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.
(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.