From Stigma to Mad Pride: Fighting for Visibility Podcast
Episode 3 with Noah
Guest: Noah Ohashi
Hosts: Ginger Leopoldo and Rick Wild
Transcript by Rick Wild
TW: Suicidal ideation, suicide attempt, institutional abuse, institutional incarceration
Topics w/ links:
- Introduction
- Comparing attitudes toward mental health in Japan and the U.S.
- Autism, police response, and medical incarceration
- Mi-ae and sekentei: Public life and mental health discussion in Japan
- Living and fitting in the U.S.
- Finding resources for treatment
- Living with disability during COVID-19 lockdown
- Outro
Introduction
[gentle, propulsive mandolin and guitar music]
GINGER LEOPOLDO: Welcome to the From Stigma to Mad Pride Podcast, a collaboration between the Disability and Human Development Department at UIC and CIRCA-Pintig, a community arts and immigrant resource center serving Filipino communities in Chicago. We seek to serve the disability community to de-stigmatize mental health within the context of the intersection between mental health, Asian-American identity, and Asian immigrant identity. When our communities’ stories are heard, mental health stigmas give way to MAD PRIDE.
Good afternoon, everyone. Thank you for being on this meeting with us. My name is Ginger Leopoldo. I’m the Artistic Director for CIRCA-Pintig. ‘CIRCA’ stands for the Center for Immigrant Resources and Community Arts, and ‘Pintig’ means pulse or heartbeat in Filipino. We are an arts organization; we’re celebrating our 29th Anniversary this year. In the past several years we have had this wonderful partnership with Dr. Rooshey Hasnain at UIC, and we have partnered on a great project that is called Silencing Stigma: Reclaiming Life. And we’re looking at mental health in the Asian-American community, and it’s been a great way to get students to be involved in their community through outreach and stories. And we have put these stories together up on stage, and it’s just a pleasure to have you here taking part in a new chapter of the project.
This is a form of activism as well. This is also part of the social justice work that we do and, yes, we definitely want to be able to tell stories that are not often heard, and a big goal and vision of ours is to have the community speak about and create dialogue around certain issues that are important for our communities.
We have decided to take to technology and see how we can have even a broader outreach by creating a podcast and a series of interviews that’s around mental health and the immigrant experience and Asian-Americans and social justice.
RICK WILD: That’s perfect. Yeah. So without further ado, are we ready?
NOAH OHASHI: Yeah.
RICK: We’ll just jump straight into it.
[Intro music]
So Noah is part of our student team working on this project. He’s from Osaka, Japan, but he’s been living here in Chicago for the past couple years to study at UIC. He’s a disability rights and justice activist, the Co-Coordinator of Chicago ADAPT. And he sat down with us to talk about his experiences as a disabled person in the two countries’ mental health systems.
You’ve talked about your experience coming over from Japan as an immigrant to study here in Chicago at UIC and your experiences navigating the healthcare system in the USA versus Japan and kind of the differences in how they treat and and think about cases of mental health. So I was wondering if you could talk a little bit more about that and your experiences coming from Japan?
Comparing attitudes toward mental health in Japan and the U.S.
NOAH: Yeah, for me it’s really like mixed feeling and mixed reaction about the mental health experience in the States because, I think I mentioned about it before but, when I was in Japan I also- my condition was saying I have a depression, I have anxiety, I have a PTSD, I have a suicidal thoughts, and we don’t talk about it all. But when we say like, oh I want to kill myself or I’m super depressed and I feel like I want to kill myself I cannot resist, they were like okay don’t kill yourself on the train or don’t jump off from the building. If you want to die just go ahead and go to the place that’s quiet and don’t, like, distract other people. They actually say those kind of things on the joke hand.
For me, like, saying ‘oh I want to kill myself’ is like a regular conversation when I grow up. I was surprised when I first time met with a therapist. She asked me do you have a plan to kill yourself? or, like, do you want to kill yourself? and I said yes and then I got hospitalized. And I was like um I’m same shape as I have been 18 years living with this condition and why I’m being in the hospital? That was like huge question mark for me, and afterwards I was admitted to the hospital I was notified that in the States if you say those kind of things you’re gonna need to be in the hospital for your own safety. And, like, okay. But at at the same time then I cannot ask for the help because I’m so afraid, forced to be in the hospital. So I don’t know whether it’s good or not.
