Friday, July 24th (USA) at 9:00 pm CDT / 7:00 pm PST / 10:00 pm EST and July 25th (Philippines) 10:00 AM

Watch: https://www.facebook.com/watch/live/?v=1168729606860063
https://www.facebook.com/circapintigtheatre/live
https://www.facebook.com/events/2494453600657150/

Raising Voices: Stories from the Homefront and Beyond – a virtual open mic with artists from the Philippines and the US.

Featured artists from the Philippines:

*Mae P. Paner (Juana Change) performing an excerpt from “Tao Po”
*Ariel Bernardo Jebulan, Mary Abigael Estacio, Ann Murray Tan, Rielle Donado – Musicians for Peace
*Ann Murray Tan- Liga ng Kabataang Propagandista
*Max Santiago – Ugat Lahi Artist Collective
*Rody Vera – Independent Playwright/Director/Actor

Featured artists from the US:
*Maya Arcilla- Malaya Chicago-MW
*Love Jordan – Gabriela Chicago
*Anthony Bacay- Migrante Chicago
*Ginger Leopoldo- CIRCA-Pintig
*Cesar Conde- Independent Visual Artist

We are storytellers, poets, singers, musicians, spoken word and visual artists dedicated to social justice work.

We call for solidarity and unity among cultural workers in upholding our duty to defend human rights, democracy and fight for social justice.

We challenge cultural institutions and the arts community to stand with us in condemning injustices against our people.

We call on the arts community and fellow citizens to continue to stand against all form of government repression in the Philippines and here in the US.

#JunkTerrorLaw
#ArtistsFightBack
#artistnotterrorist

Join us as we take action with our community members through this virtual open mic event.

This event will be live streamed on this page so please follow our page!

FEATURED ARTIST: RIELLE DONADO

Friday, July 24th (USA) at 9:00 pm CDT / 7:00 pm PST / 10:00 pm EST and July 25th (Philippines) 10:00 AM

Raising Voices: Stories from the Homefront and Beyond – a virtual open mic with artists from the Philippines and the US.

[aiovg_video id=333]

In honor of Pride Month, CIRCA Pintig is presenting a virtual stage reading of Noel Alumit’s Mr. and Mrs. La Questa Go Dancing on Friday, June 19th at 7 pm PST / 9 pm CDT / 10 pm EST

The reading is FREE & OPEN to the public, rsvp at this link: https://www.facebook.com/events/305934500439294/

WE URGE YOU TO PLEASE SUPPORT, your tax-deductible donation to CIRCA Pintig this month of June will benefit APAIT’s Housing Initiative, Auntie Mele’s House, for homeless LGBTQ+ individuals:

Many homeless individuals served have limited resources and rarely have access to basic necessities such as food, shelter, and clothing. APAIT’s Housing Initiative, Auntie Mele’s House aims to provide safe, affirming spaces that welcome these communities. With these donations, APAIT will be able to furnish the homes with cookware, appliances, bedding, and more. By providing these basic housing needs, we can make  Auntie Mele’s House into a home.

You may also make your donation directly to APAIT’s Housing Initiative, Auntie Mele’s House, for homeless LGBTQ+ individuals by making a tax-deductible donation at: https://www.apaitonline.org/donations

or by purchasing items on their Target Registry: Tinyurl.com/APAITCharityRegistry

***

Mr. and Mrs. La Questa Go Dancing
Friday, June 19th at 7 pm PST / 9 pm CDT / 10 pm EST  

About the Play

Noel Alumit’s Mr. & Mrs. LaQuesta Go Dancing, a one-act play about love and healing. Jay and Lori La Questa, a middle-aged Filipino couple, are having their annual dance party. Mixed with food and their usual rhythmic gait through tango and cha-cha, they gather friends as they always have to celebrate life and honor their only son, Boyett. To the outside world, the dance party may seem celebratory and candid but to their inner selves, it is a night of healing, reconciliation, and catharsis from an experience that altered their lives forever. And this they would do in a way they know best – through dancing. As they dance the night away, they find themselves retelling stories about their son, both bitter and sweet, finding new meaning from a past that continues to haunt them in their search for peace and acceptance.

Written by Noel Alumit, an LA-based an award-winning playwright and novelist famous for his coming-of-age novel Letters to Montgomery Clift, the play intimates hidden emotions about gender and sexuality, not your typical dinner table talk, especially in Filipino American households.

Featuring: Rommel Rojas, Ginger Leopoldo, George Infantado

Directed by Giovanni Ortega

Production Support: Noah G Ohashi

Colloquy with the Playwright & Artists will follow after the reading

RSVP: https://www.facebook.com/events/305934500439294/

Part of CIRCA Pintig’s Raising Voices Stage Reading Series.

A Statement of Solidarity Against the Philippines’ Anti-Terrorism Act of 2020 from CIRCA-Pintig,USA
June 12, 2020

We from CIRCA-Pintig commemorate the 122 years of Philippine Independence at a time when the whole world is experiencing a global health pandemic brought upon by COVID-19.

However, the greatest threat facing Filipinos in the Philippines is more severe than the virus that has killed thousands of our kababayan due to lack of government support and corruption from officials who presumably provided assistance to the neediest people impacted by the pandemic. The Anti-Terrorism Act of 2020 is a bigger threat to the lives and civil liberties of the Filipino people.

This impending anti-terrorist legislation recently approved by Philippine Congress provides a platform to the Duterte administration to continue to exercise the silencing of dissenting voices who criticize his failure in addressing the ongoing healthcare crisis and the spiraling social, political, and economic crisis in the country. A recent June 4 report released by the United Nations High Commissioner for Human Rights attested to the fact that since 2016, thousands of Filipinos have been killed at the hands of the police. This legislation will create a new Anti-Terrorism Council (ATC) who will be empowered to define what constitutes “terrorism,” order arrests without warrants, and detain individuals for mere suspicion of being involved in terrorist organizations. Thus, this bill is tantamount to exercising martial law as it concentrates an enormous amount of power to the Duterte administration, allowing it to usurp judicial power, make arbitrary arrests, and extend the period of incarceration for individuals who are suspected of promoting or inciting terrorism. The legislation exacerbates state-sanctioned violence by dissolving accountability for law enforcement, increasing surveillance of suspected individuals, deploying tactics of torture, and creating new categories of criminal offenses. As a proponent of the anti-terrorism legislation, Senator Vicente “Tito” Sotto admitted during his deliberation that once this bill becomes law, there is no need for martial law to be declared. It is clear that this bill was meant to target people and organizations who advocate for social justiceand change.

As a community arts organization involved in social justice issues here in the US, we echo the call to dismantle state-sanctioned violence and work toward genuine social, political and economic change both in the US and in the Philippines. We call on our Filipino American community to be one with us in opposing the proposed Philippine government’s Anti-Terrorism bill and to stop the red-tagging of activists and organizations. We call on the US government to stop the $2 billion sale of US weaponryto the Duterte administration. We call on the Philippine government not to use the people’s tax money to buy arms instead of supporting their frontline workers. Every dollar that the US receives from this weapons sale is a drop of Filipino blood from those who will lose their lives as a result of the arms escalation.

#junkterrorbill #activistnotterrorist #supportstruggleforrealchange

 

 

 

 

---

While we share struggles on many fronts, we acknowledge as part of the larger Filipino-American community that we should do more in combating biases and anti-blackness within our own immigrant communities.

The deaths of black and brown people at the hands of the police recalls the thousands of Filipinos who have suffered and died at the hands of Philippine police and military.

As community artists, we have and continue to use the arts to express our outrage of unjust systems.

#BlackLivesMatter #CircaPintig

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:

1. Introduction
2. Comparing attitudes toward mental health in Japan and the U.S.
3. Autism, police response, and medical incarceration
4. Mi-ae and sekentei: Public life and mental health discussion in Japan
5. Living and fitting in the U.S.
6. Finding resources for treatment
7. Living with disability during COVID-19 lockdown
8. 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.

From Stigma to Mad Pride: Fighting for Visibility Podcast
Episode 2 with Hailee

Guest: Hailee Yoshizaki-Gibbons
Hosts: Ginger Leopoldo and Miriam Mercado
Transcript by Miriam Mercado

TW: bullying, race denial, institutional abuse, racism, hate crimes,

Topics:

1. Introduction and History of CIRCA-Pintig
2. Mental health experiences and shifting from the medical to social model
3. Mad pride and psychiatric labelling
4. Fighting stigma as a “white passing” mixed race person
5. Resources for Asian Americans exploring their psychiatric identity
6. Talking about disability outside of academia
7. Managing mental well-being and racism during the COVID-19 pandemic
8. Outro

 

Introduction and History of CIRCA-Pintig

[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.

Hi Hailee, I’m Ginger Leopoldo. I’m the Artistic Director for CIRCA-Pintig. CIRCA-Pintig is an arts organization that’s based here in Chicago. We are celebrating now our 29th Anniversary. Actually, this is kind of exciting times for us as we began as a group of community members – mostly Filipino Americans in our teens and our early 20s – and we wanted to find an outlet or a way to learn about our history and kind of process our identities. One of the first productions that we began with was a piece called “America is in the Heart”. This was a novel that was written by Carlos Bulosan, who was an immigrant that wrote about his experiences. He came in the 1930s, and he expressed about the kind of isolation and some of the abuses that he experienced coming to America as an immigrant during those times. In Seattle there would be signs that said, you know, “Absolutely No Filipinos or Dogs Allowed”. And it was through his writing that he was able – and his poetry – that he was able to kind of process and even share with others what his experiences are.

