Saks Institute 2019 Fall Distinguished Lecture – Esmé Weijun Wang and Elyn Saks

good afternoon everybody welcome everybody it's great to see such a full room for such an important event my name is Andrew Guzman I'm the Dean of the law school and I'm so thrilled to welcome you to the 10th annual saxxy Institute fall Distinguished Lecture before before I get into my introduction any further I need to issue an apology I have to leave immediately after these introductory remarks I have another commitment upstairs that started 15 minutes ago so I will go to that so I apologize for that I wish I could stay I also want to make a few acknowledgments some of the source of support for the sacs Institute I want to thank the Sydney rbair jr. foundation The Doors Prix Trust battery-powered wrist rich and Christine gets the Anthony and Jean Pritzker Family Foundation and indeed all the supporters of the Saks Institute who allow us and when I say us I mean Ellen to do the incredible work that we buy which I mean she does it's great it's great to see so many people here too for this event so I know that today we have at a minimum mental health professionals advocates consumers we have leaders from the Academy and I know we have lots of other people who are interested in topic for all kinds of different reasons so it's more it's great to have such a diverse and varied audience here the thing we try to achieve at USC Gould is we try to advance justice and its causes for the improvement of society and we think we can do that and we think we do that through legal education through scholarship through impact on practice and policy the drivers of that are principally our faculty obviously who produce research that addresses critical legal issues across the spectrum of our society and engages in work that shades the public discourse I say all of that because Ellen Sachs and the Saks Institute are the poster child of that kind of engagement since its establishment in 2010 the Saks Institute has both studied in an academic sense critical topics of the intersection of law mental health and ethics it has also worked in real time and on the ground to promote policy changes that improve the lives of people with mental illness and both in the most academic sense of academic and in a very applied policy sense the Sachs Institute has been highly successful we're so proud of the Institute it is only through great force of will that I'm resisting the temptation to list its many achievements in the nine plus years it's been in existence I want to preserve time for the program which is obviously why we're here I don't have enough fortitude to do the same with respect to Ellen however so you may have seen Ellen aside from around the Law School on CNN you may have heard around NPR you may have read about her in the New York Times watched her TED talk even if you know her from all those things I'm going to say a few things about her the official by the book title Ellen professor Sachs is the Orang B Evans professor of law psychology and psychiatry and behavioral sciences here at the Gould School of Law she holds the title of distinguished professor of USC which is a rare and prestigious appointment bestowed by the university president she's one of our nation's leading authorities on law and mental health having published five books and more than 50 articles and book chapters on the subject she's the author of a New York Times bestseller the center cannot hold my journey through madness doubling the number of New York Times bestsellers at the front of the room at which the her memoir is a really powerful book describing her struggles with schizophrenia in 2009 professor Sachs was named the recipient of a MacArthur Fellowship better known as a genius grant and she used that to start the Saks Institute which speaks loudly - who Ellen is and her priorities she took a personal achievement the genius grant and turned it into an instrument of scholarship and service and policy change to help so many others and so without any further delay please welcome Ellen sacks [Applause] thank you deep Guzman Andrew for those very very kind words I'm thrilled and delighted to be here today I want to introduce our speaker her name is s may wave Zhang Wang and she's a novelist and an essayist she's the author of The New York Times bestseller called the collective schizophrenias for which she won the gray wolf nonfiction prize her debut novel the border of paradise was called one of the best books a best book of 2016 by NPR and one of the 25 best novels of 2016 by electric literature she was named by Granta as one of the quote best young American novelists in 2017 and won the whiting award in 2018 born in the Midwest a Taiwanese parents she lives in San Francisco and she can be found at as Mei Wang calm and on Twitter at as Mei Wang Wang sorry so honored and delighted to have you come up and talk so as B's gonna speak for about 20-25 minutes and then we're gonna have a kind of Q&A between each other with each other and then we'll open it up to questions from the audience so thank you [Applause] I'm so excited to be with you all today I'm honored to be brought here by USC and the Sachs Institute which was such an inspiration to me as I was working on my book the collected schizophrenias but I have to say a delight that I was not expecting was how happy I would be to be giving my talk while looking at a room of people just crushing some Sandoz while I was talking about stigma and mental illness and all that stuff you guys just really going after it and I really appreciate that about you so today I'm gonna be sharing some stories and I'll talk about some big ideas I'm gonna tell some bad jokes and hopefully open our minds to learning about one another's minds I'm going to talk about stigma different forms of stigma and how toxic stigma can be as well as how embedded it is in our culture and in other cultures I'll discuss the fight against stigma and ways that encouraging self-advocacy and resilience can help to soften other difficulties that go with a mental health diagnosis and finally and this is a little bit difficult to imagine but I'll talk about hopes and dreams and how the jobs of mental health professionals are to carry other people's hopes and dreams for them when they can't do it themselves so before I start I'd like to paint a picture of what it might look like to be a person living with a diagnosis of schizophrenia fiying very much with their diagnosis from an essay called Yale will not save you I'm still trying to figure out what okay is particularly whether there exists a normal version of myself beneath the disk order in the way a person with cancer is a healthy person first and foremost in the language of cancer people describe a thing that invades them so that they can then battle the cancer no one ever says that a person is cancer or that they have become cancer but they do say that a person is manic-depressive or schizophrenic once those illnesses have taken hold in my peer education course I was taught to say that I am a person with schizoaffective