Welcome to another episode of Project Voice! Today, we will be discussing about a topic that surprisingly, is not brought up as often as it should be and that is disability! In this episode, Maya Ghorpade, Doris Jung, and I will be sharing our personal, intersectional experiences on growing up as Asian women with disabilities. Whether they are physical, mental, or intellectual, disabilities deserve to be included in every platform of discussion for marginalized communities. Tune in to learn about how having a disability affects every aspect of our lives, why more attention needs to be put forth on disability support services, and what kinds of efforts we can make to engage others in discussions on disability.
Maya is an 18 year old first generation Indian-American. She is a student at New York University's College of Nursing, and has plans to help revolutionize access to healthcare for People of Color. She enjoys making art, visiting museums, trying new foods, and taking naps. Her goal in life is to be at a place where she feels at peace with all of her intersecting identities.
Doris is a tiny 20-something year old full time paralegal by day and fashion illustrator and content creator by night! She runs a blog called "I Wear Shirts as Dresses" (iwearshirtsasdresses.com) to share her life as an individual with dwarfism and a lover of fashion. As a second generation Korean-American, she aims to bring awareness of disability and dwarfism in the Asian-American community, as disability is often a topic kept hidden in the dark.
TRANSCRIBED BY SHIVANGI RAMACHANDRAN
PROOFREAD BY LUCY PING
JESSICA NGUYEN, HOST: Today’s podcast is brought to you by Audible. Get a free audiobook download and 30-day free trial at audibletrial.com/projectvoice. Over 180,000 titles to choose from for your iPhone, Android, Kindle or MP3 player.
(SOUNDBITE OF MUSIC)
NGUYEN: Hello. Welcome to Project Voice. This is Jess here. Thank you for tuning in. Today I have two very special guests. Their names are Doris and Maya. I’m so happy to have them here to be interviewed by me. Today we will be discussing a very important topic that’s often not brought up in our daily conversations, and that is disability and I don’t know if my interviewees know but this topic really means a lot to me. I think in our world, there are so many disabilities out there - mental and physical. There’s a wide variety, a diversity of them that we often don’t bring up, as often as we should. And we don’t see the world in a way that’s accommodating for all. I mean, unfortunately, the world isn’t accommodating to everyone, to people who are not able-bodied. So I think, today, I want to dedicate a very long episode, or a very long (laughter) episode, or just an episode, to cover the foundation, to cover what is out there in this topic to talk about. Like, why we need to learn more about what it’s like to have a disability but also focus on the intersectionality between growing up Asian and having a disability at the same time.
To start off, I would love it if you two could introduce yourselves.
MAYA GHORPADE, INTERVIEWEE: Hi everyone, my name is Maya. I live in New York City, and I attend New York University for Nursing. I struggle with a plethora of disabilities, and the ones that most affect me are my intellectual or learning disabilities, especially in an academic setting as rigorous as NYU, so I’m really excited to be here and talk about the intersectionalities of being Asian and having hindrances that schools may or may not necessarily be aware of or be accomodating of. Or just, certain things that people in academia are not as sensitive to.
NGUYEN: Cool, thank you.
DORIS JUNG, INTERVIEWEE: Hi, everyone. My name is Doris. I’m super excited to be here today. I have a couple of different disabilities but today I wanted to focus more on my physical disabilities in today’s discussion. I’m a paralegal right now. I’m currently a paralegal in my day time, but I have a lot of after-work hobbies. I blog, and vlog, and I try to do some illustration. I do fashion illustrations but it’s a lot after 40 hours of a full-time job, so... It takes a lot on my body working and trying to keep up, [to] maintain my social life and [to] maintain my health and my, I guess, emotional sanity. So I’m really excited for today’s discussion, and being an Asian American, and having a disability, I think, it’s a very quiet topic, so I’m excited to hear what we’ll talk about today.
NGUYEN: Oh yeah, definitely. I guess I could join and share with my experience, personal experiences, with disability as well. I have a hearing disability. People don’t see it; people don’t realize that I do. It’s unilateral deafness. Yeah, I used to use an FM unit which is like a microphone [that] I would carry around in school and give it to my teachers, whoever is speaking during the day and they’ll speak into the microphone and I’ll have a hearing aid, hearing aid piece, that I would wear and turn on whenever they are talking, so yup. That is where I’m coming from.
So in terms of questions, I’m going to start them off now. So the first question is: So, diction is very important especially in terms of how you identify yourself and I wanted to know whether you use the words “handicap,” or “disability” more often. Like, what are your feelings towards these words? And what kind of connotation do these words connote to others?
GHORPADE: Well, personally I’ve always been more inclined to use the word “disability” especially within the mental illness realm. Most mental disabilities are referred to as such. I think so in terms of connotations, both words, at least to folks who don’t suffer or aren’t necessarily aware, or who don’t have first-hand experience with disabilities or with handicaps of any kind, both of the words are very loaded and have a negative connotations that they carry with them. And so I think in terms of… it’s... it’s about preference, I would say. Because both words are equally as stigmatized in contemporary society, or at least how I understand them.
