No Choice At All

[Jaunty Guitar Music]

Mike: Welcome, everybody. This is Avoiding the Addiction Affliction, brought to you by Westwords Consulting and the Kenosha County Substance Abuse Coalition. I'm Mike McGowan.

Mike: A few months ago, I had the privilege of speaking with our guest today, K. J. Aiello, about mental illness and the stigma around that term.

Mike: K. J. is a Toronto based mentally ill writer whose work includes essays, op eds, and a soon to be released Fall of 2024, non-fiction book titled "The Monster in the Mirror", which explores the intersection of speculative fiction and mental illness. She also authored a brilliant article titled "Who Gets to be Mentally Ill" that we talked about last time, so go back and listen to that.

Mike: Well, as often times happens, since we've last chatted, a couple things have come up. Welcome back, K. J.

K.J.: Thank you. I'm so excited to be here. I was so glad to get your email being invited back. It was a great conversation we had last time.

Mike: Yeah, I loved it. We had a lot of positive response to it. You know, since we last talked, oh, okay.

Mike: I'm just going to go off the news stuff, right? Your country has a law called the medical assistance in dying law. Let's just start there. What is that?

K.J.: So the medical assistance in dying law or the M. A. I. D. Law is legislation that actually allows medical practitioners to provide assistance in dying for folks.

K.J.: And I can't, I don't know the exact language, but basically folks who, who life condition is basically unlivable, their, you know, death is foreseeable, a lot of folks with chronic illnesses that they're going downhill basically, and they want to die with dignity. And this is the whole premise around it is being able to die with dignity.

K.J.: Now that was initially came about because of a case called Carter versus Canada. And I think that was a 2016, the decision I think was in 2016. But from that case, then sprung this whole issue of... it excluded folks with mental illness solely with mental illness. And then from that case, people started, you know, decrying it saying that, well, you're actually removing human rights from folks with mental illness.

K.J.: If you simply, if you exclude just them. Right. And you think about it too. Dying with dignity is, it's enshrined in our constitution in the Canadian Charter of Rights and Freedoms, basically section seven says that we have the right to live. We have life, liberty and security of the person basically we have autonomy over what happens to our own bodies.

K.J.: Right. And the ability to be able to die with dignity should be our choice, which makes sense. If you think of it. Theoretically, on paper, it looks good. However, (laugh) there are a lot of issues.

Mike: Well, and so I know that was tabled once before, but scheduled, right, or what was just passed, scheduled to be enacted in March of 2024.

K.J.: Yeah.

Mike: Somebody whose sole condition is mental illness.

K.J.: Uh huh.

Mike: Will be allowed to access that law, and that includes substance use disorders.

K.J.: Yeah, yeah, exactly. Yeah, so you sent me that article that advice article, actually and I thought the title I think was something about Canada will allow folks with. You know, addictions to be able to access this legislation. And I do think that that is a little bit of a click baity title in that folks with addictions as well, like the addiction substance use disorder, alcohol use disorder is it's in the DSM. So folks living with addiction by extension, you know, by proxy, I think that's the proper term for will be allowed this as well with solely addiction.

K.J.: Now it's been tabled a couple of times this legislation simply because there are so many compounding factors when we think about made legislation for folks simply with only with mental illness.

Mike: You talked about this. You went through your own stuff, right?

K.J.: Uh huh.

Mike: Let's just break it down. How would it be determined who's to determine that you're eligible? Is it the individual? Panel? Doctors? One doctor?

K.J.: Yeah. So I think there's supposed to be two medical health professionals who will do an analysis and assessment of the individual who applies for this.

K.J.: The individual has to be of awareness, self determination. They have to know what they're they're signing up for, basically. And then two mental health professionals will be assessing them and I think that it's a 90 day wait period. And that is also included in the assessment period, so if, you know, the individual who is suffering, if they actually have a, you know, turn of events, or they change their mind, that there is that 90 day grace period.

K.J.: One of the very first issues when you think of that is a 90 day wait period. So my question is, why should somebody who does want to die with dignity, whose sole diagnosis is a mental illness, only have to wait 90 days to access this, when people who actually want to get help have to wait upwards to a year and a half to get a proper psychiatric assessment, let alone start a course of treatment that may or may not work?

