"Imet Alice Wong in the spring of 2010. I was overseeing diversity and inclusion efforts for the Obama administration, and the White House was running a video contest for Asian American and Pacific Islander Heritage Month. People from all over the country were submitting videos to President Obama, sharing something they thought he needed to know about the Asian American experience."
"My colleague Gautam Raghavan oversaw it and received an overwhelming number of videos to watch, so he asked around to see if anyone was willing to volunteer to watch some. I gladly took a stack, and one afternoon, after pulling together slates of candidates for political appointments, I started working my way through them. In my stack was a video from Alice Wong."
"Living with muscular dystrophy, Alice explained how outside help made her feel uncomfortable at the same time that it made her more independent, and that more people like her needed access to high-quality home and community-based services instead of being pushed into nursing homes against their will. She was about to turn 40, just a few years older than me, and the fact that she was fearing the possibility of institutionalization made me angry."
"The way she described the conundrum she faced was both informative and moving and made me mad that I sat in the White House and Alice had to fight just to live in her community. I immediately picked up the phone and called her to tell her that the video she submitted blew my mind and to get her permission to pass it forward."
Alice Wong, living with muscular dystrophy in a traditional Chinese household in San Francisco, described the stigma of bringing in-home care workers and the tension between discomfort and increased independence. The account emphasized the need for accessible, high-quality home and community-based services to allow people to remain in their communities rather than being pushed into nursing homes. A White House video contest brought her testimony to national attention, prompting an invitation to serve on the National Council on Disability with accommodations for limited travel. The Obama administration pursued solutions to overcome logistical barriers and advance inclusion and independent living.
#disability-rights #home-and-community-based-services #long-term-care-policy #asian-american-experience
Read at The Nation
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