I feel like I cannot talk about my mental health after I moved here more than in Japan because they have a many laws that protect their own safety. I feel like I need to tell my positive things to the therapist to not to be hospitalized because like I already been hospitalized five times in this two years and- at the psych unit, and it’s not fun. And all the freedom and all the belongings will be- is not there, and I feel like it’s incarcerating me. And I never had those experience in Japan. Like, even though I attempt my suicide multiple times in Japan, they didn’t put me in the psyche, they just put me the anti-depression meds.
I feel like I can reach out for the help at the moment but I feel like at the same times I am doing better because in Japan we don’t talk about, other than suicide ideation, about how I feel as a depression and stuff, and when I say something people say it’s just because you’re weak, it’s in your head, like, don’t say it it’s shame. We have those culture aspect that we shouldn’t tell we’re depressed.
We don’t have a words ‘depressed’. We have a depression, the diagnosis name of depression, but we don’t have a word ‘depressed’. So like it’s kind of hard to say that I’m down. That’s, I think, the English and translating to Japanese I’m down, but we say that we shouldn’t say that words because that makes other people negative and showing the weakness, and that’s not allowed in my culture.
RICK: So it sounds like there’s this mix of pros and cons, better or worse systemic qualities between the two countries?
NOAH: Yes, for the health care provider I feel like U.S. is more scary and stigma- like, health care professional is making individual and society more stigmatized by forced hospitalization or, like, fear of hospitalization or the word psych and crazy is kind of connected and you cannot tell others that if I’m in the psych wards, you lose your cell phone and, like, I need to reach out to other people but I couldn’t because I couldn’t tell anyone when I was in the hospital. And I’m from Japan, so I need help to bring my clothing or, like, stuff. But first when I was in the admission it took 21 days to get out.
I didn’t have any family, I couldn’t tell my friends because I had a culture that I shouldn’t tell those stuff to others. I need to deal everything by myself. Figuring out those kind of aspect was kind of hard for me especially in Japan family takes care of family and not the medical professional takes care of others. So that aspect was kind of like, I feel like I’m getting help but at the same time I feel, like, isolation at the hospital. I feel like those, like, weird culture differences, and I feel a lot of shame on myself. I think that’s like the strongest feeling that I remember since I moved here about my mental health situation.
RICK: So you feel that, even though we have a cultural understanding that mental health cases should be treated and we’re open about that aspect, that there’s still this
dimension of stigmatization that happens in this country?
NOAH: Yes, I think so, and I think the biggest thing is, like, media and a lot of portrayal. Like, the people who have a mental health issues as a crazy or, like, dangerous kind of thing. And that’s creating stigma. But if you add that with the Asian culture it’s like you cannot tell others, but you also have a stigma living in the States with the mental health situation. So it’s like you’re getting two different kind of pressures.
And even my parents don’t know about it – it’s gonna be public, I know – but even though my parents don’t understand my mental health issues and my parents when I first was, like, diagnosed with a major depression disorder, what my parents said was you haven’t tried enough. That was my response: that as a culture that if you try better, you don’t feel like it. Like, you don’t have any efforts to be better person – you’re just trying to be weak.
I think those kind of, like, culture and, like, it’s shame so don’t talk about it to others and, like, try to hide everything. Those kind of aspect is kind of, like, still it’s kind of hard to shift to it, to the, like, different perspective is I think it’s like time processing and, like, learning processing for me.
Autism, police response, and medical incarceration
RICK: Yeah, it’s this really tough situation of these compounding identities, right? And these cultural experiences you’re having trying to to handle how we do things with this baseline understanding culturally from your background that is kind of conflictual, the two things. Though it’s true, of course, we’re still not good in this country about talking about that kind of stuff. We’re getting better, and I would say we are definitely less interior about it than it sounds like Japan might be. We’ve made pushes and initiatives to publicly campaign for these issues, but it’s still very much a work in progress. I really appreciate you talking about this stuff because it’s really not talked about in public.
