What It’s Really Like Hiding Your Disability Because of Culture Expectations

0:00 Death is very stigmatized in the sense that if someone in your immediate family passes away the subtext is that you're bad luck. Like somewhere in your ancestral lineage, there was some bad luck for someone in your immediate family to die. And so even in the 10 plus years after I became disabled, we as a collective family told everyone my dad was away on a trip. So that's why when you're like, oh, do you remember when someone Told you that your dad passed away? I don't know if I remember that. Because I wonder if I like self gaslit myself to then go out with a different narrative. And what was so fascinating was that, you know, people, people knew that I was in a car accident for a long period of time. I'd be like, oh, I was a taxi cab driver.

0:46 And then it was like all these lies I was trying to keep track of. And then there was a certain point and probably when I started to find my voice as an advocate, that I was like, this story matters in the full truth, that I understand it and that's how I'm gonna share it. Hello and welcome to this week's episode of what it's really like with me, your host, Molly Burke, where we have interesting conversations with people who have had unique life experiences that we can all learn from. So today we have Miss Tiffany Yu. Now for those who are unfamiliar with you and your incredible work, who is Tiffany? Ooh, great question to start on. Hi everyone, I'm Tiffany. I'm the author of this book, The Anti-Ableist Manifesto

1:33 that is on display right in between us. It has an orange book cover. And before that I have been a disability advocate for probably the last 15 plus years. I became disabled almost 30 years ago. I was in a car accident as a kid. You, That was like the, The highlights version. I don't, there's a lot more. Oh, well, well don't worry. There's a lot more and we're gonna get into it. These conversations we get into every nook and cranny of you. So don't be worried. I wanna go all the way back to where things began. Tell me about young Tiffany. Tell me about your childhood. So I was born and raised in the DC area. I'm the youngest of four. My dad is an immigrant from Taiwan. My mom is a refugee from the Vietnam War. And I dunno, I, I don't really have a lot

2:20 of memories from childhood other than my mom was a diplomat at the time. So we were moving around every two years or so. We were in Barbados, don't remember anything then other than photos. We were in Taiwan for a few years and I wonder if there's a certain point where she was like, it's too much with four young kids to be moving around this much. So we settled in Maryland suburbia and then at the age of nine on a car ride home, after dropping my mom off at the airport, my dad lost control of the car. And I permanently paralyzed one of my arms broke a couple of bones in one my legs. So I was a temporary wheelchair user for about four months. Much later would be diagnosed with PTSD or post-traumatic stress disorder. But I think to me that was kind of like the defining moment of my childhood where it stopped being a childhood

3:05 And Kind of shifted into something else. In my book, I talk about the phase of my life where I was going blind and how while I might still have been a child, I was no longer a kid. Mm. Like I, I lost that innocence that children are supposed to have. And I had to start facing all of these like really heavy, big scary things that most young people don't have to deal with. And so I completely relate to what you're saying about that being like this big defining moment of your childhood and when you feel like that that young child life kind of ended for you. Yeah. And actually I talk about it in terms of grief and I think we should talk about childhood trauma in, in the context of grief. It's this loss of childhood and innocence. And as we expand this definition of grief, I kind

3:52 of look at, you know, grief in terms, for me, I call it compounded grief. It's grief in terms of loss of my dad. How many of us understand grief, it's disability grief or, you know, Jayne Mattingly calls it body grief. It's changes that happen in your body, either as you age or due to an accident or disability. And then it's the grief of the loss of childhood innocence. Or how many of us understand childhood trauma or adverse childhood experiences. I often talk about feeling like I was grieving the loss of myself when I went blind and grieving the loss of the life that I was supposed to have. Like this idea of the life that I was going to live as sighted Molly and trying

4:37 to at the same time figure out how do I keep living? It's like how do I simultaneously grieve this huge loss of life and figure out a new life? And when you have to do that at any age, it's unimaginably difficult. But for us, we were both so young at times when you're not necessarily equipped with all the life experience and community to, to handle those things. And at the same time that you acquired your disability, you also lost your father tragically in that same accident. Can you tell me what you remember from that day? Ooh. I mean, I remember almost everything. Well, not almost everything. I mean, I remember,

5:25 I remember the last thing I saw was some shrubbery on the side of the road. And then when I regained consciousness, I was in a helicopter and I, and I didn't, I didn't know what was going on. I think nine, you're like old enough to know what's going on, but too young to know what's going on. And so there was this person that was hovering over over me and I just remember them like forcing my eyelids open. And I imagine it was probably really late at night 'cause I was so tired. And this person, at least in my mind, I was like, wow, this is so annoying. Why does this guy keep trying to keep awake? Because I wonder if whoever this person was, I think this medical professional was like, okay, if she closes her eyes, is she gonna lose consciousness? Is that gonna be the last time? And I mean, I do think about,

6:13 I think about my why a lot and I think about part of my why is this 9-year-old Tiffany, but another part of my why is my late dad. Because both of us were in this car. Some of us made it out. Two of my other siblings were also in the car with us too. And, and I don't know, it, it just makes me think, you know, there must be a reason why I'm still here. But I will say outside of that helicopter moment, with the forcing of the eyelids open, then the next thing I remember was just being in the hospital for three weeks and was so sterile and dry. It was right around Thanksgiving weekend, so it was like cold outside and then like really dry and and sterile inside and, and my nose bled every day 'cause it was so dry.

6:58 I, I dunno, I, I, yeah. And, and I think about how do you, in a lot of ways I like can't fathom what she was thinking in those couple of weeks. And I really don't know. Like I can't, that part, I don't remember. I can relate to that as I, as I've gotten older, feeling like the amount of compassion I have for my younger self is so much greater now than I had when I was going through it. Mm. I look at 14-year-old me and I'm literally like, I dunno how she survived. Like I do not know how she did it

7:45 and I dunno how I could ever do it again. But I'm like, so I have so much love for her and I'm so proud of her and I also hold a lot of like sadness for her. Yeah. Like, I am sad for my younger self that I had to go through so much that I, that I shouldn't have had to. Yeah. And you did as well. Do you remember in those few weeks at what point you learned that your father passed away? Whew. You're, you're asking the d questions. I, I don't remember. I wonder, you know, I've only seen my mom cry twice. One time was when I saw her at the hospital and she saw me.

