Ableist Constructs of Mental Health (part 2/3)

Featuring Kelly Park, Andy Su, and Alexis Takahashi

How does the medical industrial complex affect how we understand and care for our mental well-being? Last episode, we had an introduction to the medical industrial complex as a system that prioritizes profit over healing. This episode, we invite fellow Free Rad Alexis Takahashi to share how her neurodivergent brother has navigated the medical industrial complex. We reflect on the ways we need to rethink care to address our mental health needs in a way that’s compassionate and community oriented. (content warning: examples of ableism)

May 23, 2016

This is the third episode in our series on “Transforming the Medical Industrial Complex.” Our additional episodes can be found here:

Part I – Profit Over People (MIC 101)
Part III – Transformative Justice and Healing

Audio Transcript:

Andy Su (AS)
Kelly Park (KP)
Alexis Takahashi (AT)

AS: Hello everyone! Welcome to the Free Radicals podcast! My name is Andy and this is our second installment in the Medical Industrial Complex series. Our first podcast, if you’re just joining us now, was an introduction to the medical industrial complex concept using a framework provided by Mia Mingus, and so kind of exploring the ethics of medicine and how that kind of falls a little short on exploring all the systems that affect and Influence the way a doctor treats their patients and also the way that patients can receive care. And so in this second episode in the series, we can explore more about how the medical industrial complex can personally affect people and also the ways that it specifically tries to address mental health and the ways that it plays out. And so again, my name is Andy Su. My pronouns are they/them, he/him. I’m part of the Free Radicals collective and a little background about myself: I’m currently a community organizer for a queer and trans Asian American and Pacific Islander organization, and so I come in with a social justice framework and today we have two guests joining us if you’d like to introduce yourselves, go right ahead.

KP: Hi everyone! My name is Kelly Park. I was also someone who spoke during our last episode. My pronouns are she and her, and I also am a part of the Free Radicals collective. And in my non-spare time I am a full-time medical student, first year.

AT: Hi, this is Alexis, pronouns she and her. I am also part of Free Radicals, and I, for my day job, work at USC as a grant writer.

AS: That’s right, and we’re excited to have Alexis join this episode especially following a recent piece that she had done. But a brief review of our last episode, that was our first entry into the medical industrial complex and we got a lot of feedback around the way that we facilitated it. Two main points: there was a lot of interest and support from people to explore this topic so we’re really excited that we are able to continue it and hopefully do so in conversation with other people. However, people did share that they found issues with language and inaccessibility around the ways that we were talking about social justice and that most people within the medical field don’t have experience in, and hopefully in this podcast we can do more to break down the different terms and also have a broader conversation around them. Because I think a big part of Free Radicals is making accessible, both the science side and the social justice side, so there’s more of a conversation between the two. And so with that, to start us off for this podcast we wanted to talk about Alexis’ piece around her thoughts and experiences with the medical industrial complex relative to her neurodivergent brother. So Alexis could you speak more to the piece that you shared especially for folks who haven’t been able to read it?

AT: Yeah, so I wrote this story. It was a story about my brother and his experiences as someone who is neurodivergent both in the special education track of his school as well as his encounters with the mental health system and psychologists and therapists. As well as my own experience being a witness and someone who was affected by what he was going through in the home and first coming to wanting to pursue neuroscience as sort of trying to find a cure for him as often is sought out for people with mental disabilities in the medical system. And then sort of along the way as I saw the evolution of his experiences realized that disability studies really needed to play a much larger role in the way that we talked about and thought about what he was going through. So what happened with my brother was that my family basically did everything that conventional wisdom says that you’re supposed to do. So we brought him to therapy and he was on whole different psychotropic or psychologically-affecting types of drugs. And none of them really helped him in ways that allowed him to fully participate in the world in the way that he should be able to. So this all culminated this one time where basically his special ed teacher improperly restrained him and sat on his legs for two hours. He came home with bruises and my parents had to pull him out of school. What was interesting is that extremely horrible traumatic event turned into this catalyst for him to be transferred to a boarding school that had this really positive, supportive community for other neurodivergent kids. That support network and that community and that embrace of who he was, and not just to focus on what was “wrong” with him and “defective” with him but all the positive things that he could contribute to his community really helped him transition into this new phase of his life where he has a lot more confidence and he has lots more positive social relationships. My experiences with him personally have vastly improved, and I really saw that all of these things that the medical industrial complex says are going to help people, like medicine and this very individualized therapy, don’t necessarily have the best interest of those neurodivergent people in mind.