disorder person first language suggests that there is a person in there somewhere without the delusions and the rambling and the catatonia but what if there isn't what happens if I see my disordered mind as a fundamental part of who I am it has in fact shaped the way I experience life should the question be a matter of percentages of my lifetime I've spent enough of my lifetime with schizoaffective disorder to see it as a dominant force and if it's true that I think therefore I am perhaps the fact that my thoughts have been so heavily modeled with confusion means that those confused thoughts make up the Gestalt of myself this is why I use the word schizophrenic even though many advocates don't my friends with anxiety disorders for example tend to speak of anxiety as a component of their personalities Laura Turner writes in her essay how do you inherit anxiety it is from Verna libo trite burg that I inherited my long face my quick hands my fear that someday soon I will do something wrong and the world will come to a sharp end in their minds there's no tabula rasa overlaid by transparency of hypochondria generalized anxiety disorder or of compulsive disorder such thoughts are hardwired into their minds with no self that can be untangled from the pathology they experience another friend's obsessive compulsive disorder has come significantly since she started taking Prozac but she continues to be most comfortable and things are tidy even though her tidiness is no longer disruptive to her life she continues to wash her hands more than anyone I know there may be something comforting about the notion that there is deep down an impeccable self without disorder and that if I try hard enough I can reach that unblemished self but there may be no impeccable self to reach and if I continue to struggle toward one I might go mad in the pursuit I share this because I want to start off with the idea that people like me or maybe you the people with the mental health issues have all kinds of different ideas about how we might relate to our mental health issues at different times in my life I've identified more or identified less with my diagnosis which impacts my life differently depending on how much stigma I'm facing in the moment I've been living and working in the worlds of mental health and illness for a while now and I've often been asked so what is it like to disclose to people that you've been diagnosed with schizoaffective disorder and should be honest it used to be a lot harder before I published a book that is in fact about my life with a psychotic disorder the information often comes before people meet me instead of months into a friendship or years into working with me I used to get hired at jobs and leave them without ever disclosing that I was experiencing delusions and hallucinations and that time in my life was stressful it was stressful because I didn't know when if ever would be appropriate time to come out about having a serious mental-health diagnosis in my personal life in my work life in my school life I remember meeting a classmate named Anna and I really felt like we're gonna become friends and her then-boyfriend and my now husband were going on a double date I haven't even told you about movies we were gonna see yet they were gonna go see Superman and we were gonna go see The Devil Wears Prada talk about the gender binary anyway so Superman was starting about a half an hour before the devil wears prada and so Anna and I went to the movie theater cafe for coffee and I was really nervous my diagnosis at the time is bipolar disorder and I felt that we were at that early point in the friendship where I needed to tell her that I had that diagnosis so I just blurted it out I need to tell you something I said with exactly that amount of chill I have bipolar disorder oh okay she said Anna was and is a very kind person we are still friends over 13 years later I have an anxiety disorder she said and I was like yeah success and later I would learn so much more about what Anna was dealing with including generalized anxiety disorder in hypochondria and she would see me through inpatient hospitalization and the dawning of my psychotic symptoms anna is one of the people that has provided me with support rather than stigma but this has not always been the case we live in a society that frequently throws around words like psycho and schizo and crazy that's one small thing we can do to not say crazy when what we really mean is ridiculous we can try to catch our verbal habits in order to prevent ourselves from reinforcing the fact that pop culture portrays mental illness as something to fear rather than something that can happen to the people that we love or even ourselves something from our worst nightmares and certainly not something we can thrive with and we can catch when other people do the same thing it's hard to speak up when someone else is doing the talking but it's worth it to the community at large if you can say oh do you mean that it's ridiculous not crazy I thank you in advance for doing this before the collective schizophrenias came out but while I was writing it I would notice stigma about my diagnosis coming from absolutely well-meaning people at a writers residency no one knew about my diagnosis until one morning when we were going around in a circle reading our work aloud and I read from an essay about the metaphor of possession and schizophrenia which mentioned my inpatient hospitalizations and after everyone finished reading one of the other writers who had always treated me completely normally said it's so amazing that you're sick that way because you could never tell you don't have those ticks and things at a fundraising party from a publisher a donor came up to me and said it's so good to meet you you're so eloquent for someone who has such a terrible diagnosis and every time someone says something like this to me I would have absolutely no idea what to say I would have no idea particularly if this person was to remain in my life if they would go on to see me differently it always felt like a roll of the dice because what was there to say in the face of this history of stigma particularly about schizophrenia and it's related disorders on the other hand spending time around me was one way to decrease stigma because prejudice often dies in proximity I should be glad that no one thinks I'm a potential murderer because that's one of things the few times I hear about schizophrenia in the news when someone commits a terrible act of violence and it turns out that they have schizophrenia stigma comes from American culture Western culture but it's also carried over from immigrant cultures my parents came from Taiwan in the early 80s and when my high school counselor finally told me that my depression and anxiety were serious enough that I finally needed to see a psychiatrist I told my mother and my mother yelled at me how could you do this she said how could you do this when we've always fed you and clothed you and provided a roof over your head I cried and cried I went to school that morning and I skipped