NOAH: Yeah, and also I have autistic, and when I have a autistic meltdown I cannot verbally communicate with others. And once I was at the downtown, overstimulated, and had a meltdown. That person who saw me called police, and then the police came. And when they saw me they thought I having a psychosis, and they put me to the in the police car and just dragged me to the hospital and I directly went to the Psych Unit.
But I just needed a safe space and a quiet space, and that’s the only thing I can recover. But, like, Psych Unit is loud; it’s not helping me at all. So it took more recovery time, and it’s kind of like oh this person is not functioning so let’s give this person to the mental health psych unit. And those kind of, like, hard to explain part kind of thing is also like individualized American culture that I was surprised how police deal with the situation.
RICK: For those of us who may not be familiar or know much about the experience of people in the hospitals, could you talk a little more about what it’s like being in the psych ward at the hospital?
NOAH: Yeah, basically I been to the psych only for the – not only but – suicide attempt or suicidal ideation or mental health autistic meltdown. Basically they put a yellow gown which shows that there are risked for elope ER. So all the nurses can know that from the gown that this person is a psych patient even though your ICU or step-down unit or, like, for other medication treatment, and then you eventually go up to the psych unit.
When you get into the psych unit other than psych stuff, psych hospital stuff, no other health care provider can go and it’s locked down. So basically you get in and you transfer to the bed and they strip-search, and then they check all the scars to know that, while I’m there, whether it’s safe or not – like whether or not I’m not hurting myself or not. So basically they check and they take off all my belongings, so like, I just need to sign what I had in my bag and stuff and they lock everything down.
And then in my room I usually have a two camera watching me. And also I have one feet distance always another person watching me whether I’m not harming myself or not. And that including when I’m getting shower. When I’m in the bathroom they need to open the door. And watching me all the time, 24/7. And that’s more getting my, like, mental health worse because that’s not, like, human living you know?
So yeah, those experience living like that made me more hard to recover. Yeah, I was really surprised because I…like, you lose the sense of your human kind of thing while you’re there because you don’t have any dignity at all.
RICK: Yeah, you mentioned incarceration. It sounds a lot more like that than any kind of care giving service. It sounds like it really did more harm than good being in that kind of environment.
NOAH: Yeah, but everyone say your own safety. That was like all my question is, like, how this can be my own safety? Like, I feel like I don’t feel safe here, but they’re, like, saying that it’s just to recover for your anxiety or suicidal thoughts – it’ll be good to have the people near me. And, like, yeah but I want a privacy and they’re, like, yeah but the reason we’re doing this because the person in the previous time, a couple people tried a suicide while they’re watching on the video and they couldn’t cut it at the time kind of stuff, and those kind of incident made those kind of high security on self-precaution kind of thing.
That’s their explanation, but still it’s kind of, like, tough to survive there because another thing is if you like have a bad day within the hospital they have a week-old NPO. Basically you get a shot to calm myself down. And basically if you get shot you cannot get out within the five days. So you need to behave well not to get a shot to get out to the hospital.
So basically it’s kind of, like, hard- like, a lot of pressure that I need to be better quickly not enough to cause more harm. And especially- I was at UIC so I need to catch up with the study and everything. And at least they allow me to have a laptop. They said it’s really, like, special to have a laptop. They allow me to, like, contact the professors, and I was lucky that at least I had a laptop for per day one hour. And that was my only lifeline that I could have a communication with others, other than the other patient.
RICK: Hearing about how how sequestered and insular and prison-like it is is even surprising to me as someone- an Asian-American who’s lived in the U.S. basically my entire life. We kind of think of institutionalized incarceration-like conditions as kind of a thing of the past, something we don’t have to worry or think about anymore; that we’ve moved past it in a sense.
Could you talk about a little more about how conditions like yours would be treated in Japan and and how that compares to these medicalized incarcerated environments in the U.S.? Are there places like that in Japan? Are there options for hospitalization in a similar way?