8:31 And again, I think, I don't, I didn't understand the extent of my own injuries, but I wonder if when I saw her tears, then I knew maybe it was more serious than I thought. And then the second time I saw her cry was at my dad's funeral. But again, nine years old, you're old enough to know what's going on and too young to know what's going on too. On I, not only do I not remember, I don't know if anyone told me either. Mm. And I also think about the ways that I, I don't know if I had that much agency over what was going on.

9:18 And I've been talking in therapy recently around all these blood draws that had to be done every single time I cried except for one time. And, and I didn't understand why they kept coming in and drawing my blood or, or doing all these things. You know? And again, I have, similar to you, I have compassion for this younger version of myself that, you know, the decisions that were being made weren't entirely mine because I didn't know what was going on. But then at what point do you start to take agency over your own health and what is going on? Right? And, and in certain Asian cultures, at least in, in the way that I grew up, death is very stigmatized in the sense that if someone in your immediate family passes away

10:05 the subtext is that you're bad luck. Like somewhere in your ancestral lineage, there was some bad luck for someone in your immediate family to die. And so even in the 10 plus years after I became disabled, we as a collective family told everyone my dad was away on a trip. So that's why when you're like, oh, do you remember when someone told you that your dad passed away? I don't know if I remember that. Because I wonder if I like self gaslit myself to then go out with a different narrative. And what was so fascinating was that, you know, people, people knew that I was in a car accident for a long period of time. I'd be like, oh, I was a taxi cab driver. And then it was like all these lies I was trying to keep track of. And then there was a certain point,

10:50 and probably when I started to find my voice as an advocate, that I was like, this story matters in the full truth that I understand it and that's how I'm gonna share it. That is so fascinating and this is why it's so important to me to have these conversations with people with diverse backgrounds and different lived experiences. Because even just already in the short few months that we've been doing this podcast, I've had many people who acquired disabilities in traumatic ways and had loss in their life. And none of them bring that specific perspective of the cultural impact of your Asian heritage and the way in which it compounded grief into also being a part of shame. Mm. And I can only imagine like that is so much to carry

11:35 simultaneously and as you said, kind of like hiding these important parts of your identity to protect other parts of your identity. I, I don't know about you, but I think for me, a lot of my PTSD and my trauma has also shown up in ways that like, I do have patches of memory missing and like just moments that are like dreamlike or that feel like a story that somebody else's that I'm almost so detached from, even though it was my lived experience. I don't know if that feeling resonates for you, but as I'm hearing you kind of talk about your experience in those kind of few weeks that followed the accident, that's what's coming up for me. Yeah. I mean, I can relate. I, I will watch, I will watch videos

12:23 of myself recounting the car accident. And I, and I get really sad, I get sad for this 9-year-old and I can't believe that she's me. And I think I've been trying to figure out what the dotted line is between this 9-year-old who went through what now as a 38-year-old, I would view as this like unimaginable amount of grief, grief and loss to who I am now. Like of course, I think not only am I proud of her because I can't even remember how she dealt with everything that was going on, but I think she'd be so proud of who she's become. But I think she wouldn't even be able to recognize who that person is. And, and I also relate with, with the selective memory and, and,

13:10 and yeah, having these patches where, where I do feel like now as an adult, I am going back and starting to put some of the puzzle pieces together, even even around the influence and the impact of my Asian cultural identity on how I understood disability going through that time. Because for 12 years after the car accident, I actually didn't tell anyone about it publicly only on a need to note basis. And mostly it was my mom writing a note that I would hand to a gym teacher and I wouldn't even use any words. The gym teacher would read the note or I'd walk up, no words, hand the note, you know, someone else writing my story for me. The gym teacher would read the note, have a, a sympathetic look on their face, and then I would walk away. Mm. And so I, I do think about kind

13:56 of college being this playground for growth of where I started to wanna take ownership over parts of my own story. But up until that point, really, I think it was leaving it to other people's assumptions. So a lot of people assumed that my paralyzed arm was from birth. They didn't know that my dad had passed away in the accident. Were your siblings okay. In the accident? That's always a, that's always like the next, one of the next questions I get. They, they didn't sustain physical injuries. But I think all of us are healing emotionally in our own way And in a lot of ways, you know what's interesting is I didn't call the car accident trauma until almost 20 years after it had happened

14:45 because that's not how it was framed in my culture. In in, in the, you know, Asian culture that I was, that I'd grown up with. It was just, here's this thing that happened, okay, we're not gonna talk about it ever again. And then we went on with our lives. Right. So all of that to say, I I still think there is a some room for some collective healing among my family. I don't think we've ever talked about the car accident as a, as a, as a, as a family since then. Mm. I think family is messy, healing is messy. And one thing I've learned as I've gotten older, I used to feel like my family has so much going on. Like we're so, we have so much stuff

15:32 and like I wanna be a part of a normal family. And the older I've gotten, the more I've realized there's no normal family. Mm. Every family has their stuff. Yeah. Every family is just doing their best. And I think the realization that it's my parents' first time doing this, like they also are living life for the first time and are trying to figure it out Yeah. As they go. And that's a part of growing up is realizing that as kids we look to our parents like they're all knowing and we follow in their footsteps because that's what we are told to do. And as we get older, it's this diversion from that and realizing like, wait, I can be my own person and realize that they're trying to navigate this and figure it out for themselves, but I can do that for myself too

16:17 and kind of take my own path and my own autonomy. And I'm glad that you've been able to find that for yourself as a part of your healing journey, even if you haven't had the support of family, which I think is something we all want and crave in life, but isn't necessarily always gonna happen in every situation. And I think as I've gotten older too, I mean I I also have so much compassion and respect for my mom too. In some ways. I don't wanna be her because to have three out of your four kids in an accident, to lose your husband to now have to raise four kids who are nine to 14 at the time on your own, I don't wanna do that. And I think about the ways that, you know, all four of us went to college, this is our privilege.