first period and I hid in the art room crying and I didn't actually see a psychiatrist until that school counselor summoned my mother to the school and told her that if I didn't see a psychiatrist I could hurt myself and this my mother understood when my mother took me to see a psychiatrist who was a white man and who kept the shades pulled shut he asked her if there was a history of mental illness in the family standard question did we he asked have any relatives who had any kind of mental illness no my mother said and as far as I knew that was the truth later I would learn this was not true my great-aunt my mother's aunt had died in a mental institution my mother's cousin had killed himself and my mom had experienced depression and anxiety but when I asked my mom why she hadn't said anything to the psychiatrist when he asked her she said in Chinese woman push on say something she in other words it was none of his business even if he was a psychiatrist I learned too that she'd been diagnosed with panic disorder among other things but refused to take the medication she'd been prescribed she'd been so depressed after giving birth to me that she nearly killed me and then herself but it was none of his business cultural stigma is a big part of most cultural groups which is one reason that mental health professionals or members of an in-group can be so helpful in the ends back when I was a teenager I finally saw a Chinese American psychiatrist long term and I am sure that having a psychiatrist who could communicate with my parents directly and in a way that they could truly understand was important to my entry into the mental health world the website therapy for black girls for example has a directory of mental health professionals who provide services for black women and girls similarly the website therapy for latin acts provides a directory for latin acts therapy therapists all over the country before I came out publicly about my diagnosis a first bipolar disorder and then schizoaffective disorder bipolar type I worked at the mood and anxiety disorders lab in the psychology department at Stanford as well as the bipolar clinic in the psychiatry department it was around this time that I first began to experience symptoms of psychosis my first experience of psychosis occurred when I was in the dorm showers when I heard a voice very clearly say I hate you I knew that I was alone in the bathroom and yet the voice was speaking directly into my ear and this is why I say the hallucinations kidnapped the senses because they are so very real just as though something were actually happening I wondered if it was coming out of the drain through the pie somehow but when I realized that wasn't possible I finished my shower and went back to my room in the days I told my roommate what had just happened and she said you're crazy which was not what I'd wanted or needed to hear just then she's since apologized for her response but it was really hard to feel alone with that experience the hallucinations started to come more frequently I started to see corpses in the passenger seat of cars and demonic shadows flying at my head which would cause me to duck and dodge very dramatically it was always the things that caused me to jump and move that freaked me out the most because I couldn't hide that I could look at a corpse in a car and go lotted I don't see that but I could jump I would jump when a hallucination of a giant hole would open up in front of me my goal during those times was to conceal what was happening to me as much as possible to be normal or to act normal and meanwhile I would go to work and interview people who would tell me stories about having manic episodes where they would for example climb to the top of a roof to communicate with aliens and I kept telling myself that's not me that's not me but I also knew it was me we were very much the same except that I was getting paid to interview them and they didn't know that I had a diagnosis I was in effect living a double life I didn't tell any of my co-workers about the psychotic symptoms that I was experiencing because some of them would talk about our research symptoms with a certain attitude that conveyed condescension and even disrespect I was afraid that they would think of me differently I was afraid that they wouldn't trust me with the work that we were doing life would have been easier I think if I'd opened up back then one of the most important things for me than in now regarding living with a serious mental illness involves my second major point figuring out what I needed most to develop and maintain ret resilience and then using self-advocacy to ask for it because sometimes people make a sum Shen's about what other people need for example if someone is a barista and they disclose that they're dealing with mental health symptoms their manager might assume that they need fewer hours or that they need to be put in the back but that might be the exact wrong thing for that person maybe they need more hours maybe they need to interact more with customers learning to self-advocate is essential because we need to figure out well we need first and then we need to figure out how to claim what we need and make that happen I mentioned earlier the importance of language one of the first things I learned as a mental health advocate was to use person-first language so person with schizophrenia instead of schizophrenic or person with depression instead of depressive once I became involved in the disability rights community however I realized that not everybody prefers this kind of speaking some people identify strongly with their diagnosis and don't like person first language and first in fact person first language really bothers some people which is why self-advocacy is a great skill you can tell people what kind of language you prefer you can strengthen that self-advocacy muscle because it's not often easy to speak up for ourselves self-advocacy it's important and difficult we are told not to trust our own minds that we are lesser people and that our opinions don't matter it takes a lot to battle the force of all of those insistent inner and outer critics it takes a lot of practice to build a habit of asking for what we need there is a saying that people associate with me keep going you're doing great I even had it put on a mug it sounds extremely corny I know but it's something that means a lot to me it means a lot to me because for so many people being alive is no small thing I have taken one overdose and been hospitalized as a psychiatric inpatient three times if you are alive and if you are proverbially putting one foot in front of the other you are doing great resilience matters support systems matter because you never know what will happen next the writer nicole cliff recently asked on Twitter what is the most optimistic thing you believe here are a few of the answers I kind of uh nayana Klee believed in the idea of tomorrow being another day in hard times there is usually some good on the horizon and finally this one I think the best fries I'll ever eat are still in