When Jennifer Lee was diagnosed with Crohn’s disease — a form of Inflammatory Bowel Disease (IBD) that can cause chronic abdominal pain and inflammation — she found the resources available to her weren’t tailored to her experience as a young Asian American woman.
“More often than not, I was the only person of color in many support groups that I had joined for patients with IBD,” 19-year-old Jennifer shares. “I felt like I had no one who looked like me in the disability space, no one who understood what I was going through.”
The difference in Jennifer’s experience of disability as a Korean American woman became especially pronounced in 2020 amid an alarming surge in anti-Asian racism and hate crimes against Asian Americans. “As a chronically ill patient, I knew exactly how it felt for an entire community to be marginalized, vulnerable, and at-risk, making it all the more urgent for me and my fellow student leaders to speak up against these acts of hate,” she explains.
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A year after her diagnosis and after months of hospitalizations, surgeries, and treatments, Jennifer decided to address the lack of support for Asian Americans with disabilities. In July 2021, she founded the Asian Americans with Disabilities Initiative (AADI), a youth-led organization that uplifts the voices of Asian Americans with disabilities. “I originally started the Asian Americans with Disabilities Initiative out of a sense of deep loneliness in my disability,” she explains. The organization aims to provide the next generation of disabled Asian American leaders with accessible resources so that they can combat anti-Asian racism and ableism in their own communities.
In its first six months in operation, AADI has only grown larger — and more ambitious. Jennifer now leads a team of 19 people, many of whom have never met in person due to the COVID-19 pandemic. The organization recently hosted a speaker panel featuring Asian American disability rights activists Lydia X. Z. Brown, Miso Kwak, and Mia Ives-Rublee in conversation about disability visibility and advocacy in Asian American communities. And Jennifer and the team are currently working with Asian American disability activists to publish a free, comprehensive resource guide to combat ableism within the Asian American community.
Connecting with other Asian American women with disabilities while recruiting the AADI team helped Jennifer feel less alone. “Being chronically ill at the time meant that I needed a community to get through one of the darkest moments of my life,” Jennifer explains. “During a time when I couldn’t find disabled Asian Americans to connect with, I had to take matters into my own hands.”
Read on to learn how Jennifer, Megan, and their AADI teammate Xuan Truong are fighting for visibility for Asian Americans with disabilities. These interviews have been condensed. You can find the full version here.
Jennifer Lee, Founder
How does your experience of having a disability intersect with your identity as an Asian American woman?
As someone with feet in two (arguably, three) marginalized communities, advocating for myself can be exhausting. Already, I’m often one of very few Asian American women in my seminars and classes, particularly those in politics that are overwhelmingly White and male. I can already feel the assumptions cast when I raise my hand first during discussions or I express leadership in club settings: I’m too aggressive, I’m too opinionated, I’m too calculating. To be disabled on top of this (and to be vocal about it online) means that I’ve had another label cast onto me. When I was first diagnosed with Crohn’s, I remember some who reacted with a twinge of pity. “That’s too bad,” they remarked. “It’s a shame that this happened — you had so much potential.” I often find that people underestimate people with disabilities, even more so when they doubly identify as a person of color.
How did your diagnosis of Crohn’s disease in 2020 lead you to form AADI?
To be completely honest, I originally started AADI out of a sense of deep loneliness in my disability — more often than not, I was the only person of color in many support groups that I had joined for patients with Inflammatory Bowel Disease (IBD). It’s hard to explain, but there’s something about being chronically ill that is immensely clarifying. Suddenly, all the school assignments don’t seem so important anymore. The finance internship that I so anxiously wanted my freshman year? Absolutely irrelevant. When you’re confined to a hospital bed, and you lose the ability to digest food, nothing else matters except getting by to the next minute.
Community became of utmost importance for me while navigating my diagnosis. I felt like I had no one who looked like me in the disability space, no one who understood what I was going through. Being chronically ill at the time meant that I needed a community to get through one of the darkest moments of my life; during a time when I couldn’t find disabled Asian Americans to connect with, I had to take matters into my own hands.
Why was it important to you that AADI be youth-led and center young people’s voices?
Having a youth-led advocacy movement is critical in creating a moment of change. I truly do believe that young people are the future; while AADI is committed to working across generations to fight for all disabled Asian Americans, we are especially attuned to the students and young folks who will grow up to become the policymakers and activists of the future.