JUNG: I’m kind of on the same boat as Maya. I do use the word “disability” a lot more. I think I rarely use “handicap,” but my feelings towards the word “disability” is, it has a really negative connotation, like Maya said, but I don’t mind using it. A lot of people seem to be, I mean, even those with disabilities, I notice they’ll say, “I’m not disabled. I don’t have a disability. I’m just different.” And when I hear comments like that, I’m just like, “You know it’s not a bad thing.” I think that’s the problem is that, people think that it’s a bad thing. You know[…] because I feel like having a disability is just another identity factor. You’re not going to be ashamed to say “I’m not a woman”, or “I’m not Asian American”, you know. But I feel like that’s kind of what happens with the word “disability.” I don’t like using the word “disabled,” like no one is just disabled, like your existence isn’t disabled so I make sure I say “people or person with a disability,” because it’s just weird to say, not disabled and just generalizing, because I’m like “disabled from what?” It’s a person who has a disability, so I get kind of annoyed when people say, “Oh, she’s disabled.” And I think it’s really important to educate people and correct that to say, “You know, I have a disability”, or “A person with a disability” not “the disabled,” or “she’s disabled.”
It’s a very negative word. I know it comes for at least for visible physical disabilities, but it’s different from mental or intellectual disabilities, because it does stem from the kind of like circus phase in the past. So I feel like it has a freakshow connotation and I really don’t think that’s what it should be because it’s just another identifying factor.
NGUYEN: Yeah. Like, for me, as someone who is interviewing people, I just -- approaching others and how to pitch myself to others. How do I word things so it’s, where I’m coming from, does it come off as offensive to them? Should I use the word “disability,” should I not? Because everyone has a different kind of relationship with that word and other words, and it all stems from their personal experiences growing up with them. So it’s definitely a territory that I myself have a hard time navigating through. I feel like I have to tiptoe around, and whenever I’m talking about disabilities, [...] because I don’t know, there’s not a word that’s more positively connotated. It’s just “disability” and that’s it.
“Handicap,” I don’t hear as often, because it has a heavier connotation behind it. Like, people have a different image when they think about the word. Yeah, I don’t use the word “handicap” either. I like to use “disability” too, personally. I haven’t thought too much about the word itself until now, and how it gives off an isolating feel, or like, an othering feel. Like when I use it, I feel like I’m othering myself, right? And it’s a word that put in biases still. I had no choice over what word to choose from, and to identify myself in that way, in terms of my hearing situation. So, that leads to our next question: What are some examples in life that show you that there needs to be more attention put forth in providing disability support services?
GHORPADE: In academia, and at my university in particular, I think there are many many instances that, even in my first year of college that I've seen where I’ve noticed that my disability was not the priority, or maintaining my anonymity and maintaining my dignity were not factors in accommodating me, so one example that I can think of in particular, is I require supplemental notes in most of my classes, and I took a summer course. I just finished it today actually, and they usually send out an email at the beginning of the course, requesting that a student submit their notes every week so that I can have them as my supplemental notes, and the course is six weeks. So the first week, it is expected that you may or may not get the notes because there’s always a delay with someone responding to the email, but it had reached Week 4 and a half, almost week 5, and no one had come forward to give me any notes, and no one in the Disability Center had reached out to me, and I had to email them and say “Hey, I am still in this class, and I still require the notes, and I haven’t been getting them, and are there any other alternatives?” and they responded about maybe 4 days later and said, “Oh yeah, you can consider recording the lecture.” which I do anyways, already. And my issue with that is, if I can’t sit through the lecture in real-time and pay attention, how am I supposed to pay attention to a recording in real-time, again? So I think [...] there are not many backups, and there aren’t that many well-thought through in terms, of accomodations I’ve noticed.
JUNG: So for me, I have dwarfism, so I’m only 3 foot 8 inches. There are a lot of little things for able-bodied people that they would never think of isn’t “accessible.” Even just like grocery shopping. Sometimes I want to do a big shopping haul; I don’t want to just grab like a few things, so I would like to use a cart instead of a basket, but even like most of the carts are super high and there’s a lot inaccessibility still. I mean, America has done a really good job compared to a lot of countries but just, stuff like that like, you know at the grocery’s - the counter, the bank counter, ATM machines, I feel like plan it in advance. Like, this location, I can reach, and that gas station I know I can’t, so then it’s like there’s a lot of like, pre-planning that I now automatically do. I just think a lot more physical accessibility revamping can still be done. I wish I could more at the top of my head, but it’s always kind of like the little stuff like that. Just going about my day…
NGUYEN: Yeah, definitely. It think it depends on where you live too, probably in more urbanized areas. In San Francisco, people have criticized the city to be not as accommodating because of the streets, how you would go around, how you would just transport yourself, like how do -- yeah, it’s harder for people in wheelchairs to get access to certain places, certain areas, or the roads are just not comfortable enough to walk, move around on, and in terms of my personal experiences with it, I do find, how institutions provide disability support services make a huge difference too. I discussed with Maya before about this like, how like having an FM unit… You made a really good point about how it’s invasive, how being forced to be equipped with this device, and then having to show it to someone else, and having to expose this disability. I guess you will sometimes and feeling embarrassed, feeling humiliated sometimes when it comes to using it because all the attention is put on me whenever I take the microphone out, and when I give it to the teacher. Later, in the years, I got used to it and I didn’t care too much about it. But I know some people who have been giving an FM unit, like I did, and not a hearing aid for some reason, an FM unit, and they were forced to then give it to the teachers and often times they would end up not using it because it forced a spotlight on them and they didn’t want that kind of attention. They didn’t want to be seen or acknowledged in that way. So how disability support services are provided is important as well.
So do you think disability, both mental and physical, or mental, intellectual or physical, is a taboo topic in our community? Why or why not?