AS: Thanks for sharing that. I think for folks who aren’t familiar, could you explain more about neurodiversity, and where that term might come from?

AT: Yeah so I mentioned disability studies earlier which is a social justice framework for thinking about ability. So that could be like physical disabilities or mental disabilities, and it’s this whole idea that it’s not that the person has something intrinsically flawed or wrong or defective about them as is often the way that doctors conceptualize a lot of these disabilities, but rather it’s the social environment that disables people by excluding them and preventing them from having access to things. And so neurodiversity is within the mental disabilities area of disability studies saying that it’s not that people are mentally ill and then other people are not. It’s that there’s a whole diversity of the way that your mind can work, and we really need to embrace that diversity and make space for those people rather than trying to fix them. It’s really rooted in an autism movement to embrace folks who are autistic and try and make more communities around their disability rather than try and “cure” them.

KP: Were a lot of the conversations that your parents had with doctors and psychiatrists and therapists, were they all angled toward providing a cure for him? What was the goal of treatment?

AT: Yeah, I mean I think that more broadly in science there’s definitely a push to find a cure. I don’t think at the level of treatment, since that’s not something that people have found. That’s quite in the discussion, but it’s definitely about how can we medicate him or create some sort of behavioral plan so that he will act like everyone else, rather than thinking about well, what is it about the environment that is set up. I think there’s a lot of discussion about how at school, you sit eight hours a day, and that’s just not going to work for everyone. It’s not about how do we make a system that works for you, it’s how can we make you fit into the system that’s already in place.

KP: Right, a lot of it has to do with convenience and the aesthetics of it all.

AT: I think even beyond that, I think these ideas of productivity are tied to generating profit. I mean, maybe not specifically within the medical system, but just being a functional person is often about being able to perform work.

AS: It’s also to recognize the origins of the educational system, of like compulsory education is from the military and the way that lectures are done is in the way that the military was taught and how that might not really work for everybody.

KP: I was also wondering, we talked a little bit about this before we started recording, how does your brother perceive of his history? What are his attitudes now and what do you think?

AT: Yeah, I definitely sort of blame myself for not having tried to talk to my brother while it was going on, about his experiences and what was happening for him. I think that’s very much commonplace for folks who have these mental disabilities that you sort of will always first reference what the doctor says as the authority on that person’s experience. But I mean as I said, his teacher very obviously physically abused him and so he would refuse to go to school, and that was at the time seen as a manifestation of his mental illness. Whereas looking back on it it seems completely rational that someone who is being abused by their teacher would not want to go to school for that reason. And he describes that period of time especially as he was depressed and he would be tired all the time and he would just lay down on the couch and not move, and these were sort of things that the teachers around him would really incriminate him for–I don’t know if that’s the right word. But their response to that would not be like, “let’s think about why they’re doing this and let’s address that,” but more like “oh, we have to bring you into line.” Even just lying on the couch would cause them to restrain him. I’m not sure how much my parents were totally aware of that, since I think there’s also this lack of belief in people who have mental disabilities in telling their experiences because they’re labeled as “crazy” so their perspectives are kind of dismissed. But hearing his side of the story was really shocking to me, because I had just had this whole narrative of his life, and I had never really even bothered to talk to him about it.

KP: Yeah, I think that’s definitely true in medicine, not just in mental illness but in all kinds of patient experiences. But going back to how medicine tries to talk about mental illness, in my courses on psychiatry we pretty much only hear from professors who are physicians, who are psychiatrists, who are considered experts in their field but they are presumably neuronormative, so not neurodivergent, and it somehow is seen that they have more insight into this experience than their patients who live through that all the time. The only time we ever had actual patients come in to talk about their experiences with schizophrenia, it was very much set up so that it was very tame, there was nothing too shocking about it, and there was definitely an agenda and a narrative that was playing out on stage for us that felt really artificial. And again, so much of it had to do with how do we cultivate this thing that is convenient for people to consume and to absorb, rather than how do we respect perspectives that are often really difficult to understand or inconvenient or unproductive to think about.