And so that really brought our organization together, and we had always been one that pride ourselves as ATORs. Those are: Artists, Teachers, Organizers, Researchers. We actually were thinking about it yesterday and we thought…AORTAs! Add on Activists as well. It was through the arts that we show our activism. Most of the topics we cover are around social justice issues, and the past few years it’s been around healing and social justice.

So It was back in 2014 when Dr. Rooshey Hasnain — professor at UIC with DHD 420 was the course that she had us partner with. We were able to work with her students and lead them in theater workshops and writing workshops and develop the interviews and the stories they collected from community members into scenes and monologues. And so last fall we had a production called “Silencing Stigma: Reclaiming Life 3.0” because it was our third set of the series. And now with our capstone scholars, we’re just very excited that we can have this new way of collecting stories and continuing the conversation around mental health and silencing stigma. Our title for this project is “From Stigma to Mad Pride”. We’re just excited to continue to do important work such as this, which is to continue the conversation around topics that aren’t often spoken about. So thank you.

HAILEE YOSHIZAKI-GIBBONS: Yeah, thank you for having me. I’m really excited. I actually used to teach the capstone course, so I’m excited to be working with the next generation of disabilities, you know, scholars and activists. It’s very exciting for me as a former professor of the class.

GINGER: Great! Well thank you. We’re quite honored then it’s been wonderful to be a site for the students because, again, most of our work is, you know, in the process of whether we’re working on a new production or doing community work and engagement through workshops. And so it was really important when we began with our group of capstone scholars to kind of find out what was most of interest to them as we had a little bit of flexibility to mold it to what would be a best fit. And it really has kind of propelled our way of organizing and taking hold of our social media and continuing the course work that we’re doing with DHD and on mental health. So it’s really quite exciting to make use of other resources too, like City Bureau and StoryCorps – the community partnerships and resources that are available to us.

HAILEE: Yeah, that’s awesome.

GINGER: Miriam will be kind of taking the lead with the interview questions. I will let Miriam go on ahead and take over.

MIRIAM MERCADO: I’m Miriam, and I’m going to be doing your interview today.

HAILEE: Nice to meet you.

MIRIAM: The first question is a pretty simple one, and it is just, if you want to talk about your background, your name, your identity, or anything else.

HAILEE: Yeah, my name is Hailee Yoshizaki-Gibbons. I am a PhD candidate in Disability Studies with a concentration in Gender and Women’s Studies at University of Illinois at Chicago. My research looks at the intersections of aging and disability, and I’m particularly interested in dementia and dementia care and applying aging studies and disability studies lenses to the experiences of people doing care work, and then also receiving care work, and the kinds of interdependencies that develop.

I identify as a mixed-race, white and Japanese, woman – white passing. I also identify as disabled. I have a number of diagnoses, which we can talk about the complexity of diagnoses later, but I do identify – depending on the day, I might describe myself differently – but I do identify as someone who has a mental or psychiatric disability. I also identify as queer and, yeah I think that covers kind of my- a brief overview of my background. You know, when you’re a doctoral student it’s hard to not launch into a, you know, a thirty minute long tirade of all your work. But yeah, that’s kind of a basic summary of who I am and what I do.

 

Mental health experiences and shifting from the medical to social model

MIRIAM: And so, the second question is: What are your experiences with the intersection of being Asian American and the mental health system?

HAILEE: Well, I think first, it’s important to acknowledge that as a white passing person I experience a lot of privilege in the mental health system. More privilege than people who do not pass. So I want to start by acknowledging that. But I think in terms of mental health, my familial culture growing up was really to not talk about any issues related to mental health. There was a lot of silence.

I learned as an adult that my father, who was Japanese, experienced a lot of trauma in his childhood. But I learned that from my mom, and again, like I said, as an adult. It was never something my dad discussed with me or any of us, and I know that he had a number of mental health issues arising from that trauma. And he also actually worked as a fireman which I think furthered a lot of that trauma in terms of seeing death and really difficult situations.

But yeah, that was never discussed. And it wasn’t until I was I think in high school. I was talking to some of my cousins, and I don’t even remember who, you know, “admitted” this, but someone mentioned an antidepressant they were taking. And then a bunch of us are like “oh I’m on this antidepressant” or “I’m on this medication”, and it was kind of a surprise for all of us that, oh wait we all are going through something that we haven’t been talking about that we didn’t know. We thought we were like alone in this or that our family was unique in this. But it turns out like our entire family has had various experiences with mental health and the mental health system. And it wasn’t until we were much older that we started more openly talking about those issues and our experiences and how we identify.

MIRIAM: How has your mental health identity shifted to Mad pride? Do you have a specific moment that changed your perspective of your mental health situation?

HAILEE: Yeah, when I was younger I definitely embraced what we call the Medical Model of Disability, which understands disability as an individual problem that needs to be fixed or rehabilitated or cured as much as possible through medical intervention. And I definitely embraced that viewpoint of my disability. I welcomed the various diagnoses I received. I was eager to somehow “cure myself” or “recover” from the issues I was going through. I was very hopeful that there would kind of be an end to my mental health issues. That I would basically eventually- I would figure out the right balance of medication and therapy and then that would be it. I would be finished. I would emerge, you know, a new person. And so yeah I really- when I was young I really embraced that. I really wanted…I wanted to be basically free of all the mental distress I was experiencing.

And then as I was getting older I started to realize that the way my mind works is just the way my mind works. And it doesn’t have to be pathologized. It’s just different from some other people. I experience my thoughts differently. I experience emotions differently. and that’s, you know, that’s okay. And instead of trying to change that, I started to really, not only accept it, but eventually even embrace it as something that, you know, makes me unique but also makes me part of a community.

And so now I very much more look at my disability through more of the Social Model lens, you know, where we understand disability as a social construction. What is it about the way I express emotions or the way I experience the world that is pathologized by medicine? And also, what are the gifts of going through the world in a different way? And what are the gifts of experiencing emotion differently? Or having different ways of thinking about things? And so that’s really kind of been my shift from more of a medical focus to understanding myself as a madwoman, as a part of a community, as part of not only a mental health community but a larger disability community. It’s been really I think helpful for me, in terms of, instead of trying to constantly “fix myself”, I can embrace who I am and how I move through the world in a whole new way.

 

Mad pride and psychiatric labelling

MIRIAM: So earlier you also mentioned that you’re a Ph.D. student in Disability Studies. And so I was wondering kind of, from that perspective, if you think there’s a better way, or if there’s anything lacking within Disability Studies, and how Mad studies or Mad pride can be better incorporated into the curriculum.

HAILEE: Yeah, so in Disability Studies, which emerged out of the disability rights movement, we know that there has been historically a bit of a hierarchy in which people with physical disabilities, especially in the early years, received far more attention, more prestige. People with- who identified as mad were less included in our movements. People with intellectual disabilities as well were less included. So that’s been something that I think has been kind of a work in progress. And I should add also that it’s not even just about disability. Of course, also you know, white men – their voices were more privileged than women and people of color and immigrants. And so I think the field is evolving a lot and that’s really great, and we have more and more diversity within the field. Which is amazing.

I do still think that sometimes madness can kind of be pushed to the side in some cases. I think there are some really exciting exciting work and activism being done trying to bring Disability Studies and Mad studies together, which i think is really important. You know, I think they do need to remain in some ways distinct fields because they have distinct ways of understanding disability and madness, but there’s also so much room for partnership there and for collaboration. And so I think that’s really important.

MIRIAM: Thank you. So going back the different diagnoses that you have had. So how has that kind of affected your life? And how did you feel when you finally got your diagnosis?

HAILEE: Yeah, I’ve had I think maybe five or six different diagnoses throughout my life.
At first I really embraced these diagnoses. I thought that they were kind of like the answer. Okay, now that I know what’s wrong I can start addressing it. Then through time, my diagnoses are shifting. They were changing. I was getting different diagnoses. I was getting diagnoses I sometimes didn’t agree with. And I started to realize that in many ways while, you know, while based on a psychiatric system of medical care, these diagnoses are also socially constructed; and that the fact that my diagnoses were shifting demonstrated how socially constructed they were.

My current diagnosis, which is bipolar disorder type 2, I do sometimes use that to describe myself. I’ll refer to myself as either, you know, a person with bipolar or even like a bipolar woman depending on kind of where I’m at. Or other times, I won’t share my diagnosis because diagnoses are very complex and also very personal. I do think that diagnosis in some ways makes sense for me. It is a way to kind of communicate with people how I move through the world. But then there’s also a lot of really negative stereotypes about people who are labeled with bipolar, and so that, you know, sometimes has become problematic for me, which is why I’m sometimes more guarded with sharing my diagnosis.

But yeah, I think my my thinking about diagnosis has really changed throughout my life whereas at first, you know, I thought okay this is a solid objective answer; this is what’s “wrong” with me. And now I see it as basically a way that I can access the therapy and the psychiatric care that I need, but also something that I take with a grain of salt, recognizing that it does not define me completely and that in some contexts it actually can be problematic to focus on diagnoses. And so I will use it at times to describe myself, but then other times I’ll take more of an approach of saying “oh I’m a disabled woman. I’m a bipolar woman” – taking more of the Mad pride or Disability pride approach to describing myself.

 

Fighting stigma as a “white passing” mixed race person

MIRIAM: So the next one is: How has your Asian American identity affected your mental health?

