In June 2020, after months of doctors appointments and medical testing, Jennifer Lee ’23 was diagnosed with Crohn’s disease. Although she had many of the typical symptoms of the condition, Lee said her doctors at first hesitated to consider Crohn’s because of its rarity among Asian Americans.
“Since the beginning of my journey with chronic illness,” Lee said, “I began to see how my Asian American identity was influencing not only how I perceived my illness and my body, but how even medical professionals were perceiving disability and diagnosis processes.”
After her diagnosis, Lee sought out communities like the Crohn’s and Colitis Young Adults Network and the Crohn’s and Colitis Foundation’s National Council of College Leaders. But even in groups with other disabled young adults, Lee felt like her Asian American identity set her apart from her peers.
“I quickly found that I didn't see people who looked like myself, and so for the longest time, I thought that I was the only person who felt this way, that I didn't have anyone else to talk to about the specific cultural stigmas around disability, what it was like to be of two marginalized identities — to be both Asian American and disabled,” she said.
Although Lee may have felt alone, she is one of over 1.3 million Americans who identify as both Asian American and disabled. After meeting other people who shared her identities during the American Association of People with Disabilities (AAPD) internship program in summer 2021, Lee decided to form a group dedicated to this intersection.
In July 2021, along with a coalition of disabled Asian Americans and nondisabled allies from around the country, Lee founded the Asian Americans with Disabilities Initiative (AADI), a nonprofit run by and for people like her who identify as both Asian American and disabled. Lee now serves as executive director of AADI and manages an executive team of around 20–25 people at any given time.
“The overarching mission of AADI is to amplify disabled Asian American voices and to provide the next generation of disabled Asian Americans with the tools, resources, and infrastructure to thrive in a world that has not historically always welcomed them,” Lee said.
In its short existence, AADI has already made great strides toward accomplishing its mission of increasing the visibility of the disabled and Asian American community and providing resources on how to live in a world not built to accommodate either group.
AADI began with what Lee calls a “three-pronged vision.” She hoped to publish a resource guide for disabled Asian Americans, host speaker panels and events with people involved in Asian American and disability advocacy, and form a community of disabled and Asian-American peers.
On all three fronts, AADI has made tangible progress.
On Jan. 10, after months of preparation, AADI launched their resource guide, an 80-page document described on the AADI website as a guide “to combat ableism within the disabled Asian American community through first person testimonials, comprehensive peer-reviewed research, and briefs from AADI events.”
AADI’s research committee compiled collections of academic research, lessons on allyship, and profiles of Asian American and disabled activists for inclusion in the guide. AADI received support from the TigerWell Initiative and Service Focus as they developed the guide.
“We had recognized that in the field of academia, there is very little research that has been done on the intersection of disability and Asian American identity, and the reason why that's so important is because this kind of research directly informs and feeds into what policy looks like,” Lee said about the importance of the section on academic research.
The audience for the research guide, and AADI as a whole, encompasses a wide range of stakeholders, according to Megan Liang, a program manager at San Diego State University and AADI’s director of external relations. As an Asian American amputee, Liang became involved with AADI after seeing them highlighted on social media.
“Whether you are a disabled Asian American, an ally, a social worker, or you only identify as disabled or you only identify as Asian American, you're able to take away a new perspective on how this community handles things and the issues that they may face,” Liang said. “And even if it's a small impact of change, I'm just happy that we're able to make it.”
AADI has hosted two speaker events so far. The first speaker panel was on Aug. 13, 2021, featuring Lydia X.Z. Brown, Miso Kwak, and Mia Ives-Rublee, three disabled Asian American activists. The event was virtual, and included American Sign Language (ASL) interpreters and captioning services. Over 50 people attended the event, according to Lee.
“This panel kind of served as the starting point,” Lee said. “[The panelists talked] about the intersection of these two identities themselves, any difficulties that our speakers might have encountered while navigating the space, as well as advice they had for other younger, disabled Asian Americans who are watching.”
More recently, on Jan. 29, AADI held another virtual panel focused on the intersection of art, disability, and being Asian American. Comedian Steve Lee, poet Topaz Winters ’23, and dancer Marisa Hamamoto spoke at the event.
“I was on the panel with several other artists who are Asian American and disabled, so we talked a lot about how our Asian American identities fit in with our work in disability advocacy, as well as our arts work,” Winters said.
“The three streams of my identity — of being an artist, being a disabled person and being Asian — they're not really streams that cross very often in my advocacy work or in my artistic work,” they added. “It was really special for me to be amongst a group of people who very much understood what that was like and the unique challenges but also the unique joys of existing in these three beautiful spaces, and just expanding definitions of what those spaces can be.”
The final goal of forming a community of disabled Asian American peers has been accomplished, so far, in a largely virtual setting. Most of the people involved in AADI have never met in person.
“It's a matter of just highlighting the community, and for me, part of what AADI does is it shows that disabled Asian Americans and our experiences are worthy of taking up space,” Lee said.
“I knew the second that I found AADI, I'd found a specific kind of community that I wouldn't be able to find if I hadn't otherwise sought it out,” Liang said. “My hope is that we're able to host more community-based events in the future because I do understand how empowering it is to be amongst folks who have shared living experiences.”
In the months to come, AADI plans to continue its outreach efforts and spread its mission of accessibility and inclusion for the Asian American and disabled community.
Jiyoun Roh ’24 serves as AADI’s director of outreach and is tasked with managing the organization’s social media. Roh’s brother has cerebral palsy, and she became interested in disability justice after noticing how his disability led to a lack of inclusion for him in the Asian American community.
“We want accessibility to be more than just a disability community,” Roh said. “We want it in further AAPI organizations.”
“We are getting a lot of collaborations with a lot of other organizations and in conjunction with them, we want to build our own community because a community is made better by the people in it,” she continued.
Lee hopes that the conversations started during the COVID-19 pandemic about racial justice and chronic illness continue in the future.
“I think in this COVID-19 pandemic era, we are faced with an extraordinary opportunity to redefine how we understand the disabled experience and how we understand the Asian American experience,” Lee said.
She looks forward to expanding the advocacy work AADI has carried out in the six months since its founding.
“The more work we do in the disability, Asian American, and nonprofit space, the more our team is realizing that there are many definitions of success in terms of what our mission can achieve,” Lee said.
Naomi Hess is a news editor emerita who focuses on university policy and alumni affairs. She can be reached at email@example.com or on Twitter at @NaomiHess17.