GHORPADE: I definitely think it is a taboo topic, not necessarily within my own family, but in other families, other Desi and South Asian families that I am acquainted with, mental health in general in addition to any form of disability, whether it be mental, intellectual, or physical are generally kept under the rug. It’s very - it seems as something we don’t need attention being drawn to. Especially with a lot of South Asians - most South Asian folks who come here or many South Asian folks who are born here are first generation. And the pressure on first generation kids to succeed from their immigrant parents is unbelievable, so if there is anything that could bring any sort of negative societal attention to these first generation kids, those immigrant parents don’t want to have anything to do with that, so I think within my community, definitely there are no conversations. Virtually no conversations about disability at all, for fear that if we bring it into the spotlight, we will be seen as inferior, we will be seen as incapable, we will not be able to succeed to the standard we have to be accepted in America and things like that.
JUNG: I definitely think that it is a very taboo topic for all disabilities. It’s funny because I always -- I haven’t really met anyone else that’s Asian with a visible physical disability which makes absolutely no sense, because you know, there is no spell that was put on mankind that exempted Asians from getting these different medical conditions. And physical disabilities - there is so many different kinds, and it’s hard - you’re telling me that there’s no Asians with them, and for instance, I know that in my Korean community, but not like mine, but my motherland Korean community, it is very well-known, it’s not said out loud, it’s very known that they kind of just stay hidden in the houses. They don’t come out. And what’s the reason for that? Obviously because your existence is so taboo, you don’t feel, not just comfortable, you probably don’t even feel safe going out in public, and it’s obnoxious because I’m like, it’s like your life, but because of societal views and pressure you’re just like hiding at home, and it’s terrible. Same with mental disabilities -- it’s totally hidden under the rug, like Maya said. I mean I could just think of so many people I know, friends, family, acquaintances that suffer really severe mental disabilities and I don’t get why we treat that so differently than heart disease or any other disease. The brain is definitely also a body part, and I don’t know Asians think that it’s not real, or maybe they do think it’s real, but like Maya said, you can’t bring any more negative attention to the family, after working so hard, it’s like, why can’t you just suck it up? And I think that attitude is so toxic because you can’t really help having a disability.
NGUYEN: Yeah, it sucks because some families credit superstitions as a source of disabilities - or why disabilities exist are - as an act of karma. I think that’s often a reason in my family --
DORIS: That’s very common in Korean culture too.
GHORPADE: Same with Indian and South Asian cultures. Very much related to family, like if someone is suffering, the entire family is to blame. So, it’s like “Oh we wouldn’t want you to be outside and disabled because you will bring our family shame.”
NGUYEN: Yeah, it’s interesting to notice that they would rather - [...] they are more prone to crediting to superstitious beliefs than - the, again, “act of karma” versus investing their attention and energy into researching about disabilities, like taking an effort (inaudible). What it means to have a disability? How you can be a support system to people with disabilities versus blaming it, playing the blame game. In terms of why, why do certain family members have disabilities, and why certain don’t. And again, this in a way contributes to this continuation of stigmatizing disabilities in general. Like again, they’re still seeing it as a bad, versus just as a thing.
I wanted to add in and bring up a really good quote that I found in an article online. "We are treated inadequately within the AAPI community because, of course, having a disability is seen as being helpless and people are uncomfortable around you and within the disability community. People see AAPIs with disabilities as being shy. The disability community is predominantly white middle-class people with disabilities who are loud and opinionated and who know how to fight for their equal rights."
And the writer Lin goes on to suggest that stereotypes of the soft spoken Asian American remain pervasive in the mainstream disability rights advocacy groups. So, I really was just curious about what your thoughts on that was. I know that both of you have mentioned it before but I thought it really speaks the truth in terms of who disability support services are being aimed to. They're not really accommodating to people of different cultural backgrounds. It's more about and for white people and white middle-class people who have the financial means to provide themselves. And that's really important because that's really where class can come into play or ethnic class plays a role, in terms of how much can you support yourselves and how much resources or how many opportunities do you know out there can help you where you're coming from? So yeah, any thoughts on that. If not, we can move on to the next question.
GHORPADE: I actually had a quick thought. Actually, in my class I learned that, in med school, or when you become a psychologist or a psychiatrist, there are no classes that are required on cultural sensitivity training. So I think that's also a very huge barrier in America. I would say a very small percentage of psychiatrists and psychologists and folks who perform your psych evaluations understand the stigma of mental health and of mental and intellectual disability in our community. And without that inherent understanding, the way they approach our neuron situations, it's very hard to feel comfortable reaching out to them and it's very hard to feel like we're being accommodated to and I think that it's really profound how there's literally no training required when that's a huge factor in how mental health manifests in different communities so I think that quote touches on that definitely and what you said earlier how disability awareness and accommodations are primarily meant for middle-class and upper-class white Americans.
JUNG: Yeah, I agree. I think it goes back to that stereotype that white America has on Asians being, I guess, docile and meek. And that quote just... because it's perfect because I think it says once that we're shy and I know for like for me, I'm really not shy. But I don't feel like it's really speaking to me and the movement, the disability movement is geared towards me. So I definitely agree. I think Lin is absolutely correct.
NGUYEN: Yeah, in terms of the people providing the disability services. Looking at the diversity there, or more like the lack of diversity. Actually one of the first episodes, when we're talking about mental health, and providing therapy and other mental health related services, the people who are involved in this like, we need more Asian, Asian American, Asian American women in this industry providing these services because they have the cultural background, because they have the cultural knowledge that would greatly help so many people out there.
Next question! How does having a disability affect different parts of your life? Your relationships - both platonic and romantic, your work, your personal development so on so forth.
JUNG: This is like the big one.
GHORPADE (llaughs): Yeah, this is a huge one.
JUNG: Oh my god, this is so big, I don't even know...
GHORPADE: I know there are so many factors...
JUNG: Well, I guess I'll just go in order, your question order.