HAILEE: Well I have struggled a lot with my Asian American identity as someone who is white passing. I actually did not realize – when I was growing up, everyone always told me I look like my dad – and I did not realize that I would be read as white until I went to school. That was like a very big shock for me. I still very distinctly remember being confused when I would say that I was Japanese or part Japanese and my white classmates would tell me, “no you’re not”, like “you’re lying”. And that was very painful for me. And I would continuously try to assert, you know, I have a white and Japanese identity. And my classmates when I brought that up – like I said, they would accuse me of lying. Sometimes they would, like, slant- make their eyes slanted to mock me. They said this chant that was, like, mocking of Asian culture.

And so I did mention it to my dad, and my dad basically just told me to keep my head down and to just not talk about being Japanese anymore. And I know that he was basically trying to help me, like, pass to get through it. But at the same time that was very painful for me. For many years I didn’t know how to talk about being Japanese. I didn’t know if I had any right to talk about being part Japanese. And it was just a very confusing and difficult time.

And then as I was getting older, I started meeting other mixed-race people because before- I grew up in a very white town so basically the only mixed-race people I knew were the people in my family. As I started going to college and then graduate school and just working I started meeting more mixed-race people, and I started realizing Identity is a lot more complex than just how you’re read or coded. And yes, while I do experience a lot of privilege as a white passing person, there also- I can have my identity as multifaceted. I don’t have to reject the Japanese side of me. I can embrace that. I can claim that.

And I was actually very surprised- when I came to Chicago, I was very excited because, you know, there’s a significant Japanese community in Chicago. And the very first time I went to an event at the Japanese American Service Committee I was very nervous. I was very stressed out. And even though people of all cultures go to those events, I was just worried like: would I be accepted as a part Asian person, as a part Japanese person when I pass as white? And I was very shocked to find that everyone was so welcoming and supportive. And, you know, a lot of people explained like, “Oh a ton of us identify as mixed race,” and it was just such an affirming [thing]. I remember I went home and I just– I just cried. Like tears of joy, but also tears of grief after so many years I had to struggle with this alone. And for so many years I had to hide this part of my identity from people. Like in college I really only talked to my friends about my Japanese identity because they were the only ones that were really accepting of it.

So yeah, in some ways it was a painful experience growing up but then an affirming experience as I’ve gotten older. And I’ve connected more with the Asian-American community in Chicago – in the Japanese community, especially.

MIRIAM: And then you mentioned the white passing. Does that influence how you access mental health within the mental health system?

HAILEE: I think it does because — you know people of color, of course, are not treated as well in mental health systems. And so by being white passing I can, I think, probably access better care, access care quicker. Of course I have other identities that mediate that experience. So, for example: like, when I was in college I had never- I had only ever been to like a court-mandated therapist, and I didn’t really know how to navigate the system. I was low income. And at first, I thought like I could only get a certain number of sessions and then I would be done because my insurance wouldn’t pay for it anymore. But my- I had a great counselor who was great at working with first-generation college students and low-income students. And he helped me fill out all this paperwork to get free counseling basically the entire time I was in college – to get free psychiatric care. And so yeah. That was really helpful, but I do think that white- you know, being white passing definitely gives me a privilege.

At the same time I’ve had really varied experiences with therapists when I’m talking about my Asian American identity. I have found that therapists of color, whether they’re Asian or not, have been extremely supportive. They understand the ways that I’m struggling. They understand the grief I experienced having to deny part of my identity for so long. They understand how I’m trying to navigate acknowledging the privilege I have while also not denying my complete and full identity. And the ways that I am like trying to navigate being parts of multiple cultures and being parts of multiple communities

So those therapists have been very understanding. very affirming, again, sometimes in ways that, like, surprise me. Especially early on, I would be very afraid of telling my therapist: “I identify this way and I’m struggling with this” because I just was worried they would be like “you’re making an issue out of nothing”. And I unfortunately- I did find that with some white therapists – not all, but some – they really did kind of confirm a lot of my fears. They would say things like “well you do look white,” or they would say “I had no idea,” or they would look really hard at me trying to find Japanese traits, you know, in my face. Which is kind of a common reaction I actually have gotten from white people. They’re trying to look for the otherness, I guess, in my appearance. But anyways, after those kinds of reactions of like being dismissive or- I just kind of quit talking to those therapists about my racial identity, which was harmful for me. I needed to talk about it.

And you know in Chicago specifically, I’m on like the University insurance system and so I don’t really have a lot of choice in the therapist I receive. And I am very fortunate that I had some wonderful therapists of color who really were supportive and helped me process everything I was going through. But I also had some white therapists who really did a lot of harm to me by not being supportive. By being dismissive. By not creating a space where I felt safe to discuss being mixed race and what that meant.

 

Resources for Asian Americans exploring their psychiatric identity

MIRIAM: So do you have any sort of message for the Asian American community who don’t have good access to mental health? Or those who don’t go to the mental health system because of the stigma within the Asian American community?

HAILEE: Yea, I think it’s so hard to overcome stigma especially when that stigma might be rooted in your culture or your community. And I think, you know, all communities of color struggle with this. Albeit in different ways of course. I think what was helpful for me was to just start trying to attend events where, you know, there were other people who identified as mad, or, you know, having a mental illness, or disabled. And the thing about those events is you can actually kind of go in very stealthily because 1) a lot of us pass as non-disabled; like when I’m walking down the street I’m not read as disabled, and 2) like no one is asking you like Wait a minute: Do you belong here? How do you identify? What’s your disability? Everyone is welcome regardless of your disability, or even if you’re non-disabled.

And so you can really attend those events without kind of going to that dramatic step of saying “I’m struggling” or “I’m in distress” or, you know, “I have a diagnosis”. And I think that’s like a really good way to start easing yourself into thinking about who you are and how your mind works and the kind of resources you want to access. Once you’re in those communities, you know, that’s when you can really start connecting with people, and I have just found that’s, you know, what’s most helpful in terms of figuring out what resources are there. How can we navigate these systems, which a lot of times are broken systems? How can we get the most out of the limited resources we do have? And so yeah, I think that’s a really great first step.

I’ve also just noticed there’s been a lot of wonderful events that are focusing more and more on Asian-Americans and mental health. I was very honored to be on a panel a few years ago about Asian-Americans and disability at the Japanese American Service Committee. And I have just noticed that there’s more and more of those events happening which I think is so wonderful. And so I really encourage people to just attend those events. And yeah. I mean it’s so hard but just trying to connect with others who understand what you’re going through is so helpful and it’s so empowering. And so, even though I understand it’s so hard to overcome the stigma, I just really encourage people to try and reach out and make those connections because I think in the end community is what protects us from stigma. Community is what empowers us and helps us embrace who we are.

 

Talking about disability outside of academia

MIRIAM: So you’ve done a study with your sister where you both talk about how your disabilities have impacted your relationship. I was wondering if there was ever a time when, given your Disability Studies background, you try to let your sister figure out stuff on her own? I guess what I’m asking for is advice because sometimes I’m in situations where I don’t want to come off as if I “know better”. How do you balance this dynamic?

HAILEE: Yeah that’s a great question because, you know, we often point out in Disability Studies that even though as many as 20% of people in the United States have a disability, a lot of people don’t identify as disabled. They don’t talk about their disability. It’s not a part of their identity. They may acknowledge “Oh, I have a medical condition”, but they haven’t incorporated it as part of their core identity. And so that can sometimes make it challenging because, you know, in Disability Studies we have this very specific way of looking at disability; of trying to empower disabled people; of engaging in a lot of activism to make the world better for disabled people. And you have to, like, understand that not everyone is there yet.

There’s just so much stigma and shame about disability. Disability is so stigmatized in our culture that it’s just very hard for a lot of people to get over that initial – I guess you could say – bump in the road where everything and everyone in our society is telling you “you’re not normal if your disabled”, “you’re less than if you’re disabled”, “you’re not fully human if you’re disabled”. And so I think it can be really hard for a lot of people to overcome that. And again, I just encourage people who may be thinking that they might want to explore having a disability identity to attend, you know, disability community events. I think that’s one of the best ways to explore it. But yeah, I think it can be difficult to navigate having one perspective on disability and then other people have a very different perspective.

A lot of my research involves older adults and people with dementia who 1) may not have been told they have dementia or understand they have dementia. They, a lot of times when old people acquire disability later in life they don’t identify as disabled. They understand their disability is just part of old age. And so I have had to be in a lot of communities where they had a very different perspective on disability than I did. And I think you know the best thing you can do is you can always affirm their perspective. We do have a very powerful medical system, you know, and our culture is very medically based. So kind of affirming those perspectives while also, you know – sometimes I just try to you gently mention for example, “oh did you know some people actually embrace their mental health and their mental illness diagnosis and they incorporate as part of their identity” or “oh did you know that some people look at disability this way.” And some people might react really positively. They’re interested. They want to learn more.

And then other people might not show a lot of interest. And at that point I think it’s important to just kind of respect where they’re at and, you know, hopefully you have planted a seed. But you really have to just kind of let people come to the identity and the community on their own. But maybe with some gentle guidance from you, but you know we can’t make people understand disability the way we do, right? We have to do a lot of educating, a lot of outreach. And we have to acknowledge the various hurdles people have, especially if they come from any sort of marginalized background; the various hurdles they’re gonna have towards accepting that identity or embracing it; the various hurdles they’re gonna have towards even being a part of the disability community and what that would look like for them.

And I think with my sister it’s a little tricky because, you know, I’m the oldest sister, so I’m the boss. [laughs] And my family does look to me as you know “an expert” in disability. But I think that, you know, my sister has come to a lot of her own conclusions, a lot of her own ways of thinking about things. For example like, I kind of hem and haw at using the word “mental health”. I do use it just because it has a lot of meaning to people in our society. But I kind of have some issues with, like, the healthy/unhealthy binary it creates. But my sister very much, you know, likes that term. She wants to use it, and so I respect that.

