[00:00:00] Aaron Goodman: Before we begin, please note that this episode discusses medical assistance in dying, MAiD, suicide, disability, chronic illness, and end-of-life decision-making. Some listeners may find these topics difficult or distressing. If you're struggling, feeling overwhelmed, or worried about yourself or someone else, support is available.

[00:00:19] In the US, call or text 988, the Suicide & Crisis Lifeline, available twenty-four hours a day, seven days a week, and 988 in Canada, the Suicide Crisis Helpline, available twenty-four hours a day, seven days a week. If you're listening outside the US and Canada, please contact your local crisis line, emergency service, or a trusted healthcare professional.

[00:00:43] Support services vary by country, but help is available in many places. If you or someone else is in immediate danger, please call your local emergency number right away. Now, on to the episode. What can the debate around medical assistance in dying teach us [00:01:00] about disability, healthcare, housing, and Multiple Chemical Sensitivity?

[00:01:06] This episode features two conversations. The first is with Professor Heidi Janz, a disability ethicist, writer, and assistant adjunct professor at the John Dossettor Health Ethics Center at the University of Alberta in Canada. The second is with a Toronto woman living with severe MCS who was friends with Sophia.

[00:01:32] Sophia was a fifty-one-year-old Toronto woman living with severe MCS who received medical assistance in dying in 2022 after years of being unable to secure housing that would not worsen her illness. Sophia's case attracted international attention and raised difficult questions about disability rights, housing, healthcare access, and the choices available to people [00:02:00] living with chronic illness.

[00:02:02] Medical assistance in dying or MAiD became legal in Canada in 2016. Since then, eligibility has expanded significantly, and Canada now has one of the world's most permissive assisted dying frameworks. Similar laws exist in a growing number of countries, including the Netherlands, Belgium, Luxembourg, Spain, New Zealand, and parts of Australia, while other countries continue to debate whether assisted dying should be legalized or expanded.

[00:02:34] Professor Janz was in contact with Sophia during the final years of her life after Sophia asked her to help raise awareness about her situation, assist in finding suitable housing, and keep people informed about her decision to pursue MAiD. For nearly two decades, Professor Janz has studied disability ethics, ableism in healthcare, and the experiences [00:03:00] of disabled people within healthcare systems.

[00:03:03] Her work examines how assumptions about disability can shape public policy, clinical practice, and conversations about quality of life. Together, we discuss how Canada's MAiD laws have evolved, why many disability advocates have raised concerns about their expansion, and what Sophia's story may reveal about gaps in housing, healthcare, and disability supports.

[00:03:33] We explore the barriers people with MCS face in finding safe housing, accessing healthcare, and maintaining their health in environments that may worsen with their symptoms. We also discuss broader questions about disability rights, autonomy, dignity, and what meaningful choice looks like when people cannot access the supports they need to live.

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[00:04:22] To learn more, follow The Chemical Sensitivity Podcast on YouTube, Facebook, X, Instagram, Blue Sky, and TikTok, and you can reach me at aaron@chemicalsensitivitypodcast.org. 

Thanks for listening. Welcome, Professor Janz. Thank you so much for joining me.

[00:04:42] Professor Janz: Thank you for having me. 

Aaron Goodman: You know, obviously this is, um, a sensitive conversation, and I wanted to invite you perhaps, is there anything you'd like to say to listeners before we get going?

[00:04:58] Professor Janz: Um, [00:05:00] just the topics we're gonna discuss today include MAiD and, and suicide. And so

[00:05:21] If you need, uh, three You need help with your mental health Because of Because of

[00:05:36] Because of anything we're gonna discuss, I urge you to all

[00:05:44] To call the mental health line.

Aaron Goodman: Thank you so much, and I will share that number in the show notes for listeners

[00:05:54] Professor Janz, not all listeners will be familiar with medical [00:06:00] assistance in dying. Many listeners are in Canada, and many listeners are in, in the United States and in other countries. And I wonder if you'd like to say maybe one or two things about MAiD.

[00:06:17] Professor Janz: So MAiD was first legalized in Canada in- In 2014 ... in 2014. But- For people- For people-

[00:06:35] whose deaths were reasonably foreseeable

[00:06:47] whose deaths were reasonably foreseeable. In 2020. Just a minute. Just a minute. Was expanded. Was expanded. To include people with [00:07:00] disabilities. To include people with disabilities. And any illnesses- And any illnesses- Whose death was not foreseeable ... whose death was not foreseeable.

