Sen. Chantal Petitclerc is in a wheelchair, and from it, she has a perspective her fellow senators don’t. But on June 3 she shared that perspective in an emotional maiden speech opposing Bill C-14, the Liberal government’s assisted dying bill. Petitclerc, who was paralyzed at the age of 12 when a barn door fell on her, was appointed as an independent senator by Prime Minister Justin Trudeau earlier this year. The 46-year-old comes to the Senate after a long and impressive athletic career, boasting 21 Paralympic medals, 14 of them gold, and the title of chef de mission for Canada’s Paralympic team in Rio de Janeiro this summer. A longtime proponent of medically assisted dying, Petitclerc told her peers this bill was not the bill she had been waiting for. Maclean’s sat down with the senator to find out why that was.
Q: You’re fairly new to the Senate, just a couple months, and last week you gave your maiden speech. Describe that experience.
A: It was a very emotional moment for me. To be honest, I did not plan to do it. Last week I was waiting because I am a new senator and also because I come from the sport sector, so my knowledge of the Senate is still growing and evolving and I still feel a little insecure. But, last week as we were in the middle of debate for Bill C-14, medical assistance in dying. It was so intense and everybody was providing such valuable comments and thoughts and debates on the matter, and at one point I realized that myself, being a person in a wheelchair and having a lot of contact with people with disabilities, I thought I had something to say about that. I thought that my voice could bring something to that debate. So this was on the Thursday evening, and I left saying, “You know, I will make a speech and I will speak tomorrow.” So I did not sleep too much that night and I made my first speech the next day.
Q: What is your stance on Bill C-14, as it stands today?
A: My view on Bill C-14 and in fact, my view on medical assistance in dying has always been that we want to be a country that protects everybody and that provides care to everybody that is vulnerable. Excellent care, is what we need to provide. Value, is what we want to provide to everybody, no matter if they are vulnerable or disabled or old, we need to make sure that they are, and their life, is valued and that they feel valued. But, that being said, there will be time when pain is so unbearable that the only option, for very few individuals but there will be individuals, where the last and only option because of unbearable pain, will be to have access to assistance in dying. I’ve always supported this, and this as a right and this as a choice that individuals should be able to make. Knowing that it has to be balanced with us as a country feeling that we provided every other option and that it is the last option that they feel they need to do that for themselves. It is a very, very sensitive topic and debate, but I feel that this is where we are as a country, and it is a very important moment in our history as Canadians.
Q: That concept of unbearable pain is something you brought up in your speech last week. What does unbearable pain mean to you?
A: One of the reasons I decided to do my speech last week is there was a lot of thought and talk on what is unbearable pain; how is it defined. And even some witnesses and people in the Senate going to the extent of saying, “Is there even such thing as saying there is pain that is so unbearable that it is impossible to manage it with all that we have access to in the medical world?” I wanted to say, because I had my accident when I was 12 and it was my perception as a child, I was in a situation where I had broken ribs and they could not fix it and operate on me until the swelling from my broken spine was down. I have very acute memory of this unbearable, daily, and hour-by-hour pain.
It was the first time of my life that I even talked about it, because I don’t like to talk about that; it’s in the past. And everything went so well for me after. But I remember it like it was yesterday. I wanted to say that I know first-hand that, and I know also from people that I met, that there is such pain that it is so intense and if it has no hope of getting better, you know, it is not a life that you wish on people. But then it is their choice, and it is only their choice to decide what is unbearable to them and should they choose to continue this life with this pain or should they choose not to do that, we as a country, I feel, have to respect it. When everything else has been provided to help them. So this is my position on that.
Q: Do you mind sharing that story of what happened to you when you were 12?
A: I had my accident when I was 12 years old. After the accident I was in the hospital for maybe three months, and out of these three months, there was the first 19 days where I lived with what I feel was like torture. Unbearable pain. I had broken bones, broken ribs, they could not repair it until the swelling of my spine was down, and that took 19 days.
For 19 days, even if I was heavily medicated, and really have no memory of much from that period except the pain, and specifically, they had to turn me every hour, just to make sure there was not too much pressure. I will never forget the pain of being turned with broken bones in your body, to the point of, even if I was a little girl, having these memories of staring at the clock, knowing when the time was coming every hour, and just crying because I knew how painful it would be.