my future all of these even the one about the fries are about persisting even in hard times which is something that even non mental health professionals have reminded me of in my darkest hours in 2013 I've been in a psychotic episode for 10 months and I was about to quit my full-time job because I could no longer work I went to see my psychiatrist and she told me that because we had tried every atypical antipsychotic on the market it seemed that I had a medication resistant form of schizoaffective disorder she said that it would be unlikely that I'd ever be at 98% or 99% or even 90% again and I left her office sobbing really sobbing and hopeless there are times in life when were terrified because the forecast for the future is really truly bleak if it were meteorological it would say natural disaster I say there are because I think these times are unavoidable as much as we would like to think we could avoid them these times when we wonder how we will get through and how we will make it and as I was about to enter the door for the elevators full of fear and doom the security guard stopped me I feel like as the security guard for the psychiatric department at a big HMO seeing a crying woman escaping for the elevators is probably not that weird but he stopped me and he said are you okay what happened and I told him a short version of what had just happened well he said and he was a very big guy the doctors don't know everything are you a writer I was surprised by that because how could he know that I was a writer I said yes go home he said and write about this six years later the collected schizophrenias debuted at number three on the New York Times bestseller list but I couldn't have imagined that on that day all I could do was keep going which is his own kind of resilience I am so grateful to my psychiatrists I am so grateful to my therapist and I am so grateful to everyone who has helped me to survive including the security guard who I gave a thank-you card to the next time I saw him and then I never saw him again so finally I will say this one of your biggest jobs if you work with people who have mental health issues is to help them keep going if at all possible on top of that - keep dreaming - and when they can't do that for you - keep dreaming and hoping for them I went to give a couple of talks at the Chinatown mental health clinic in San Francisco a few years ago and the first talk was fine it was in front of a group of Chinese and Chinese American people with schizophrenia who had been meeting for years and I felt very calm in front of them these were my people so to speak but the second meeting was in front of clinicians downstairs in a different room this room was brighter and cleaner and the clinicians started to wander in men and women and business casual who's found seats and they stared at me including one man who sat in the back and he actually frowned at me the entire time and he made me nervous but all of them even the friendly seeming ones made me nervous so I tried to seem confident I didn't want to be the crazy person giving a talk even though I was definitely the crazy person giving a talk I worried that they were bored I'm pretty sure the guy in the back was actually bored I worried that I so I tried to make sure to mention what schools I'd been to and what jobs I'd worked I tried to sound professional and like I knew what I was doing and when it was over I was relieved and I thought I'd just slip out of the room and go home but this one woman stopped me before I could leave she thanked me for coming to the clinic and forgiving my talk she said it's hard working with these people at first you have so many hopes for them and then they get sick and relapsed and then they get better and then they get sick again and it happens over and over until a lot of the time you lose that hope haven't you come today reminded me that it's important to keep having that hope for them I've mentioned that there's a saying that people associate you with me keep going you're doing great but there's another one that people probably associate with me even more than that one and I didn't even realize it was happening until I went on book tour as I traveled the country and even went abroad doing events I learned that people appreciate the new book but they also really appreciate of all things bye good morning tweets on Twitter by which I mean these little blessing type things that I write on a lot of mornings it's not quite morning but here are a few of them good morning may we let ourselves soften with the pleasure of something small may we find a granule of joy or better yet may we grow into our best selves and love and be loved eyes up let's go good morning may we be loved may our minds thrive may our hearts not skitter in fear but be proudly with courage may we help others more than we harm eyes up let's go good morning may we be safe may we not hurt others and work for justice not only in the wider world but in our smaller circles as well may we love and be loved may we be kind eyes up let's go and so those are a few examples of these tweets that grew to mean something to people these good morning tweets that I didn't think of too much about but that people all over the world would mention to me as being encouraging in a world that can be so desolate and frightening especially when struggling with mental illness I am often asked that if I could have one thing to say to a person after they receive a mental health diagnosis what that would be and I usually say remember that you are still you you are still that person who can't stand Peas in their fried rice has a freckle on the right hand and sings like a bird hold on to that and for those of you who work within systems that often reinforce the strangeness of mental illness rather than the humanity of those who live with mental illness remember that too and help your clients and patients to remember that fight the stigma that exists toward mental illness cultivate resilience and self-advocacy carry hopes and dreams eyes up let's go thank you [Applause] thank you so much as many for that wonderfully compelling and moving talk have a couple of short questions and then open it up to people in the audience have a chat so you talk a little bit you open up with who am I am I the person before I became had mental homeless am I fundamentally a mentally ill person or am I just a person who has some aspects of that how do you think of yourself today and have and what's the most helpful thing to say to someone who's in that place yeah so this will seem like a cop-out I think but to me I think the answer for myself might be one thing but for you or you are you the answer the best answer is the one that is the most helpful for you is the one that like helps you feel the best as you move around in your day as I think about myself today I I think that the the answer that resonates with me the most is the one that I talked about when I was reading an excerpt from the book I feel like it's kind of part of the Gestalt of myself like it's it's been with me for a long time and so