[00:07:18] Full disclosure. Full disclosure. I'm

[00:07:24] a disability rights- For the disclosure, I'm a disability rights activist And

[00:07:36] I've been thus for most of my adult life ... I've been thus for most of my adult life.

[00:07:48] And the position of the majority of disability rights activists, until people with disabilities have free choice in where, [00:08:00] with whom, and how they live, the so-called choice to die can't be considered a free choice.

[00:08:21] So that's very much where I come from.

Aaron Goodman: All right. Thank you. You've written about ableism in healthcare, and I want to know how can assumptions about disability and chronic illness shape the way healthcare providers think about quality of life and end of life decisions?

[00:08:45] Professor Janz: A, well, a primary characteristic of medical ableism is the assumption that having a disability automatically meant that the person has a low quality of life or [00:09:00] unhappy with their life No, it's the news group

[00:09:11] Treatment not being o- So this can lead to treatment not being offered

[00:09:29] Often It

[00:09:33] often leads to Something called Diagnostic overshadowing Di- diagnostic overshadowing, where a new symptom is automatically attributed to, to the existing illness or disability. The

[00:09:58] So when that happens, [00:10:00] things go undiagnosed And- And unexamined Which can lead to bad outcomes for the person. So, which can lead to bad outcomes for the person. 

Aaron Goodman: Yeah. I want to talk more about people with MCS, please. Many people with multiple chemical sensitivity, as you know, struggle to find safe and affordable housing and difficulty accessing healthcare because of exposures to fragrances and cleaning products with pesticides, cigarette smoke, building materials, and more.

[00:10:43] And I wonder if we think about healthcare and governments, what kind of responsibility do they have to ensure that people with MCS don't face these barriers?

[00:10:59] Professor Janz: Under [00:11:00] the UN Convention on the Rights of Persons with Disabilities Under the UN Convention on the Rights Persons with Disability, government have a responsibility to ensure that people with disabilities have access Yeah to the things that they need to live Mm To survive. For people with MCS Mm That includes access to safe housing Yeah And safe environments.

[00:11:40] The problem is even though Canada is a signatory, they tend to ignore those commitments for all disabled, including those with MCS. Yeah So Yeah. It's a very disheartening. So

[00:11:58] it's a[00:12:00] 

[00:12:02] very disheartening situation.

Aaron Goodman: Thank you. Many people with MCS are forced to live in environments that make them sick, and they're not able to access the support they need How does that change the way we think about MAiD? 

Professor Janz: What I mean is, it's very painful with MCS For people with MCS, when they can't access- Safe- Safe- Environments

[00:12:42] environments, they're not able to survive. When someone chooses MAiD- Circumstance Those circumstances, I would argue-

[00:12:57] That, that's [00:13:00] really a choice It's not really a choice- Yeah ... 'cause they aren't being given-

[00:13:07] The opportunity

[00:13:11] The opportunity- To live a dignified life To live a dignified life. Mm-hmm. Professor, you've written about the story of Sophia, a woman with MCS who sought MAiD in Canada after being unable to secure safe housing, and this is a case that received widespread media attention. Are you able to, for, for people who aren't familiar with Sophia's situation, just tell me a little bit of the background information?

[00:13:41] I believe Sophia was 53 when she died.

[00:13:50] And she reached out to me When she reached out to me And, uh- She had spent two years ... um,[00:14:00] 

[00:14:02] writing to various local provi- Writing local, provincial, and federal government ... officials

[00:14:13] officials Explaining her situation. Explaining her situation.

[00:14:20] She lived in a small- She lived in a small apartment. Apartment

[00:14:25] at

[00:14:29] Lake Joseph. But smoke wafting through her ventilation. She had people smoke there, s- and cigarette smoke came through her ventilation. Mm. And then, um, COVID

[00:14:48] exasperated it. And COVID exasperated it. Mm. Now, um,[00:15:00] 

[00:15:01] she lived without both her physical and psychological- Both her physical and psychological ... health

[00:15:11] was rapidly deteriorating Were rapidly deteriorating. The plead for help- Help ... to find a safe environment. She had a network of people, including her doctors, trying to advocate on her behalf. Yeah. But nobody could get anywhere, so she made a decision To end my pain To end her life by MAiD And what was Sophia hoping to achieve with your support?

[00:15:34] Was it to, to find healthy housing, safe housing? Yes. Yes. And

[00:15:44] And in the end she asked if I could continue to tell her story in the hopes that other people wouldn't have to make the decision that she did. What does [00:16:00] Sophia's case reveal about the gaps in our housing, healthcare, and disability support systems?