And screaming because I was just a girl, right? Screaming when the nurses would come in to turn me and begging for my mom, because you’re so helpless as a kid, and begging for them to stop and for my mom to help me. And knowing that it would come back every hour. To me, it really is something that was unbearable. But I knew that it would stop. I knew that I would get better. Now I feel a life with no pain, and this is amazing. But when we look at Bill C-14 and we hear witnesses and we hear testimony of people who are to the point of having so much pain that they cannot suffer it any longer, I think I have a little glimpse of what that could be.
Q: You’re in a unique position: you are paraplegic, you’re now a senator, you’ve spoken in front of massive groups of people, thousands of people. How has that helped you have a voice on issues like medically assisted dying?
A: I feel as a senator, as a person with disability, I feel a responsibility that when it will come to issues where I have a voice and experience that can help the Senate do our job and do the decision that we need to do, I think it is my duty to use that voice. That being said, I also feel that it is one voice. And I am not here as Chantal Petitclerc, I am here as a senator representing, hopefully, voices in Canada, and voices of people with disability and people that are vulnerable. So this is what I want to accomplish in the Senate and I’m hoping I do it the best I can, while respecting other voices. And other issues as well. I know that for sure being the one person with a disability and having this experience, or it could be also about health and how sport is important, which is a totally other level of things, but that might come also, and I will also have that experience. I think it is the great value of the Senate is having all these expertise and competence from all parts of Canada and all range of expertise, is what can make it such a unique and rich place at the service of Canadians.
Q: Do you have any personal experiences or personal connections to medically assisted dying?
A: I do. Because of where I come from, I suppose, and because being a person with disability, being also a bit of a public person, as a medallist, I was exposed to a lot of different individuals with disability, the great majority of them living fulfilling, exciting, productive lives.
But it is true that when I came into the debate and we were talking about C-14, I could not help thinking about two individuals who have passed, and who had decided to have access to medical assistance in dying. To me it was a great example because they were two individuals, one Canadian and one from Switzerland, and one with disability and one with disease. Both incurable. Both with no hope of getting better. Both with unbearable pain, with no solutions.
So to me, this debate really has a face. It’s about people; it’s about individuals. It’s always been evident to me that we need to respect choices. And that people, no matter how vulnerable they are, we need to protect them for sure, but we also need to respect they have choices and they have the right to make their choices. When they are in a condition to make those choices, of course, I don’t deny that. So those two people that I knew were very bright, very lucid, and ready to make that decision. For me, I have huge respect for that. When I think about C-14, it is important that individuals in the same very, very difficult situation with the same desire would have the right to make those choices.
Q: At the end of your speech last week, you said you hoped Canadians would get access to “the law they deserve.” What does that law look like to you?
A: I said last week that my wish would be that Canadians get the law that is the best for them and that they deserve. To me, this means a law that would not refrain someone with a disability or a disease, in intolerable pain, with no hope to get better, to have access to medical assistance in dying. Because their death was not foreseeable in the future.
That was the one point that I felt did not sit well with me. That being said, I have a huge respect for the senators and the expertise, and what they will bring to the table as amendments, because they are extremely competent and they have this amazing expertise.
I do also have a huge respect and knowledge that we are senators appointed to the Senate and we have to respect this bill that comes from the elected government representing Canadians. So it is that balance of doing our job, trying to make that bill the best that it can be, and I feel everybody is on the same page for that, while respecting our appointed, non-elected role as a senator.
Q: Most people opposed to this bill—and as it stands, you are opposed to it as well— but most people opposed to it, are opposed to medically assisted dying in general. What would you say to them, coming from the perspective that you’re coming from?
A: What I would say to Canadians and individuals who are opposed is that I do respect it and it will always be a choice. It will always be done in the most professional, respectful way, only out of empathy for individuals who see no other options. To me that is so important.
I hope that it should never be done out of valuing the life of someone or not valuing the life of someone or out of not providing the best possible care to someone to make sure that they do not feel the need to have access to a bill like that. But when it does happen, I guess what I want to say to people who are completely opposed to it is you have the right to your choice, but we all have to respect to someone else’s choice who is not the same as yours. It is true for so many things. This is one of them.