AS: Yeah, and I think it plays into what we were talking about in the last episode around ableism and the way that the medical industrial complex creates this idea of healthy and the idea of wellness so that it can situate those that are normal and those that are healthy and those that are not, and then be able to profit off of that difference. But, to what you were saying, disability studies/disability justice, shows that it’s not so much the difference that really exists, but it’s the way that society acts on that difference and separates people based on it, and denies people access to community, access to relationships, and access to their own agency to say that this is what I experience and here’s how I feel and respecting that and acting from that, rather than denying someone what they actually feel and deferring to a medical professional.

KP: I think often the emphasis on individualized healthcare and individualized treatment is the flip side of people not wanting to take responsibility for the impact that society has on people’s health and mental health. So if someone who takes a medication and they’re not cured by it or if their therapy doesn’t work, then it’s their fault rather than the fault of the community that they’re in to support them and nourish who they are.

AT: Yeah, and I think that there are some very obvious benefits that the pharmaceutical industry has from the way that we talk about and treat mental illness. But that also trickles down to the educational level, because I know that my mother when these issues were first starting to come up, she really wanted to use more behavioral approaches like behavioral plans and things like that, and the school would sort of counter that you really need to put him on drugs first and then we can have a conversation about changing the way that we teach and doing these things in the classroom. There was just so much resistance that if he wasn’t medicated then we’re not even going to talk about any type of interventions. Of course even after he was medicated and we tried all of these other things, there was still a lot of obvious problems. I think a lot of that has to do with how special ed actually segregates neurodivergent students, and I just think that fundamentally that every step of trying to treat him sort of marginalized him more.

AS: I think to Kelly’s point around different ways of looking at healing and the other aspects that might affect someone’s own health, there’s a model that I’ve seen shared by, I don’t know who had come up with it but I had heard it first from Amita Swadhin [link] who is a queer South Asian survivor of child sexual assault, and they use they / them pronouns. They talk about this model of understanding violence and trauma in a very comprehensive way that involves a diagram, that I think from our last podcast we learned that diagrams are hard to talk about via podcast but I’ll try my best to explain it. It’s this concept of concentric circles where the individual is in the middle, but all these other circles are outside factors that play into what affects the individual. So the innermost circle is your personal, personal health, personal wellbeing, and personal history. And then outside of that would be your family. And what happens in that concentric circle is everything that happens in the family like family dynamics, family culture, and the patriarchy and how that plays out in there. And then emanating from that is your community circle, and so there are a lot of dynamics that play into how a community might engage with family, engage with trauma, and engage with different senses of healing and addressing violence in that way. And then outside of the community aspect is the institutional. And so this you can think of as within the institution of the medical industry where there’s a way of doing things, there’s a way of addressing health that’s like legislative or in policy and just structurally enforced. Or the institution could be the state, like the nation-state or government authority, and how they want to deal with certain problems. And you would think that that’s kind of it, the way that societal institutions play out, but I think there’s another circle that emanates how from it which is historical trauma or historical perspective, so the concept of historical violence that plays out on a state-wide level so I think the aspect that Amita shares as a South Asian person is the way that the Partition of India [link] affected India and Pakistan because the British essentially demanded that families split up along this partition and created two countries of India and Pakistan, and then that historical trauma affects families in that way. And then I think one more circle emanating beyond that is environmental history. The concept that we as human beings live on this planet that will change and fluctuate outside of our control and how that affects state politics like geopolitics that then affects communities that then affects families that then affects you. Because we see that now that Syrian refugees and that whole crisis in Syria is really a result of climate change [link]. The whole area there drying out, lack of resources, a huge drought, that’s causing all these lack of resources, and the political fighting that’s happening in the Middle East. But to think about it in that way, there’s no money in thinking about those kinds of solutions even though we know that you kind of have to address all those aspects to really find wholesome healing. But how do you address climate change as a doctor? You can’t! That’s the thing, you can’t. But if you were to really think about how do you take care of someone. How do you heal people through this, you have to take in all aspects of it, right?