I think in our article my sister had a quote where she said something like “Our siblinghood is like a mental health community in itself,” and that quote really excited me because I thought it really showed our deep connection that occurred through disability and through our sibling relationship. You know, and I didn’t say, like, “Well actually ‘mental health’ can have a problematic, you know, construction and we need to think about the language we’re using,” right? And I very much- like, I looked at what she said as, you know, her perspective. and I loved that she said that. I thought it was so beautiful, and it was such a great descriptor of our relationship and the ways that disability has actually brought us closer together into a very interdependent relationship as disabled siblings.

 

Managing mental well-being and racism during the COVID-19 pandemic

MIRIAM: So those are all the questions I had written down but I also wanted to kind of ask, because I don’t think I can’t not ask, is how you’re kind of doing with the whole situation going on right now with COVID-19? And how that impacts your mental health?

HAILEE: I think that those of us who experience any kind of mental distress, this is such a tough — a tough period of time. There’s just so much anxiety. I’m- you know, I know I’ve been having a lot of anxiety. I’ve been very tired. There’s this really harmful message going around – which I’m glad a lot of people are challenging – but, there’s just this really toxic idea that “oh you have all this time on your hands and now you can be the most productive you’ve ever been”. I’m trying to write my dissertation right now, and I can tell you — that is not true. [chuckles] You know, I’m just trying to be really kind to myself, but it’s hard. You know, I’ve been very tired. I’ve been sleeping more. I’ve been, you know, having a lot more anxiety. I’ve been having trouble eating regularly because I’m so anxious that, you know, I’m just not hungry or food doesn’t seem appetizing to me. My sleep schedule is becoming more erratic with everything that’s going on.

So there’s a lot of a lot of factors that are affecting my mental well-being. And what I’m really just trying to do to survive is just keep connecting with people, albeit virtually. I’m very fortunate that I live with a partner, and so I’m not completely alone because I have found that being completely isolated in the past has been very very bad for my mental well-being. Of course there are people who actually need some isolation to an extent or even completely for their mental well-being, but for me, isolation often is hard for me. And so I’ve just been trying to – through text, and Zoom, and Skype, and FaceTime – stay connected with my family and my friends and the disability community at large.

And that’s been really helpful, but I just know it’s such a tough time for everyone. And I am very concerned about this ongoing narrative that we should all be being so productive, because I think it doesn’t acknowledge that this is such a tough situation and marginalized communities especially are going through such a hard time in terms of a lot of uncertainty, job loss, income loss. And I’m just really worried about people in marginalized communities and [them] navigating this.

And then of course it’s just been, you know, absolutely horrible — the increase in racism against Asian-Americans. I actually had been talking with my students in my Gender and Women’s Studies 101 course, for actually the entire semester, about this – about how the ways in which racism is socially constructed. It often, you know, evolves with the current context. So because of, you know, COVID-19 originating in China, and, of course, we have our president and other leadership referring to it as the “China virus”, you know, those things are just really very much worsening the racism that Asian Americans already experience. And I think in some very like frightening ways. Especially – you know – for example, a lot of times when we talk about Asian American stereotypes and racism, we talk about the model minority myth and how harmful that is.

But now we’re seeing just acts of outright violence, fear, stigma. People, you know, are dying from this racism and so that, I think, adds a very complicated layer to all of this. And I’m sure for a lot of people with Asian American identities it’s extremely- it’s stressful enough to be going through a pandemic, but then on top of that to know that one of your identities is being targeted as a result of this pandemic. I just really- I’m really concerned for everyone’s safety and well-being and I hope people can access resources to help them.

I’ve actually been able to find my- I was very lucky my therapist has decided to do virtual sessions. I’m not really sure what’s gonna happen with my psychiatrist…Sorry, my pets are like playing. [off mic – “This is the worst time to play”]. They’re like right behind me running back and forth.

Yeah so I’m not sure what’s going on with my psychiatrist, but I also found that at UIC, for example, the Counseling Center is doing free virtual workshops on things like self compassion and, you know, not being hard on yourself. And so I really encourage everyone to try and look for those resources. I also have seen the Disability Cultural Center at UIC is doing some really exciting virtual events. I’m hoping also other Cultural Centers…Sorry. [The pets] were sleeping all day. But now of course, you know, that I’m in the middle of an interview we have them playing.

But yeah, I’m hoping that other Cultural Centers are also going to be doing this. And of course not just at UIC but throughout the Chicago community at various colleges, universities, community centers, artistic spaces, activist spaces. And I just encourage everyone to search for those and try and stay connected and try and do everything they can to take care of themselves in this just really rough time.

MIRIAM: So those are all, kind of, the questions I have. And so thank you for being so open and honest with this. Ginger did you want to say anything?

GINGER: Just want to extend again our thanks.

HAILEE: Yeah, thank you for having me and for including me in the project. Take care of yourselves.

GINGER: Yes, it was very nice to meet you.

HAILEE: You too.

GINGER: Thank you! Thanks Miriam! Bye-bye.

HAILEE: Bye! Take care Miriam.

MIRIAM: Bye!

 

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.

From Stigma to Mad Pride: Fighting for Visibility Podcast
Episode 1 with Asha and Sindhu

Guests: Asha Rao and Sindhu Konkapaka
Hosts: Ginger Leopoldo and Rick Wild
Transcript by Rick Wild

TW: domestic violence, mental health gaslighting, traumatic brain injury

Topics:

1. Introduction
2. Portraying intergenerational mental health stigmas in Indian culture
3. Mental health advocacy through storytelling
4. Experiences of mental health as children of immigrants
5. Learning how to deal with issues of mental health
6. Resources for those looking for help
7. Life during COVID-19 lockdown
8. 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.

RICK WILD: So we’re very lucky today, we have two guests joining us. It’s Asha and Sindhu. Thank you guys.

GINGER LEOPOLDO: Hi Sindhu!

SINDHU KONKAPAKA: Hi, hello! Hi! Nice to meet you.

RICK: Hi, you too. Thank you for being here, really appreciate it.

SINDHU: Thank you. Sorry I’m a couple minutes late. I had to put my niece to sleep. [laughs] But I’m here.

RICK: It’s all good. Very excited to talk to you guys today about your experiences in the Disability and Human Development program at UIC and your time working with CIRCA-Pintig putting on that show last year – Silencing Stigma: Reclaiming Life. To start would you guys like to introduce yourselves, tell us a little bit about where you’re from, your preferred pronouns, what you guys are up to at UIC, and what you guys hope to accomplish.

ASHA RAO: You can go ahead Sindhu.

SINDHU: [laughs] Yeah. Well, hello! I’m happy to be on this call. Currently, I’m a Senior at the University of Illinois at Chicago. My pronouns are she/her/hers. All the DHD classes that I ever took I took last year, both semesters. Taking the course itself was a completely different experience; it was not like my other DHD courses. It’s not a “by the textbook” kind of class. You learn through watching others and doing interviews and taking part in these activities and the events and such. And I really enjoyed taking that class.

And now major is Rehabilitation Sciences, and I’m going into Dance and Movement Therapy (DMT). And because my experiences in dance – I’ve been dancing since I was four years old and I teach as well and I perform – but I wanted to combine my major and my experience in dance together. And so because I have this major as a Rehab Science student, I’ve had the honor of taking many classes that talk about mental health and that talk about disability and what that means. But after taking this particular class, it was looking at mental health and disability from the lens of an Asian American. And that was very unlike my other classes because they’re not as focused on that aspect. And then later on, working more with Ginger I got to be a part of the Silencing Stigma: Reclaiming Life 3.0 play, which was beautiful experience.

ASHA: Well, I guess for me, my name is Asha. I am currently a Master’s of Occupational Therapy student at UIC. My gender pronouns are she/her/hers, and I identify as a South Asian/Indian-American. I think for me- so I was also a Rehabilitation Sciences Bachelor’s last year, and during my undergrad at UIC. And then I went in to the DHD minor because I thought that Disability Studies was going to be very important in order to understand the experience of someone who is an individual with a disability from a multitude of perspectives. So like the history that contributes, and then the policy, and then world culture.

And I always had this interest in mental health and working with individuals who are experiencing challenges or barriers to do with mental health. And then also I found it very interesting in my work with Rooshey from the four years that I had been working with her since I was a freshman, and even now I had this really interesting, like – I don’t even know what to call it – I guess like interest in working with the Asian-American populations because I found out and I realized that disability is just something that’s not spoken about. It’s something that’s taboo, and it’s something that’s still emerging in terms of being a normalized conversation for a lot of people and across a lot of different contexts. And so for me being able to take this course, it was being able to have structured conversations and structured experiences in order to understand what is the experience of someone who is identifying as having a mental health disability or condition that is then affecting their daily experience.

And so, I guess that’s why I overall ended up taking the class, and I think it was also really interesting because the classroom was a community of individuals who either identified as having experiences with their own mental health or knowing and supporting someone else with their own mental health. And so being able to be an active agent and partaking in that experience in terms of the class with Ginger and Rooshey, it was very much eye-opening to see how we in some way, shape, or form could create experiences in the communities like when we’re older. Even now putting in that work like creating with the production like Ginger did with CIRCA-Pintig. And simply being able to be a part of that we can do that in so many ways. And so I think that’s how I found myself taking that class as to how can I educate myself and being an agent or being an activist and being able to create those experiences for others.

 

Portraying intergenerational mental health stigmas in Indian culture

RICK: So you guys mentioned the community engagement that was involved in that course amongst the students and then going out into the larger Asian-American community in Chicagoland. Can you explain more about what that process was like – this process of gathering stories and turning them into stories that might relate to your own lives or voicing others’ stories?

