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‘Worthy to take up space’: Jennifer Lee ’23 founds nonprofit to support disabled Asian Americans

In June 2020, after months of doctor’s appointments and medical tests, Jennifer Lee ’23 was diagnosed with Crohn’s disease. Although she had many typical symptoms of the disease, Lee said her doctors were initially hesitant to consider Crohn’s disease because of its rarity in Asian Americans.

“From the beginning of my journey with a chronic illness,” said Lee, “I began to see how my Asian American identity influenced not only the way I perceived my illness and my body, but also the way which even medical professionals perceived the disability and diagnostic processes. ”

After his diagnosis, Lee sought out communities like the Crohn’s and Colitis Young Adults Network and the National Council of College Leaders of the Crohn’s and Colitis Foundation. But even in groups with other young adults with disabilities, Lee felt her Asian American identity set her apart from her peers.

“I soon discovered that I didn’t see people who looked like me, and so for a very long time I thought that I was the only person who felt that way, that I had no one else to talk to. of the specificity of the 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 lonely, she is one of more than 1.3 million Americans who identify as both Asian American and disabled. After meeting others who shared his identity during the American Association of Persons with Disabilities (AAPD) internship program in the summer of 2021, Lee decided to form a group dedicated to this intersection.

In July 2021, along with a coalition of Asian Americans with disabilities and non-disabled allies from across the country, Lee founded the Asian Americans with Disabilities Initiative (AADI), a nonprofit organization run by and for people like her who identify as both Asian American and disabled. Lee is now Executive Director of AADI and manages a leadership team of approximately 20-25 people at any one time.

“AADI’s overriding mission is to amplify the voices of Asian Americans with disabilities and provide the next generation of Asian Americans with disabilities with the tools, resources, and infrastructure necessary to thrive in a world which hasn’t always welcomed them,” Lee said.

In its short existence, AADI has already made great strides toward fulfilling its mission to increase the visibility of the disabled and Asian American community and provide resources on how to live in a world that is not not built to accommodate either group.

AADI started with what Lee calls a “three-pronged vision.” She hoped to publish a resource guide for Asian Americans with disabilities, host speaker panels and events with people involved in Asian American and disability advocacy, and build a community of peers. disabled and Asian Americans.

On all three fronts, AADI has made tangible progress.

On January 10, after months of preparation, AADI launched its Resource Guide, an 80-page document described on AADI’s website as a guide “to combat ableism within the Asian American community. disability through first-person accounts, extensive peer-reviewed research, and AADI event summaries.

The AADI Research Committee has compiled collections of academic research, alliance lessons, and profiles of Asian American and disabled activists for inclusion in the guide. AADI received support from the TigerWell Initiative and Service Focus in developing the guide.

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“We had recognized that in the academic field there is very little research that has been done on the intersection of disability and Asian American identity, and the reason it is so important is that this type of research directly informs and feeds into what policy looks like,” Lee said of the importance of the academic research section.

The audience for the research guide, and AADI as a whole, encompasses a wide range of stakeholders, according to Megan Liang, program manager at San Diego State University and AADI’s director of external relations. As an Asian American amputee, Liang got involved with AADI after seeing them highlighted on social media.

“Whether you are an Asian American with a disability, an ally, a social worker, or only identify as disabled or identify only as an Asian American, you can take away a fresh perspective on how this community is dealing with things and issues that they might face,” Liang said. “And even though it’s a small impact of change, I’m just glad we’re able to do that.”

AADI has held two speaker events so far. The first panel of speakers took place on August 13, 2021, featuring Lydia XZ Brown, Miso Kwak and Mia Ives-Rublee, three Asian American activists with disabilities. The event was virtual and included American Sign Language (ASL) interpreters and captioning services. More than 50 people attended the event, according to Lee.

“That panel kind of served as a starting point,” Lee said. “[The panelists talked] about the intersection of these two identities themselves, the difficulties our speakers might have encountered while navigating through space, as well as any advice they had for other younger Asian Americans and disabled watching.

Most recently, on January 29, AADI hosted another virtual panel focusing 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 Asian American and disabled artists, so we talked a lot about how our Asian American identities fit into our disability rights work, as well as ‘to our artistic work,” Winters said.

“The three streams of my identity – being an artist, being disabled, and being Asian – aren’t really streams that intersect very often in my advocacy work or in my artistic work,” they added. “It was really special for me to be among a group of people who understood very well what it was and the unique challenges, but also the unique joys of existing in these three beautiful spaces, and simply expanding the definitions of what these spaces can be.”

The ultimate goal of forming a community of disabled Asian American peers has been achieved, so far, in a largely virtual setting. Most people involved with AADI have never met in person.

“It’s just about showcasing the community, and for me, part of what AADI does is show that Asian Americans with disabilities and our experiences deserve to take up space,” Lee said.

“I knew the second I found AADI, I had found a specific kind of community that I wouldn’t have been able to find if I hadn’t looked for it otherwise,” Liang said. “I hope we can do more community events in the future, because I understand how empowering it is to be among people who have shared life experiences.”

In the coming months, 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 is AADI’s Director of Outreach and is responsible for managing the organization’s social media. Roh’s brother has cerebral palsy and she became interested in disability justice after noticing how her disability had led to a lack of inclusion in the Asian American community.

“We want accessibility to be more than just a disability community,” Roh said. “We want it in other AAPI organizations.”

“We get a lot of collaborations with many other organizations and together with them, we want to build our own community because a community is made better by the people in it,” she continued.

Lee hopes the conversations started during the COVID-19 pandemic about racial justice and chronic disease will continue in the future.

“I think in this era of the COVID-19 pandemic, we face an extraordinary opportunity to redefine how we understand the experience of people with disabilities and how we understand the Asian American experience,” Lee said.

She looks forward to expanding the advocacy work AADI has done in the six months since its inception.

“The more we work in the disability, Asian American, and nonprofit space, the more our team realizes that there are many definitions of success in terms of what our mission can accomplish,” Lee said.

Naomi Hess is an emeritus editor who focuses on university politics and alumni affairs. She can be reached at [email protected] or on Twitter at @NaomiHess17.

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Rodney N.

The author Rodney N.