[00:16:26] The resources that our society provides She's... It shows the gaps. It- It reveals- The, the resources ... the

[00:16:49] resources- That our society ... that our society- Pro- ... provides- Are- Are thoroughly lacking ... lacking. She's one of the fiercest activists I've ever met. The- Advocate that I've ever met. In the end, she just got tired. She kept pleading for help. [00:17:00] And door. She had door after door slam in her face. So in the end, she, quote, unquote, "chose MAiD," but- She

[00:17:14] had nothing to fight with She didn't have anything to fight with anymore. And before she died, she sent me a letter thanking me- Thanking ... for my efforts to try and save her. And I've kept the letter and it's taped on the wall beside my desk to remind me-

[00:17:34] Exactly what's at stake ... exactly what's at stake in this work. 

Aaron Goodman: You have expressed concern that MAiD is expanding in a society where disabled people still struggle to access housing, healthcare, and adequate supports. Do you see this as an urgent issue, particularly for [00:18:00] people with MCS?

[00:18:05] Professor Janz: Oh, absolutely. Oh,

[00:18:09] absolutely. If anything-

[00:18:22] If anything ... the supp- supports are constantly being clawed back. Supports are constantly being clawed back. And in the case of MCS

[00:18:36] I understand that- As I understand it ... many people still

[00:18:52] have trouble convincing doctors that it's a real thing They still have trouble convincing doctors that it's a real thing Despite- Despite ... all the medical [00:19:00] evidence there is Despite all the medical evidence there is. So it's absolutely an urgent issue. Hm. Professor, when people who do not have MCS or may not be familiar with the condition read stories like the story about Sophia and the very critical situation she was facing, that letter to make the, quote-unquote, "choice" to off her mate, what do you think they're missing?

[00:19:28] Aaron Goodman: What do you think the general public should know about the situation many people with MCS are facing?

[00:19:47] Professor Janz: Even I, before I met you, or I- Even before I got to know Sophia ... even I didn't really Even I didn't really Have Have [00:20:00] Understanding An understanding of how totally MCS can impact a person's life. Yeah. And it was only through Sophia that I could understand. Begin to understand. Mm.

[00:20:27] Well, if that was true for me, I can imagine. Mm-hmm. I think that the average Canadian thinks this is something that can be handled like wearing a mask or buying more fans and things of that nature.[00:21:00] 

[00:21:01] Somehow the public needs to be more educated.

[00:21:09] Yes But having said that I want to make it clear the burden of educating the public should not just fall on people with MCS. Medical people. Government have a role in this. 

Aaron Goodman: Yes. Professor, many countries, including the United Kingdom, are currently debating whether to introduce MAiD. And I wonder if you have any thoughts about decisions they will make in light of what you've shared about people with MCS having to face often very difficult choices?

[00:21:58] Professor Janz: I go back to my earlier [00:22:00] statement Mm-hmm Unless and until all people with disabilities, including those with MCS-

[00:22:18] Have access to safe, affordable housing ... have access to safe, affordable housing and the related supports they need. Legalizing MAiD- amounted to- amounts to- a eugenics program ... a eugenics program. Mm-hmm. I understand that's strong language, but I believe it's accurate language. 

Aaron Goodman: Professor, I wonder what the counterargument would be.

[00:22:50] I'm sure you've thought about it, and would you like to share what you think it is and what your thoughts may be on that?

Professor Janz: The counterargument, I'm gonna generalize. Mm. [00:23:00] It's all about autonomy, and it boils down to it's my body, it's my choice. The major weakness of the argument is, well, two things. First of all, it only looks at this notion of autonomy,

[00:23:23] quote, unquote- "I'm autonomy." I'm autonomy. Without considering- Without considering all the factors- that impacts a person's autonomy ... that impacts a person's autonomy. Going back to Sophia. If she could have made an autonomous choice

[00:23:53] to live in a safe environment, if that was made [00:24:00] possible for her, I highly doubt

[00:24:10] she would have chosen MAiD. 

[00:24:15] The second thing- The

[00:24:19] second thing- the autonomy argument- the autonomy argument- fails to consider- fails to consider how one person's autonomy impacts the rest of society.

[00:24:40] And there's always an impact

[00:24:47] No person is an island No person is an island.