Mike: Okay. That's exact... okay you're ahead of me.

K.J.: (laugh)

Mike: That's exactly why I called you back.

K.J.: Yeah.

Mike: That's the part that I don't get is the wait would be shorter to get medical assistance to die than it is to get help.

K.J.: Yeah, yeah, and I see this is one of the reasons I think that this is, first of all, it's such a contentious issue. And secondly, I actually, I personally don't believe it will come into act in March of 2024, because this is will be the 3rd time. It's been tabled, right? There are, if we're going to have a conversation about made for folks with only mental illness, we have to have in tandem a conversation about access to treatment, about a living wage, about all of the other factors that actually go into somebody's mental health condition. Right. We have, you know, folks who are living with intergenerational trauma, who have never received any kind of compensation or reparations.

K.J.: You know, our indigenous folks are basically watching their history being dug up in Canada with, you know, the children, the graves, the mass graves that we're finding. How can we possibly say that M. A. I. D. Should come before folks who are living with that with that intergenerational trauma with that history of trauma.

K.J.: How can we possibly say that yes, M. A. I. D. Is a good idea, which in theory, I actually believe it is a good idea. It is our human right to be able to die with dignity. But how can we have that conversation if we are not also talking about the fact that. Folks with disabilities are living far below a living wage.

K.J.: They are living in poverty. They cannot get gainful employment because of lack of accessibility at work. We're talking about stigma at work there. It's just, I get so worked up about it, Mike. It's just, it feels like such an impossible situation and. You know, if we're talking about, you know, M. A. I. D. For folks with mental illness, we have to have these other conversations at the very same time.

Mike: Well, and it's been argued, right.

K.J.: Yeah.

Mike: That people like the homeless or those with less resources or those who are incarcerated might opt for termination. And then what, you know, what, what does that say about society in general? You know, who's, who's accessing it? Is it euthanasia for those of us who are disadvantaged or?

K.J.: Yeah. That is one of the big questions, and I think it was the, not the Mental Health Commission of Canada, but the Canadian Mental Health Association, I believe, put, sent out a report, and I'm not entirely sure it was them, it was one of our associations here, that basically raised that exact same issue, that would these folks with mental illness or addictions be accessing M. A. I. D. simply because they want help, but they can't get it. Right. Or even if they can get help, treatment's not working. You know, I think it's 40 percent of folks living with unipolar depression, which is major depressive disorder, no treatment works. So they are technically considered treatment resistant.

Mike: Well, no treatment works... yet.

K.J.: Yet.

Mike: I mean, that's one of the questions I was going to ask you is who knows what's around the corner? I think the last time we talked, you were misdiagnosed, undiagnosed for a long time, correct?

K.J.: Yeah. Yeah, that is correct. I have bipolar type two, which means that for folks with bipolar type two, they're misdiagnosed considerably more times than folks with bipolar type one.

K.J.: Because with type one, they usually present to a mental health care facility or the hospital with symptoms of mania. And it's pretty obvious when you see somebody who is having a manic episode or a psychotic episode that they're going to get mental health care treatment. Hopefully, (chuckle) one would hope. But folks with bipolar disorder type two, their primary presentation is actually depression, and it's usually suicidality, which is what happened with me as I went into the ER because I attempted suicide.

K.J.: And so, you know, if you're not actually careful, if you not do your due diligence, if you have a 15 minute psychiatric evaluation, as I did, you know, 20 years ago, then you get diagnosed with unipolar depression. So major depressive disorder, and then you put on the wrong medication that actually makes you worse. Right?

K.J.: So it's not that we don't have the resources or the knowledge of the wherewithal to be able to do this. What we don't have is in my case was the patience. I saw a psychiatrist for 15 minutes. You know, that's that's not acceptable. And, you know, even now, when I was diagnosed properly in 2015 with bipolar disorder, my evaluation was 45 minutes.

K.J.: Now, I had the wherewithal. I had insight and information. I had been doing so much research on bipolar disorder because I suspected that was actually what I had. So I was able to communicate that information to the psychiatrist and it was more of a dialogue rather than, you know, peppering me with questions and then making a decision for me without, you know, my consent or my, my input. Right.