KP: I think the question that you asked what can a doctor do to prevent climate change, that itself is a manifestation of how individualized our thinking is. Doctors themselves should not be empowered to make big policy changes that affect the environment even if it eventually might help their patients. It’s got to be done through the work of communities through the work of a lot of different people, not just one category of people. Yeah, but your point of how it’s not really profitable, if you had a patient come in for some complaint you’re not going to have the time to look into their – you might ask about family history to see if there’s anything heritable there, but you’re definitely not going to inquire about these broader geopolitical contexts which would be useful to know to best treat your patient, but doctors I know firsthand are not the ones equipped to have that. But I think then we should move out beyond doctors, like we need a whole team of people taking care of each other rather than putting all that responsibility on one profession and one person.

AS: Right, for example, I have a friend of mine who is currently in law school and she has helped in providing pro bono services to low-income immigrant families and one thing she really was surprised about was the lack of trust that low-income folks have for lawyers. As people of color, we recognize that the law is not always there for us and so there’s a general distrust, because if your only experience with lawyers is eviction and law enforcement, you don’t want to see lawyers. And so the way that her clinic builds trust with clients is they work with the medical industry. They work with their doctors. And so the doctors have the trust for these clients, and the doctors will say that this thing that I can’t really treat, but you should probably talk to this lawyer. And so one way this plays out is in domestic violence, and so if a patient keeps coming back to a doctor with broken bones, the doctor can’t fix the situation but can take care of the patient and fix and heal the person and their bones, but if the situation of why they keep coming back harmed is because of a domestic violence dispute the doctor can’t take care of that, but the doctor can refer them to a lawyer who handles like domestic violence and can try to address that.

KP: It’s actually mandatory reporting.

AS: Oh, is it?

KP: But for certain populations.

AT: I think beyond the limitations of how the doctors can help, I think it’s also important to recognize the way that a lot of doctors or members of the medical establishment perpetuate harm, and I think what’s also interesting is since my brother for most of the time this was going on was under 18 and didn’t get to have a say in his treatment or was empowered to say, “I like this doctor, I want to keep seeing them.” And instead he had to take these medications that he didn’t want to take that had all these different types of side effects that he still has to deal with today, even though he doesn’t take medication. Like weight gain, I think there’s this one medication that makes men grow breasts and things like that so, “What rights are we going to allow for children to have in determining their own care?” I think that’s a really difficult question to ask but should be talked about.

KP: Do you think that at the boarding school he ended up at, part of the reason why he felt a lot better was because he was listened to more?

AT: One that I think is totally undervalued in the way that we talk about mental health in the medical industry is the importance of having friends and having a social support system, because my brother throughout this was labeled as different and like a SpEd Head (derogatory term for one who is in the special education system). He basically couldn’t have friends, not that he couldn’t, but it was extremely difficult to. He’s not even in the same classes as most of his peers. I think it was really important having other people his age who understood what he was going through. And two, I think there was such a focus on the ways that he was deficient or wrong whereas in this setting, they really celebrated, “Oh, you do work really hard and you’re good at all these things” and just being able to be seen as a complete person rather than only as this person who is mentally ill was really great for him because people were really recognizing his strengths and that made him be able to lean into that more rather than everyone always talking about his wrong behavior, which I think caused him to lean into that behavior more in some ways.

AS: Yeah, I think isolation is a big tactic: that is how we understand the medical industry and health. And so isolating the problem and the individual actually denies them access to relationships. I think we take relationships for granted as able-bodied people, but within disability justice they think a lot about relationships and how you have to navigate, because relationships are more than just like an individual, “I’m me and you’re you,” but there’s a very strong sense of interdependence that I think folks within disability justice are really thinking about because [in] your relationship to another person you have to be able to communicate your needs and have them be there to support. And I think that is a good framing in general because then it brings us to think about consent and support, and I think Mia Mingus had written a piece long time ago on this “Myth of Independence,” [link] and I thought that was really interesting because what she’s arguing is that nobody is actually independent. There’s this system of interdependence that you currently reside in, whether it’s your family, community, or friends, and to say that you are independent is a lie. And it’s a lie that is propagated to perpetuate in some sense the medical industrial complex, but I haven’t really dug into that. But I think this “Myth of Independence” is really interesting.

KP: I think that falls directly in line with what we’ve been saying about the MIC in that independence and isolation are not that far apart from each other, and if we’re not taking responsibility for each other, then it falls on one person to make all the decisions, even if that one person is not equipped to handle all those decisions.