NGUYEN: Okay (laughs)
JUNG: I can't say it doesn't affect my life. That would be a complete lie, but at the same time I feel like I'm always like 50-50. Sometimes I feel so, just like a normal basic girl. Other times I'm like, my disability causes so much inconvenience in my life, but for the most part just like general day-to-day there's a lot of annoyances. But in terms of relationships, I think I had to make a very strong effort to be this outgoing, kind of like friendly, funny person because I always think about how if I was not a social, outgoing person, my life would be so much more different because people don't feel comfortable approaching me first and I almost feel like kind of I created my, and we all create who we are, but I definitely think I made myself accessible so I seem "normal." And it has made my life relatively normal for the most part. But for my work, my professional development, I think people with physical disabilities definitely have - I mean we're without a doubt affected. I usually when I submit a job application, almost all applications I get a call back. It's based on my resume and app and I almost always get an interview. The problem is after the interview, sometimes when I go to the interview... Growing up with dwarfism, you kind of get this sixth sense. When people look at you, you kind of know they're either thinking "Oh wow, she's like a really cool person." You know that Oprah inspirational stereotype that they do. Or I look at their face and they just kind of have the "Uh. Um, no" like I already sense the vibe and I usually know within the two seconds of sitting down for the interview what it's going to be like. Because for professional setting, it's even worse because people have like a - you know, everybody has a pre-disposition of you know like what people with disabilities can or can't do. People who are really not open-minded; they've already made their decision before I have even finished the interview. And I do feel like people with disabilities - we have to try double the effort just to even out the playing field. So if I want to seem exemplary, I feel like I need to do quadruple the impression so it's really hard. I mean, I'm lucky - or I guess I'm blessed - that I do have a job and it's stable, pays decently well. I know a lot of people with disabilities struggle in the career and professional development, which is really unfortunate because employers are missing out on really good employees. Great employees.
GHORPADE: So in terms of nursing, I think, especially with within higher education there's that baseline level of - you have to be competent all the time, you have to always know what you're doing, you have to always be successful, you have to be doing well in all of your classes. There are all these bars you have to meet. And I think especially with intellectual and mental disabilities, it's not as easy to meet those bars and when you're surrounded by people who seem to be reaching those goals and reaching those milestones with such ease. It's very intimidating, at least for me. When I first got to college and people were complaining about their A-minuses and I was like "Oh my god. How am I supposed to pay attention in a lecture of 200 people when I spend my entire time focusing on how many people in the class have red hair and just all these irrelevant things?”. So that discrepancy within academia, because I'm primarily a student right now, was very shocking to me. And then in terms of nursing, there's another, even higher, level of competency that you have to maintain to be a nurse. Nurses work 12-hour shifts and they don't get breaks and they are not supposed to cry and they are not supposed to exhibit any type of emotion or anything that would be considered a hindrance to their jobs or to the jobs of the doctors, nurses, and professionals around them. And that level of professionalism is not easily achieved by folks who suffer from disabilities. And I think that being around people and talking to professors who speak about how they did 3 shifts in a row so they worked 36 hours and just hearing all these stories just makes it very difficult to feel like the job world is accessible. And I think especially in the medical field I've noticed that you can't be sick and be a medical professional. There's that weird discrepancy and I think all the time to myself but aren't the people who could help the most the people who have suffered and the people who have experienced disability and the people who understand these issues? But time and time again all of these roadblocks that I encounter where it just feels as if this is a field that is not accommodating. It doesn't even acknowledge that folks with disabilities will be interested. So I think that's something I run into a lot in terms of work and school.
NGUYEN: I have to agree with both of you on that in terms of disabilities. I remember at my first job feeling really self conscious telling other people about my hearing disability simply because I don't want people to see me differently. I want people to see me as an equal whether I'm at work or whether I'm in class. So I don't often bring it up unless I have to. And usually that's like, if we're walking on the sidewalks or something I'd be like "Oh yeah. I'm half deaf, that's why I'm on your right" but other than that, I find myself not bringing it up that often because I don't feel like the need to until I feel like I work normally. I can do what whatever anybody else can do. And then there came an incident where I couldn't pick things up easily. Like I couldn't hear certain things well, especially instructions and that was during my training period for my first job. And so I told me trainer that I had a hearing disability and when that piece of news spread to the rest of the company, another employee at that time brought the topic up. She said, "Hey, I heard this from the person that was training you and he told me that you have a hearing disability. And I would recommend you to get a hearing aid", and I felt so bad after that. Like she told me that she thought it would be better for me to get a hearing aid because I would hear better and perform better at work. And I understand where she's coming from. She probably said it with good intentions but at the same time she didn't realize how ableist that comment was. And at that time I didn't know how to feel really. I was like, should I feel bad about this? Should I feel guilty about not being able to hear everything she’s got to say or wanted to tell me? And instead getting a hearing aid - another thing she didn't take into account or put too much thought into was that some of these aids, some of these support services cost money. So she wasn't really aware of the financial situation I was in or she didn't realize it. I mean we work together and she probably knew how much I got paid working as an entry- level. So of course working with an entry-level salary, it's going to be a struggle to provide myself with a hearing aid. So, in a way, it's classist. Even if it comes off as a micro aggression, this is why we're having a discussion like this. Why it's important to make it clear for others to be aware of what their saying to people with disabilities. Because it can come off as ableist. It can come off as invalidating for others.
So now that we've talked a little bit - a lot about - work, let's move on to romantic relationships, Platonic relationships too.
JUNG: Sorry I forgot to… Can I go back?
NGUYEN: Sure, sure.
