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

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.

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