17:04 Like I didn't graduate with any debt. I have friends who are my age now almost 40, who are still paying off their student loans. Right. And being able to do that, her being able to support me, enabled me to, to make bigger risks. Right. To pursue advocacy full-time or explore what that looked like. And so, so yeah, I think I also have a lot of respect for her and what the responsibility that she had to take on because she actually didn't even have her driver's license until my dad passed away. Like, I also started to notice like, oh, you know, my parents were immigrants here. They also kind of existed under some patriarchal ideals

17:50 where she didn't need her license. We grew up in suburbia, so she's like taking the bus or my dad's driving her. And then, you know, when he passed away, I think she said, here's what I need to do to take care of my family. And, and she did it. I really relate to what you were saying about your advocacy also being a part of your own healing and mirroring your healing journey. I think that's absolutely what it was for me as well. I feel like when I started sharing my story, it felt like taking back my power. Mm. It felt like no longer just like remaining a victim to society's ignorance, but I was like actively empowering myself by getting out there and trying to be a part of the change. And looking back over the, you know, 20 ish years I've done that.

18:36 I think it's interesting even just in the 12 that I've been on the internet to think about the fact that some of the things that 20 23, 20 4-year-old Molly was saying, 3-year-old Molly doesn't necessarily align with anymore or agree with. But I had to go through that part of my healing to get to this version of me and healing. It's never linear. Like it's, it's, it's a lifelong journey, right? Like grief gets easier to carry, but it never goes away. And so before you can even start the healing and empowering journey, the the loss exists for you. Do you remember learning about your injury?

19:21 I, so I broke my femur, which is kind of like the big bone in your thigh and my tibia, which is the bone that's right under your knee also in the car accident. So I had a cast that covered almost the entirety of my left leg. And I remember putting this like neon, this neon rainbow, you could like pick what color you wanted your cast to be. So I think in the immediacy of the car accident, that was, that was the injury that needed to be addressed first. I dunno if someone came to me and they said, your arms paralyzed, but I, I just remember being in this like blue sling that I had to wear all the time. And then while I was in the hospital I would do all these different like arts activities. I dunno if you ever remember those things

20:07 where you'd like put these little plastic things on these on another plastic thing and then you'd iron it and it would make a design. Does, it does not sound familiar, but I'm the somebody. But I think what they were trying to do was they were trying to help me develop dexterity in my left hand, which then, you know, and my right hand was my previously dominant arm. I don't know. I don't know if anyone Yeah. That I can't remember. I can't remember if someone told me like, Hey, you paralyzed your arm in the accident. You know, you might not be able to use it in the same way. I almost wonder if, because the next thing I remember is trying to relearn how to write with my left hand. Mm. And I, and I also,

20:55 and this is per perhaps the selective memory too. I don't, I don't remember much about what I was being told, although I do have one fun memory I'll share. So I was in the car accident, I, sorry, I was in the hospital in the, in the period of time between Thanksgiving and Christmas. So Hillary Clinton was first lady at the time and I was in staying at, at the hospital, the children's hospital in dc. And so came by and they said, Hey Tiffany, do you wanna be in the Christmas commercial? 'cause they have the kids in the hospital in the commercial. And I hadn't brushed my hair in, I don't know, at that point in time, like two weeks. So I had like a big knot in my hair and I said, no, I don't want to. And then I remember first Lady Clinton, you know, at the time came and met with all the kids and someone, I was in a wheelchair at the time.

21:41 They said, oh, do you wanna meet the first lady? And I said, no. And it's so funny 'cause I think about the version of me that I was like, of course I wanna be in a commercial. Of course I wanna meet the first lady. But, but yeah, I have these just like spotted memories of like doing arts and crafts and then my nose bleeding a lot while I was in there. The, the the color and how not fashionable the hospital gown was over that period of time. But, but those like, and I wonder if, you know, you asking those questions around like, did anyone tell you about your dad? Or did anyone tell you about your injury? I wonder if those were funneled through my mom. And then my mom could decide, because I recently went back to her and I said, Hey, did I ever get an IEP like an individual's an individualized education plan

22:27 because I had to relearn how to write with my non-dominant hand. And she goes, what's that? And I go, oh, it's kind of something that you get when you have a disability, so maybe you can get more time on tests or something you, you know, if acquired disability. She's like, no, you don't have that. And I remember going out and kind of sharing that story and someone came to me and they said, it is actually required by law for the state to offer that to the family. And yet what I'm learning more even now in this work almost 30 years later, is that a lot of Asian families are deciding not to take up those accommodations. So long-winded way to just say, did anyone tell me? I don't remember. And I wonder if, if it was a decision, a decision made through the adults at the time of what information they were to give me or not. I, I think it often is, at least when I speak

23:14 with my ophthalmologist, I go to a child's hospital. I've been there since I was six months old and I haven't transferred out because I'm, my doctor is so rare that it's the only place I can go. And I talk to her a lot in my adult years because she's constantly diagnosing children with conditions like mine that are progressive and will cause blindness eventually. And with these kinds of diagnoses, the earlier the intervention you get with accommodations, the easier life is. In my case, that meant I immediately started learning braille. Even though I could read print, I immediately started taking orientation mobility lessons with a white cane even though I didn't need to use one yet. So we were immediately kind of integrating and prepping all of these things that I would need eventually.