JUNG: So I think this is really important to note. I work in the legal field which is probably like on the extreme end, just like the medical field. It's not the place to get sick. The image of an attorney or a legal professional is a tall, white male. A very attractive tall white male or female. And at work, I definitely do feel like a triple minority. Clients when they first see me. Not just clients, but even like other departments, because I work in-house. I know at first they don't really -- they're kind of in shock and every day I still feel like, maybe it's all internal in myself, but I definitely do feel like they don't take me as seriously. And then my voice is super - you know it sounds very young, so on the phone I struggle with that too. I answer the phone and I get - I think at least once a quarter - I get :"Oh sorry I think I called the wrong number." I'll be like: "Are you looking for the legal office?" And they'll be like: "Oh yeah. Can I talk to your mom?" And I'm just like - if people just spent like 3 extra seconds of their energy, why would a child be answering a legal office's phone? It's just stuff like that I'm like, oh it's just day-to-day ableist stupidity, as much as I hate to say it. It's kind of a struggle but I know that it's something I'm going to be dealing with everyday.
Okay, now, on to relationships. I had really, a lot of frustration and I don't want to say anger but it was kind of anger. I bottled up something for a really long time. Even my own best friends that I really, truly do love. And I know that they look out for my best interests and I know they don't mean to. But there's a really bad habit of people, society making people with disabilities asexual. And it's something that I struggled with and I think I still kind of struggle with but I'm a lot more outspoken about it now. I wrote a blog post on this. I think you read it, Jessica.
But I don't know why people think, people with disabilities... I mean we're all same humans but I don't know why they think people with disabilities are exempt from wanting romance or companionship. So it thought that was really interesting and it definitely kind of put like a -- not anger, I don't know what the right word is. I was a bit upset at my friends because I think they were even subconsciously were asexualizing me for a long time until I finally brought it up. So I definitely think we need to be a lot more vocal. Because I definitely am not asexual. I think I love boys too much but it's really hard. Dating is already hard enough for the average single woman right now in 2017. We already have yellow fever. We already have to look out and be cautious about guys with yellow fever, but then I'm like - I have to sort through that and then I feel like I have to sort through a fetish for little people, which absolutely freaks me out. So I definitely do ask if they've dated any other people with dwarfism. I get to that pretty early on and I'm straightforward because I just can't - it's so gross. Yellow fever and the little person fetish. So it's hard. I feel like I'm maneuvering through a field with lots of tangle weeds. And it's hard because I don't know if it's hard because of my disability or this is the modern day woman's dating struggle but I feel like it's hard to find someone that will commit seriously because a lot of guys.... I like having good conversations and I think guys also realize that they like my company. They like hanging out but it's hard to see someone that's 3 foot 8” as a serious partner. And I don't blame them but you know, it's also my life so it's kind of difficult to deal with. So I feel like it's always on the two extreme ends: either they really connect with me emotionally and mentally. They like my companionship. But they're not physically attracted to me which I don't hate them for because I think attraction is very important in a relationship. And then I feel like on the other end, sometimes there's guys where you know they do find me cute. They got to know me and they are attracted to me. But they don't know if they could really settle down with somebody that's so tiny and small. So I'm just like - it's two opposite ends and there's this quote that really embodies my situation. I can't remember who it's by but it goes something like "I don't want to be loved because of my body. And I don't want to be loved in spite of my body. But I want to be loved including my body." So I think that really captures how I personally feel because I don't -- like the first line, clearly you shouldn't love me for my body because that's clearly a fetish and that's super creepy. If you're running around collecting little people women, so that's creepy. The second one: a lot of people might be like "aww, he lives you in spite of your body" but I'm like hell no. I'm still a woman. You should find me attractive. So I don't think you should love me inspite of my body but I think you should love whoever it is whether your partner has a disability or not, including their body. So I really like that quote. I think it's really relevant for people with physical disabilities. Or I guess any disability actually. But yeah, it's really hard to get away from that little sister, cute girl, little sister image because I'm not 16 or 5 like I've lived almost 30 years so I feel like I’m always -- sometimes feel like I'm shouting at nobody saying like "Take me seriously!" But I think it will take time. It's just I think every woman struggles with like sorting through the bad apples so it's difficult but everybody's life's difficult in the dating world. So yeah...
GHORPADE: In terms of relationships, I'm going to focus more on friendships and platonic relationships because I have a long term boyfriend of almost 4 years and we went through all of those hurdles of me explaining to him how I manage and work through my disability and he was a large part of how I worked through understanding and accepting the ways in which I understand the world and things like that.
As for friendships, especially in new environments, I find it, especially with a non-visible disability, I always struggle with whether or not I should tell people. And I think that's been a very big factor in how I relate to people and I always like - we've talked about throughout this conversation - disability is a huge part of identity. And I don’t feel comfortable leaving an aspect of my identity out of my conversation, or out of a friendship but there is also a part of me that I know that a lot of people will not react in a "Oh, I'll still accept you for who you are." Or "Oh, that doesn’t matter to me" kind of way. People will still distance themselves. People will actually come up to me and have been like "Oh. That's so unfair that you receive accommodations. I wish I could use my laptop for lecture" or they'll be like “Can I sit next to you while you're on your laptop?” or like the more extreme, when I used to take meds they'd be like "Oh, will you sell your meds to me because I have a final tomorrow?" Just very -- just sticky situations I'd rather not deal with. This battle I have within myself when I'm forming new friendships and relationships - do I tell these people? Do i wait? How long do I wait? Do I wait a week? Do I wait a month? Do I never tell them? Do I wait until they see me with my laptop in class? There are all these variables and it's very hard to maneuver them. I think that’s something that I’m still figuring out especially in a new school.
