by Kay Curry
Northwest Asia Weekly
Huang tweeted photos of the book’s publication. (Photo courtesy of Alice King)
When I first started reading Alice Wong’s September 2022 memoir, The Year of the Tiger, even while I was introducing it, I was like, “Wow, this lady is so mean.” By the end , I thought, “Gosh, this lady is a saint.” I don’t know Wong, but I guess she prefers the first one. However, what you will learn when you read these 360+ pages of previously published work is that Wong is neither mean nor saint. But she was angry. This anger comes from someone who cares so much about justice, fairness, and diversity, but is constantly frustrated. Anger is very helpful to her.
“Up until now, anger has been a generative force balanced with rest and happiness,” Wong said. “But I have to be honest, I’m tired.” As someone with muscular dystrophy, a degenerative muscle disease, Wong must fight for his right to survive.
“I’ve always been an activist, whether I like it or not,” she told Northwest Asia Weekly. Every day, Wong feels deep down the precariousness of life that many of us have felt for the first time since the COVID-19 pandemic. By the way, her careless comment about people partying at the beach during the first spring break of COVID-19 in 2020 was correct and made me pissed off again.
Wong is the editor of a previous collection of disability stories, Disability Visibility.
She feels strongly about the importance of storytelling—even if it’s just for yourself.
“For me, it’s a form of activism. It really expands our lived experience,” she said. Although she felt in the first few years of her life how “visible” she was in a world of able-bodied people, she was wheelchair-bound and unable to keep up with the others at work, but for her adult life, she has always been Her advocates make people with disabilities more visible in a world willing to pretend they don’t exist.
Some would even prefer someone like Wang to die.
Huang used assistive technology to visit President Obama at the White House. (Provided by Huang Aili)
“As a disabled woman of color, my life was inevitably at high risk,” she said. Take the philosopher Peter Singer, who, in Huang’s eyes, is a modern example of the proliferation of eugenics. Or mother Tania Clarence, who killed her three disabled children in 2014 because she had “no hope for the future” for them.
“I’m an unwitting character in a eugenic horror movie based on true events,” Wong said.
She has a love-hate relationship with activism, so when Wang launched her memoir, with hesitation and a backlash, perhaps her book will become the annual “symbolic” autobiography of the disabled. Where are the recipes created by the disabled, she asked?
Where can people with disabilities tell their day-to-day stories without a “representative”? For these reasons,
What she offers us is not a memoir, but a life. She shows us all her weird, difficult and beautiful stories.She never shies away from any aspect of her complexity
Live as a “robot” that relies on machines and helpful humans to survive and thrive. For example, there’s an entire chapter about how much she loves her sippy cups because her throat muscles struggle to function properly, which collects her saliva even with assistive devices.
Huang has a lovely sense of humour and glorious creativity that thanks to the internet she’s able to share with the rest of us as she has a hard time getting out and about. Wouldn’t it be interesting to point out how the invention of the disabled could make the rest of the world work during a pandemic? (Think telecommuting and Zoom) Isn’t it a shame that everyone just wants to “get back to normal”? “The whole stress of returning to what we think is normal is what we need to release,” Wong said. “I want everyone to see the outlook as a real opportunity to rethink the world,” she continued in the “Rejecting Normal” chapter, “if … we learn from these difficult times and design one to gain, care and a better world where justice is at the center?”
What’s super interesting to me – and crucial for those who don’t remember the individual – is that Huang existed before the Americans with Disabilities Act. She remembered when there was nothing. It is because of her presence and self-advocacy that UCSF has created accessible housing, bathrooms and elevators. The ordeal of Wang during the pandemic is harrowing. She documented everything she went through to get vaccinated.
Seems like she’ll get one very early, right? Incorrect. She talks about how happily a doctor or company would tell a patient to stop a discontinued or flawed treatment (such as a filter she needed that turned out to be ineffective) and when telling her “make do”, which could mean death or completely motionless.
As a disabled Asian woman, Wong lives with triple discrimination.
“Living with multiple oppressions can be heavy,” she wrote in an open letter to girls with disabilities in Asia. “We exist, that’s everything,” she told them. “Enough is enough.” She rejects the notion of what productivity looks like. What is the quality of life like. “People of color, women…we are simply not well served by the health system,” she said on the podcast.
The book contains tidbits of Huang’s life as the child of Chinese immigrants and spending New Years with his grandparents in Hong Kong. An enemy of the patriarchy, she admires and mourns the fact that her grandmother made dumplings all holiday and wonders if she ever ate one herself. In keeping with family traditions, Wong interviewed her mother about the most important festival in Asia. She also dedicates an entire chapter to “joking” or porridge.
(Wong can only eat soft foods at this time, and unabashedly loves desserts and whipped cream).
Huang knows that all government policies are political and reflect our beliefs and values as a society. She knew that disabled people were not valued. She hopes that one day, they will.
She asks everyone to ask themselves, “Who is missing in your space and why?”
This is Huang’s dream in the “Future Notice” chapter of his own obituary.
“Consecutive natural disasters, epidemics, wars and mass migration have created the largest proportion of people with disabilities in history. The confluence of these forces creates a reimagined society that removes the concepts of forced productivity and toxic individualism. This allows Alice has the freedom and support to do whatever she wants for the rest of her life.”
Kay can reach info@nwasianweekly.com.