24:00 And I did immediately get an IEP. I had an educational assistant, an EA sit next to me. I had a vision itinerant, like we got all the things put in place so that as my vision loss kind of progressed, I was always gonna have the supports that I needed ongoing. And that was really crucial to me getting an education. And even though school was still incredibly difficult for me because, you know, the school system is built for visual learners and shockingly, I'm not a visual learner. I at least did have the supports I needed and it was never hidden from me. My parents told me the name of the disease, they helped me learn how to pronounce it. They taught me what to tell other people. When people would ask me about my eyes shaking or you know, the different tools that I used,

24:46 they really empowered me to have autonomy over my situation and to, to really say like, yes, this does help, or no, this doesn't, like I, they tried so many different kinds of adaptive equipment and glasses for me. And it didn't matter when, like a professional would say, like, this will help her if I said I don't like it or it doesn't help me. My parents believed me. And they would tell me like, then you don't have to use it or you don't have to wear those. And so I talk a lot with my ophthalmologist as an adult and she's like, how can I impress upon these parents the importance of telling their children, of giving them that autonomy of letting them know and getting them the helps they need like as early as possible. Because she, she mentioned that she does have a lot

25:31 of families of different cultural backgrounds because Toronto, where I'm from, is such a huge melting pot. It's the most multicultural city in North America. And she has, she has so many different backgrounds that come with very different viewpoints on disability and hold so much more like shame around it that they refuse to tell the child and they tell her not to tell the child. Mm. And that like, if the kid asks anything to like act like what these appointments are normal and like these are whatever kid goes through and how she feels like it's, it is very damaging to not tell these kids and give them that support. Do you feel like in any way you kind of going through the 12 years post accident, hiding your disability was in part because you didn't have the words for it

26:18 or you didn't, you didn't even have the full explanation under understanding of what it was and what you deserved in accommodations so you didn't even know to how to say it or what to ask for? Totally. I mean, and I also love the fact that you and I can have this conversation and ha and grew up with parents who treated our disabilities very differently and you can still find your voice as an advocate. So I, so I just wanted to name that and I yeah, I, I I will share that oftentimes people are like, oh, do you do, do you do some version of, of this disability advocacy work but work with kids? And I said, I don't have the lived experience where I wasn't equipped to become an empowered kid.

27:04 But, and then, and then they're like, oh, can you talk to parents of kids who have your disability? And I'm like, I'm happy to talk to them, but my message is that these disabled kids will grow up to become disabled adults. You're not, first I wanna say our parents are our strongest advocates. I do think that my mom did everything that she, whatever she, what she thought was best And What she thought was best was what I call the alphabet soup of doctor's appointments. I mean, I was talking to surgeons, I was physical therapy, occupational therapy, neurosurgeons, hand hand surgeons, acupuncture. But I didn't know what was going on. It was just like my mom's driving me to an appointment. Right. And so I love that you kind of shared your story where you were empowered. And I hope that, you know, as we, as we are now older

27:52 and many, you know, I now have friends who have kids who are nine or who have kids who have disabilities and they're learning, you know, what does it mean to be the parent of a disabled kid? And because they're in community with us, I think they're equipping their kids with how your, what your parents did for you. I also, and I also think this is part of why I feel outspoken as someone who is the daughter of Asian immigrants, because I wanna be able for more Asian disabled kids to see me or to see you and know that that there is possibility, right? Is is that internalizing shame isn't the only, there will be a journey to unlearn that shame. But, but yeah, I do think

28:41 that in my generation of Asian Americans, it is starting to change around how we're viewing viewing disability. I don't, I don't harbor any negative feelings towards what my parents grew up with and the things that they believed because that's, that's what they believed for their survival. Yeah. Right. And Now, Now we have access to community and social media and, and much quicker ways to find each other that we didn't have before. So I forgot what your original question was, but something about being a kid and, and yeah. And not being equipped with the language. Yeah. I wasn't equipped with the language and I don't, I think I feel grateful that I am where I am now and you know, I talk a lot about the shame

29:30 to pride transformation within a disability identity. And there are a lot of people in our community who still feel a lot of shame and maybe don't ever wanna feel around their disabilities and that's okay. Right. And that's part of the diversity of our community as well. But I also feel grateful that you and I can come from very different upbringings and different disability origin stories. You know, mine happened kind of suddenly and yours was, you know, was over time and the ways that our parents kind of navigated that to then be able to sit across from each other and have this conversation. Absolutely. Do you remember the first time you met somebody else with a brachial plexus injury? Yes. Her name is Nancy and I was a senior at Georgetown and she was a freshman.

30:18 So brachial plexus injuries, there are two types. There's one that happens during childbirth when the doctor kind of pulls the arm out first. And there's another term for that called Erb's palsy. And then there are those of us who we acquire our brachial plexus injuries as a result of a traumatic event of the arm being forcibly pulled. And I, yeah, I was in the beginning stages of creating Diversability and I remember her sharing, but I never heard it called Erb's palsy before. And I think probably maybe she had never heard it called a brachial plexus injury before. And, and this is also, I mean there, you know, you, you go into the same type of disability and there's so many different,

31:04 and like, it's kind of like people say, oh, you're blind, but they're, they're probably like A lot of diverse, so diverse, so diverse. So, so yeah, I remember, I remember meeting her and I forget what we were doing. It was one of these, you know, we don't do them as much anymore, but it was one of these like simulation lunches where you like simulate different types of disabilities by like putting a blindfold on someone and, and doing a shared activity together to hopefully build some empathy around disability. Part of why we don't do those anymore is because, you know, I call it disability grief. I've lived with my, at that particular point in time, I've lived with my disability for like 15 years. I had learned how to adapt, right? But if you put a blindfold done swan right away, they're gonna experience some grief from, from the immediacy

31:51 of being cited to then not being able to see. But, so I remember meeting her and, and she actually became one of the first members of this club that I was this disability club that I was trying to start at Georgetown that would eventually be called Diversability. But I'll actually say that the more formidable event for me was a couple years ago, actually, I wanna say in 2022, I went to a camp for people with brachial plexus injuries and our families and, and doctors who work with us. And I actually had a really emotional moment there because we all had arms that worked different and my injury is the most severe in my hand. And for, for other people who have brachial plexus injuries,