it doesn't really feel so much as like something that is like overlaid on top of my shields self yeah but that might not be something that feels good to somebody else you know so I think that for somebody else they should find whatever you know people need to find their own yeah so I'm part of a group that's gonna study a new name for schizophrenia uh-huh and it's a fruit from around the world that's talking about this what do you think about the name schizophrenia do you have any thoughts about what might be a better name I was hypnotized a name well I mean given its origins it's really outdated yeah like like from schizo and freen like it's just it doesn't it's not relevant anymore I think we just kind of keep it because of its origins I I don't have a better suggestion off the top of my head I think it's a lot of pressure to try to come up with one right now buddy Boone but I'm very glad that you're coming up with one okay now I have a question for you what is the process of coming up with a new name for something like you know we actually wrote out a list of names 10 or 15 names and we're doing surveys and we're surveying consumers and family members and mental health professionals I think one interesting question is what if there's a deep disagreement and the consumers say I want this and the mental health professionals say they want that being a consumer I think consumers should get too laissez but that's kind of an interesting question as well how did you come up with the 10 to 15 names like do you go back in the Latin like are you little bit yeah Alzheimer's dementia something like boiler or CREP lence a thought disorder or something like that but it's kind of an interesting I love that that's happening though yeah and we'll have to pick your brain a lot right you're a word person so you've talked to some but just to put it all together in one place what are the main benefits and challenges of having this illness I think the the main challenges are when you know things are really flaring up and the symptoms are at their most acute and I can't function and I think even more than that it's not even necessarily when the symptoms are at their most acute it's when I'm suffering the most and it's I can't remember is is schizophrenia or schizophrenia and schizoaffective disorder those disorders that we're at mater where suffering is part of the criteria well as you know with depression that is one yes it is typical schizophrenia there's supposed to be a decline in function oh okay should either be you know difficulty work and having relationships and and stuff like that what suffering is not necessarily one of the criteria oh that's really interesting okay um I mean I will say you have to have symptoms that most people would suffer alright yes yes yes yes um yeah so I guess my answer would be yeah it's really the suffering so like when I was experiencing Qatar delusion which I write about in the book okay so it's a it's a rare delusion where a person believes they're dead and so I experience this solution and I write about it in the book in an essay called perdition days and there were times when I would experiencing it where it wasn't I wasn't quite suffering so much like I was still experiencing it but it wasn't it wasn't like I felt tormented by it really but then there were times where I really felt tormented by it and that definitely was much much worse even though I was my life was being inhibited the whole time yeah I mean as Mae and I have both suffered from something similar called cat Capra's where you think that other people have been taken over by aliens but I hadn't heard about cooked cotard's Wow they're related they're related because they affect similar errors that's all right yeah research researchers think that they're related so again has been no so you do you try to in life pass as normal or now that you're opened you are you sort of an open book about how you're thinking and feeling I'm not saying that you broadcast to the whole world today I'm feeling so and so but that you're easy it's easier for you to say those hard things to close people yeah that's a really good question actually I it's so funny that nobody has ever asked in all of my QAS and you would think that this would be a really common question but people actually have never asked me this I I think it depends on who the person is like this kind of reminds me of like brené Brown and like her talks on vulnerability and how she says you know you have to be careful who you're vulnerable with because like she really talks about vulnerability and advocates for vulnerability but she makes sure to to caution the listener or whatever the reader or whatever to be careful with whom you're vulnerable so I wouldn't necessarily tell just any old person if I were having a symptom you know it would have to be a person that I trust or you know how about you say pretty much the same people some people were safer than others exactly exactly so factors that have hurt or challenged your recovery what have been the biggest challenges well we were kind of talking about this a little bit yesterday but um I find that stress is a big challenge it's so you know I'll have flares or you know symptoms will crop up or things will get worse when I'm stressed and yet stress is something that like everybody experiences all the time we're living in stressful times this current administration is not helping that you know the way the state of climate change and you know all these other things we're not living in very unstressed all times we'll just say that so not only is there that but then there are like stressors in one's life so you know if you know I I look like I love doing things like this but it also entails traveling and then so I have to get on a plane and go through security and you know there's staying away for home and not being around my my husband and my dog and things like that and so there's always kind of that balance of how do I make my life not completely dull and so wild yeah but not so wild that I'm filling my life with stressors yeah so both of us share a distinction about being kicked out of Yale at one point I went back as many went back and she broke down again and they said we can't come back yeah which was very hard and painful I'm sure and then you went off to Berkeley I went to Stanford yeah Stanford yeah what do you think about students with mental health challenges what should the rules be around when people can leave and come back and that kind of thing and how how can universities help students I think it's so complicated I used to feel really angry at Yale about that whole situation and the more time that's gone by the more I've realized that it's a very complicated situation and you know there's so much liability that's you know the university has to be concerned with and so I really felt like I really feel like there needs to be a group of people who are smarter and wiser than me who need to come up with some kind of best practices because all the schools all of these schools have different policies and you know one school