Aaron Goodman: [00:24:52] As we wrap up this conversation, it seems like the healthcare provider, physicians, clinicians have a lot of responsibility [00:25:00] in differentiating what is the cause of illness. Is it the illness, or is it the exposure to chemicals, fragrance that could be associated with housing? Often they're not able or willing to make that distinction.

[00:25:14] What do you think about that, Professor? 

Professor Janz: That is discriminatory. I think that's discriminatory. Yeah. Especially- In this- In this era of MAiD.

[00:25:32] Clinicians-

[00:25:41] Clinicians- Have an ethical duty Have an ethical duty, clinicians To work harder To work harder to properly diagnose those factors. 

Aaron Goodman: Would you like to share anything with listeners who may be in a similar situation to Sophia, facing [00:26:00] challenging housing, exposure to chemicals, and may be considering MAiD?

[00:26:10] Professor Janz: I understand I understand your despair. I'm not in that exact situation, but I live in Alberta ... people with

[00:26:20] disabilities where people with disabilities are currently facing an existential threat

[00:26:32] To our income being cut To our income being cut. It's all focused- And it's all being focused on a work- Fair ... fair program. I don't know- It's- ... what it's like to be living with MCS

[00:26:53] I do know what it's like to have to fight for your survival. I do know what it's like to have to fight for your [00:27:00] survival.

[00:27:03] Please keep fighting. Please keep fighting. Because that's our only hope of having anything change.

[00:27:18] Aaron Goodman: Thanks for listening to The Chemical Sensitivity Podcast. Here's my conversation with a woman in Toronto who lives with severe MCS. She reflects on her friendship with Sophia, a woman with MCS who had MAiD at age 51 in 2022. Thanks for joining me, and would you like to share anything about yourself for listeners?

[00:27:41] Toronto woman with MCS: Yes, I'd like to say that I, as a person that has lived with debilitating multiple chemical sensitivity for a couple of decades, it is very challenging living in a world that is scent-obsessed [00:28:00] It has become more challenging over the years, um, as fragrance products become more commonplace. Yeah. I would say that it is particularly challenging for individuals needing to find housing

[00:28:25] You know, dealing with, uh, a combination of having enough financial stability to find anything, substandard housing, food insecurity, all of the things that go with people that have disability, particularly if you're single, and, and then this illness not being understood. How has living with MCS shaped your views on medical assistance and dying and MAiD?[00:29:00] 

[00:29:02] Well, I have to say that Nobody would choose to use MAiD if they could find safe housing. But there is no protection that exists for people that have this illness. There's a lack of an appro-appropriate legal forum, so people with MCS really can't access any justice. The tribunals are structured in such a way that it takes years to even have whatever our issues are, our struggles go through the proper channels.

[00:29:46] And so that delays Being able to effectively be protected in building structures[00:30:00] 

[00:30:01] Most homes

[00:30:05] Just simply don't meet the needs of people with MCS, particularly if people end up having to be in a multi-unit building. Fragrances and cigarette smoke, plugins and the like infiltrate to the units, and it, it's beyond challenging for anybody having to live in this situation. Imagine a life where you just cannot escape.

[00:30:35] You can't have any safe access when you're outdoors trying to go into buildings, and then you go home and again, you are bombarded with chemicals and fragrances that are making you very sick. Are these issues that you've had to live with personally? I... It's not as bad where I am now, but I did live [00:31:00] in a building where I was on the main floor, so there was apartment above and below, and I could smell everything from both of those units.

[00:31:10] Even I could tell the difference when the person below was using their shampoo or their soap. Fragrance transferred that much, and I know I have friends with multiple chemical sensitivity that dealt with it for years trying to get help with changing their living situation because they were living in substandard housing, and they were not able to afford to move out of that building, and trying to make a building like that safe is beyond challenging.

[00:31:49] Aaron Goodman: To what extent do you believe requests for medical assistance in dying among people with MCS are driven by the condition itself versus [00:32:00] barriers such as unsafe housing, financial insecurity, limited healthcare access, and a lack of accommodation? 

Toronto woman with MCS: It's sort of hard to separate the two because if people could have the housing that's needed, an understanding of how to accommodate people with this illness, then, and there was actually safe housing, of course, people would choose To continue living.

[00:32:32] But when people are forced into situations where they get no relief, there is no recourse for, you know, trying to make things better. They've tried for a number of years to have a better living condition to no avail, then eventually, you know, hope is [00:33:00] lost, and at that point, people may seek MAiD. Again, as I say, not because they choose to, but really because their life is such misery that they feel that there is no other option.

