Thursday, October 02, 2014

Bias, Bigotry and My Life

I was supposed to be in Ottawa today to speak, from a disability perspective, at a parliamentary luncheon around the issue of assisted suicide and euthanasia. Life intervened and I simply couldn't do it. I have turned my speaking notes into a blog. Here is a very adapted version of what I wanted to say.

(a picture of me, in a striped shirt sitting in my wheelchair, holding a mike)

(pause 5 seconds before beginning)

It starts here. It always starts here. It doesn't start with me, though you think it does, it starts with you. It starts the moment you see me. It starts the moment you lay eyes on me. Judgements, evaluations, valuations ... you start to look at yourself in relation to me, and that's when it happens. Stereotypes, assumptions, prejudices and biases come into play. Before I open my mouth, my worth and the worthiness of what I have to say, have been calculated, and typically, found wanting. Who I am as a person depends, not on me, my life, my history, but on the perception you have of me, of fat people, of disabled people, of gay people.

I met with a doctor who, before even greeting me asked me an odd question. She said, without looking up, "odious pee?" in a tired and bored voice, she'd done this before, she knew the answer. I was surprised and said, "No, my urine is fine." She looked up, flustered and said, a bit angrily, "I asked about odious pee." I was flustered too and said, "My urine is fine." As it turned out she was asking me about ODSP (Ontario Disability Support Program) a benefits program. I was not on ODSP, a fact that shook her a little bit. She had disability figured. Doctors, it's important to recognize, are not automatically free from prejudices and stereotypes regarding disability.

Two days after becoming a wheelchair user, someone said to me, "I don't know how you do it, I'd rather be dead than in a wheelchair." That was the first time that this was said to me. It was not the last. This attitude is increasingly present in our society, movies love plots where newly disabled people beg for death and are subsequently relieved of the burden of life. This attitude, the one that death is preferable to life in a wheelchair - who guarantees that my doctor, my surgeon, my specialist does not have this prejudice? Who assures that prejudice against the poor doesn't lead to worse health care - oh, right, NOBODY. "I'd rather be dead than in a wheelchair," if you've said it, if you believe it, I don't want you to be my doctor, I don't want  you having anything to do with decisions about my life.

Until you talk about bigotry and bias and prejudice, you cannot talk about 'assisted suicide' or 'euthanasia' with any degree of authority.

Until you talk about guarantees that people with disabilities are already getting equal health care, quality health care, you can't talk about 'end of life' or 'DNRs' with any degree of authority.

Standing beside me in the picture, just outside of your view, is a man with Down Syndrome. He comes from a people who's lives have already been determined as worthless. Headlines tout this country or that country aim to be Down Syndrome free by this year or that year. this news is celebrated. The man standing next to me has heard the debates about his life. Well, not debates, because you see he's never been asked. People with Down Syndrome are spoken about, not spoken with. When he enters the hospital a DNR can be slapped on him without his knowledge or consent. It's assumed, because of bias, bigotry and prejudice, that his life isn't worth living. He may disagree, but likely isn't given the chance to.

Every time I enter a hospital, I enter hostile territory. I anticipate that I will deal with ignorance from people with million dollar educations. I anticipate that I will deal with prejudice from people who have said an oath, meant to protect me from them. I anticipate that I will need to be a strong vocal advocate for myself.

I am fortunate. Very fortunate. When I became disabled, when the wheelchair was rolled into the room, I didn't sink into despair or depression, instead my heart leapt with glee. I was about to get out of Intensive Care and into Intensely Living. Here's why I was fully prepared:

1) I worked with kids with disabilities in a high school setting. Within two days I recognized that I was working with teens in wheelchairs. Within two days I learned that the wheelchair was there, it was real, but it was what they sat on, and that was all. I already knew when I got my first wheelchair that it was going to be a sweet ride. People with disabilities, not other's view of disability, was the source of my information.

2) I had a strong network of support. Primarily, I had Joe, a man that I love and I knew loved me. Rolling or standing, it didn't matter. He was there for me, he wanted our lives together to continue even if it needed to adapt. He understood that he would need to help me, but we'd been helping each other for nearly 40 years, big deal.

3) I had a preexisting accessible workplace. I had no fear of not being able to get into the building, not being able to access my desk, not being able to use the washroom. More than the building being accessible, the attitudes of my employers were welcoming and accepting. They made the adaptions necessary for me, and, all these years later, I'm still happily employed there.

4) My doctor has no prejudice regarding who I am. I know he values my health care. I know he values my quality of life. I know he values me, like he values every patient he serves. I have never been talked down to, rather I've been involved in decisions about my health care. I have never had a sense from him that he wants anything less than the best for me. My disability is discussed when it needs to be discussed, which is a lot less often than you might imagine.