will do this thing but then this other school would do this other thing and you know I you I also went to University of Michigan for my MFA and they had this really lousy policy when I was there but now it's a lot better and Yale was really lousy while I was there and I just right after my essay was published in anticipation of my new book the New Haven Register published an article in part about my essay and they talked about in the article how there had been this study about how the Ivy League's are doing regarding their treatment of mentally ill students and Yale received an F so things apparently have not changed very much for them yeah and so I think like I do not know the answer but I feel that if we get people together at least there should be some consensus as to how you know what might be best yeah to get people from different areas yeah so one last question for me what was like the worst stigma you ever experienced and what do you think the best way to combat stigma is worse stigma I'm not even sure what that would be what is the worst thing that you've ever experienced I guess people thinking that tying me to a bed was okay because I wouldn't feel things that ordinary people would which people told me and it's totally false oh that is awful I mean I I mean I've also been put in restraints but I did not I don't know if they thought I didn't feel anything I'm just I think I can't think of anything right now but I'm sure I mean yeah we all have yeah there's all there's always something and yeah I can't think of anything off the top of my head but I think your book in my book have done well because almost everybody suffers with something you know their kid gets in a car accident and they lost all their money in the stock market and someone got sick and everybody has something you know and that's that's why books where people are challenged or I think in part our interest into people yeah like people like just to hear about how other people get through things and I'm currently working on something about how people who are dealing with chronic illness not necessarily mental illness but that could be included are very fascinating I've found are often fascinated with this group of books that include like man's search for meaning or no Manolo despite it not on or like Anne Frank's diary these books about suffering because we're we're humans who humans are not very good at suffering but we often have to learn today I'm good at suffering yeah yeah okay why don't we open it up for questions from the audience okay okay um yes thank you thank you um do you ever hear from people that say you're not really seriously mentally ill or that you're betraying and homeless unrealistic version of what it is to be having schizophrenia in yes in so but not maybe not in so many words but I know that's what they mean it's like when people who are autistic are advocating for people with autism and then parents of autistic children write to them and say that's not really how autistic children yeah like you're portraying an unrealistic way of how autistic kids can be I mean there are a lot of parallels I think but um that's I think in part why I have a very complicated relationship with the term high-functioning there's and essay in the book called high-functioning yeah do you have thoughts about this sorry do you have thoughts about this I have a question where are you over here okay I'm a therapist I work a lot with caregivers and people on the spectrum and learning disabilities things like that what are some of the most helpful things that people could say or do or things that people wish they would have done when you're in a really challenging moment and you're suffering a lot to let you know that they're still on your team even if you're not ready for them yet yeah so when I was doing really badly we put together a care calendar because it was really helpful to have people with me I'm even if I wasn't really good at interacting with them and so we would have people sign up for shifts to come sit with me and I found all kinds of things were helpful sometimes I would want to have a conversation and just have a really banal conversation like to talk about movies or whatever and I think something that really helped was for my friends to treat me like they respected my wishes and that they wanted to know what I needed and wanted so you know they would come over and then say like how are you on a scale of 1 to 100 today like they would have like a scale and then if they if they knew that I was like a 24 then it was probably a day that like I was not going to have a conversation and that that they thought they would just sit with me but if I was you know my the number were higher you know maybe we would chat about something or yeah I think so much of it is just knowing that people are there or that they're willing to be there and that they don't disappear all of a sudden I remember when I during that time when I was psychotic for almost a year I received flowers from people I asked for the flowers but I I really found that moving because when you're sick in other ways you often get flowers but not when you're mentally ill and there was a span of time when I just got flowers all the time and it was really nice and they would have little encouraging messages that came with them yeah and my sister-in-law without asking prepared all these frozen meals like just things that you would do for somebody if they were sick in other ways like we just so we just had like a freezer full of frozen meals that I could heat and eat what she would do if someone like had it just had a baby or something but you wouldn't necessarily think to do for someone who is having a long psychotic episode no actually I often start start off my talk by saying that my friend came to visit me after I was diagnosed with cancer and look past our embrace and said oh those are beautiful flowers and I thought to myself you get flowers when you go in for a physical illness but not a mental illness but your experience was that they even stepped up during during the mental illness I asked for the flowers but by choice once I once I pointed out like can I please receive flowers because this is a really hard time and people don't receive flowers for men's law that my friends really okay and then I got lots of flowers Ellen asks I don't exactly remember phrasing but like the best and the worst thing about your diagnosis and you talked about suffering but as the mother you didn't get to the other side and there's other other sounds with schizophrenia I'm longing to hear the best I think the best is I think I just there there's a book called the two kinds of decay by Sarah mangu so and in it she talks about this I think it's a blood disease that she has and she had when she was younger and she says when you have an illness a very serious illness you either become a huge or you become more compassionate and I like to think that I became a more compassionate person when I became ill because I started to think about I started to think more about other people and I think it's kind of