There are days when the pain is too much to bear.
Growing up in Ridgewood, Jennifer Lee suspected something was wrong with her body. But his family would insist that nothing was wrong.
In Lee’s Korean American immigrant family, anything less than perfection was unacceptable, she recalls. In 2019, she was still trying to reach that impossible standard, seemingly tied to the American Dream as an immigrant about to enroll at Princeton University.
But his pain persisted. In June 2020, Lee was diagnosed with Crohn’s disease, a form of inflammatory bowel disease. She went through months of hospitalizations and surgeries, finally accepting that disability was part of her life. Chronic illness is an invisible disease, Lee said, but it should be fought head-on despite the cultural stigma against disability.
In his loneliness and struggle, Lee embarked on activism, sowing the seeds of what would be the first nonprofit organization dedicated solely to helping the 1.3 million Asian Americans with disabilities. Last July, she launched the Asian Americans with Disabilities Initiative, or AADI, based in New Jersey.
“I was wondering if there were other people who looked like me who shared these experiences,” Lee, 20, told me in an interview.
She began to explore her identity as a Korean American woman with a chronic illness, and the particular challenges that this entails, just like a wave of racial violence against Asian Americans was mounting. In March last year, the Atlanta spa shooting claimed the lives of eight people, including six Asian Americans. This event shook Lee to the core.
The hate crimes, coinciding with Lee’s own chronic pain, opened her eyes to feelings of being ostracized. She felt an urgent need to stand up for marginalized people.
Lee worked with a group of students from Princeton University to start AADI, which now has more than 100 members. The group has put together an 80-page guide of personal stories, research and community resources for Asian Americans facing disabilities. The guide is the first of its kind for Asian Americans with disabilities, Lee said.
Led by a core of 25 volunteers, the organization is free to join and offers its resources for free. The goal is to help as many people as possible, she said.
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Lee was motivated by how her race amplified her own struggles. Because it’s not a condition that regularly affects Asians, her Crohn’s disease went untreated by doctors who looked for other causes, she said. the The condition is so misunderstood in his community that there is no widely accepted translation for “Crohn’s disease” in Korean, Lee added. This makes it difficult to explain to friends and family.
His family in Korea, including his father, suggested Lee hide his illness. There is a malaise in Asian societies on disability recognition, she said.
“He fights the culture of perfection and the model minority stereotype,” Lee said. “It’s hard for Asian Americans to talk about disability. There’s shame and guilt.”
AADI serves as a safe space for Asian Americans to discuss their needs with like-minded people, she added. The group offers online meetings and expert panels to speak on issues related to disabilities.
While pursuing her studies in public policy and Asian American issues at Princeton, Lee still grapples with her disability at times. She often suffers painful flare-ups. Princeton took her in, giving her a dorm near a toilet stall. But going about daily activities can be difficult, she said.
Helping others deal with cultural barriers related to disability gave Lee a purpose. AADI has thrived on the team of volunteers as well as grants from foundations and Princeton University.
As the organization grows, helping to serve some of the 41.1 million Americans with disabilities (12.7% of the population), Lee’s goal is to eradicate the contempt associated with chronic disease.
“I hope people realize they’re not alone on this journey,” she said.
Mary Chao 趙慶華 covers the Asian community and real estate for NorthJersey.com. To get unlimited access to the latest news from North Jersey, please subscribe or activate your digital account today.