32:36 they don't wear splints or their hand is kind of in a neutral resting position. And, and mine, you know, my knuckles have hyper-extended over time and I do bear a splint to try to try to slow that. And I got emotional because we all had the same thing, but I was still different. Mm. And I'm like, I'm going, I had, I had spent so much time existing in cross disability spaces up until that point. And now to be in a space where I was excited to be around everyone who was just like me and I wasn't just like them. And I remember, and I do share a very brief this very briefly in the book, but I remember talking to one of the guys there and I said, you know, I'm feeling really sad 'cause no one's hands look like mine. And he said, you know, before I met you, I didn't know that our injury could look like

33:23 how it has manifested on your hand. And, and that just showed me, you know, even with the same injury, it's very, very different. I feel that deeply, I, my form of RP is really aggressive and most people with my disease do not lose their vision as young as I did and do not lose their vision as quickly as I did. Hmm. And I do feel like that when I'm in spaces with a lot of people with RP is like, I am the most extreme version. I'm the most the furthest end of this disease. And I also often think when people get newly diagnosed or their child gets diagnosed and they go to the internet and search the disease, I am one of the first things that's going to pop up. And many people do find my content through their recent

34:09 diagnoses. And I, I'm always like, don't let me scare you. Like I'm the extreme. Don't worry, you probably won't be like me. And I, I don't know why I feel the need to, to do that. And I also feel like when, whenever I'm at the ophthalmologist at the children's hospital, like when I'm sitting in that waiting room and I have my guide dog or my cane with me, I feel this like self-consciousness that like I'm scaring all the parents with their kids who haven't been diagnosed yet and are still looking for the cause of their vision issues. And I'm always like, am I scaring everyone? Like am I this? Oh no, I hope she's like, I'm not her. I hope that I don't become that. I dunno if that makes sense. Yeah. But it's

34:56 Likes that's deep. You know, I, I don't, I don't think of that when I think of you. I also don't think of that when I think of me because I think of us as lights. Like look at how bright and colorful and joyful your life is. That is how I, you know, you texted me before we started recording, you're like, whatcha wearing? I'm like, I'm wearing a red jumpsuit. You know, and you're like, I'm gonna, I'm gonna wear red too. So I I wanna be hope, but thank you so much for sharing that. I, yeah, I think probably similar to you, I, I have a, I have probably at least once a week I will get a message from someone who perhaps is newly, has a brachial plexus injury. Or maybe they're a parent, a new parent of a kid

35:42 who now has a brachial plexus injury. And the notes can go either two ways. One is I just got the injury. I feel like my life is hopeless, but thank you so much for making this content because it's showing me the possibility of, of all the different things that I can do. Or I'll get a note from a mom who says, oh, I never thought of using a weightlifting cuff as, you know, to hold onto the handle of a bike to put on your injured arm. I'm gonna do that for my son. 'cause he always wants, he's like always on his bike. But I do fear for his safety. So like, thank you so much. So yeah, I, I mean, and, and I don't wanna diminish or water down that there are hard parts, but I think the fact that we can be possibility for

36:29 so many people who perhaps in the immediacy of their new diagnosis may, may internalize a different narrative than, and, and that's why like I'm so excited of, you know, you being on YouTube for 12 years, but also just the explosion of social media is it's showing us how extraordinarily extraordinary we are. Right. And we're finally getting a chance to exactly like you said, take ownership of our stories. And I, I certainly hope that's how people feel when they look at me. Like I try to show the full spectrum of my lived experience with disability, which is the beauty, the joy, the, the wonderful parts that come with my disability.

37:16 But equally like I am honest about the struggles that still exist and, and the ableism or discrimination I face and the grief or fear that I have and those like heavier feelings that I still live with because I think it's so important to be honest about the full spectrum of that human experience. Because I never wanna give somebody the false idea that you'll get to a place where your disability no longer impacts you. For sure. Yeah. Because it's, it's just not the case. My disability will continue to impact me as long as there's attitudinal barriers in the way society views us. As long as there's access barriers in inaccessible design,

38:03 my disability will impact me no matter how much work I do as an individual, which we're gonna dig into when we get to the Anti-Ableist Manifesto. But for you to have gone to from a place where you hid your disability for so long to writing an anti-ableist book is an incredible arc in your narrative. Yes. You talk about college being this kind of turning point for you. Do you think part of that was leaving your family moving to like this, this space where there was so much diverse experience around you and you just had the freedom to explore your adult self? What, like what was the kind of catalyst for you to start exploring disability identity in yourself? I will share that I didn't identify

38:51 as Asian or Taiwanese, which is where my dad is from until I was 18. So I grew up in a predominantly white neighborhood. I didn't have any mirrors of other Asian families. I could reflect on my culture with my lunch was different. No one else ate dumplings, which is one of my favorite foods. Always gotta give a plug for the dumplings. And so my freshman year during orientation, I met another student named Jackie and she told me that her mom was from Taiwan and I told her that my dad was from Taiwan and I made this offhand remark that we should start a club and Jackie actually ran with it. And together we became the co-founders of Georgetown's first ever Taiwanese American student club. And I share that because here I was an 18-year-old, my dad did not get to see me become proud of where he was from.