an outgrowth of the whole suffering conversation because you're thinking about your own suffering it's true but you're also very aware of the fact that you're not the only one who's suffering that there's this whole lineage of suffering in the world and that you're connected to all these other humans out there who are also dealing with things and it might not be mental illness but it might be like they've just lost their job or like they've just lost their daughter or you know whatever so I was curious what's the role for like like volunteers or the general public so like I take the train in from Santa Monica and like one time there's guy who is just like screaming for about 20 minutes you know and so I yeah so I basically took a picture of them and tried to email like the security and they're like oh you have to call in we there's nothing we can do they wouldn't do anything I found it really frustrating but so I'm just curious or like should I have done anything and what should people do when they come across that yeah I think in terms of like things are different depending on where you are like I did some trainings with Starbucks about mental health issues and they have a different policy if someone's like yelling in their Starbucks but it is different if you're like on a train so there should be some kind of resource like I I would maybe it especially if you take the train since you take the train regularly and probably that's not going to be the last person you see on the train who is having problems you might just call the the metro or whatever you're writing and find some kind of line I don't know if it would be security or something and I just ask them like what should you do in that kind of situation or like are the resources or like what or or find some other resource I don't know what a good resource would be yeah yeah because you can't be the only person who's dealing with that I have a friend who is a psychiatrist at one of the county mental health clinics on the west side who decided to leave the clinic and she has a half-time private practice and the other half she approaches people Santa Monica beach who look homeless in need of food clothing and medicine and tries to engage them in in treatment and in the process as a layperson though and you just see something like that that looks upsetting and scary you know it's difficult to know to know what to do yeah it's tough because you know often it'll just end up getting the police involved and then that can be really difficult or negative you may might result in negative consequences so unfortunately I'm not an expert in that matter I apologize here that's sorry okay okay it's okay I'm gonna ask this question and I'm gonna say we and place myself with you because one of the things that you talk about and I like you I don't love the term highly functioning but when we are highly functioning and living in the world it's a very conscious choice to reveal our illness it's a very conscious choice because we live in a world of the mind where we have expectations of us and there's no way than anyone looking at any thinks that you're a person who has been placed in restraints or hospitalized multiple times and never visited so my question is you have something beautiful on your website where you talk about creativity resilience and legacy and I'd like you to talk a little bit about legacy because if we are gonna say that we put ourselves out there we're also placing a burden and a stress on ourselves of wonders the expectation once we do put ourselves out there and how does that feel to you as a writer and and Alan as a as a professional that people look to and have expectations but I think the deeper burden is the self expectation once we place ourselves out there of what can we do what is our legacy I actually the last time I was hospitalized which was a long time ago 82 83 it's on the phone from the hospital ward with my I was saying how you know this is just such a terrible thing that's happened and a big bird I'm never gonna have a life and he's like when people get terminal cancer and beat it do well and beat it this is a piece of cake my first reaction was he just does not understand how awful this is how bad this is but my second reaction was well you know maybe he's right maybe he's right maybe I shouldn't give up maybe I should go forward notwithstanding the doctors were telling me to be a cashier for several years and that kind of thing yeah I like that story I think that like so I talk about legacy a lot because it's something they have thought about since I've gotten sick because I also deal with chronic illness there's a chronic illnesses more physical and that's also in the book that's been called a number of different things so mortality is something that is on my mind a lot and so if when I think about legacy legacy can be this very big thing that can like put a lot of pressure on you or me but I think instead of I think that if you feel like the word legacy makes you feel more expansive it makes you feel like going out there and doing big things and dreaming big dreams and starting Institute's and things like that like go for it but sometimes I think a better word or a word that can be more helpful as impact because impact is something that you can have every day impact can be like the you know the cashier you're nice to when you're you're buying your coffee in the morning or impact can be the security guard who was kind to me that day in that my psychiatrists office I mean that was a quote-unquote small thing but it was actually the biggest thing ever and I've never forgotten him and I probably will never forget him even though I don't even know his name so so yeah I think sometimes the word impact can be more helpful to think about if that helps just wanted to thank you both for sharing your powerful stories and for helping fight the mental illness stigma I've struggled with post concussion syndrome accompanied by depression anxiety hallucinations and a recovery-oriented approach really turned things around and help me function I love that you both are very autonomous and are sharing your stories when you were speaking about changing names for schizophrenia it just sparked the thought of maybe even reconsidering all the names that we have and even just like for for regarding it as a mental illness or as a disorder having that negative attachment to these conditions just thinking like maybe we can I don't know how how you both would feel but look at it as more positive regard speaking of suffering and speaking about society conditioning us to not feel and not be able to share how you how you think and everything like that then embracing those and having these feelings of extreme sadness or having these creative thoughts and visions hallucinations whatever you want to call it maybe looking at as a more positive regard and as gifts and talents so people can accept and be able to cope with it better I I don't really have anything the way I feel is I feel like I have a biochemical condition that requires medication and intensive therapy but