All of my friends from high school know that I have disabilities and they - most of my friends struggle with mental illness issues as well and struggle with disabilities as well. So I think befriending people who understand my situation has been a way for me to get over that barrier, so it's not like everyone is going to understand. Not everyone I meet is going to be caring and accepting. So I think just trying to understand the way my disability fits in my friendships and things like that.
NGUYEN: I’m on the same boat in terms of whether or not I should tell certain people and when should I tell them? When should I bring it up? Like, going back to the topic of how people perceive me because of my disability. I really appreciate it when my friends are mindful of in terms of like - oh, they'll move to my left because they remember. They're being accommodating to me. And I didn't have to ask. I didn't have to vocalize my need and that's something that's really thoughtful. But something that's like wow, it means a lot in friendships. They don't realize it, but it does. There are friends who… they're like "Oh. OK. Cool." and there are others who are more curious about it and I'm fine with educating them on my experiences with my disability and so I do appreciate when they show this interest in wanting to learn more about a part of me that makes up me. Friends - those who are willing to listen, who want to listen to you and want to give you the space to share your voice and share what you want to share with them.
I treat both platonic and romantic ones the same. Like I think they're actually the same in terms of -- I mean in terms of like in school, like for example, when you mentioned earlier about "Oh. Why did you have extra time on your test?" I've had that too. When I was doing state testing, I was given a bunch of time for example because of my disability. I felt like, guilty [laughs]. I felt like I didn't have the right to have extra help because of - it seemed like my disability wasn't as disabling as other disabilities. So in a way, in terms of support services, feeling worthy enough to receive them is another issue there. I think we all have the right. I think we all deserve the right to have access but some of us don't feel like we're deserving. And I think that's when it gets problematic because we shouldn't make it into a competition about whose disabilities are worse - whose disabilities deserve more services or deserve services versus --.
GHORPADE: Yeah, people often forget that disabilities occur on a spectrum. It's not just yes or no. You qualify for accommodations, you don't. It’s all -- even accommodations themselves work on a scale. I think that's something that people really really don't seem to understand. They sort of group everyone who has a disability into one group and that's where a lot of stigma comes from unfortunately which is unfortunate within of itself because folks who are not high functioning do not deserve to have a stigma at all to begin with. So yeah I think the fact that there's no room for people to understand that there's not one disability, is really hindering in relationships and the way people understand how we move through the world.
JUNG: Yeah, that’s so true.Sometimes I have to get - the airport is a good example. Sometimes if I know the gate is super far out, I actually get wheelchair service. It's not because I don't have legs. So somebody might look and be like I don't know why she's getting pushed on a wheelchair because I have legs, I'm just short. But they don't realize I have really bad pulmonary hypertension and if I'm having a bad day of fluid I literally like even walking like 5 feet to the bathroom, I just can't.
So, Maya is right. It's not like the one size fits all.
NGUYEN: Mm hmm. Yeah, Disability goes on the spectrum, you know. It's like gender. It's like sexuality. [Inaudible] is not on a spectrum.
And before moving on to the next question, I was curious to know whether you're interested in sharing your personal development. Your personal relationship to your disability.
GHORPADE: Definitely touching on what we just spoke about with the whole spectrum conversation. I did not understand that myself when I first learned that I had a disability or I had several disabilities. I felt very, very guilty for a very long time. It did not help that I had people around me saying: "Oh, but you're so smart. Why do you need extra time?" or things like that. Or: "You probably got a good SAT score because you got extra time." Or these kinds of remarks. They just sort of contributed to this accumulation of doubt of my deserving of accommodation, whether or not my diagnosis was valid, whether or not my identity or whether or not my ability to take up space in disability communities was warranted. I often struggled with that. And I think it's taken me a very long time, but it's been you know, a time of growth. It's taken me a significant amount of time to understand the spectrum concept for myself and how I fit in it. And I think that me grasping that integral ideas of that fact that it's a spectrum really contributed to my personal growth and the way I define myself and the way I understand how I am affected quite a bit. So.
JUNG: It's been a really long time coming for me as well. I wasn’t -- I think even 5 -- 3 years ago I don't think I was as comfortable with myself and my disability. I mean I think after college, I definitely accepted it but now I'm like very comfortable in my own skin. And I don't think I could have said that even two years ago but when I was younger. I remember when I was in middle school, one of my best friends asked me at lunch "Hey Doris. You're not a midget right? You're just little" and the word -- for a lot of people with dwarfism, that ‘m’ word is very… it’s very.. It still kind of makes me these up when I hear it but I'm a lot more comfortable saying it now, and addressing it. But it is very frowned upon. It is a very derogatory term. And so when she said that I instantly just clammed up. I was in, like, seventh grade I think. She wasn't even done with her sentence and I was like "Yeah. Yeah, that's not me." I still remember that conversation. And I was uneducated about dwarfism, like even myself. So I couldn't, you know, I couldn’t really educate my friends because I had no idea about it. I was so wrong in that answer. Midget is a derogatory term for a person of short stature, which I do have short stature. So I totally answered her wrong. I told her "Yeah, I'm just small. I'm just proportionate but small" and she was like "Yeah, that's what I thought. Like you’re not a midget" and I want to slap myself - my thirteen year old self - when I think about that now. And I would -- maybe like every couple of years, I would see another little person out probably, I would get so uncomfortable. I would get so uncomfortable. I guess I was in denial I guess if that's the right way to put it. I was just small. I didn't have dwarfism. Back in my head, that's what I was thinking. I remember i was like at Caesar's Palace in Las Vegas with my family and we just straight up walked right past each other. There was no other way to move and I just remember I just got so uncomfortable, so awkward. I didn't know how to act -- because you know other people could see "Oh, two little people walked past each other" so I was always just thinking about what other people think, what other people think. Like "I'm not a dwarf. I am not a dwarf." I think in middle school, when teenagers become super hormonal. Eighth graders I feel like are the worst . It definitely didn't skip on me. I was very depressed. Even in elementary school. Even though I didn't understand dwarfism. I had a happy childhood and then I hit eighth grade and I was just like this very deeply depressed. I would never go through with it but all I was thinking of was, was about suicide, how I wish I wasn't alive because all my friends and all the other girls; they're getting their growth spurts. They're getting butts and boobs. They're getting boyfriends. You know it's different now but thirteen year old boys don't want to date a little person. You know I had a lot of friends that were guys but you know all my friends were getting boyfriends and I was just... I felt like my identity was all based on my height at that age. It’s been like a.. and it's like a progressive growth and I'm still learning like about disability and even just my personal disabilities and dwarfism and my pulmonary issues. But it's been a long time coming. I will definitely will acknowledge and admit that I hated myself at one point in high school and middle school and now I am literally unapologetic. This is who I am and if people have a problem with it. I'm usually just like, goodbye. Move on with your day, but it was not an easy coming.