39:37 I'm, I hope you know, legacy. But being a part and co-founding this Taiwanese American club, we met so many other Taiwanese American students. But it gave me a sense of pride, identity, culture, community history in another aspect of my identity that I felt shame about. So this is kind of where like cross solidarity movements kind of come in because for me it really started with, okay, I've got black hair and the first thing you see when you see me is that I'm Asian. And yet I was denying that growing up, you know, people would say I'm Asian. I'd be like, no I'm not. I'm American. But we can be, you know, there's a, as we're recording this, it's Asian American Pacific Islander Heritage Month and there's a campaign out right now that's like Asian plus American, you know,

40:22 'cause sometimes it's Asian hyphen American, but like now they're making it a plus because you can hold both of those identities. But I wonder if, for me growing up, and again my parents were immigrants and they came to the US in a time when there was potentially a lot of anti-Asian sentiment. English is not their first language. They do have an accent. I do have some early memories of seeing the ways they were treated or the impatience that people had when they were trying to go about their daily life and maybe it took them a little bit longer or they, you know, and, and again they had an accent when they communicated. And so here I am with me and my three siblings, none of us learning any other language than English. And my mom speaks like four different, you know, Taiwanese, Cantonese, Mandarin, like so many. And I'm just like, whew, I wish I

41:08 knew how to speak all of those. So, so yeah. So it started that freshman year and I will say those first three years of university was very, very actively involved in the Taiwanese American community. And we would go to conferences with all of the other collegiate Taiwanese American clubs. And I was like, really? I first became a Taiwanese American advocate and then my senior year I kind of came back from the summer internship I had done at at Goldman. And while I was there I got introduced to these different business resource groups or affinity groups or employee resource groups that they have. And they had one for Asian employees, for women employees and they had one for disability employees. So I got, you know, I went to their different summer events and fascinatingly enough, my first ever disability community was at this investment

41:54 bank and I kind of came back from it and Jackie was my roommate senior year. And I went to her and I said, you know, kind of what we did for the Taiwanese American Club, I wonder if maybe I should do that for disability. So I didn't really think like, oh I wanna unlearn my own internalized ableism or I'm harboring a lot of shame or around my disability. It was kind of like, I know how to start a club. We started one club, could we start another? And a couple years ago when Diverseability reached 15 years since our founding, I did a lot of reflecting around those early years of just trying to get people to join. And it was 2009, it was really hard. I didn't, I knew two other disabled students on campus at the time. I remember sending both of them an email being like,

42:39 I think I wanna start a disability club. Like, do you wanna join? Like, I don't wanna do it by myself. Perhaps it was email overwhelm, but I never heard, they never replied to the email. But Jackie told me she would join my club and then my Taiwanese little buddy. So if you were an upperclassmen, you were a big buddy and then you're, if you were a freshman or a sophomore, you were a little buddy. My Taiwanese little buddy, his name's, he made Diverseability's logo for our first 11 years. And so I just remember our first event, I was just putting up all these flyers around campus by myself and our first event, I think it was like all of my, all of the people from the Taiwanese American Club just came, but slowly but surely, I think people started to see those flyers put up and started to email this email address. Like it was the beginning of when Gmail had just been created or Google mail. And so we ended up getting [email protected]

43:27 and I didn't put my name on any of the flyers either. And people I started to know who had non apparent disabilities, you know, someone had just newly been diagnosed with a vision, disability, someone else living with a chronic illness. They all started emailing this email address. And together that was the beginning of us starting to put this club together. Why do you think it was so hard to get people to join So much more challenging than it was to get them to join the Asian American Club? I've been thinking a lot about how, and I think you can relate to this, I call it beyond pathology to culture. And for a long time, and maybe still there are many environments that are sitting in what we call like the medical or the medical and tragedy models of disability.

44:13 So the medical model is you get this diagnosis, you go to the doctor to get treated or cured. It's this fixing mentality. The tragedy model is the expectations are set so low just because you have a disability, your life is so sad, we pity you. Now, if those are the dominant narratives at the time, how could you feel pride? And I remember our tagline at the time, and it hasn't changed that much over time, but our tagline was, I wanna start a movement around disability pride. I remember the number of people who came to me who said, what does that even mean? How can a disabled person be proud? And I, in full transparency, I wasn't even sure if I was proud, but I kind of just liked the, like, I guess what I thought about at the time was we all talk about raising disability awareness, but you can still be aware of disability and think that our lives are sad.

44:59 Mm. Disability pride feels, you know, and at the time what's funny is in 2009 people called me radical and I don't know if anyone would call me that now, but at the time, just using terminology like I wanna be proud of, my disability identity was radical at the time. And so I think that that was what made it harder was, I know I was still earlier on in my own disability pride journey at that particular point in time, you know, I even think about how we have kept the name Diversability and, and now I'm very adamant that like, please only use Diversability as the name of our organization. Like don't use it as a euphemism. Like there's no shame around disability. But I do wonder that in 2009, if using that language was for me trying to water down what disability meant to me,

45:48 And Perhaps I was still harboring around harboring some shame around disability that I was then like, okay, this organization's gonna be called Diverseability. I'm glad we, you know, I, I do revisit the naming of our organization every couple of years to align with the times. You know, you talk about things 23-year-old Molly said that maybe you don't necessarily agree with we're all on this journey together. Right. But I think from a branding perspective, we kind of just kept it 'cause people recognize who we're, That's really interesting. And I, I, I think your hypothesis is probably correct and for many people this, we've had such a cultural shift and sometimes for those of us in the disability rights movement, it feels like God, we still have so far to go. But we also have to look back and be like, wow, just in 10 years, just in 20 years,

46:36 we have accomplished so much in the way that disabilities perceived, in the way that we perceive it. You mentioned, you know, having friends with 9-year-old kids today and how different the, the idea around disability is compared to when you were nine, I think about 10 years ago, 15 years ago, when I would walk around with a guide dog and kids would ask their parents about it, all I would ever hear was, shh. Now at least 50% of the time I hear that's a guide dog. It's doing this because she's disabled. And like I actually hear them educating and it makes my heart so happy because that's, that's what I want. Yeah. But I, I very much grew up entrenched in medical model and charity model. I was the face of a charity from the time I was five years old

47:23 through my teens, who was funding vision research to cure blindness. And I think similar to probably the reason your mom did the, the alphabet soup of doctors, it's what they thought they had to do to be good parents to a disabled child. Because that was immediately what the world told them. The whole reason we got involved in this charity to begin with is because my mom said to my ophthalmologist, I don't want to see sad tragedy things around my daughter's disability. Can you show me something hopeful, something joyful? Like that is what she wanted. She wanted to see an example of disability joy, not tragedy porn.