AT: Another point, I know this is moving away from what we’re talking about now, but that when I think about my brother’s experience and how it really relates the MIC is this idea of professionalization. So all the advice my parents were given were like, get medicated, so like go to a psychiatrist or a psychologist, whereas the things that really helped him was this very community-oriented setting. Just having peers that are like you and understand you, they don’t have to have some professional degree. But I think that professionalization is very profitable. One, the whole course of obtaining that degree: there are certainly institutions that profit from that. And then two, how much people with degrees can profit vs those without degrees. So I think that what I hope to see, or what I think would’ve helped my family is more of just a community-level support. I don’t know how helpful it was for him to sit in a room with someone for sixty minutes once a week as it could be, I feel like, if my family could just even be aware of other families who were going through the same things we were going through so we could have people to talk through the challenges we were facing just like any sort of organizing that happens around shared experience because I think one of the things that was really hard for everyone was just feeling like so alone. And once you go through all the options that are kind of visibly available and those don’t work, it’s like, “What do I do now? I’m alone and I have no other options to turn to.” I think it goes back to what you were saying about disempowering doctors. What are other alternatives?

KP: I can’t help but think that if something like that happened in my own family, it would have been compounded by the fact that my parents didn’t speak English very well and they’re immigrants and if they didn’t have family around either, you really only have this one person that you’re looking to for all the help, and that could be a really vulnerable place to be in.

AT: Especially in terms of mental health, I mean I can only speak about East Asian communities, but I know my dad who’s Japanese had a more difficult time trying to understand what my brother was going through because of the amount of shame that was attached to issues of mental health in East Asian communities, and I don’t think he (in a sense) had a support system for going through and understanding that and trying to work through all those things.

KP: Thank you so much for sharing all that about your brother. I think it was really helpful for us to have something tangible and good for us to respond to and I think it will be really cool for listeners as well. I think the next part of our podcast, we wanted to move into a broader context: interactions between mental health and maybe something like the prison-industrial complex and the history of mental health in the U.S. and what a different version of healthcare might look like in the future that does take into consideration a lot of these other topics. Does someone want to help me define what the prison-industrial complex means? I know we’re throwing out another big term.

AT: So right now, many of our prisons are privatized: they’re operated by private companies that profit off of incarcerating people, and so they have a vested interest in mass incarceration, a very profit-driven interest. So they are going to support laws and policies that lead to more incarceration of people.

AS: Yeah, it’s in the same sense that it’s an industry that profits off of the incarceration of people in the same way the MIC profits off of this concept of illness, the prison-industrial complex is this whole system of policies, businesses, of just money that’s invested in mass incarceration, the jailing of people. And I think this is really built up and really tied to the MIC because we see incarceration, we see jail, as this form of justice, this form of dealing with people that we have failed in a sense. But I think the way that incarceration and criminal justice plays out is that there’s this narrative of a good person and a bad person, and if you commit a crime, you’re a bad person and you’re not redeemable in that way, and this also plays out in the medical industry because people who are seen as “ill” or “not well” are also seen as criminals in the sense that they’re not redeemable and really discounts the fact that they’re people that society might have failed.

AT: I think that in addition to good people and bad people, there’s also this idea of public safety. So these are a lot of times criminals, but also mentally ill people, are people you need to be protected from, so this kind of cuts off empathy for those people because they’re now scary and violent and can cause you harm. And I think we see more and more (I think I mentioned this in my story) but prisons are the largest provider of mental health care [link] so I think that they’re often filling in the gaps of care that would ideally be taking place within society as a whole.

AS: Yeah! And even the way that mental health is provided, like I know a personal account from a friend of mine, she was going through some depressive episodes, and to address thoughts of suicide, other people would call the police and the police would show up at her door and they are then supposed to comfort her? Obviously they don’t, but they restrain her and then bring her to a psych ward and that’s how they like “take care” of an individual, you know? But that is so removed from the empathy that people who have mental illness need.

AT: And I think that you see that model of treatment starting in school because my brother would just get suspended over and over and over again, which is kind of the disciplinary equivalent at that age and my mom would just keep going into these meetings and say you can suspend him all you want but it’s not going to change his behavior. So I think that model of justice gets pushed through starting when you’re like ten. And you see that pattern more with, like now we have cops in our schools. Who are they protecting and from whom?