ASHA: So overall the community engagement portion was really important to me because it allowed me to get a greater span and scope of the identifiers in terms of who is an Asian-American who might be experiencing issues with their mental health. What was the starting point for us before we went in to like having these conversations and collecting these narratives, for me at least, was when we visited the Cambodian – I’m gonna forget the actual technical name – but it was this Cambodian cultural museum that was a monument to the Cambodian genocide. Being able to see the history written on the walls of these- of like the story of everything that happened and being able to just hear the experience of someone who takes care of this really important part in the community was like I guess a starting point.

And I think at the time when the project came out I was actually supporting one of my best friends who had been going through issues with their own mental health. When we would just- we would talk every day, and so he would ask me what I was doing in class. And I told him I was working on this project, and so he was like would it be okay if I shared my narrative? And so I told him- I was like do you really want to, because it’s very personal because everything he shared was everything that he was going through at the time. Because he identifies as an Indian-American male it was the first time that he was going to talk about and identify as someone who was facing issues with his mental health because he comes from a very religious family where mental health is not accepted. And basically for him, if he were to come out and say “Hey mom and dad, I’m having issues with my mental health” they would say “Okay. Go to church.” And instead of offering other resources or anything or other supports just because of the stigma that’s around the conversation.

And so basically he was like yeah I want to see what it’s like sharing this narrative and everything that I’m experiencing and feeling I want to put a label to it. That’s kind of how it was for me in terms of the assignment and collecting that narrative and then I ended up turning it into a letter actually. Because once I talked to him, the conversation that came from it, he wishes that he would have been able to tell himself everything that he told me in order to be a more educated individual and feel like he had more self-management strategies and support.

RICK: So your work was titled A Letter to You? And was that written from your personal experience?

ASHA: So it’s interesting that you ask that. So it was written from his personal experience, but we also are really, really similar in what we were both going through at the time. So like you know minimally we’re both tennis players so we both related to and understood the analogy and when I created the tennis player lines and parts to that anecdote but at the same time yeah it was both related to my personal experiences as well.

RICK: And Sindhu I was reading through your story a little earlier today. A very powerful story and dialogue about this woman who was facing these challenges with domestic violence in – I want to say India?

SINDHU: Mm-hmm. Yes.

RICK: Could you tell me more about what the process was like for you gathering that story and how you felt being able to tell that story and why it was important to you?

SINDHU: That is a very loaded question. [laughs] But what I will say is that the experience was one, certainly emotionally taxing. So I had to be very careful on taking care of myself during the process, as well as, it was also a very beautiful experience. I actually wrote five different monologues five different typical roles of women that you see in India. Not the only five, but some of the roles which are five main roles that are not typically talked about or typically really seen as being valued; they’re not valued as much. And one of those five monologues was A Mother’s Story or I call it Amma’s Story, and amma means mother in the Telugu language. This story is actually bits and pieces and elements of my own aunt story – so my mom’s brother’s wife – and I got the chance to interview her and talk to her and really get to know her, who is someone that has always been very dear to me since I was a little girl.

And at first when I wanted to interview her my mom and my aunt were both like “Absolutely not,” like no no there’s no way you can know about my life story there’s just no way. And then I really had to sit down and talk to them about why we’re doing what we’re doing, what the purpose is, and she’s like okay I see you can but I want you to mask my story I don’t want you to fully disclose. But I want you to incorporate it into your own writing. So I’m actually a writer: I love writing and I love creating stories. And so she wanted me to incorporate her story into A Mother’s Story. That story included her words, her thoughts.

And this particular story is about a woman who is facing domestic violence in India and who is so strongly tied to her culture, her tradition, and her in-laws, and she can’t leave him, because in India leaving your husband because you’re facing domestic abuse is not an option. If it is an option, it’s not an easy way to get there; there’s always strings attached unfortunately. In the end of the story she actually runs away; she leaves, which is not…it’s an ideal ending for a lot of women who wish to do that, but it’s not possible for everyone.

Writing this was okay. I was writing and I was like “Yeah this is powerful; this is great.” But then the moment that I had to perform it with Bharatanatyam, where Indian classical dance…that’s when the story evolved for me. Because on stage with the red lighting and like hearing my own voice, it did not sound like me. This is what I sound like on a daily basis! [chuckling] But me having to record that, that recording took about 34 takes because I could not get through it without breaking down. And it was very, very hard. But that 34th take was the one! And that was the one that I ended up sharing in Silencing Stigma: Reclaiming Life with dance, with expression. And the experience was very powerful.

My mom heard it, and she was like “You created this!” and I was like “Yeah I did!” She’s like “This is pretty cool!” So yeah, but that was my experience with that. I know the show did run for multiple weekends, and I got through one weekend successfully. And I unfortunately could not do any more after that because I was so emotionally drained from doing it over an over again. You know the words slapped, beaten, torn, and me having to actually show that with my body over and over again multiple times was too much. But it was powerful. Very moving.

[bassy, acoustic guitar with driving momentum]

 

Mental health advocacy through storytelling

RICK: You approach your advocacy roles through this medium of storytelling. Why do you think there’s a benefit to that? What is so important about getting these stories out, and how is it more powerful through these storytelling mechanisms?

ASHA: I think there’s an element of…I don’t know if it’s ease, but I think that there’s an element of feasibility when it comes to using story to share experience. And I think that – I mean I don’t know about other cultures – but I can say from the Indian culture in my personal experience, a lot of the ways that I was raised, a lot of the ways that I grew up, was it was my mom reading comic books to me – like these Indian comic books that always had fables and had morals at the end. And just overall it’s always been- like growing up it’s always been that structure has come- and becoming who I am as person today has been through stories. It’s been through other people’s experiences and taking away what can I do based off of what you did or what can I maybe do better based off what you did.

And so for me when it comes to then this context, I think that one, this is a very sensitive topic I think. I think it’s very hard and it’s not easy to share what your experiences have been with your mental health. It’s not easy to engage someone else and their conversation about their mental health because you don’t know what they’ve been through; you don’t know how to open that door. And so I think being able to create these stories and write these stories, it creates a bridge for that conversation to happen, and I think it’s the bridge that we need in order to reduce the walls of stigma that are around mental health. I think it’s a really powerful mechanism; I think you can gain a lot more from it. It’s a more honest truth I think when you use storytelling.

SINDHU: And to add on to that, I think storytelling is also a better way to connect to people. It’s a way to really relate because when you’re told, like how you’re taught in school with the textbook – mental health, DSM – you know, all these things…if people read it and understand it, and they move on with their lives. But then when it’s presented to you with a story, it’s oh, an actual person has gone through this; it’s an experience. And then you think about it and it resonates with you.

I had people after the show come to me and tell me “Thank you for telling my story.” And that was such a beautiful thing to hear, and I had tears in my eyes because this is a story that includes elements of my aunt’s story. But it’s also a story that’s a part of many lives of many women in India that don’t have a voice. And they need a voice. And it is through storytelling and through the arts and through writing that these stories are shared. And to answer your question, it’s important to talk about it because, yes, mental health is seen as being taboo; it’s not talked about. But also there are instances where it’s talked about but it’s not accepted.

And I think it’s really important in a world where, you know, we’re constantly seeking validation, the last thing that you want is for someone to tell you that it’s all in your head, just sleep it off. It’s not the way to go about it. Not cool. And I think that through storytelling, you’re relating. It’s no different than reading a book and it’s all the more better because you’re seeing it being performed in front of you with dance, singing, reading poetry. You know, it’s a more engaging way to convey material I think.

RICK: So you guys, you’re both aspiring health professionals. And there’s sometimes this difference in…I don’t know how I want to say this, but there’s this conflict I guess between medical fields and this more kind of open discourse. You mentioned a little bit Sindhu about how you want to integrate dance into your practice. And I was wondering if you guys could both talk a little bit more about how you can integrate these kinds of mechanisms of storytelling into your work as health professionals.

SINDHU: So with my experience in dance, in Bharatanatyam, Bharatanatyam includes expression, drama, and pure dance, rhythmic footwork, but then there’s also storytelling through expression and through gestures. For people that don’t have a voice to be able to tell their stories, dance is an amazing way to convey that. I know there have been times in my life where I have not been able to talk about something, and I prefer to dance it out and to show it because I couldn’t talk about it – it was too much at the time.

And for someone that wants to become a Dance and Movement Therapist, I want to use it and allow individuals to express themselves with dance, especially kids. And I say that because for kids who have to consistently attend therapy every week due to injury, cerebral palsy, whatever it may be, it’s more engaging for them to have music and dance as a part of their treatment, versus sitting in an office with someone else and being asked to move like this and move like that, versus having an open space and music playing. And it’s more engaging for children that way, and they’ll be more willing to attend their therapy sessions. And that goes for the elderly as well.

And I wanted to incorporate the dance into my health profession because my major gave me a lot as a Rehab Science student. It gave me all the knowledge that I need to be able to understand the foundational aspects of Physical Therapy/Occupational Therapy. And then my passion for dance gave me all the knowledge that I needed on how to move. It expanded my movement vocabulary. So I thought what better way than to combine them two together and offer them to communities that don’t have the access to be able to express themselves and to be able to receive the treatment that they actually need. So yeah, that’s kind of what I wanted to do and what I was kind of also able to do in Silencing Stigma: Reclaiming Life by telling the story through dance.