I say that not because I've done heavy philosophical lifting around how do you distinguish I know illness from eccentricity or difference but because it makes my life better to think that and if for someone else if it feels better to think it's neuro diversity and they're totally fine and or even better than most people are and that works for you I think that's great it's not one size fits all and I don't really think of this illness is giving me giving me gifts really yeah like I I would I would agree although in the last couple of chapters of the Klug's it schizophrenias idea kind of explore that a tiny bit the last I think it's the last chapter it's called beyond the hedge is about like my exploration of what if schism of active disorder is some form of spiritual gift and so in kind of my exploration in that direction yeah I think it really it's it's kind of I I do agree so much with what you just said it reminds me of my whole thing about like you know if person first language is something that you feel good about go for it if you would prefer not to use person-first language and go for that if you prefer to feel like your diagnosis is the gestalt of yourself like and that makes you feel better you know or the opposite you know yeah speaking of the gestalt I was just referring to the the quote-unquote gifts more like like writing or speaking in front of a group of people and/or acting exercises to be able to not have those thoughts trapped inside but to be able to release whatever you're feeling or thinking and be applauded for this creative side of you rather than shamed but I think you spoke to that in regards to like embracing that part of you thank you for the attention I was actually going to bring up your last chapter the beyond the hedge chapter because I think it was very intentionally put at the end I'm assuming with this journey and ending up in a place that gave you comfort in a way that you hadn't found before and I worked with a lot of young people who are experiencing their first experiences with extreme states and I'm wondering what kind of traumatic experiences that they've had in institutions in hospitals that that could be prevented with even that option you both talked about choice and whatever works best but I think choice is also a privilege and for our young people who you know have been institutionalized from young ages from from birth really how is it that we can infuse that idea of choice in systems early on and especially that of the spiritual nature I think with mindfulness we've taken that and really seen its power and with maybe depression anxiety disorders but for severe mental illness we haven't really taken that into the mainstream but I wonder about the traumatic experiences that could be prevented a people when people are first experiencing these extreme states when you talk about institutions to mean like foster care or group homes or do you are you what kind of institutions yeah that's a really good question I mean I I continue to think that my hospitalizations are really some of the most traumatic experiences of my life and I so much of it is as you said that you just lack so much autonomy and that it's so frightening to not to not only lack control over your mind but also to not be able to go outside when you want to or go to sleep when you want to or and things like that I'm not sure like I I I mean I'm sorry to say that I probably don't have a very good answer for you and I'm and I'm sorry but my first thought would be I really wish that a psychiatric institutions could be redesigned and I think this would be the case for adults and for young people I I wouldn't be so terrified of being rehospitalization my psychiatric hospitalization incredibly traumatic I really did a study that we're doing is sort of relevant to this so typically we find people who were ill and competent and appointing your guardian to make their decisions taking choice away the were studying something called supported decision making where we ask people to pick a couple of people in their lives whom they trust and have those people help you make a decision even though it's your final decision and we're studying sort of who they pick and why and satisfaction with the decision making product process and then downstream effects like more independent living and independent working and we have four jurisdictions for that set a USC UCLA UCSD and downstate SUNY in New York and then a second study is confined to California but we're going to ten or twelve counties in California and looking at both supported decision making protocols and psychiatric advance directives which is a really cool way to give people back agency over their lives if you say if this should happen to me this is what I want to happen so having some some control and some ability to control I think is really really important but in terms of hospitals now I'm Christopher how are we doing here hi this is for professor Sachs you said you haven't been hospitalized for a little since like 82 can you tell me and what you did to keep yourself out of the hospital yeah I actually have a huge amount of resources to help me right so I I think there are three things that kept me being well and what was excellent treatment so both meds once I recognized I needed them and I go to four or five day a week psychotherapy for decades second you know relationships you know to give my life a meaning and a depth but they also serve as another set of eyes if I start slipping and then a workplace that's both incredibly stimulating and also very accommodated so all those things you know going together are sort of what helped me kind of e my grave prognosis and end up you know having a really good and happy happy life I'm very lucky I've also had a bunch of cancer one of my friends who's a neurologist says Ellen for an unlucky person you're very lucky one more question are you guys bringing any awareness to the criminal justice system because as we know so many meant people with mental health are being incarcerated and that's the really sad we audience very concerning to me yeah well our our SDM npad project throughout California one of the outcomes is less criminal involvement so that's one of the things we're studying but it's a really good point I mean people with mental health challenges don't belong in jail they really don't other than medications that like Contras have prescribed you have you ever taken any holistic treatment or CBD or ever gone to like a shaman I've tried CBD but it didn't seem to do anything for me and I've never been to a shaman yeah I've just been very conventional mainstreaming the kind of medicine I am NOT I've not done that that's it okay thank you [Applause]

Channel: USC Gould School of Law

Views: 2,264

Rating: 4.8888888 out of 5

Keywords: mental health, law school, USC, USC Gould, USC Law School, Saks Institute, Elyn Saks, Esmé Weijun Wang, The Collected Schizophrenias, schizophrenia, mental health policy, mental health ethics, mental health law

Id: a_qJ2lSW_P4

Length: 75min 6sec (4506 seconds)

Published: Fri Nov 15 2019