NGUYEN: I love hearing both of your journeys. How positive it turned out to be. For me, at least I I feel like I need to invest more time engaging in discussions about disabilities. Only because I'm only deaf on one side, I don’t even realize, sometimes I forget too. When I do remember I like to think that... I don't know, for me I think for me it's struggling with being seen as an equal really. Yeah, people have disabilities, get over them. That doesn't mean they can't work as hard, they can't be as attractive, they can't be as smart as you, or are as capable as you. I can't really use an FM unit at work. I can't go around and give it to whoever is speaking. That would be ridiculous and so I don't really have any aid. Although I can get a hearing aid, if I wanted to but I think for me I didn't really feel the need... like I had a strong need for it. So my journey with it was more... [...] what's happening now is that I've become less invested in thinking about my disability. But at the same time it's still important to realize that at certain moments, it does make a big difference. Especially when it comes to interacting with people. So, I still kind of try to grapple, overcome the thought that wanting to be seen as an equal without my disability. Like what's wrong about already being confident and knowing that I am capable and I am equal to other people with my disability not despite it. So kind of with your quote earlier, “include your body not despite it.”
So. Wow, that was a lot. (laughs) I'm going to move on to - since we're still talking about relationships. How do you engage others, specifically your loved ones like family and friends in discussions of disability?
GHORPADE: That's a good question. I think one of my most used tactics is when we're in public or when I'm doing an assignment or when I'm engaging with a department in my school, I'll make sure to tell my family and friends "Wow. It's really unbelievable how inaccessible this xyz is." Like I'll be taking the subway from one location to another and I'll notice that the elevator has been out of service for a year and I'll be like "Wow, do they not realize that people need these elevators?" Or I'll be dealing with the Department of Disability at my school and be like "Wow, do they realize how difficult this is making it for folks who need these supplemental notes to perform well in class?"
So I think integrating that into my family and friends' thought process is my most favorite way of bringing up the concept of disability. I think because people don't notice those -- when the world is lacking in accessibility And we do. So I think bridging that gap is really, really, really important.
JUNG: I'm on the same boat as Maya. I think when you have a disability, you just - I don't want to speak for everybody but at least for Maya and I - I think we're just a lot more mindful, not just about our, our types of disabilities. I like what she said about we do notice, so we do need to speak up about it. I know how we said earlier, we talked about how it's taboo and we don't like to talk about disabilities and I realize that staying quiet and being polite, sometimes isn't the right method. I know the Black Lives Matter movement gets a lot of flack for I don't know, being loud? But I’m like sometimes you have to be loud. Doing things "politely" doesn't really get you anywhere and in relation to the Asian community, we've been quiet. Clearly that's not working. Because people are still obviously hiding about it. Hiding the topic or literally, physically hiding themselves from the world. So I am extremely vocal about all disability topics. And I know sometimes I'm a bit too aggressive because people have told me I am. I'm kind of like a in-your-face type of awareness person. Like that annoying in-your-face friend about different injustices. But to me, it works and I mean you get people defensive and they get kind of pissed off, but then they're thinking about it. So as much as I hate it, I am very aggressive in how I engage people and it's not that my intention is to make people in my life, my loved ones, feel bad or guilty but I mean, yeah you might feel guilty. But that's life. If that's how you're going to learn, you know that's what happens. Because I know when I get called out on something yeah I am at defensive at first but then you end up thinking about it, like "Oh shit, like maybe yeah. Maybe I was wrong.” And so -- I'm just like super straightforward. I don't like sugarcoat anything.
NGUYEN: if you can answer this, how does disability play a role in the political activist community? I know disability has been a topic on the rise in the activist community about how do we make activism more accessible to people with disabilities? Not everybody can attend protests physically, right? Not everybody can last these protest because it's so physically demanding. That's one example right there.
JUNG: I don't know. It's hard because for me personally I don't feel… Hmm. Disability plays a very almost minimal or non-existent role in political activism because I think was it last week or this week, when they were out there protesting I think in DC or...