ASHA: So I think for me, so to give you a little bit of context with Occupational Therapy, it’s really about helping individuals live the lives that they want to live in the fullest way possible, and also helping them engage in the activities that are most meaningful to them. Because oftentimes the individuals that we work with – either because of a sudden disability, or a disability they’ve had since birth but haven’t necessarily received the supports that they need or could be more useful to them – they’re not able to engage and participate as much as they would be able to, right?

And so for me coming from the background that I did and just growing up in an area where a lot of individuals were very much…I guess you could say – I don’t like using the word “limited” but I’m going to say limited – they were limited in terms of resources and supports and being able to do what they wanted to do with their education and even with their career later on. And I saw that also a lot in college.

And so for me what I really hope to do with with my career I think, and then incorporating this experience into my practice, I really hope that I’m able to have a place in the community; to create a place in the community. Because I think oftentimes what’s missing, especially in the Asian American communities from what I’ve seen in my work with Rooshey and then in research, is that there’s this absence of conversation. There’s this absence of huh, I’m having this experience, there’s no way that anyone else could be experiencing what I’m experiencing. But then it just happens that my neighbor down the street knows exactly what I’m talking about, or, you know, the person in the other town right over there knows what I’m talking about.

So I think for me what I really hope to do is create the space for safe conversations to take place. So like from my freshman year we actually- Rooshey and then Jae Jin Pak and a couple other others, we created this conversation basically, and we invited everybody who was in a couple of the northern neighborhoods who identified as Asian-American and having disability to come and hear the experiences via Q&A of the panel. And basically everybody walked away saying man, I didn’t even know that this could be possible!

And so I think a lot of times, like as Occupational Therapists, typically people focus on what does the client want to do, what does client want to do? And obviously that’s completely valid. But then I think my big question has become what does the client not know they can do? And so creating that ability to have the client or the family or whoever we’re working with know that this conversation about mental health is a meaningful activity, and it is something that you can do with other people. And being able to share your story, that’s something I really hope to do.
In my mind, it kinda- in an ideal world where there’s funding and not all the red tape of bureaucracy it’s a community center and in a lot of neighborhoods that don’t have a lot of resources and funding and allowing individuals to come in and receive services and even have like small like roundtable discussions or one-on-ones and just being able to give them this opportunity to share their story I think is what I’m hoping to do

RICK: That’s totally awesome. This access to information and community that we strive for, people, you know- sometimes it’s just a matter of them not knowing what’s out there and what is possible for them. So it’s really heartening to hear that you’re trying to to kind of work towards that.

 

Experiences of mental health as children of immigrants

So we’ve talked a little bit about how stigma of mental illness/mental health issues/neuro-diversity in disabled populations, how that how that really can limit people’s access to healthcare, and dealing with these issues in Asian-American communities. And I was wondering if you guys had any experience with that in your own lives, in your communities? And especially for people coming from different countries of Asian descent, how difficult those adjustments might be adjusting to the healthcare system in America?

ASHA: So that’s a big question. Okay, so for me, yes, I do have experiences in this arena for sure. So my parents are both immigrants. My dad basically saw my mom one day when he went back to India and said “That’s the one I’m gonna marry” and fell in love with her and married her the next day. And then three months later she came to the States, and here they are, 30 years later, married and good to go.

When you’re the child of an immigrant, you don’t feel like you want- for me, I didn’t feel like complaining about anything or feel ungrateful for anything. And I just wanted to be like okay great, my parents I made all these sacrifices for me and I really appreciate them really, really a lot. And so I want to do anything I can to lessen the burden of everything they’re doing to make sure that I can get this great career and this great education and everything else they’ve done for me, right?

And so basically when I went to college, I was always working multiple jobs. I was always doing everything I could to get into grad school because it’s super expensive to have to like apply in general and then to apply again. And so I actually ended up doing my Bachelor’s in three years instead of four. So I was doubling up on classes, I was working two jobs a time – at one point I was even working three. So…and the point that I was working three, I basically drove myself to burnout. And then on top of dealing with everything and just education and work arena, there was things going on in my personal life, there was things going on in my social life. And it was a very frequent and chronic hot mess.

But then I never wanted to come home and say anything because if you complain, then they’ll feel bad. And if they feel bad, then you’re gonna feel bad because A) it’s your experience, and B) they don’t want you to struggle, so they’re gonna do anything they can to reduce your struggle. But the whole point of you working so hard is to for you to reduce their struggle! So it’s this constant conflict I think that got created for me.

And along the way with all- everything that was going on in combination, it resulted in issues with anxiety and depression. And when I went to go seek help, the first question that I got was “Have you tried talking to anyone in your household”? And so I was like Well, mental health doesn’t really exist my household. I have a roof over my head and I have my three square meals. So I don’t really have a reason to have an issue. And the response to that was Huh. Maybe you should try harder. And so then I was like Okay…never mind. Never gonna get anywhere here.

And so I ended up developing this habit of anytime I was having issues with my own mental health, I would take all my energy and put it into another arena so that I was still being productive – and I was still not necessarily dealing with the issues at hand – but I was doing something that was positive and productive and good. So it became this very ruthless cycle until I got to grad school. Yeah, so I think overall that’s been my experience with that. I think that it’s a huge contributor in terms of culture. There’s a lot of contributing factors in terms of culture and upbringing. Overall there’s this like…I don’t even know how to describe it, it’s like this back and forward where you don’t want to disappoint anyone, but then you end up disappointing yourself. And then you’re irritated because you disappointed yourself. So I don’t know.

[gentle, descending arpeggio rhythm on acoustic guitar]

RICK: Do you think it was that your parents were first-generation immigrants that this was kind of “push for excellence” inhabited a lot of this pressure you felt?

ASHA: And it’s interesting that you ask that because it’s- I don’t- my parents have never necessarily pushed for excellence. But there’s this Hindi phrase that we say. It’s kam kisi se kam nahin hain. It means “we’re not lesser than anyone else”, right? And so for me, especially my mom, like the day that she met my dad she actually was on her way to go pay for her Master’s. But then she got married, and it completely took her life off course.

And so for her like she’s always pushed me to never settle for less for myself and to never do anything that’s not me, you know? And she’s really the reason that I’m in my Master’s program. She’s the reason I’ve been successful for everything. And so I think that pressure of doing well and being able to support her, I think that’s where it comes from. Because she’s like my best friend; she’s my buddy. Like we don’t call each other like mom and daughter. It’s like hey dude what’s going on? And she’s like oh nothin’, what’s up?

SINDHU: To answer your first question that Does stigma limit access to health care? Yes. I would say yes because if mental health disability is not accepted in the environment that you are constantly in, you are less likely to want to go and seek help. Sometimes you may not even know that you need help. Or you want help and you just may be living your life as you are feeling a certain way or experiencing certain things and not understanding that you need help, especially when you’re not getting any validation from elsewhere.

And along with that, in my personal life my parents have always pushed me for excellence. But I had to be the one to change that and say it’s not about excellence, it’s more about doing the best that I possibly can. And I had to change that for them. And I had to change the lens for them to be able to see what I was actually saying. Up until the middle of my undergrad, so up until like my sophomore/junior year, they were constantly pushing for excellence. No less than an A! Bs are no good! And I really personally don’t think that grades are a good indicator of what you actually know, because I’ve experienced it; I’ve seen it.

But with that being said, my parents have always pushed me for excellence. And that has emotionally taken a toll on me. I know there were nights that I would cry because I didn’t get the ACT score that I wanted. I would cry because I didn’t get the MAP, the elementary school computer testing that they do. I didn’t get the score that I wanted, and I thought it was the end of the world. But you know what? It’s not. It’s gonna be okay because you’re not defined by a score; you’re not defined by a letter. It’s your character, your personality, your morals, your values that matter.

And my parents have always taught me, you know, the morals and values and all of those things we’ve always been eye-to-eye on, which I’m really thankful for. But they’ve always pushed me for excellence, which I’ve had to change for them. And I am where I am today because I was able to change their views on that. And I did it by just doing and showing them that I’m not defined by a letter grade. Because this is what I know, and this is what I did.

There’s so much more to that. And I could totally relate to Asha’s experience you know having parents who were immigrants. My mom got married when she was 14 years old, and she didn’t start to live with my father until she was 23. So they got married and then they went back to their normal households, and then they came back together when they were older. And I was born and raised here. And for students around me, they say well you know our parents act like they had to climb a mountain and boat across a lake to get to school. [laughs] You know! That may or may not have been true, but they certainly had to face a different set of struggles than we- we still face struggles, I know people in my age group still do face struggles. And our parents also faced struggles, just different. So it’s not that they struggled any less or we’re struggling any more, it’s just that it’s different.

My parents will say sometimes, you know, technology has brought you guys so far and I want your generation to be better than we were. You know, I want you to take that and take advantage of the resources that you have because we didn’t have that during our time. And I agree with that, and I can see where they’re coming from. And I think a lot of people around my age kind of struggle with empathizing with that. Because I haven’t experienced it, you know? I would take a bus to school every day or drive a car, right? Now as I’m getting older and living with my parents moved back home two months earlier than I expected, I’m starting to see what’s going on around me and it’s certainly different. I have a new set of lens on now. [laughs]

 

Learning how to deal with issues of mental health

RICK: So was there a moment for you guys when your perspectives on your own dealings with mental health shifted? Was there this like catalyzing moment where you were able to to reckon with it better? Or is it an ongoing process?

SINDHU: I would say that it’s an ongoing process because I’m still learning every day, you know, as I’m reading and writing and talking to people. But if I had to pick a moment where it just like- cuz something just clicked for me, would definitely be that two years ago – what is this 2020? Yeah. [laughs] Two years ago, I actually sustained a brain injury, and that completely like changed everything for me. And because had I not endured that brain injury, I would not have chosen DMT to be my dream career. And I say that because right after I had my brain injury, my mental health took a toll, literally, because my neurons had actually changed. And then as well as the pain that I was experiencing and people not being able to understand what I was going through.