K.J.: So, you know, like, I do think the way we diagnose mental illness is very much, it's like a crapshoot sometimes.

Mike: (laugh)

K.J.: It really is, it's a crapshoot, you know, there is no, you know, biological tests that we can do yet, although we are coming closer to being able to have a biological blood test, that sort of thing.

K.J.: But this also means that to be honest, a lot of our treatments are psychopharmaceuticals are, you know, ECT, which is still used today. And it's actually not invasive at all. It can be very helpful in psychotherapies. We actually don't know the modality in which they work. We don't know that the physiological impacts that these treatments have. We don't know, because we don't know what is actually causing these on a neurophysiological and a biological level. We don't know what is happening in our bodies and in our brains when somebody has bipolar disorder, we have, you know, some sense, but how can you treat something you don't really know what's causing it. (laugh)

Mike: Well, and then how do you make the decision that this is incurable?

K.J.: Exactly. Exactly. All we have is what we've seen in the past and folks, you know, with my condition, bipolar disorder, the prognosis, if they're treated early enough is usually pretty good. Bipolar disorder type two, you can have some semblance of a normal, you know, quote unquote normal life, but there are still significant limitations to that.

K.J.: Right, and if you don't, the individual doesn't have the resources. I, thankfully, I live in such a privileged position where I do have resources to be able to manage my mental health. I don't have to work a full time job. I am able to take time off or, you know, to cancel or postpone appointments.

Mike: Right.

K.J.: I can do these things without hardly any repercussions.

K.J.: Which, if I wasn't, if I didn't have those resources, that ability in my own personal life, I'm not sure where I would be today.

Mike: Well, you've written that the problem isn't this law. It's the system in which it works, right?

K.J.: Exactly. Exactly. And, you know, I'm not at the decision table here with, with respect to this law.

K.J.: I'm not on, you know, panels and that sort of thing. So I don't know the kind of conversations that are being had by the policymakers, by the psychiatrists, by these, you know, panelists. I don't know the specific conversations and it's quite possible that they are talking about this, but, you know, from my vantage point and from the vantage point of a lot of folks living with disability and yes, mental illness is a disability.

K.J.: And that's another problem is that a lot of times we don't consider it a disability. Is that we are not having these two conversations in tandem. We are not addressing the underlying issues that actually for a lot of folks end up leading to mental illness. You know, if you remove all of the other factors from their lives, if you, you know, give them a living wage, if you give them gainful employment, or at least some sort of an occupation that is meaningful, if you allow them their voice, allow them to be seen, if you, you know, folks, Black, Indigenous, people of colour, if we address systemic oppression and racism as well, how many folks would be struggling?

K.J.: How many folks would be, you know, living with substance use disorder? I mean, I don't know, maybe I'm thinking idyllically here, but I have a feeling it might be a little bit better than our current situation.

Mike: Yeah, you know, in America here we have the ADA, American Disability Act, right? Which requires that public buildings, you know, let's just use one example, have a way to access that building.

Mike: So you build a ramp for those people who need a ramp, right?

K.J.: Mm hmm..

Mike: Well last week we were going to do this conversation and you very nicely just emailed me and said, Can we postpone it? I'm having some mental health issues, which is what you're saying, right? You, you need to have that same freedom for this condition as somebody with a more visible condition also has.

K.J.: Absolutely. And I think we have something very similar here. It's the I see I'm drawing blanks this morning, Mike. It's so gray and crusty that my brain is actually very foggy. (laugh) So I'm losing words.

Mike: Get used to it. This ends in May. I think, right?

K.J.: Call me in May.

Mike: Yeah.

K.J.: We do have similar legislation here.

K.J.: That, you know, air quotes here protects folks living with disability and that should include folks living with mental illness. The problem is, is that a lot of employers don't really know how to address accessibility when it comes to mental illness. And a lot of employers, you know, quite frankly, they don't want to deal with it.

K.J.: They don't want to because folks with mental illness are perceived usually pretty negatively and particularly folks living with substance use disorder.

Mike: Uh huh.