[00:33:18] Aaron Goodman: In difficult-- In times when you were in different housing, did you consider MAiD for yourself? 

Toronto woman with MCS: No, I've never considered it. But at this point in my life, I'm in my seventies, I would consider it, not that I want to again, but if I had to go into assisted living, there is no place that exists that would be safe for individuals that have this illness.

[00:33:49] So the idea of just being in my own room and never able to escape fragrance on workers coming in, scented laundry [00:34:00] products, a lot of these places have scent in the venting systems, scented cleaning products. It just would not be an option for the level of suffering that I would have to endure. I just wouldn't-- I wouldn't even consider it.

[00:34:16] We desperately need to be understood and have building structures that we can live in without being ill. 

Aaron Goodman: Have you known people who have opted for MAiD, people with MCS? 

Toronto woman with MCS: Yes. I, I knew somebody personally, and that person lived in a substandard multi-unit building, and she tried for a number of years To have her unit made safe.

[00:34:56] There was a scent coming in. [00:35:00] It was such a leaky building, so she suffered daily from, from all kinds of fragrance contamination infiltrating her unit. She sought legal help, and at some point they did try to seal her building. Ended up making things worse because the person doing the work really wasn't qualified to understand the way the air movement was working in the building, and after having it go worse for her after this effort, she chose MAiD.

[00:35:47] Aaron Goodman: Are you referring to Sophia? 

Toronto woman with MCS: Yes, I am. We had an online friendship for a long time. Do you think many other people are in similar situations? Many. [00:36:00] Too many to count. A lot of people are living out of vans or cars or tents, so if they can't find safe housing, some people are forced into these situations that the average person wouldn't dream of, and again, not because they want to, because there simply isn't anywhere else to go.

[00:36:24] Aaron Goodman: Do you think we will see more people with MCS seeking MAiD in Canada and beyond? 

Toronto woman with MCS: I'm sad to say I really do feel that that is exactly what's going to happen. There is a recognition of this as a disability in many countries around the globe, but it's a very, very difficult legislation to implement.

[00:36:56] So people can recognize it as a disability, but it's [00:37:00] rarely enforced. 

Aaron Goodman: When you think of your future, how do things look for you?

[00:37:09] Toronto woman with MCS: I live alone. I don't have children. If I lose my ability to take care of myself, there is no safe place for me to go. I like to think of myself as somebody who is a hopeful person, and-- but given the circumstances, it's grim. It's hard to be hopeful. 

Aaron Goodman: Are you glad that MAiD is an option? 

Toronto woman with MCS: Absolutely, I am, and not that I feel that it is a substitute for living well.

[00:37:51] It's a sad option, in my opinion, but I am glad that it's there because I, and many others with my illness, [00:38:00] absolutely could not live in buildings where we are being Inundated with fragrances and cleaning chemicals and plugins all day long. It would be absolute torture. Given the two alternatives, I would have to choose MAiD, but that again, shouldn't have to be our choice.

Aaron Goodman: What do you think needs to change?

[00:38:37]Support services or policy changes would make the greatest difference. Even just being believed, you know? It's a very difficult illness to have because if people can't see it, they don't want to believe that it's [00:39:00] real. We have fallen through the cracks, sadly And it's, i-i-every step of the way it's been a fight.

[00:39:17] Aaron Goodman: You’ve been listening to The Chemical Sensitivity Podcast. I'm the host and podcast creator Aaron Goodman. The Chemical Sensitivity Podcast is by and for the MCS community. The podcast is generously supported by the Marilyn Brachman Hoffman Foundation and listeners like you. If you wish to support the podcast, please visit listen.chemicalsensitivitypodcast.org.

[00:39:40] Your support will help us continue making the podcast available and creating greater awareness about MCS. To learn more about The Chemical Sensitivity Podcast, please follow the podcast on YouTube, Facebook, Instagram, BlueSky, and TikTok. And you can reach me at [00:40:00] aaron@chemicalsensitivitypodcast.org. Thanks for listening.

[00:40:02] The Chemical Sensitivity Podcast and its associated website are the work of Aaron Goodman, made possible with funds from the Marilyn Brachman Hoffman Foundation, supporting efforts to educate and inform physicians, scientists, and the public about Multiple Chemical Sensitivity. The content, opinions, findings, statements, and recommendations expressed in this Chemical Sensitivity Podcast and associated website do not necessarily reflect the views and opinions of its sponsors.