GHORPADE: Yes, I saw that. They were doing a sit-in I think, where they were protesting the potential healthcare bill that would make all of their healthcare null and void and the majority of those people at least in the videos I saw and articles I read, they were disabled. Folks in wheelchairs. I saw several people who they said interviewed, who said "Without my healthcare, my disability would have gotten the better of me." All of these really beautiful and powerful anecdotes and it was just empowering to see all of these people in one space fighting for one cause. So I think I definitely agree with you there that I don't think there's much stopping folks with disabilities from making their voice heard and in terms of accessibility to protest. There are definitely other ways. You can call your representatives, sign petitions. There are -- even like make online zines about your feelings about current politics. There's a wide bracket of ways of fighting for your cause but I think folks with disabilities have been fighting for their own rights since the beginning, since forever. And I think that with newer, newer generations we lose sight of how much fighting we had to do to even get to this point. And I think keeping that mentality in mind that there are ways to make yourself heard regardless of whether or not you're able to attend a protest, whether or not you’re able to make it DC, or anything like that. There are ways and people have been using those ways and using those paths for decades. So...
JUNG: And I think that there has been an exponential accessibility now because of technology and social media. Yeah so I agree with you there, Maya. But earlier I didn't specify... within Asian American disability community, it is non-existent. We're very, very, probably not even 1%.
GHORPADE: I don't think I ever heard of any activist platforms that tailor to Asian Americans at all.
JUNG: No. I've spent some time Googling and I didn't find any.
GHORPADE: Yeah, there are Facebook groups for every intersectionality and I've seen none that are specifically for Asian and Pacific Islander folks who have disabilities.
JUNG: Yup. Yeah, I used the Facebook search bar. There is literally none. So it was very shocking.
NGUYEN: Good lead in to our next question then: so what are some resources and spaces that you do know, that you are well aware of, and would suggest our listeners to look into in terms of disability support services, narratives, representation and etc?
GHORPADE: I think a very important thing to know is that we - like we've been talking about this entire time - our identity is not limited to one word. There are millions of ways in which we identify and one of which is that we're all Asians and we’re Asian American, so even just making yourself heard and showing up to Asian American platforms, like, at your work, or at your university, or school. There's an Asian American society. Because you're disabled, that does not limit you from joining those groups and making yourself part of it. Because that is the most effective way in my mind to bring to the spotlight that Asian Americans with disabilities do exist. And we're normal and we're still Asian Americans so that's my first and foremost suggestion in terms of advocacy and making a space for ourselves. I think we're allowed to take up the identities that we identify as. We can take up all of the spaces because they are valid.
NGUYEN: Hmmm. Snappings for that.
JUNG: Yes, I second that. You worded that perfectly. Oh my gosh, Maya worded that so well. I was just going to say, be present - whether that's going to these other after school groups and club. And even online, I'm super active on Tumblr, Twitter, Instagram - a million different accounts on instagram - my blog, and Facebook, of course. But I think some of my friends might just think I'm just addicted to social media which yeah, that is a part of it. But like me being very involved and active on my social media is actually very intentional. I know I'm just one person but maybe like few times a year I've gotten messages, on Instagram direct message and email because my email is on my blog by Asian American little person females. And when I first got it, I was like, dude, this is why I'm super present on Instagram and Snapchat. Nothing is on private even though I get some nasty comments. And I get those on YouTube too. I get some really mean comments every now and then. But to me it's - I've gotten messages, they always have the same theme saying: "Hey, I just found your Instagram", "Hey Doris I found your blog", "I actually have been following you for a while now, but I really wanted to say hi finally. I'm a little person too and I'm Asian. I haven't ever talked to any other little people. I haven't met another little person, let alone an Asian. I love your blog! I love you instagram blah blah blah." I mean obviously super flattering. I'm super flattered but more than that, after we connect, I do message back or email back with them and we end up being like Facebook friends. I feel like... I don't want to say that I'm acting like their savior - that's not it at all - but I think having more - constantly connecting and finding more people that are in similar situations, it's definitely like individually for them I know they feel less alone. And I feel like the more we can gather and unite, that is how awareness begins. So, that's why I'm like super just present like Maya said and taking up space in the cyberspace. So I think... just make yourself heard and be obnoxious and don't be sorry about being you or for taking up space. I think that's all we can do as one person. But it surprisingly does a lot - if each individual keeps doing that.
GHORPADE: And if you notice that there are no spaces that cater to your identities or your disabilities, there are many routes to creating them. Creating a Facebook group, starting a blog, petitioning to start a club at school, starting a newsletter. There are so many ways. And I think a lot of people also forget that they have the potential to make a space for themselves. It's obviously a lot of effort. It's unfortunate that this burden is place on us to make for ourselves in society, but I think it is liberating because when you create your own space, you can define it’s parameters. It caters to your need if you create. And I think you shouldn't undervalue the importance of being able to do that as well.
JUNG: Oh yeah, so true. If it doesn't exist, you do have the freedom to something about it so...
NGUYEN: Oh yeah. That's a message that's often... That's often brought up in my past interviews. Taking the initiative to create and sending out the message that you personally want to send out too. Because if you're not creating it, no one else is. I'm assuming that those are the messages you want our targeted listeners to take away.
NGUYEN: OK, great. So just to finish off, would you like our listeners to follow you on anything? On social media?
JUNG: Yeah! Follow me on everything! (laughs)
NGUYEN: Where can we follow you?
JUNG: My blog. I guess my blog is where my better content is at.
NGUYEN: OK. So I will be putting both of your bios, mini bios, in our show notes. And all the social media info, if you want, in our show notes as well. Please follow them there. I absolutely love this episode. I was just so caught up with your words and your stories. I feel so grateful in your presence right now. Thank you so much for just taking so much out of your day to share what you wanted to share. To share your voices.
Well, I think that's all. Thank you so much.
So for all you listeners out there please follow us on Project Voice. Our social media info is also in our show notes. Follow us on Facebook, Twitter, Instagram [@projectvoicepod]. We also have the website at [www.projectvoicepod.com].
Other than that, please look forward to our next episode. Tune in soon! Bye!
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