48:09 And literally the way the doctor perceived that is put them in touch with this charity who will give them hope for sight, not give them hope for the future of blindness. What was your journey of learning to own the word disability with pride, not with shame, and unpack this kind of medical tragedy charity model and step into fully owning disability as something you genuinely felt pride over, not just something you liked the idea of feeling pride over. Yeah. I I, well I think the first thing I wanna say is, is you know, the social, yes, we push for the social model of disability, which is, you know, fix the inaccessibility like the external environment,

48:55 the external attitudes. And also I think there is a time and a place for these other models as well. The social model doesn't take away someone's pain. Yes. And one of my unlearning, I I used, i I used to be very hard line within, within my own community of people who have brachial plexus injuries that I was like antis surgery. But one of them came to me and said, oh, well, you know, I'm actually gonna get this level of functionality back and it helps slow secondary injuries on your non-injured arm. And it kind of shifted my own mindset that like, here, here I am going so hard line on surgery equals fixing and I'm anti fixing 'cause we're great. But I'm like, if you really do believe that this is going to improve your quality of life,

49:42 because a lot of people who have my injury develop secondary disabilities or secondary injuries on a non-injured arm because the one arm is kind of doing stuff for two arms, our right, our whole lives. I forget what your question was actually. It was kind of around the shift of unpacking and unlearning all of this internal shame and kind of narrative around charity, tragedy, medical model, and really owning disability pride as a feeling and not just an idea. Yes, yes. Sorry, I went off on a tangent and I was like, I No, it's a good tangent. I, and I wanna circle back to it because I, I feel like I, I have stuff to say. Yes. Well, I just wanted to make sure that I named that because I, as someone who

50:27 perhaps am starting to see those secondary injuries come in, I am trying to think about for the functionality that my paralyzed arm does have, let me try to maximize it as much as possible, which is actually why I started rock climbing. Well put a pin in that. I think what helped me was finding community and it was meeting other people. I still remember the first time I met Sean Horne, she is an advocate in, in the New York City area. And we had very different upbringings. Like I remember she would go and she would say, my cerebral palsy is the best thing that's ever happened to me. And she would talk about how supportive her parents were of her journey. And it was so different from mine. And I remember sometime during that lunch I was like, I find it really hard. And I was still earlier in my disability pride journey. I was like, she is so proud.

51:16 I now see a pathway of who I can become. Are we too far apart for her to be relatable to me? But, but I, I found my way, right? And I think in meeting other people, I like to use the phrase possibility model that was, that was coined by Laverne Cox. Because you don't have to follow directly in someone's role. You don't have to like be Molly and start the YouTube and write this book, but perhaps there are parts of her journey that show you the possibility of who you can become. And what I feel really excited about in the current moment that we're in is literally in every single industry, I can probably name at least one outspoken, disabled person in the industry, whether it's like tech or law or entertainment, you know, or content creations or writing. So, so yeah, I, I think, I think so much

52:04 of my unlearning journey has been being entrenched in community and it's not just like community, it's community of people like you, like Lachi, like Keely, like Brandon, many of whom you've had on your podcast who are movers and shakers who are trying to make things better. And I think like, yeah, I just, I just feel so proud to be part of, of this generation, of this movement. I wanna circle back to, to the way you started around the medical model and social model. And one doesn't discount the other. And I completely agree and I think often when we do talk about social versus medical, it is like the pinning them against each other and that I think people perceive that as like medical should be eradicated.

52:50 And that's not at all when I talk about it, what I'm trying to say. I'm not saying let's stop medical advancements. I'm saying let's also focus on societal advancements at the same time because we've been living in a world that ran on charity and medical model exclusively for far too long and that actively harmed those of us who cannot be fixed, cured and healed. Yes. Right. And so the negative impacts that had on those of us, like you and I, who were not able to seek medical intervention and don't have the choice, we must live disabled. For me, I think like you as a part of my healing, because I was so for so long, entrenched in that mindset

53:38 that I had to be healed and cured and it was the only way my life would be good. I had to go so extreme, the other direction To counter correct For my own healing. I just had to be like, I don't want it, I don't wanna hear anything about it. I don't care. Shut the door. I'm not going there. And this is the only way I am gonna live my life under this mindset of social model and continuing to heal and continuing to grow in my own journey is realizing that most of life is gray, not black and white, and that there is a, a world where all of these things exist.

54:24 But my work is advocating for the need of social model and that it deserves to exist Where it hasn't for far too long. It's not to say, let's stop medical, it's to say, let's name the ways medical is harming. So some of maybe the verbiage the medical model uses, some of the framing the charity model uses that is actively anti-social model and is contributing to the, the barriers we're we're facing. Right. Con contributing to the mindset people have around disability that is actively harming us socially. Yes. Right. So for me, it's kind of untangling a lot of webs and it takes a really long time to get to this place.

55:12 It took, at least it did for me. It took me a really long time to unpack medical, to understand social, and then to understand that there is a world where they all live harmoniously. And what does that even look like? And I don't think we're close to being there yet. Mm. But I think these conversations are important to talk about. How do those both live in the same world without counteracting or harming each other? Yes. And I do think about this idea of like this version of me who doesn't wanna be cured because there are moments where I'm like, oh God, it would just be easier to see. Or, oh God, it would be nice to at the very least,

56:00 halt my vision loss where it's and maintain the light and shadow perception I have, which I will lose eventually if I did not seek any kind of medical intervention. And I think for some reason, for me, that feels more comfy. I feel okay with the idea of seeking medical intervention that stabilizes my vision more so than intervention that gives me vision back. And I think there's a lot of reasons for that. But for me, like that's the line that I've come to in my life. Mm. Whereas there was a time when I was like you like no nothing. It's all or nothing. Which was just for my own healing.