Oh! Something I would commonly hear – and I hope this is being recorded because the world needs to know – just because you don’t see it does not mean that it’s not there, people! Okay? [laughs] Just because you don’t see it does not mean it’s not there. I know brain injuries, they’re called an invisible injury because you don’t see it – it’s not visible on your face. I would hear a lot Oh, you look fine! People would never know that you hit your head.

Yeah. They wouldn’t. They wouldn’t know until they talked to me and they’re starting to notice that I’m repeating myself, or I can’t remember what I had for breakfast this morning, or I’m probably wearing my shirt backwards. All these things have happened. It’s just because it was not seen. So what? I need to have bruises on my skin? I need to be wearing some kind of extra aid for you to know that? Like I don’t need to validate myself. I don’t need to validate my experience.

That’s where it clicked for me. I was like Wow, people really just don’t get it. They genuinely don’t get mental health and don’t understand it. At that point, you send them your well wishes and then you explain to them, you know? You explain to them calmly and try to help them to understand. If they still don’t get it?…bless you. You know, just bless you. I hope one day you’ll be able to understand, but there’s a lot of misconception out there on mental health, especially brain injury because that’s something that I’ve experienced firsthand.

And so after I experienced my brain injury, I started going to talks and fundraising events for people who have experienced brain injury and kind of seeing everything that was going on and everything that was out there. Because along with myself, I know another dance colleague who also experienced a brain injury. And and she had two in the same year. So she was the one that was kind of doing all this whole movement towards having fundraisers and helping people to understand. And after she found out that I had a brain injury, she was like girl, come on. [laughs] Let’s talk, you know? That’s when it really clicked for me.

And I started to further investigate and I turned to dance. Because my doctors were telling me you can’t dance, it’s gonna make it worse. But I didn’t stop dancing. I kept dancing, I kept moving, and it was so refreshing. And I thought if dance is helping me feel better this much – because I felt alone; no one could understand what I was going through – and if dance was helping me this much, I thought how many more people can it help who have gone through a similar experience as I have? If I’m feeling this amazing, it’s got to help someone, right? Which is why I turned to Dance and Movement Therapy because that’s what I used, and I wanted to offer that to anyone else that could possibly use it to help their experience. That was long, but yeah. [laughs]

RICK: That was wonderful. Asha, was there a similar kind of shift for you, you think?

ASHA: Yeah, I think I relate to Sindhu in a lot of ways in terms of her experience and everything she said. That was beautiful by the way, and I love that so much. So a couple things. So A) I do think it’s an ongoing experience. I think it’s not just something that becomes a part of your daily vocabulary or a norm necessarily overnight in terms of your personal experience and the experience that you have in your environment, right?

What really started to change my point on things and kind of have things click with me in terms of identifying as someone who is experiencing challenges with their mental health, I think for me what it was is I had met this group of friends my freshman year and we all got really really tight and close. We came to this point where we all realized we were just all struggling – we were struggling with school, we were struggling with our family lives, we’re struggling with work, and so on and so forth, right?

And so in our group I’m nicknamed the South Asian Woman with All the Emotions, right? [laughter] Because I’m a very open book and I talk about everything very freely and openly. And so for them they were like how are you able to just speak like that? And I was like what do you mean? No, you just say everything that’s on your mind. You don’t care if you say that you cried yesterday. You don’t say that you don’t get upset if you say that you like hit the wall or something on anything, you know? Like how do you just do that? I was like I don’t know, I feel like talking has always made me feel better. And being able to label things and describe things, define something that you’re experiencing, it gives you this like locus of control.

And so once I started doing that more with my friends who also identify as South Asian/Indian, they all started doing it also. And they were like man, we’re all in the same boat. And I was like and that’s okay. That’s a hundred percent okay if you’re in the same boat. And I think it’s really important to have people on your ship and on your boat so that you can relate. Because I think oftentimes – and I feel like this is a part of the Minority Myth model, I promise I was paying attention during class [laughter] – but I think oftentimes, especially for Indian Americans, we’re discredited in terms of our experience with disability. Like we’re the ones that are considered the more privileged Asian-American or the more privileged minority. And so we can’t possibly ever experience disability. Why would we ever experience issues with our mental health?

I saw that so much in my undergrad because people would constantly be like man, you’re doing so good in class; man, you’re working; man, how are you doing all this and graduating in three years and getting into grad school? And so people would not believe me when I would say it’s literally driven by my anxiety; it’s driven by this washing machine that’s in the middle of my chest that loves to speed up and race and pulse whenever I have to do something that I’m not necessarily competent in. It’s because of the fact that I don’t like when I have to spend two days in bed because I just can’t get out of bed, and it’s because of all these blues and racing thoughts it’s kind of like-

I remember I went to a mental health first aid training because we were hosting them on our West Campus, right? And so someone was- one of the exercises is draw what your anxiety means to you. And so for me, I actually drew like a beehive because for me when I start to feel really anxious and my anxiety turns on it feels like all these bees are buzzing around and they’re not gonna stop until the little bear sticks its hand in the honey in the hive or whatever, right?

Throughout undergrad, it was this experience of being able to label and being able to like define and describe and then find others who were in the same experience as me. And then once I actually saw what conversation was doing for these people and they were just like man, I feel like this like whole weight off my shoulders has been lifted. Just because for me like I often just ask a lot of questions and I like to listen to people. And I don’t care what you tell me. You can tell me anything. I will try my best to make sure I have the emotional capacity for it, and if I don’t like we’ll pick up another day. For me that’s always been my jack of the trade. and so I did it in a lot of areas.

When I saw the impact it was having on my friends, I was like Huh. There has to be a way to do this at a higher systems level. And so one of the ways that I’m actually an activist in terms of mental health is I do a lot of policy work. So I was working for a non-profit with public policy. We were trying to get a bill passed for increasing the supports of mental health resources for college students, right? And so we did a lot of campaigning, and we did a lot of lobbying. I ended up going to Springfield and speaking to the Mental Health Committee of the Senate, and just a lot of work.

And ultimately we ended up having a Q&A panel with 200 attendees from across the UIC community, and basically they got to see what it was like from a lot of different perspectives of stakeholders who were involved in the mental health game. So he had counselors from different colleges in the city, and we had a couple of state representatives, etc. And we also had a lot of mental health community agents like Trilogy Behavioral Health Care, and Thresholds, and the list goes on. And so being able to see people walk away from this conversation being like What can we do more to support this conversation? I think for me that’s when it kind of clicked that like it’s okay to be someone who identifies as struggling with their mental health. And it’s even more okay if you can engage in conversation. You can start the conversation with other people.

And I think that’s why it’s so important to me because being able to see someone with that look of relief on their face that they’re like man, I’m not an alien or anything, I’m good, I’m okay, the experience is valid, it’s really important to me because I feel like I didn’t get that experience from a lot of people. But being able to give someone else that is really, really uplifting and really important.

 

Resources for those looking for help

RICK: So what advice would you guys give to people who feel like they can’t talk about their issues with mental health? Or they don’t even have the words to express what they’re feeling? What advice can you offer to people who feel like they they can go to anybody with these problems?

SINDHU: I know it’s said a lot, but I really mean it when I say this, that: You are not alone. You are not alone. And if you’re looking to seek help, and you’re looking for resources, and you’re looking, and you know people that you can talk to, but you’re scared…just do it. You know, just do it. Because I think that years ago, had I sought help when I first needed it right away, I don’t think it would have taken me this long to figure out what actually needed to be done to help myself. To shorten that process of having to search, having to wait, having to figure it out yourself, if you are looking to go get help, just do it.

Nothing matters more than your health, your happiness, and your well-being. And if you feel that you are being held back because of what someone might say, what your family might think, and you really need help with your mental health, go get it. Just go get it. Because at the end of the day, it’ll help you.

[gentle, ringing acoustic guitar pattern]

And people around you will see how much it has helped you because they’ll notice the changes. They’ll see your experience. And they’ll see how you went from point A to point B. And I know friends who know they need help and they just won’t go get it because of what their parents might think, and they’d rather deal with it themselves. But I also know people who went and just did it. They sought the help that they needed against their parents’ words, and they’re happier today than they ever were. And if you really need help, go get it. Just doing it is the way to really get out there and really get a hold of those resources. And once you have them, don’t let them go even after you get better. Don’t let them go because someone else might need it right after you.

ASHA: I think for me, and I don’t really know where I got this from to be honest, but what used to help me a lot and I would definitely recommend this to people, is if you don’t necessarily know the words to fit your narrative and what you’re going through, write it out. I can’t tell you how many journals I have that are like half-filled because I was like okay gonna start a new one, a fresh one, I’m gonna write everything, get everything in there. And then I either ended up forgetting about it or I just- I didn’t need it anymore. Because I felt like the weight of the words and what I was feeling and thinking and experiencing had been put on the pages. And it’s like a developing experience too. I think it’s like the baby steps that someone could sometimes need if they don’t necessarily know what kind of help they want, or what it looks like, or how to have that conversation with someone. But for me, I used to write everything in like a journal or, you know, if I didn’t want to write in a journal for whatever reason, I would like write it – I had an email and would send emails to myself with everything I was experiencing. It was like my online journal.

