After being diagnosed with a chronic condition, she started a community for other Asian Americans with disabilities

• After being diagnosed with Crohn's, Jennifer Lee wanted to create a community for Asian Americans with disabilities.
• The Asian Americans with Disabilities Initiative is a youth-led non-profit focused on advocacy work.

After her diagnosis with Crohn's disease two years ago, Jennifer Lee decided she wanted to create a community for Asian Americans with disabilities. But she quickly found little institutional support for her project.

"I was told by multiple professors, administrators, just grantmakers in general that the idea was too niche," said Lee, a Korean American student at Princeton University.

That lack of support didn't stop her. In July 2021, Lee founded the Asian Americans with Disabilities Initiative with help from a small yet mighty team of volunteers. Almost a year later, the group—referred to as AADI—is now a youth-led full-fledged non-profit supporting disabled Asian Americans through advocacy work.

The organization's purpose is to build community and raise awareness around disability justice for Asian Americans. Despite 1.3 million Americans identifying as disabled and Asian American, there is still a lack of support for those who identify as both. These intersecting identities can pose their own unique challenges—Lee said she faced skepticism from doctors about her diagnosis because many believed Crohn's was a disorder that primarily affected white people, not Asians. Crohn's is a chronic illness that causes inflammation and irritation in a person's digestive tract.

Lee, who serves as AADI's executive director, said founding the organization was initially a way for her to make friends with other disabled Asian American youth going through similar experiences and "talk to about these issues that we're facing and to talk about intersectionality."

On the other side of the country, in California, 26-year-old Justin Tsang felt the same way. Born with encephalopathy, a condition that affects the brain's functions, Tsang had difficulty finding community with other young disabled Asian Americans. So when Tsang met Lee during an internship at another disability advocacy group, their encounter felt serendipitous.

"In my own disability advocacy support spaces before coming to the [internship] program, I didn't see any Asian Americans with disabilities," said Tsang, who is Chinese American. Tsang now leads AADI's research efforts as its director of research.

The group has created a first-of-its-kind resource guide.

Beyond hosting panel discussions and growing its online community—currently 1,500 followers strong, according to AADI's Instagram account—among the major milestones in the group's first year was the release of the Asian Americans with Disabilities Initiative Resource Guide in January.

The 80-page digital document features academic research on issues facing Asian Americans with disabilities, first-person testimonials, and profiles of Asian American disability leaders. It also includes need-to-know information for allies outside of the community.

The resource guide is the first of its kind to focus on disability issues among Asian Americans, according to the group.

"I think Justin and I quickly realized that the resource guide if we wanted to do it, we had to do it well," Lee told Insider in a joint zoom call with Tsang. The team spent months pouring over papers and compiling materials for the guide, and had it reviewed by Asian leaders in the disability advocacy space. Among them Marisa Hamamoto, founder of the accessible dance company Infinite Flow, and Mathew McCollough, the director of the DC Office of Disability Rights.

But the AADI team also faced challenges while compiling the resource guide, including the severe lack of academic literature on disability issues among Asian Americans.

"In the disability space, the topics are really broad in scope," said Tsang, an urban studies graduate from UC Berkeley. "With the research about disabled Asian Americans being limited, you really had to use existing academic resources to really try to complement what would work with the guide and what was also available online through different sources."

In addition to filling a resource gap, the guide will hopefully influence policy change in the communities where disabled Asian Americans belong, too.

"The purpose of our resource guide really answers the question of 'What can I do next? How can I become a better ally? How can I learn more about this community and learn more about this issue?'" Lee said. "That's really where our resource guide comes in."

The resource guide has attracted the attention of academics

Although the resource guide will be continuously updated, it has already attracted the attention of academics. The organization is working with Virginia Commonwealth University to develop AADI's first literature review related to disabled Asian Americans and healthcare, and has partnerships with bodies such as the Ford Foundation and the National Institute of Health.

As AADI approaches its one-year anniversary in July, which also happens to be Disability Pride Month, the group plans to celebrate the disabled Asian American community it serves through a set of hybrid remote and in-person festivities.

Beyond their work with AADI, Lee and Tsang are also ready to take on new endeavors. This summer, Lee will be starting an internship under the ACLU's justice division of its National Political Advocacy Department while Tsang, who is an intersex person, plans to build an advocacy network with other intersex people in the US and abroad.

Lee hopes the organization she founded will expand while staying true to its core mission: equipping the next generation of disabled Asian American leaders to combat ableism and racism.

"I really do believe that we're at a turning point … where we're going to be talking more about disability on a mainstream level with the onset of long Covid, and thinking about accessibility in the workplace," Lee said. "I'm just so excited to see what AADI can do to be a part of that."