K.J.: Let's be real, like folks with substance use disorder, they really struggle to find employment. So it's, I tend to think that, you know, in the employment world, employers don't want to have to deal with this because it's, it's too difficult to be able to figure out, okay, our employee who, you know, on paper could be a model employee lives with bipolar disorder, she needs to call in, you know, quote unquote, sick quite often, how can we work around that so that she is able to do what she needs to do?

K.J.: And still be mentally well and we can get the work done. Right?

Mike: Right. My other question regarding the substance use disorder is how would you possibly use this law with somebody whose brain and body (laugh) is full of chemicals? I mean, wouldn't you want the chemicals out of the body before you assessed what their condition actually was?

K.J.: Yeah, I agree with that too. I think that, you know, one of the big problems with that is that particularly with alcohol abuse is that a lot of folks actually can't, you know, quit again, quote unquote, quit alcohol because it could be lethal.

Mike: Uh huh.

K.J.: Right. So they need so many medical resources. They need... And I don't know, particularly the drug that's or, you know, series of drugs that are used to be able to help folks who live with alcohol use disorder.

K.J.: But if you're living with substance use disorder, how can you possibly access these resources, particularly in the U. S., where, you know, you don't have free health care? And even here in Canada, our health care, which, you know, is quote unquote is free, we do pay heavy taxes, so it's not technically free.

K.J.: There are so many treatments that are not available, quote unquote free, that are related to mental health care. You know, we can't get therapy is not covered. Most of our prescriptions are not covered, right? If we need long term substance use health care, if we need to go into rehab, any kind of treatment facility, you know, part of that is not covered.

K.J.: So if you have somebody living with a mental illness so serious that they are unable to work, and that includes substance use disorder, how are they possibly going to pay for this? How are they possibly going to be able to pay for private health care insurance? It's just, it's baffling! And the thing is that this feeds into a system of oppression, of poverty, of, you know, systemic stigma, right?

K.J.: Because we're not seeing these folks living productive lives. So then we assume that they can't. Which is not the case. It's the system in which we work that has failed these folks. I get really worked up about this, Mike, as you can tell. (laugh)

Mike: Well, I used to, my job before I started doing prevention was to run a hospital and here we changed the laws so that we put people in charge the money people in charge.

Mike: We used to, in Wisconsin, where I live, we used to mandate the amount you could charge for a 30 day treatment stay. And then we took that out of the equation and immediately companies decided to charge more and then insurance companies said, we're not covering it. So all of those places that used to be open for treatment closed, mine included.

Mike: And, and so that doesn't mean that people stop drinking or using drugs or having mental health issues. In fact, we're seeing more of that now, right? Right. We're both doing thumbs up for those of you listening. And it's and where do you go for help? That's part of it. That's part of it.

K.J.: Yeah, exactly.

K.J.: And folks, particularly with substance use disorder are stigmatized even more in the health care system than anybody else. When I was doing research for my book, I actually came across the, I can't remember this. specific statistics, but folks with substance use disorder are stigmatized so egregiously in the healthcare system that they actually cannot receive the healthcare for their substance use disorder than they need.

K.J.: So it's, it's an Ouroboros, right? This is just, and we're in destruction zone right now, particularly, you know, coming out of a pandemic.

Mike: Yeah, where usage went up and depression went up. I did a conversation yesterday where we lead. We're close to you, right? We're just across the lake from you.

Mike: And we have a state where we have more women drinking excessively than any other state in the country. And it almost exactly mirrors the depression statistics for that same demographic. So, (chuckle) what a shock that a drug would add to your depression.

K.J.: Big shock! (laugh)

Mike: And that's, well, but that's part of it with the panel. You know, there's a, I can't wait to see how this turns out.

Mike: Because there's so many different branches on this tree that I'd love to just ask a bunch of questions and see who can answer them.

K.J.: Yeah, yeah, absolutely. I know that there's a couple of folks in my wheelhouse who are definitely keeping their eye on this whole legislation. I have my doubts that it actually will come into an action in March of 2024.

K.J.: It was supposed to be this past March, and then it was supposed to be in, I think, June of 2020 or 2021. I can't remember, but, you know, which, which tells me that, you know, people are recognizing that there's other issues that they just feel too big to address. They're just so big. How can you move a leviathan that is the size of our systemic inequities to be able to allow folks with mental illness and substance use disorder, the access to resources they need in order to be able to live fulfilling lives so that they won't actually be considering M. A. I. D.