56:45 But now I am like, okay, there is this, like I still have a line, but the line is softer and the line is actually more loving and caring to myself and is actually more forgiving to myself and says, you don't have to suffer and be a martyr to stand behind what you believe. Yeah. I love the idea. I've been thinking a lot about like the words like ease and gentleness and, and it's all tied in with this conversation around compassion and how do we, how do we be, be gentle with ourselves and each other that we, and also our parents too, right Back, tying it all in a bow of like, we're all making decisions with the information that we have at this time

57:33 and we can change our mind later. And how do we give each other the grace and the space to be able to either learn out loud or be on that learning journey and also be okay that we might make, make mistakes on that journey too. When I wrote my book, I literally wrote in the, in the back of the book heads up, like, if you're reading this in 10 years, my opinions might have changed. Ooh. I should have included that in my book Because I really, I feel like I've just seen it from being online for 12 years is sometimes people hold me or or other people, other creators to our word from five, 10 years ago. It's like, well, no, just like you've changed and evolved, so have we, but just because you saw that thing today doesn't mean we said it today.

58:19 Mm. And I do think for the most part, overwhelmingly, my followers have given me the grace to learn to not always be right. Like I don't, I've never claimed to be right. I've claimed to be a person sharing an opinion, and I have a reason that I've come to this opinion, but I'm always interested in growing and learning and changing that opinion. And if you give me information that changes that opinion, that's great. I'll continue to evolve. That's what we're here to do as people. So I feel like I've overwhelmingly at this point in my career, been been fortunate that I have had that kind of following. And I truly feel that I've learned as much from them as I hope they've learned from me. And that's been the beauty of building community is that it is like this shared growth and expansion of self, which has been such a gift for you.

59:07 You didn't just automatically become an advocate out of college. You went the more traditional corporate workforce. I'm curious what it was like entering the American and and living with a disability. Yeah. You know, I'm so glad that I found disability, at least started to find disability community when I did. Because I remember, so my first job outta college, I was an investment banking at Goldman Sachs. And I remember being at our orientation and it was like, it was like 10 weeks or something. It was a long period of time. And I type with one hand, and I remember some of my colleagues would come and they're like, oh, you type with one hand. And at that point in time, I think I had become evolved enough that I could share like,

59:52 oh yeah, my arms paralyzed, gone into a car accident without crying, and I was still pretty new. I mean, I think the first time I ever shared the story of the car accident publicly in 2009 was definitely, was definitely waterworks. And so now I'm like, okay, I'm in a corporate environment. I've learned how to, how to retell the story without reliving it, or at least just share enough context. The other thing I'll share is that I still remember my high school graduation. You had to go down this line and shake all of these administrators hands. And I remember going down and putting out my right hand. Now again, my disability is most affected in my hands, so I'm just putting out a limb and going down the line, trying to shake everyone's hands the same way as everyone else. And I remember looking at a lot of their,

1:00:39 or I'll never forget the emotional reaction on their faces. They were like, I think they were just confused. And that didn't make me feel good. And so I remember being an ambitious student now at university, you know, I double majored in finance and accounting and I knew I wanted to find some way to go work in financial services. So I said, I don't feel like I'm a confident Right, right-handed handshaker. So I'm gonna learn how to be a very confident left-handed handshaker. So I learned how to shake people's hands very confidently with my left hand. And that kind of, to me felt like the beginning of the turning point of like starting to own that I was gonna have to do things differently. Because when I tried to do things like everyone else, it, it didn't make me feel good. I felt disempowered.

1:01:25 Yeah. So fast forward, you know, I I, I guess I'll, I'll share two stories. So one is every new hire had an ergonomic assessment done by our workstation. And so a lot of my colleagues, we got a second monitor, we got a keyboard wrist pad, I got a left-handed mouse. I also got, I'm, I'm petite like you, I'm five feet tall. I got a foot stool so my feet wouldn't hang off the chair. 'cause apparently if your feet hang off the chair for a long period of time, you know, It really hurts the knees. I'm telling you on long flights, when my feet are dangling, the amount of pain I have in my knees, it's not easy. But then the ergonomic specialist said, Hey, would you benefit from having a headset so that you can use speech to text technology, you know,

1:02:12 if you're writing emails or other things like that. And I, I had never heard of that before, fascinatingly enough. And I had been in Disabled Body for 10 years, and I'll say I was still newer on my speech to text journey. So I was like, oh no, you know, I don't need that. And, and now I feel like I use speech to text all the time, but I just loved kind of the menu of options that were available for everyone so that we could do our best work. And the other thing that kind of happened was, I think it was less, I, I, I felt, I felt less in my disabled identity in that environment and more so as a woman in a male dominated industry. Mm. And I remember a piece of feedback I got, I think he was either the, the CEO or the president of like the US branch of the bank.

1:02:59 And he said, if you're ever gonna make it in this business, like, he's like, you're too nice to ever make it in this business. And I, you know, for the couple of years that I was at Goldman, I was in the, in the top bucket of your like performance buckets or whatever. And I was like, I do feel like I had to change a, I don't feel like I changed who I was fundamentally, but I was also like, can I still, can I not lose my, in myself entirely and still be this nice person or whoever I thought myself image to be and still make it? And I was proud that my work product could speak for itself. And I guess I translate that over to the disability side too, where, you know, I,

1:03:45 I don't know if anyone, and per, and this is a microaggression too, but like, no one thought of me as a person with a disability. And I remember during October, which is National Disability Employment Awareness month, I'd always guess get asked to like, speak on a recruitment panel. And, and I would tell my whole team like, Hey, I'm gonna go speak on this disability panel. And they're like, oh my gosh, Tiffany, I didn't even think of you as a person with a disability. Right. Of course. At that particular point in time, as, as we talk about evolving, I didn't think to kind of interrupt that and be like, oh, well what do you think a person with a disability, what stereotypes are you thinking that I, that I don't fit? You know? And, and yeah. And, and so I think I started and I was very actively involved in their disability employee resource group. I rejoined, you know, from being an intern to then full time. And I did so many informational interviews

1:04:31 with disabled candidates who literally never thought that a career in financial services could be for them. And I didn't get to include this in the book

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