Stephen Hawking could be denied the opportunity to immigrate to Canada based on … disability. 

If a man that brilliant can’t “make the cut,” what does that say to people with disabilities?  It says “Canada lets you hang around because you happen to be born here, but you don’t really belong because you’re not able-bodied.

Why are we singling out people with disabilities from other socially marginalized groups?

Many groups facing discrimination have to be protected under the Charter.  Within each of them, you’ll find people who want to commit suicide.  The rate of gay teenagers killing themselves reached such significance that the world-wide  “It gets better” campaign was launched.  The campaign offers a clear message to gay, lesbian and transgender youth that despite soul-crushing prejudice, they’re great the way they are, it’s going to get better if they can find the right people and supports out there.  Why not for people with disabilities?

Groups campaigning for the “personal autonomy” argument use quality of life to support their position – i.e. what kind of life is that anyway?  People with disabilities ask, “Why just us?”  Why not work equally hard for that same right to suicide for bullied adolescents, grieving parents or anyone else facing a hard life?  No, you want to give them the supports they need.  So, why not us?  If a grim future trajectory is truly a reason to promote suicide, why aren’t we encouraging First Nations people at risk to have the autonomy to end their lives?  Remember the kids of Davis Inlet.  If you are offended by these comparisons, then you will know how offended we are every time we hear Canadians who don’t believe in our need for supports, but instead go for the easy, low-cost option of “helping us” end our lives.

What about those safeguards that are supposed to make sure only the right people die?

If we agree safeguards will ensure our well-being, then we’ll need confidence that our country will act in our best interest.  Let’s look at what’s been happening for Canadians with disabilities lately.

Disability groups have always been able to bring the community’s concerns to government to discuss policy directions.  In the last four months, the eighteen major national disability organizations have had their funding slashed so drastically that they may not exist within a year.  No voice equals no safeguard.

Fiscal restraints have cut basic resources.  These leave people with disabilities with a poorer quality of life and magnify physical and emotional duress. It erodes safeguards.

Remember the H1N1 scare?  We were shocked to discover that protocols around the last pandemic planning de-prioritized certain classes of persons with disabilities so they would be the last ones to receive treatment.  In the face of medical scarcity, we were the first ones to go. Some safeguard.

If assisted suicide is legalized, this viable option will stick in the minds of policy makers who determine budgets for Independent Living options and disability supports for children; it will hover in the background of family members who stand to gain from the death of a disabled person, and most insidiously, it will wheedle its way into the psyche of people with disabilities.  It’s in my nightmares.  When I am facing illness or pain or yet another surgery, will I hear the offer, “You know, we can help you die.”  What is most devastating for me is not pain, or loss of capacity, but when I am most vulnerable, the hardest part to overcome will be that offer that says, “Why don’t you end it all?” because it tells me I don’t belong - that a Canada with an able-ist imagination can’t picture me as a viable part of our common fabric, and that I have no place in the human family.  And what kind of choice is that?

Concluding remarks:

One thing I’ve never said publicly before is that when Sue Rodriguez first made her petition to have the right to die, I took the time to write a letter of support to Svend Robinson, the MP who championed her cause.  It just seemed the right thing to do.  But there was so much I didn’t know.  Even though by that time I had my own experiences of prejudice in the health care system, I just accepted them as part and parcel of having something “wrong” with me.  I hadn’t acknowledged that running alongside the Rodriguez issue there were so many risks to people with disabilities.  I hadn’t yet engaged in research where I interviewed people with disabilities who were dying who weren’t given palliative care options because they didn’t fit into the mould of a “normal” patient. I hadn’t done an analysis of who gets approached (and pressured) to sign Do Not Resuscitate (DNR) Orders, and who doesn’t.  I didn’t know that there were Canadians with Down Syndrome who automatically have DNR Orders on their charts because they’re wards of the Public Trustee and that’s the easiest way to deal with them.  I didn’t know that many expectant parents are not given fair and balanced information when a pre-natal diagnosis of disability is made.  I didn’t realize that in so many instances people with disabilities don’t have any choices at all – and that Sue Rodriguez’s choice fed into much larger schemata of social devaluation and elimination of defective people that many of her own supporters also weren’t recognizing.  We have to scrutinize the dark places.  If we shine a light on Rodriguez, we have to shine an equally bright light on Brian Sinclair, a man who was non-verbal who used a wheelchair who was found dead in an emergency room in Winnipeg after waiting 36 hours without treatment.  He came in to be treated for a simple bladder infection.  He wasn’t so much as triaged and his dead body was found by another patient.  It is the insidious connecting points between Rodriguez and Brian Sinclair that spur me on to come face a crowd where my convictions will not be favoured by a majority to say we as Canadians really need to take a hard look at who we are in relation to the citizens with disabilities who live and die among us.

Calling for legalized assisted suicide in order to allow personal preferences concerning death is an example of the kind of individualism that de-contextualizes the person at the centre, and takes onus off the larger community to examine its own attitudes about disability.  Margaret Somerville, an ethics professor from McGill University suggests we should reject assisted suicide because of the harm it could do to the fundamental values of who we believe we are as human beings.  Rejecting assisted suicide shows that we value the lives of future generations.  We need to ask ourselves, if we legalize assisted suicide, how might our great grandchildren die?  What will the magnitude of death-making be?  Can we truly value people that we can legally kill?

The statistics from Oregon & Washington bear out that pain, or the fear of pain, is not the chief motivator for people wanting assisted suicide.  Loss of autonomy, being less able to engage in daily activities that make life enjoyable, loss of dignity, being a burden, and losing control of bodily functions are all concerns that supersede pain, the main reason so often put forward in public discourse.  The disability community can provide an excellent role model on how to live well and fully and in community despite functional limitations.  But the empowered, un-pathetic portrayals rarely reach the television cameras.

This debate may boil down to a matter of deciding whether or not what’s good for a few overrides what will be harmful for many.  When the issue of legalizing assisted suicide comes up in the media and in the courts, the person at the centre is that familiar empathy-evoking figure whose self-perception is one of being desperately trapped in their own body.  Terminology such as `confined to a wheelchair` is used without recognizing how discriminatory language like that is.  Aside from our concerns that such people are so influenced by their own prejudice about disability that even not being able to go to the bathroom without assistance is reason enough to commit suicide, and even though we wonder if such people have ever interacted with others who have the same kinds of physical limitations who could be excellent role models in showing how, with the right supports, it does get better – aside from all of that – we know that for every one person in the spotlight who wants to die, there are hundreds of Canadians with disabilities in the background who are not getting what they need to live with dignity. Their stories are not being told.

What makes people depressed?  What makes people suicidal? Statistics bear out that if you are a person with a disability in this country, you are more likely to experience poverty, you are more likely to live in inadequate housing in unsafe neighbourhoods, you are less likely to be able to afford the kind of food that will give you adequate nutrition, you will have a lower rate of education, you are more likely to be unemployed, you are more likely to have experienced sexual assault and physical abuse, and you are more likely to experience social isolation than someone from the general Canadian population. Those conditions can all be remedied. But we can’t have all those issues in place and then put the option of assisted suicide into play. No matter what the judge in the Carter decision says, these are not hypotheticals. We are not hypotheticals. This is disability reality. And the risks to the many have to outweigh the potential benefit to a few.