I am writing to ask you to give sober second thought to Bill C-7 and specifically, I request that you reject it outright.
I know you have read many words. I hope you will take the time to read mine.
I am disabled and, like too many disabled people, my story of becoming disabled includes descending into poverty, experiences of discrimination and in some cases abuse and worse.
In many ways I am alive today as much in spite of as because of my experiences with healthcare professionals.
In 2009, before MAiD was passed, I was in a hospital in downtown Vancouver. It had taken years to finally receive the correct diagnosis of a rare autoimmune disease. My experience pre-diagnosis took a huge toll on me as I was often dismissed either with a shrug or suspicion. It was oddly comforting when the biopsy came back positive. Would I now finally receive the care I was being denied?
I can’t quite explain the unique terror of living in Canada’s third largest city and feeling that I might very well die a preventable death due to inability to access treatment because those equipped, educated and charged with the ability to do so, simply refused to listen or investigate. I love science. I studied science. One of the hallmarks of a scientific mind in my opinion is curiosity and attempt to minimize and exclude your own preconceived notions – to resist impulse to assume. I saw none of those qualities in the people I sought medical care from. Instead I encountered sexist ideas about women being ’emotional’ or overly anxious.
In an attempt to manage my shortness of breath I was prescribed large doses of corticosteroids. When I went from a slender woman who ran 10K/day to fat – or, in their words, morbidly obese. I saw a special contempt and disdain towards me emerge. Nurses who would once ask me where I bought my shoes would instead make comments about my weight. They were not kind comments. They had nothing to do with science or my health. Each encounter left me feeling less human.
But none of that compared to when I became alone and poor.
I want to tell you about the day a healthcare professional, (HCP), came to my room and told me she had heard the man I lived with was leaving me. It had just happened. Over the telephone I found out that the man I had been with for years had decided he did not want a disabled woman in his life. It was time for him to move on. This would also mean I would lose my home. I had been working contract work and when I became ill the savings soon disappeared. We had lived together and split the rent and expenses. I was denied disability benefits because in the eyes of the government we were a couple and his income was too high. Eventually the bank closed my bank account. All my work friends were gone. I had nothing and just found out I was homeless while lying in a hospital bed seriously ill – dying from what I would later find out was a result not of my condition but the toxic effects of certain medications which had been improperly managed by previous physicians.
On this day the healthcare professional sat beside me and patted my arm. She offered me tissue as I was crying. She told me I must be very tired. She said she was very sorry this had happened to me. She said I deserved to rest. On her lap was a clipboard. She asked me to sign the paper on it. I could see the text and realized it was a DNR. I told her I had come here for help. I told her I wanted to live. She pulled back. Her professionally trained voice of sympathy turned to her own personal voice of annoyance and eventually this escalated to indignation when she realized I could not be coerced into compliance. “I don’t even understand why you would want to go on living! Look at you!” I asked her to leave my room.
In the following days I managed to convince one rheumatologist to invest his energy in saving me. I told him that everyone keeps patching me up just enough to make it out of the hospital parking lot without dying instead of actually doing what is necessary to allow me to live. He and I made an agreement that I would do whatever he told me to and in exchange he would fight to keep me in hospital as long as was needed (which is not the same as until they need the bed). But others were angry at me for my lack of compliance – which in a hospital setting can have consequences for the patient not unlike those of failing to comply with police orders.
I was frightened and I was alone. The hospital was now and forever a place where I could not even assume indifference to my life being the biggest concern. Instead, I had to acknowledge that some of the people I required to save my life wished for me to end it.
In spite of all that a rather amazing thing happened. After being unable to move my legs months of physiotherapy resulted in me standing and taking steps inside the parallel bars. Everyone was shocked. This was not an outcome anyone expected. I was hospital famous. They did surgery on my feet since those would now be used for walking, or so we thought. The rest is a long story but the short version is that because of changes to how my provincial government funded rehabilitative medicine I, who did not have a spinal cord injury but instead had a disease that is most common in women, was denied the physiotherapy and support I required. Without ongoing physiotherapy and funding for the right equipment my progress halted. Then when contractures started to develop I was denied therapy again and the end result is that I no longer stand or walk because my legs are now bent and cemented in place at ninety degree angles. After months of pleading my case to a variety of physicians and many attempts on their part to have me re-assessed I was finally seen by a specialist who, with great pain in his voice, said it was simply too late. They could have helped me but it was too late now. He said sometimes he wondered why he went to medical school since people with business degrees were the ones who made decisions about patient treatment and care.
I have accepted all this. I am a proud disabled woman. I know that Randall Garrison has suggested that you should not put weight on these words because I did not choose to add dealing with a self-governing body to my list of battles in that moment. However this is all documented in emails and in my medical charts.
I know that you have already heard a great deal of testimony. I do wonder how much of it has been from people who face unique levels of risk as a result of multiple marginalization and the compounding and intersecting barriers those create.
As you know ableism is both individual acts of discrimination and structural oppression. We have all been raised within an ableist society and as a result acts of ableism occur without any intention to discriminate. It has been normalized. Indeed, ableism has historically and currently been supported by bias within all professions but most markedly so within medicine. It is entirely possible that the healthcare professional urging me to die did so out of a misguided sense of empathy. I think that is actually a far more frightening scenario to consider. I assure you though that when I appealed for more healthcare or support I was often informed that I was not the best use of public money and that I was selfish for not recognizing how many “healthy” people could be helped with the money wasted on me.
When it was time to discharge me the suggestion was that I move to Long Term Care. When I refused to accept that I was told there were no subsidized wheelchair adapted apartments available and I would be discharged to a shelter. When I threatened to contact the media an apartment which other wheelchair users had rejected on grounds that it was not functionally accessible was provided as my one and only option. I remain in it to this day.
The relaxed MAiD requirements enabled by Bill C7 would certainly not encourage less cost/benefit assessment of disabled people’s lives or apply more political pressure for provincial governments to expand services and fund the comprehensive healthcare and services that disabled people with chronic illness require. In fact, it is logical to deduce Bill C7 would do the opposite and worsen the already sparse services that exist and embolden impulses to justify the lack of what is needed specifically and uniquely to disabled people to live with dignity.
While ableism is often unintentional, efforts to combat it must not be. The intention must not be to avoid ableism but rather to be actively anti-ableist. I am quite sympathetic to the task senators currently face with this legislation. Whenever I have worked on policies of a much less significant nature, I have often thought of myself as a gardener trying to remove a particularly pernicious and formidable weed whose roots are tangled into every other thing growing in the earth. Bill C7 gives the weed of ableism nourishment instead of depriving it. By giving “choice” to some people who already have more choices and by removing safeguards and failing to ensure that disabled people are provided with what is necessary to live, Bill C7 will kill some of the seeds of inclusion we’ve managed to plant and undo so much of the good work that gardeners of Canada have done thus far to rid us of this noxious weed.
I know that Bill C7 must be stopped because I know passage of this bill will result in preventable deaths of disabled people. I know this because I know those already happen. I know they already happen because I was almost one of them.
Please, let’s start again anew with genuine consultation and sincere effort to involve and prioritize those most at risk.