COVID-19 exposes and worsens systemic ableism, advocate says
Heidi Janz is an adjunct professor at the University of Alberta and chair of the Ending-of-life Ethics Committee for the Council of Canadians with Disabilities.
She spoke with Postmedia about how the COVID-19 pandemic has exposed the struggles and discrimination people with disabilities face. She also talked about federal Bill C-7 on medical assistance in dying, which would remove “reasonably foreseeable death” as a requirement.
This interview has been edited for clarity and length.
Q COVID-19 has affected everyone. Can you talk about some of the struggles people with disabilities are facing during the pandemic?
A We face troubles in multiple areas. We're not able to get out into the community as much, which means that we're not able to do basic things like grocery shopping. So this means that we need to either hire somebody to do grocery shopping for us, or order our groceries online and get them delivered, which both mean an increase in costs.
A lot of us who live out in the community are having trouble finding reliable aids or home care because in many places any aide that works in an institution cannot then work in the community.
Because they can't work out in the community without taking a large pay cut, they can only work within the institutions due to COVID-19 because that is what is the most financially responsible thing for them to do. Then there are things like depression, isolation, going to hospital and not being able to have your communication people with you. Those are the things that are emotionally and physically impacting those with disabilities.
Q What about public health measures or public health advice? Were there some holes there, in your opinion?
A Yes, for sure. A lot of the health advice had the assumption that people with disabilities had supports in place. And for some people with disabilities, really the only supports they had were the paid caregivers.
So having that supply of healthcare aides suddenly becomes not an assured thing like in the past. It made living very, very scary and difficult for them.
Q You've said that COVID-19 has brought up ableism. How so? A In a number of ways. For instance, in hospitals, especially early on, people with disabilities weren't allowed to have people come with them, especially if they have a speech problem.
(Like the person helping me right now.) And, in the triage protocols for clinical care, a lot of these protocols listed pre-existing conditions as an exclusion for critical care if hospitals become overwhelmed.
So, because I have disabilities under such protocols, I would not be considered eligible for critical care. I would not get a ventilator if I needed one, I may or I may not end up in ICU. I would be at the bottom of the list.
Now, I have to add, in places like Ontario, that there was such an outcry from the disability community when these protocols came out that they have removed them, but that is not the way it has worked out everywhere else in Canada. This is where ableism comes into play, because it's assumed that people with disabilities automatically have a lower quality of life.
Q How do you feel about that? A Terrified.
Q Now I want to ask you about Bill C-7, which is about medically-assisted dying. What concerns you as someone who has a disability and as an advocate about this law?
A If people with disabilities can't receive enough support to live a decent quality of life you can now “choose” to die. So imagine doing that with any other minority.
If you're Black, and you have a lousy life because of discrimination, we will help you die, but we won't help you live. If you put any other identity into that sentence it appears to be ludicrous.
I think that there would be a huge public outcry if there was any other identity, but because of ableism it's seen as something that is progressive.
Q For people who do think that this law is progressive, what would you say to them?
A The supporters of the bill say it's all about choice, that people should have a choice over how and when they die.
The disability rights' response to that is: until people have a choice in how and where they live, it can never be a free choice on how to die. In fact, out of Ontario in August and September, there were news reports on how people with disabilities were facing cutbacks under disability support and that is compelling them to apply for medical assistance in dying. Because they don't have any hope of surviving, of living.
Q What would you say to those advocates who have been working over the years pushing for the right for medically-assisted deaths say, if they are in a lot of pain or have a terminal illness for example? Do you think they're off-base?
A I think that they've gone way too far in Bill C-7. I think it's totally possible to give those who are at the end of their life more autonomy without endangering vulnerable populations of people who are ill and disabled.
Q What would be the right approach be in your mind?
A I think that the safeguards that were in the first bill need to come back. Because of the Quebec case, we have lost reasonable, foreseeable death as a criteria, but they could still have meaningful safeguards such as the reflection period, and the offering of disability supports.
But on that again, Bill C-7 says that they need to consult and offer disability supports, but it says nothing about if the disabilities supports exist in the first place at the level that person may need.
Q Is there anything else you want to add?
A This summer, close to 100 disability rights organizations and their allies signed an open letter calling on the Trudeau government to rethink Bill C-7 in light of the systemic ableism in Canada that COVID-19 has both exposed and worsened.
This government has an unfortunate history of ignoring disability advocates on this specific topic. They listen to us on other topics, on this topic they have made up their minds before they end up talking to us.