Mi-ae and sekentei: Public life and mental health discussion in Japan
NOAH: Yeah, so it’s interesting: Japanese people have a thing that we called mi-ae – I don’t know how to say in English – we have a term mi-ae or sekentei, like, to look good and try to bury those mental health issues that as a society, and within the family, and within the community. So basically even though you have a symptoms, people try to not to see that. Like, even though they see it they don’t they tried to make a face that didn’t see it. So like, even though your lovers, or your kid, or the neighborhood are really depressed, first of all that the the person who are depressed try not to show those parts because that’s a really shame. Even though they are showing the symptoms, other family or society people are trying to ignore those parts and try to bury it.
No one goes to first of all hospital and as I mentioned earlier if they say, like, I’m really depressed and if they say they want to kill themselves, they just say – it’s like really common thing we say in Japan – is that if we are really common with the train (it’s on time always), and a lot of times people jump off to kill themselves to the train, then the family get sued and they need to pay a lot of money to the train company because it caused a lot of damage to the people who work. So they need to get our money from their family, so we always say that don’t jump off the train. Like, you can be selfish but don’t make more burden to their family. So like, if you want to kill yourself, that’s fine, but don’t jump off the train.
As well as if you jump off from that roof you might gonna kill others, so don’t do it. You can hang yourself anywhere, like, I would recommend here and there and, like, they actually tell you the instruction and stuff. But actually that makes a little bit relief too, like, I feel like accepting the way I feel is ‘okay’ kind of thing. I don’t know whether that’s only me or not, but that’s how our culture is.
Only the thing is schizophrenia, people with schizophrenia, have where they stigmatize because that is really hard for the family to work and protect and bury and, like, hide from society. And if the society or neighborhood find out they have a schizophrenia, people tend to bring family that they did that. That’s why there have a schizophrenia, their kids, son, has a schizophrenia. Or sometimes they throw out from the town because their kid have a schizophrenia or their family have a schizophrenia.
Our country, the Psych Unit is 99.9 schizophrenia. And once you get into the hospital you never get out until you die over there. Also that is showing the Japanese society don’t want to show anyone. They’re afraid that people are different and try to hide those part by putting people in the lockdown unit. And putting a lot of medication and try to show that they’re not aggressive, or, like, they’re not weird by putting so much drug that people cannot get up from the bedside. That’s how our Japanese mental health situation is like.
RICK: It’s interesting to hear how the two countries, there’s a shared stigma. It manifests in different ways culturally, but that stigma remains across borders.
You had talked a little bit about how in a sense it’s a positive that it’s in a way accepted as a fact of life in Japan, that there’s this kind of sense that it’s accepted, but not…you know, it’s counterintuitive. And for us in America very counter to how we would think about the problem of mental health and mental illness.
What would you like to see happen in Japan to change how they approach these issues on a institutional level? Culturally? Are you worried about your family and how, if you were to share this with them, how they would react to it?
NOAH: Yeah, that’s I think that is the difficult thing. I believe that I still remember when I was in high school when I had a first symptoms and had attempt suicide, my parents sent me to the different prefecture’s counselor because they were afraid to show neighborhood or other community that I have a symptoms and that’s really shame. So they sent me to three hours training, like everyday for the counseling. But that made really myself ashamed too, like, kind of sense of, like, I am, like, different and I shouldn’t be with my family. Since then I never talked about my mental health with my parents or siblings.
Also, like, a lot of term that we have in the U.S., we don’t have. I think that is the hardest part because we are not good at- first of all our culture are not good at telling our feelings. We don’t have a lot of the terms of expressing our feelings. I think that’s also the hardest part of the mental health in our culture because we don’t have so many ‘feelings’ words. So, like, for example I’m happy, I’m sad, I’m frustrated, I’m annoyed, I’m chill, or, like, those kind of words that we have, but that’s it. And they don’t have so much depression or, like, negative words other than happiness or anger. And even the happiness or anger, we have a culture that we need to be politely express our feelings.
So it’s gonna be hard because depends on whether their age is older I need to use different term, and if they’re ages younger I need to use different term. And depends on the age we need to use a respectful words. So like, when I’m- even though I’m an expressing my feelings to the doctors, or the therapist, or, like, my family, I need to use a polite-feeling-way term. It’s just because I don’t know how to explain in English. They don’t have in English that words. It’s all so difficult to translate it. But, yeah, it’s so difficult because when you try to use polite way to express your feelings, it will be so weird. And it’s not like you’re actually expressing your feelings, you’re just telling in the polite way and it’s not true feelings. So I think that’s the biggest thing that is, like, you cannot talk my own feelings to my parents itself. And I think that is more hard part.