AS: Yeah, a lot of funding that goes into schools…students need better resources, they need counselors, they need centers and social workers, but oftentimes the first thing that gets funded is MORE POLICE, and I think that really speaks to the way that we address these problems and this is called the school-to-prison pipeline.

AT: Yeah, sort of what we’re saying is that these models of disciplinary action get implemented at the school level first, and you’re sort of feeding kids into basically getting arrested later on, and that’s just perpetuating this whole model of “safety and justice.”

KP: I think it’s very much parallel to how in U.S. history people with “mental illness” were often locked away in institutions and that was the way that we dealt with any kind of difference and behavior and you know we did that because the mainstay of the MIC is desirability and safety, and it’s not desirable to have people who act differently or who might have different types of relationships out in the rest of civilized society, and it’s now echoed in the disproportionate number of people with mental illness in prisons as well.

AT: Right, because there was a movement to get rid of these mental institutions but there was no sort of community care infrastructure to support that transition so people just ended up going from these sanatoriums, as they were called, which is just an old word for mental health hospital, to prisons, which I don’t see how that’s better for anyone.

KP: Yeah, I think that this history of how we take care of people with mental health is really interesting and there are a lot of parts to it that are found in the MIC but in other parts of injustice in society as a whole. And I think the last part of our podcast we’d like to talk a little bit more about alternative visions for healing with regards to mental health, maybe talking about how non-white, non-dominant cultures might deal with mental health? Has anyone had any experience with alternative medicine or alternative care that directly relates to mental health? I mean there’s this whole industry of yoga and meditation and all this stuff.

AT: Yeah and I mean I think that’s also kind of interesting because that also sometimes is suggested as a way of self-care [link], to avoid addressing the broader, systemic issues that are causing distress. But I mean my form of self-care, because I’m very skeptical of a lot of mental health industrial complex type services is just journaling and writing, and I think that people should acknowledge within their relationships the type of care and emotional labor that’s going on to maintain people’s mental health for each other.

AS: I haven’t seen anything or I haven’t experienced alternative forms of care, but I think just this conversation and thinking about interdependence with other people, rather than relying on this industry of medicine and treatment in that way, being able to be vulnerable with other people and talk to people and listen to people and be in community, rather than to treat illness or your own individualized care as an individual project, but rather like a community project.

AT: Also, sorry to go back, but thinking about not just when we say mental health vs. in a lot of community work we talk about empowerment, and how those two different things feel. So when we say mental health I think the focus is very much on being a functional worker in society whereas empowerment is about being more of a wellness model that goes beyond just being functional but feeling like you have agency in the world, and you can participate fully, and so I think that for me, a lot of my involvement in various communities have made me feel like empowered in that way that’s also another type of mental health care.

KP: I think I couldn’t agree more. I think in my own experiences I feel like the parts that have made me feel most whole and healthy have been when I spoke truth to a lot of the injustices I’ve witnessed or experienced and had people around me who understood what I was talking about or where I could put my experiences into a broader context and name what was happening rather than going to therapy and having the whole time talk about my relationship to my mom or something like that, which works for a lot of people, but for me talking about it in terms of empowerment and justice has been really helpful.

AT: I think that that kind of relationship in terms of where your position is talking in a community setting vs. talking to a therapist, like there’s definitely major differences in the power dynamics of those types of conversations, and so for me, I feel much more comfortable and at ease speaking in a group where I’m seen as a peer rather than talking to someone who’s a professional, who’s supposed to have the tools to figure me out and fix me.

KP: Which is not to discount people who do rely on that, I rely on that sometimes as well.

AS: I think it’s a combination, being able to address both the individual needs and also the larger community, institutional, and historical systems that affect your own sense of well-being.  Cool, so I think that’s about time for this podcast. I really appreciate Alexis coming on and sharing her thoughts and Kelly for facilitating. I think this is our second episode, so our last episode will dive more into ideas of alternative healing, ways of challenging the system now that we know what the medical industrial complex is and can better name it, and find opportunities to change it as either practicing professionals, people who are going into the medical field, or as community members and how we can take care of each other.


 

 

 

 

Kelly Park is a medical student, stationery connoisseur, and an alto.

 

 

 

 

 

Andy Su is a community organizer for progressive LGBTQ Asian American communities who finds their work as hard as rocket science.

 

 

 

 

 

Alexis Takahashi is an aspiring science writer and sushi enthusiast.