This year will mark 24 years of my life since becoming disabled. Through my work, my disability origin story is quite public. At the age of 9, I became disabled as a result of a car accident that also took the life of my dad.
What I am learning is that my story is not only a disability story; it is also a story of what it means to be the daughter of Asian immigrants.
I’m the first-generation daughter of a Taiwanese immigrant and a refugee from the Vietnam War. When my dad was alive, I was scared of him. He had a temper that would come out in physically and verbally violent ways. I remember tossing bits of steamed vegetables in the toilet because I didn’t want to think about what the repercussions might be if I didn’t finish my dinner. A therapist has described the impact of these experiences on me as complex, developmental trauma. I realize that this has everything to do with cultural dynamics and intergenerational trauma that would still exist even if I hadn’t become disabled.
But also, more of us are disabled than you think.
At birth, I was born with a congenital heart defect known as arrhythmia. I had to wear bulky heart monitors throughout my adolescence until I had a surgical procedure done in high school called an ablation that “fixed” it. Looking back, I was born with a disability but because you couldn’t see it, it was hidden away because in Asian culture, disability is seen as a source of shame.
The reason why my dad lost control of the car was because he had a seizure. His seizures were never acknowledged or discussed, nor did he ever claim a disability identity the same way I have. Again, because you couldn’t see it, it was hidden away.
Asian Identity and Mental Health
I only started labeling the car accident as “trauma” in 2015. In 2017, I went to a therapist for the first time ever for an unrelated traumatic incident that happened in 2016. I was diagnosed with post-traumatic stress disorder (PTSD) related to the car accident in 2019. That’s a 22 year treatment gap.
My mental health was never discussed. My parents, along with many Asian parents from my generation, had to overcome many hardships to get to the United States, so the thinking was that I should not have anything to complain about and should be grateful for the sacrifices that they made.
Studies have shown Asian Americans are three times less likely to seek mental health support. This is rooted in a culture that perceives mental health conditions as causing shame to the family.
After my dad died, my mom would tell people that he was away on a trip. So I started telling people that he was away on a trip, too. It was another way to avoid bringing shame to our family, and it felt like a form of collective gaslighting.
Asian Identity and Physical Disability
Having a physical disability added another level of shame to my Asian narrative. Within many parts of Asian culture, disability is a taboo topic and disabled people are seen as outcasts, based in an antiquated trope that disability is some form of punishment, represents a shameful family, and I deserved what happened to me. While my dad and I technically both had non-visible disabilities before the accident, I now had a visible disability that I tried my hardest to hide and not talk about for a long time. I wore long-sleeves all the time, even in the humidity and heat of Washington, DC summers. When well-meaning people asked me about my arm, I would burst out crying. I was experiencing so much pain and these emotional outbursts were my only outlet. After a while, people stopped asking, but the stares continued.
Coming Into My Disability Identity
During my senior year at Georgetown University, I was a resident assistant participating in a diversity training where we asked to cut out slices of a “pie” that represented our social identities based on how important they were to us (e.g., race, gender, religion).
My identities as a woman and being Asian were large slices on my pie, and disability was almost half of it.
This was the first time I had seen disability included as part of a discussion about identity and it made me wonder why I had neglected to acknowledge part of my own identity.
When I glanced over at my neighbor’s pie during this exercise, I saw that being “able-bodied” (the term used in the exercise, though I would update it to “non-disabled”) was the thinnest slice of his pie. It wasn’t even something he thought about. If people aren’t aware of something, then they wouldn’t even think to include it.
This exercise inspired me to start Diversability, a movement to celebrate the diversity of the lived experiences of disability through the power of community. We wanted to reframe disability narratives away from ones that were rooted in shame, victimization, and pity and move to ones that were rooted in pride, identity, and empowerment.
This was also the first time I shared my disability story publicly, and through our work as an ecosystem builder, connector, and talent incubator, I’ve met many other incredible people with disabilities around the world. We were hosting events around the country and building a community around an identity that was often equated with social isolation and social exclusion.
I had never considered myself a disability advocate, but I became one that year.
For a while, my work with Diversability paralleled my own personal journey. I was learning to talk about my story from a place of vulnerability, strength, and power.
Sharing my story allowed me to uncover other parts of it, especially around the dynamics of how my Asian culture played a significant role in how I saw myself as an Asian American woman with a disability. I learned that I felt alienated within my own Asian cultural group because of the stigma attached to my disability.
After the car accident, it was time to grow up. I buried my feelings behind a smile and tried to “get over it” on my own. I now call this internalized toxic positivity. If I wasn’t in school or in my “bedroom prison,” my mom was driving me to doctor appointments, physical therapy, acupuncture, surgery–whatever she could try to do to fix my arm and in her eyes, give me a better life. As a result, all I saw was that I was broken and the only way out was to be fixed.
Looking back, I can’t help but feel a little angry that my cultural background meant that a nine-year-old girl couldn’t have the space to openly heal. I feel angry that I grew up with the harmful narrative that something was wrong with me. I couldn’t just be myself, though I just wanted to be a kid.
Sometimes I reflect on my story and think about how far I’ve come. I think about how 9-year-old Tiffany in the hospital bed after the car accident would feel if she could see who she became.
In 2019, I had started wearing a wrist splint on my injured arm to help with its usability. My friend Jeff offered to ask his artist friend Forest Stearns if he could add some personality to it.
When I first started on my disability advocacy journey, I would often talk about how I felt like my arm–and disability more broadly–was the elephant in the room. Fellow disability advocate Xian Horn would add that we needed to hug that elephant.
When I opened the box, I was a little surprised. Forest had used all the space on my splint as his canvas. My splint now has an illustration of nine-year-old Tiffany hugging that elephant in the room, with the word “proud” written across one of the straps. It felt really loud and big. I had spent my whole life not playing on that level.
This splint felt a little bit like my middle finger to the world.
It was a statement to say that I knew people were looking and I wanted them to look. Channeling the Harry Winston quote, “People will stare. Make it worth their while.” Our disabled bodies are beautiful.
These days, I’ve been thinking about how excited I am to show off my splint—this piece of art—to whoever will listen. I want you to look at my splint. I want you to look at my hand.
These moments I get to share my hand feel so special to me because I am honoring myself and the things I carry in this body. It feels like the best kind of self-love to give my hand its time in the spotlight.
It’s about time.
But the more that I share this story with people, I’m reminded of a bigger picture. Elephants are seen as a symbol of power, strength, loyalty, and unity. They are the largest land animals on Earth and one of the most unique-looking as well. They are big, gentle, and born to stand out.
All of this seems so meaningfully symbolic to me of where I am in my life. Even though my mom still sees my work as “monkey business,” I’m proud. My journey makes me proud. My disability makes me proud. Who I have become makes me proud.