Living and fitting in the U.S.
RICK: You had this culture shock really coming and living in the U.S. How long have you been here?
NOAH: When I was 16 I came, went to Colorado for a year and I came back. And since two years ago I moved to Chicago from Japan.
RICK: So you’ve been here a couple years now. You talked a little bit about the language barrier and how conceiving these issues just mentally can change depending on the language you’re speaking. How has it been for you adjusting to this sense of conceptualizing yourself as a bilingual Japanese American person living in the U.S. for a little bit now? Do you have a sense of pride?
NOAH: Yeah I feel like I moved- like, I’m also mixed as a background as my parents are mixed. Both my parents are mixed, so I have a multiple race within my family. And it’s so interesting that my family have a different culture within the Japanese culture. So everyone say I’m different outsider when I was in- like, I was growing up in Japan I was seen as outsiders. We had term outsiders but, like, bullying words. And I was growing up with that words so I thought I’m like outsider.
So if I go to U.S. I feel like I’m normal person. Like, I can be fit into this society but then I moved here and I was outsider of U.S. I felt like I’m outsider when I moved to the U.S. And the first thing I remember is I was crying just after a week after I moved to Chicago. I felt like I have no place that I fit in. Like, I didn’t fit into Japan. My roots is also Filipino, so, like, I went Philippines a couple years ago but I didn’t fit there. And also I have a Jewish background too so I went to Jewish but it’s not fitting.
Like, I have nowhere to fit. That kind of stuff made really hard to find my own identity. But by studying Disability Studies, I’m, like, disability identity is my perfect fit because that’s not, like, asking whether, like, Are you from Japan? or you’re from- What’s your background? or that What’s your heritage? or anything. You can be who you are, and you can be proud of who you are, And that also made my other identity more clear that no matter, like, who said what, if I feel I am Asian I can be proud of my Asian identity. And that was my huge shift change of my life.
[Music]
After I studying at the UIC for, like, two semester I start having more confident and pride of myself that I’m okay with being Asian-American identity and I’m okay with having a disability identity. That made a little bit the health car/mental health part too that I’m okay being depressed, and they have other people who are having same. We call Mad pride, that people saying they are okay way they are. They don’t want a cure for it. And I think that those kind of understanding and interacting with, I say own people, but, like, shared experience and shared identity is the most grateful thing that I came here and could experience. And that is kind of like biggest my safety network that I have for not being hospitalized and stuff. Or even I get hospitalized they’re willing to come and, like, take care of me too. So like, that’s the…yeah, biggest thing that I gained in this two years.
Finding resources for treatment
RICK: What advice would you have for people who are struggling with issues surrounding mental health, people coming from different countries trying to adjust to life and the new culture? What resources are available to them?
NOAH: Oh my god, that’s difficult question because I’m still figuring out too! Because I still remember that first semester within a couple weeks I was really down, and one of the DHD courses’ TA is like Yes, you have a community but I think you need to see a counselor. And she guided me to the Counseling Center at the UIC. And when I first went there they said they cannot see me and I’m like Why? and the counselor said because your health condition is complex and also you’re from different country. So we need to have an interpreter, and that would be better if I go to hospital. I was like Okay I guess the free Counseling Center is not available to me.
So they referraled me to the NPI which is Neuro-psych Patient Institute at UIC. So I go to UI hospital and I still had a hard time navigating with the therapist because she was really judge-ful that I- some of the PTSD or experience is the culture thing and that’s like- people say that’s trauma but I don’t feel that’s trauma. Like in Japanese society father is the strongest person and we need to follow what he says. And that’s not, how do you say, abuse or anything. But for me my perspective is that’s norm, like, for us. But when I talk about it she makes a face that I’ve been through huge trauma and I’m like No that’s not trauma at all.
And so like, those kind of culture differences is, like, kind of hard to navigate. I asked whether they have a Asian counselor, and now I met counselor who lived from Korea. And so she knows Asian country culture, but- even though we were not same country. So like, it making a lot of better processing. And also the doctor changed and if I have some term I cannot explain in English she call interpreter by phone and I can get interpreter any times.