I believe that I am lucky. Very lucky.

But I don't want to survive on luck. I want a set of guarantees that the value of my life will never be measured by the bigotry of another. Another with power. I want a set of guarantees that assures me and assures every disabled person that we will not be pushed into depression, by bigotry by health care professionals, by bias from politicians, by unnecessary barriers to a full life, as the first step towards the final solution.

My death should never be your solution.

My life, as a citizen, should be your only, and primary, concern.


Shaya said...

Hi Dave, I love your blog and have been reading for about 6 months now. This post is really powerful and I found myself nodding along to all of it.

I'm trying to square the images of people who feel like they're at the end of their life and talk with their doctor about assisted suicide with what you're describing. I totally agree with you that doctors are not free from bias and are frequently ableist. I guess what I don't fully understand is how that prejudice would end up leading to wrongful deaths?
Is it just doctors pressuring disabled people to use the assisted suicide option?

Anonymous said...

Bravo, Dave. Thanks for sharing.


Colleen said...

Dear Dave:

Well said!


Kris S. said...

Well said! Thanks to the link you provided on FB, I will be sharing.

You rock, Dave.

Tam said...

Wow Dave, such a powerful piece of writing. I hipe that those who shoukd have heard it at least get the opportunity to read it. This is such an important message to get out there, and you have done it so well. This is a post I will be "favouriting" to come back to in the future.

wheeliecrone said...


B. said...

Yup. Thanks, Dave.

Jennifer Ruth Jackson said...

I have the same fears.
I flat-out refuse to say whether or not I'm an organ donor in front of any medical professional in case something happens and they find yet another reason it's "better" for me to die... so someone "more deserving" can live. I'm not saying I'm against donation. I'm not, but I choose life until all avenues are exhausted.

Mary said...

Hi Shaya

I can't answer for Dave but I can answer for myself.

I've been disabled for about 10 years now. I enjoy being alive.

The prejudice and bias and bigotry, the experience of being a second-class citizen, is depressing. It really is.

There are times - it's not nice to talk about them - when due to that immersion, it becomes hard to focus on the positives and the thoughts start to creep in. If pain and prejudice is all I have to look forward to for the next few decades, do I really want to carry on living? Am I really a net burden instead of a net contributor, and if so, am I a less worthy person because of it?

Like Dave, I'm lucky and I'm well-supported. When those thoughts creep in, people remind me of my value and I perk up again. But depression is a risk and there have been close brushes over the years.

I want to know that if I go to my doctor with that depression, those damaging thoughts, that low-self-opinion, that my doctor will try to *help*. I want her to refer me for counselling, maybe prescribe anti-depressants, give me a number for a crisis hotline, ask questions to establish whether these feelings are related to abuse at home, etc, just as she would for a non-disabled person.

The idea that one day, rather than helping me, she might say "well, you're right, your life is terrible and you're basically a burden, here, have a leaflet about assisted suicide," thus validating and reinforcing my negative thoughts at the time when I am most vulnerable and most prone to making poor decisions, scares the wotsits off me.

Bite Two said...

Shaya, try reading this

youneedacat got hir feeding tube, but only after a campaign of hir allies contacting the hospital to demand it. Sie says sie'd be dead by now without it.

Oh, and there was the young British rugby player who, still in the grieving stage of paralysis, was taken by his parents to commit suicide at a Swiss clinic. The Attorney general decided it wasn't in the public interest to prosecute. Which public's interest?

Dave: as always, well said. Of course, I object to the other extreme, too, the idea that "Mentally ill people's wishes to die are automatically invalid".

Ettina said...

"I guess what I don't fully understand is how that prejudice would end up leading to wrongful deaths?
Is it just doctors pressuring disabled people to use the assisted suicide option?"

That's part of it, but it goes further.
I have heard of doctors putting DNR orders on someone without asking, just assuming they'd (or their parent/caregiver) want it. I have also heard of cases where, even without a DNR order, medical professionals decided not to resuscitate someone because of their disability.

tigrlily said...

Hi Dave: After a long, hectic week and weekend I finally had the time and energy to devote to your blog entry. We missed you in Ottawa, but your words made (and will continue to make) an impact nonetheless.

The best aspect of the event was in giving members of parliament a perspective they hadn't heard before, and your comments represent all the best of the disability rights opposition to assisted suicide and euthanasia. Many MPs said they had just intended to stop for a minute, but remained for the full 90 minutes.

We're hoping the event will help propel people with disabilities into the debate. Your blog will certainly be an important ongoing contribution to that debate on behalf of people with disabilities. Thank you so much for your unique participation in the event.

tigrlily said...

For those who want more information about the issue, please visit Toujours Vivant-Not Dead yet, either on our facebook page or at our website,