September 22, 2022 By Northwest Asian Weekly Leave a Comment

By Kai Curry Northwest Asian Weekly

Photo of Wong with her Twitter announcement of the book’s publication. (Photo provided by Alice Wong)

When I first started reading Alice Wong’s memoir, Year of the Tiger, published Sept 2022, even while I was still in the introduction, I thought, “Wow, this lady is mean.” By the time I got to the end, I thought, “Gosh, this lady is a saint.” I don’t know Wong, but I’m guessing she’d prefer the first. What you learn, though, while reading this 360-odd pages of previously published writing, sprinkled with new writing, cartoons, lists, and blog transcripts is that Wong is not mean nor a saint. But she is angry. It’s the kind of anger that comes from someone who cares so much about justice, equity, and diversity, and yet keeps getting thwarted. It’s anger that serves her well.

“So far, rage has been a generative force balanced with rest and pleasure,” Wong says. “But I gotta be honest, I am tired.” As a person with muscular dystrophy—a degenerative muscle disease—Wong has to fight for the right of her very existence.

“I’ve always been an activist, whether I wanted to be or not,” she told the Northwest Asian Weekly. Every single day, Wong feels viscerally the precariousness of life in a way many of us only felt for the first time due to the COVID-19 pandemic. BTW, her commentary on the carelessness of people partying at the beach during that first spring break of COVID-19 in 2020 is on point and made me angry, too, all over again.

Wong is the editor of a previous collection of stories on disability called Disability Visibility.

She feels strongly about the importance of telling stories—even if it’s only to yourself.

“To me, that is a form of activism. To really amplify our lived experience,” she said. While she spent the first years of her life shrinking at how “visible” she felt in a world of able-bodied persons, in her wheelchair, unable to keep up with the rest of the class, for her adult life she has been an advocate for greater visibility of disabled people in a world that would like to pretend they don’t exist, and if they do have to come into contact with them, pay them less, and feel sorry for them because their life just must not be worth living.

There are some who would even prefer that someone like Wong be dead.

Wong using assistive technology to visit President Obama at the White House. (Provided by Alice Wong)

“As a disabled woman of color, my life is unavoidably high risk,” she said. Take philosopher Peter Singer, who in Wong’s eyes is a modern example of the proliferation of eugenics. Or the mom, Tania Clarence, who killed her three disabled children in 2014 because she could “see no hope for the future” for them.

“I am an unwitting character in a eugenic horror movie based on real events,” Wong said.

She has a love-hate relationship with activism and so when Wong puts out a memoir, it’s with hesitation and a heavy dose of revulsion that maybe her book will just be the “token” disabled autobiography of the year. Where are the disabled authored cookbooks she asks?

Where are the disabled people telling their regular, everyday stories without having to “represent”? For those reasons,

she didn’t so much provide us with a memoir, as a life. She showed us her story in all of its quirkiness, difficulty, and beauty. She doesn’t shirk from any aspect of her complicated life as a “cyborg” who depends on machines and helpful humans to survive and thrive. There is an entire chapter, for instance, on how much she loves her sippy cup, which collects her spit since her throat muscles have a hard time working properly, even with assistive devices.

Wong has a lovely sense of humor and a glorious creativity that, thanks to the internet, she is able to share with the rest of us, since it’s hard for her to get out and about. Isn’t it interesting, she notes, how inventions for disabled persons are what allowed the rest of the world to function during the pandemic? (Think telecommuting and Zoom) Isn’t it a shame that everyone just wants to get “back to normal”? “The whole pressure to return to what we think is normal is something we need to let go,” says Wong. “I want everyone to think about looking ahead as a real chance to rethink the world.” She continues in the chapter, “No to Normal,” “What if…we learn from these difficult times and design a better world centered on access, care, and justice?”

What was super interesting for me – and vital for those who don’t remember personally—is that Wong was around before the Americans with Disabilities Act. She remembers when nothing was accessible. It was due to her attendance and self-advocacy that the University of California, San Francisco created accessible housing, bathrooms, and elevators. Wong’s trials during the pandemic are harrowing. She documents what she went through to get a vaccine.

Seems like a given she would get one early on, right? Wrong. She talks about how blithely a doctor or company will tell a patient to stop a discontinued or defective treatment (such as a filter she needs which turns out doesn’t filter very well) and say “just make do” when for her, that could mean death or total immobility.

Wong lives a trifecta of discrimination as a disabled Asian female.

“Living at multiple axes of oppression can be heavy,” she wrote in an open letter penned to Asian disabled girls. “We exist and that is everything,” she tells them. “You are enough.” She rebels against a notion of what productivity looks like. What quality of life looks like. “People of color, women…we have not been served by the health system well at all,” she says in a podcast.

The book contains tidbits of Wong’s life as the child of Chinese immigrants, and Chinese New Year with grandparents in Hong Kong. An enemy of the patriarchy, she appreciates and mourns her grandmother laboring the entire holiday making dumplings and wonders if she ever ate one herself. To preserve family traditions, Wong interviewed her mother about this most important of Asian holidays. She also dedicates an entire chapter to “jook” or congee.

(Wong is only able to consume soft foods at this point and is unabashedly in favor of desserts and whipped cream).

Wong knows that all government policies are political and reflect our beliefs and values as a society. And she knows that disabled people are not valued. She hopes that one day, they will be.

She asks everyone to ask themselves, “Who is missing in the spaces you inhabit, and why?”

Here is Wong’s dream from the chapter, “Future Notice,” her own obituary.

“Successive natural disasters, pandemics, wars, and mass migrations produced the largest percentage of disabled people in recorded history. The confluence of these forces created a reimagined society that dismantled notions of enforced productivity and toxic individualism. This allowed Alice the freedom and support to do everything she wanted during the latter half of her life.”

Kai can be reached at info@nwasianweekly.com.

Filed Under: Profiles, On the Shelf, Feature stories Tagged With: 2022, VOL 41 NO 39 | SEPTEMBER 24 - SEPTEMBER 30

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