And I think that knowing the rights that I can change and ask for the…maybe they’re not available, but having the same kind of culture toughest. Or like, knowing that I can ask for the interpreter. Or like, it’s okay to ask help within the outpatient clinic and it’s not a shame. And I think those kind of things are really essential for the people who coming from the other country, and understanding resources is to understanding their rights as a patient in the U.S.
It’s really hard. I learned in the painful way, but I’m still, like, navigating how to protect myself from the, like, more harmful way. But like, also I figure out the best way is to be who I am and to say I cannot tell this because there have no English exactly to translate it to English and I need a professional to actually do this and can I ask the interpreter. Knowing that it’s okay to do, like, that making more better communication with the mental health provider, and that making a less stigma to myself.
And having a different diagnosis from the mental health provider because first they misdiagnosis me because they didn’t understand what my feeling is and what I was talking about it. I feel like having a…like, if you’re having the different diagnosis it’s gonna be different medication, and that makes more hard. So like, knowing you’re having an interpreter is I think it’s really strong key essence people who come from different country.
Living with disability during COVID-19 lockdown
RICK: So just to wrap up then, so we’re in the midst of this unprecedented kind of situation right now, the shelter-in-place with COVID-19. How are you managing right now?
NOAH: [Laughs] So it’s really hard since I used to have therapy for once a week and doctor once a month. But because COVID-19, UI Hospital Psych Unit got shut down, so I don’t have a mental health provider right now. And also because I need a physical assistant as well, and the first week was fine, but in the end on I think last Friday or so – last, last Friday? I forgot – the state they decide to do self-shelter order. The UIC encourage student living the dorm to go back home. So basically my Personal Care Attendant who are also UIC student went back to suburb, which it’s hard them to every day come and help me out. I couldn’t get out from the bed from Friday night to Saturday morning because I had no one that could cover their shift, which was kind of like fine since, like, it was weekend and I wanted to sleep in a lot. But still, like, I was afraid how long this gonna be and what can I do for getting help.
And especially, like, who come from the different country, the resources is a little bit different. We don’t get traditional resources or like a support as American citizens. So those part getting contact with the other people who live in the Chicago who are immigrants or, like, non-citizens to get reach out and asking those questions and asking the disabled lawyer who know more resources and, like, how we can go.
And also the Equip for Equality is doing super great-ful thing, and they are negotiated with the DHS. And I also reached out with the DRC at UIC and they post the job description for it. And so now I finally got the people who I need for the help. And I think that made a lot of relief of, like, living within this shelter situation.
But on the other hand it’s interesting because everything turned to be online. And I don’t know why, but for me it’s more accessible because I don’t need to physically need to be there so that my body is not, like, tired or having fatigue so much. And actually I can attend more events and be more productive. So like, it’s kind of also mix feeding that until, like, figuring out what’s what kind of resources I have was hard. But once you know it it’ll be kind of like gradually you getting adapted. And also at the same time you can attend more. Like, you have more access that you haven’t had, I haven’t had, for before COVID-19.
So overall I feel like it’s better for me. [Laughs]. I don’t want to say it’s better for me. I want to finish. I wanted to graduate. I was like, the biggest thing is that graduation got cancelled was the biggest thing that was, like, sad. But yeah, I want COVID-19 to go away. But knowing that we can, as a human being, we can still adjust and go seek for different ways that we might can do, that’s gonna benefit disabled people and disability community. And knowing is, I think, a good thing within the COVID-19 situation.
RICK: All right well that’s a great note to leave on I think. Thank you so much for talking about sharing your experiences today.
NOAH: Thank you.
Outro
[gentle, propulsive mandolin and guitar music]
GINGER: Thank you for listening. From Stigma to Mad Pride is a podcast project hosted by Noah Ohashi, Miriam Mercado, Rick Wild, and Ginger Leopoldo. Join us in our twitter chat at #AAMADpride. For more information, please visit CIRCA-Pintig at circapintig.com and UIC’s Disability and Human Development program at ahs.uic.edu.