And then also the thing that I did in accompanying with that is that I used to write letters about what I wanted my future to look like. So like I would write like the ideal future and what everything needed to look like. And then just looking at those two things like side-by-side I’d be like okay what do I need to do in order to make this happen? Like what supports do I need to make this happen. And so I think that then helps you kind of self-justify because at the end of the day so many people told me that like I should go to therapy, it’s really gonna help, you should go you should go. And I used to keep making the phone calls. I used to keep making the appointments. And then the day the appointment would come, I would not go. Because I didn’t want to open a can of worms.

And so at the end of the day, so many people can tell you to go and it’s gonna be good for you, you’re gonna feel great. But like if you don’t internally validate that first then it’s not – in my opinion, in my personal experience – it’s not gonna be something necessarily you feel so comfortable with. And it’s never gonna be a super comfortable experience at first. It takes time, it takes adjustment. But yeah, I would definitely suggest doing like the letters thing if you could.

And also it kind of helped because what I used to do- so my extended family is slightly- to semi-conservative I guess. It’s a really interesting divide because the cousins that are in India are mostly conservative; the ones that are born and raised here don’t want to acknowledge any of their trauma or their baggage or anything. And so what I used to do actually was drop words related to mental health. Like drop little inklings. And then they would like slowly kind of open up, and share their own experiences, and give their advice. So then it kind of used me feel like Huh. Okay cool. Not an alien. I’m not adopted. Like everything makes sense. [laughter] Yeah, so then being able to drop those like key words if it’s possible also I would suggest to someone just to see- you never know what kind of conversation could happen.

 

Life during COVID-19 lockdown

RICK: All right, well just to wrap up, it is March 31st 2020. We are still in the midst of this unprecedented sheltered-in-place situation with COVID-19. And I just want to ask you guys, how are you managing? How you holding up?

SINDHU: Wow. Well, growing up, I’ve always been homebound. I’m very used to being at home, very used to being indoors all the time. And I am currently in Schaumburg, Illinois. I used to live on Chicago campus at University of Illinois-Chicago, but I moved back home a couple weeks ago. Would have had a graduation ceremony on May 7. No longer happening. But I’m officially back home, and I couldn’t be happier to be home with my parents. I miss being on campus because that experience was different, but it’s not like I don’t like being at home. I love being here.

How I’m keeping well is I’m staying home because I’m considered to be someone in the high-risk category due to being an asthmatic patient. I opened the window today for some fresh air, and my mother was like “Close the window!” [laughs] So I couldn’t open the window. Haven’t stepped outside in weeks because apparently I can’t go outside either. Yeah. [laughs] But I’ve just been staying home and taking care of my parents, who are also in the high-risk category, and just been keeping myself busy.

I mean, online classes started which is really nice. But I feel like I have more mind space, if that makes sense. I don’t constantly feel like a hamster on a wheel running and running like I did on campus. But now I feel like there’s more space in my head to just take a breather, and I wasn’t able to do that before. But now that I’m home and with my family, quarantine or not quarantine, I just feel like there’s more space in my head because I’m able to really take a breath for myself.

And for anyone that has been directly or indirectly affected by this COVID-19 pandemic, my heart goes out to all those people. And hoping that this blows over very soon.

ASHA: I definitely share the same sentiments, and I’m just praying hoping that everything’s okay and the world heals soon. I think it’s really sad, and I think it’s really heartbreaking to see like what everything one is going through right now. And it makes me- I’ve been reading a lot of posts online because a lot of people don’t understand the privilege they have to be able to be quarantined at home to begin with, or being able to like stay at home and socially isolate and protect themselves. So I think it’s been a really interesting time. And so hoping that everybody finds support and the resources that they need someway, somehow.

For me it’s also been really interesting. So I moved home for the first time in four years, two months earlier than I was expecting. So when we moved into this new home from our childhood home, it was like a week before school was going to start. And I visited here and there. I’ve spent, you know, spring breaks and summer breaks in there, but I’ve never really been home home. So this is like a first for me, and it was really nice because it’s like the inner introvert in me is being very soothed because I feel like it’s really soothing to have just done like nothing two weeks before online classes started. And so my burnout is non-existent right now: not stressed, I’m not anxious about social interactions, or anything. It’s been great from that perspective.

I think it’s also really fun just like being able to hang out my mom and like see her on a daily basis. Because I always used to feel really bad I couldn’t see her because I’ve lived in Chicago for like the last four years. And so that’s been a really good change. I think it’s probably the best part so far. It’s really interesting cuz I think overall the stay-in order has like forced people, or like really encouraged people, to reach out to those who you haven’t talked to in a really long time, or making the time out of your daily routine. Which I definitely do to talk to friends more often and talk to family more often. So I’ve definitely reconnected in those contexts.

I usually am up at about five or six o’clock, and I go for like a run or walk because I don’t like being inside. So I like being home to like rest, and to like relax, and be a lazy cat. But I also- and used to just being able to step out and get onto public transport and go wherever the heck I want. And so now being able to do that because I live kind of nowhere. I live in Round Lake. So there’s not like buses or anything. There’s not really anything around here. I usually just like go outside, or like I have my space now, my workspace in the house that has like the two biggest windows. And that’s where the most sunlight comes in.

But yeah, besides that the way I’ve been keeping busy is just really focusing on work because I really love the research project I’m a part of now. And just like really making sure I’m making the time to like be mindful and do some yoga – a lot of yoga, actually. And just talking to friends and like old buddies I haven’t caught up with. So that’s been really nice.

RICK: All right, well guys, this was a fantastic conversation. I so appreciate your candor and openness in talking about this stuff. This was amazing, thank you so much.

SINDHU: Thank you so much Rick and Ginger.

ASHA: Great, thank you.

GINGER: Thank you. Take care everyone. Big hugs!

SINDHU: Take care!

GINGER: Take care! Have a good night. Stay safe, and hope to talk again soon. Bye-bye everyone.

[gentle, propulsive mandolin and guitar music]

 

Outro

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.

Raising Voices Events

• Stories from the Homefront and Beyond: Open Mic
• Mr. and Mrs. LaQuesta Go Dancing

Stories have the power to engage, to transform and to move. Our communities are a reservoir of stories, and thus, of power waiting to be unleashed. This is one of our core beliefs in CIRCA-Pintig. We also believe that the arts can harness and release this power in unimaginable ways. But the arts can be used against the very same communities where the stories come from. This is why we also believe that it is crucial and necessary for community members, our storytellers, to be fully engaged in our work as ATORS – Artists – Teachers / Trainors – Organizers – Researchers – Service providers. We must have integrity and be accountable for the stories that are entrusted to us. Our work, hence, must be rooted, developed and conducted with, by, and for the communities that we claim to serve.

From its founding, CP has always tapped into the rich reservoir of immigrant stories, starting with its own members’ personal stories, to address pressing community issues. The Raising Voices program aims to continue CP’s decades-old home-grown tradition of story-collection and storytelling from the personal experiences of community members most directly affected and whose issues CP aims to educate, organize and mobilize around and whose interests CP hopes to serve.

In 2020, the Raising Voices program focus will be on the front-line care providers facing the brunt of the COVID-19 pandemic. In collaboration with other community organizations, CP will gather stories from home-based senior/elderly caregivers whose voices and struggles have been buried under the heavy weight of the pandemic’s toll on many fronts. Collected stories will then be transformed into short monologues, podcasts, social media and newspaper releases as a way to generate community dialogues and popular education. The end goal is to be able to engage community members and the larger public in direct action such as contacting elected officials for the passage important legislation such as earned paid sick leave for home-based caregivers, connecting caregivers with social service providers such as social workers, counsellors, mental health professionals for specific needs, or providing interpretation and/or translation services as needed.

 

Episodes

Episode 3: Noah (June 4, 2020) (Watch Video)
Episode 2: Hailee (May 29, 2020)
Episode 1: Asha & Sindhu (May 20, 2020) (Watch Video)

About From Stigma to Mad Pride Podcast

From Stigma to Mad Pride is a Capstone Project led by a trio of UIC students in the Disability and Human Development undergraduate program. For the Spring 2020 term, under the guidance of UIC Professor Roooshey Hasnain and CIRCA- Pintig’s Artistic Director, Ginger Leopoldo, they explored the possibilities of serving the disability community to de-stigmatize mental health within the context of the intersectionality of mental health and Asian Americans identity, and/or Asian immigrants identity.

The purpose was to gather stories of individuals’ experiences and create a platform by podcast as storytelling. They sought to extend the mission of CIRCA – Pintig in advocating for the well-being and cultural understanding of Asian immigrants, Asian Americans in Chicago. In portraying and giving voice to community members at the intersection of mental health and Asian immigrant/Asian Americans identity, mental health stigmas give way to Mad Pride, and form alliances throughout the student population of the University of Illinois at Chicago and surrounding Chicago immigrant communities.

The work is essential to, not simply telling our immigrant stories, but also, engaging our community in a collective reflection of key issues, and, most importantly, uncovering creative solutions for our community’s particular concerns. CIRCA-Pintig is an ally for disability and mental health activism in Asian and Asian American communities.  This program’s mission is to continue the invaluable dialogue created across students and faculty, families and communities.

DHD 400 is a 16-week capstone course at UIC for undergraduates. Students are matched with activist groups and community-based organizations to produce a service-learning project that they develop— in partnership with people with disabilities, and their families, as well as self-advocates, practitioners, researchers, legal and civil rights advocates, educators, disability leaders, local officials, policymakers, artists and theater groups, and allies. The capstone is structured to cultivate interdisciplinary, innovative project-based partnerships that bring students, faculty, and community leaders— together to advance disability studies to new levels! The DHD 400 experience is transformative for our students, who move from service learning to activism.