I hope that the next generation of disabled Asian Americans feels empowered to thrive in a world that doesn’t always strive to include them. AADI is only the beginning of a much larger movement for intersectionality amongst Asian Americans and disabled folks alike. My dream is for AADI to provide the much-needed infrastructure in place to allow young disabled Asian Americans to grow up in a world where they see themselves represented.
Megan Liang, Director of External Relations
How does your experience of having a disability intersect with your identity as an Asian American woman?
Something that we don’t talk about often enough is the Model Minority Myth and the effect that it has on the intersection between disability and Asian American identity. The Model Minority Myth is a harmful construct that suggests that AAPI (Asian American Pacific Islander) folx are submissive, polite, respectable, and hardworking. This myth can prevent disabled Asian Americans from asking for help or accessing the services and accommodations they need.
For the past 20 years, I have faced these difficulties as an Asian American amputee. I feel fortunate to wear a prosthetic leg that allows me to be extremely mobile, but I sometimes need assistance going down hills, going up or down stairs, or walking on uneven paths. Before I got a prosthetic leg with a computerized knee in 2019, I fell at least once or twice a month. Because of this, I often felt weak and ashamed of how I couldn’t keep up with my peers. As an Asian American woman with a visible disability, I have always felt as if all parts of my identity were for the world to see and judge. I didn’t excel in school as others thought I would, and my body was already not like my peers — all parts of my identity didn’t conform to the image society had put on me. I felt like I couldn’t ask for help in fear that I would be seen as even smaller and weaker.
What motivated you to join AADI?
I love telling the story of how I joined AADI. I unexpectedly found AADI through an Instagram post for a partnership announcement. I remember looking at my screen, thinking, “This exists?”
Growing up, I barely saw Asian Americans celebrated in the news, and I definitely didn’t see any disabled folx getting recognition in the media outside of serving as inspirations for able-bodied people. I only remember growing up watching Asian actors and actresses in action movies, in awe of their ability and skills. But while it was so exciting to see able-bodied Asian actors in movies, I still couldn’t see myself in their characters as a physically disabled Asian American. Growing up with little representation of the specific niche that fit my identities, I was so surprised that an organization like AADI was already formed and collaborating with other AAPI groups. I immediately emailed them to ask if there were any more opportunities to join the team as a volunteer; the rest is now history!
What do you hope to change for the next generation of disabled Asian Americans?
I hope that, for the next generation of disabled Asian Americans, the services that they seek will have a deeper understanding of how different cultures interpret the concept of disability and how internalized stigmas can act as barriers to access to care. We need healthcare providers to bridge the gap between empowering people with disabilities to choose their health and happiness and understanding the cultural context of what these choices mean to an Asian American person with a disability.
I also hope that the next generation of disabled Asian Americans learn that their experience is not unique to them and that they know there is a community out there for them. Growing up, I didn’t have any disabled Asian American women that I could look up to as role models, and I never read any stories from someone who had a similar experience as I did. I hope that, by sharing my story and working with AADI to uplift other disabled Asian Americans’ voices, we can reach those that feel alone and uplift their stories!
Xuan Truong (pronounced as Sue Anne), Director of Nonprofit Management
What motivated you to join the board of the Asian Americans with Disabilities Initiative?
The intersectionality around being a disabled Asian American is an interesting one — especially when it comes to advocacy. My parents are very uncomfortable with the idea of questioning the system, after all, they worked hard to live here. Conversations around how society is not set up for the success of people with disabilities will not resonate with them.
The mission of AADI was not only something that I believe in, but it is something I want to be a part of. As the Director of Nonprofit Management, I advise and help guide our team on the Board of Director development and different aspects when it comes to things revolving around 501(c)(3).
What do you think makes AADI unique? What do you like best about it?
AADI is unique in that there is not much space in society where you can come as a disabled Asian American. From my personal experience, I was only given space to be one of those identities at a time because being both would be “too much.”
What do you hope to change for the next generation of disabled Asian Americans?
I would like to see more protection in policies for multiple marginalized populations. For example, disparities are seen within unemployment among people of color. That disparity exponentially widens when disability or multiple disabilities are added to the equation. The Bureau of Labor Statistics currently has an employment breakdown of gender, age, and disability. However, the statistics need to be further disaggregated to include ethnicity and probably general categories of disability (invisible, physical, both).
This article was originally published on Assembly, a Malala Fund’s digital publication and newsletter for girls.