Mike: Yeah. Well, let's talk for a minute, if you don't mind about your own diagnosis, if you, and how can you do that? Or is it okay to ask you how you're being treated?

K.J.: Yeah, absolutely. I am. So I think my treatment I'm on Lamotrigine. I have tried other medications, but I just find that they don't. The side effects are too much for me.

K.J.: I do have a therapist, which sometimes I can't see her because I have to pay for it out of pocket and therapy is really expensive. It's mostly my lifestyle that actually helps me. I have a partner who's incredibly compassionate his brother lives with bipolar type one, he's autistic and he has a significant intellectual disability.

K.J.: So my husband looks after him. My husband knows what this looks like. And I live in, you know, a safe home, a safe environment with also friends who understand. And I'm also, I said to you last time, I'm at the point where if somebody wants to judge me because I'm having a mental health challenge or even a mental health crisis, because I can't guarantee I won't have a crisis in the future. If somebody wants to judge me for that, then that's on them.

K.J.: You know, read the room. We're past that now. (laugh) Pardon my bitterness there. I don't know if it's bitterness, but it's more of cynicism. I'm cynical now. After 20 years of this, I feel a little cynical, but, you know, it's before, just before the pandemic, during the pandemic as well was very difficult for my mental health.

K.J.: And I actually learned about the M. A. I. D. Legislation. It was the middle of the night when I was actually contemplating. I wasn't, I didn't have an action for suicide, but I had been seriously starting to put a bit of a plan together. Then I was doing some Googling, and I came across M. A. I. D. And then that just, you know, I went down a rabbit hole, which probably distracted me from my feelings of suicidality into action about this legislation that I had no idea anything about. (laugh)

Mike: (laugh)

K.J.: I mean, I laugh, but it's. Such a, it's, it's so strange sometimes how things work like that.

Mike: The government saved your life.

K.J.: Don't talk about that though. (laugh) It's the government's failings that saved my life. (laugh)

Mike: There you go.

K.J.: There you go. Yeah.

Mike: So you don't think that it, let me wrap this up for you. You don't think that you think it will be tabled again, but how do you think it will be tabled?

Mike: Who will be the voice that is listened to the most?

K.J.: Yeah, that's a really tough question. I do find that folks with lived experience are being listened to more now, but at the end of... And they're being invited to the decision table, which I really appreciate. But at the end of the day, it is going to be you know, the psychiatrists, the policy makers, the analysts who don't have lived experience. They're basically taking this information, taking these stories, these narratives from folks with lived experience, and they're making their objective analytical decisions. And that's, you know, therein also lies the problem with our diagnostic tools.

K.J.: The DSM is extremely, it's categorical, it's, it basically, do you meet a threshold or do you not? Well, what if you're just below the threshold? How can you possibly be diagnosed and then treated appropriately? And this is the same thing. And it, I try not to let my feelings get in the way of that, but I tend to become a little bit cynical about that.

K.J.: And I do believe that there are still some sentiments that folks with mental illness, particularly folks with serious mental illness and substance use disorder are not taken seriously. There, you know, there is gaslighting in the system, so I don't know what it's going to look like, but I definitely hope that they're going to be speaking to more folks with lived experience and our voices are going to be heard more by the public.

Mike: Well, we'll send this podcast right to Parliament.

K.J.: (laugh) Please do. Send it to my MP and MPP and everybody else I know. (laugh)

Mike: Well, when K. J.'s book comes out, we're, we're going to have her back on, if not before that, just to talk about it when I can read it. And just thanks a lot for having this discussion with us today, because when I read the article, I'm like, I got a million questions and I know who to ask.

K.J.: (laugh) I love it. Thank you. I appreciate it, Mike. And again, it's always such a pleasure and thank you for doing all the hard work that you do. It's great to see this. It really is.

Mike: Yeah. Thanks a bunch. And you know, there's links to K. J.'s work and hey connect with them. The articles and blogs and writings are spectacular.

Mike: So they're listed at the end of this website and listen in next time and until next time stay safe and get involved.