Disabled Activist Speaks Out Against Ableism During Pandemic

San Francisco — In early January, one of the country’s top public health officials went on national television and delivered what she called “really encouraging news” on covid-19: A recent studyIt was found that people with multiple medical conditions were responsible for more than three-quarters of all fatalities due to the omicron virus.

“These are people who were unwell to begin with,” said Dr. Rochelle Walensky, director of the Centers for Disease Control and Prevention.

Walensky’s remarks infuriated Americans with disabilities, who say the pandemic has highlighted how the medical establishment — and society at large — treats their lives as expendable. Among those leading the protest was San Franciscan Alice Wong, an activist who took to Twitter to denounce Walensky’s comments as “ableism.” Walensky later apologized.

Wong, 47, can move and breathe using a power wheelchair and ventilator due to a genetic neuromuscular disorder. At 7 years old, she was unable to walk and found refuge in science fiction and stories about mutants or misunderstood minorities.

In 1993, Wong was in Indiana college, where she grew. This was when she became an activist. Indiana’s Medicaid program had paid for attendants who enabled Wong to live independently for the first time, but state cuts forced her to switch schools and move back in with her parents. Wong moved to the Bay Area to attend graduate school. She chose a state that would allow her to hire personal care attendants. She has been happily married since. advocated for better public health benefitsFor people who are elderly, sick, disabled, or poor.

The founder of the Disability Visibility Project, which compiles oral histories of Americans with disabilities. StoryCorpsWong has spoken and writtenAbout how covid and its unprecedented disruption of lives, institutions has highlighted the challenges that disabled people have had to face. She encouraged others with disabilities to join the political fray and rally them through her. podcast, Twitter accountsWith tens of thousands followers, and a nonpartisan online movement called #CriptheVote.

Wong is nocturnal — she typically starts working at her computer around 9 p.m. On a recent evening, she spoke with KHN via Zoom from her condo in the city’s Mission District, where she lives with her parents, immigrants from Hong Kong, and her pet snail, Augustus. This interview has been edited to be more concise and clear.

Kaiser Health News: Why do you refer to people with disabilities as “oracles”?

Alice Wong: People with disabilities have always lived at the margins. And people on the margins really notice what’s going on, having to navigate through systems and institutions, not being understood. When the pandemic first hit, the public was up in arms about adjusting to life at home — the isolation, the lack of access. These were things many chronically ill and disabled persons had experienced. People with disabilities had tried for years to advocate for online learning and accommodations at work. The response was: “Oh, we don’t have the resources,” “It’s just not possible.” But with the majority inconvenienced, it happened. People had to start thinking about accessibility and flexibility. That is ableism, where you don’t think disabled people exist, you don’t think sick people exist.

Do you notice this type of thinking more than before the pandemic?

Well, yes, in the way our leaders talk about the risks, the mortality, about people with severe illnesses, as if they’re a write-off. I’m so tired of being forced to assert myself. Is this the kind of world where we have to defend humanity? What is important in society? It is someone who can walk and talk, and has no comorbidities. It is an ideology just like white supremacy. It is the foundation of all our systems. And so many people are discovering that they’re not believed by their doctors, and this is something that a lot of disabled and sick people have long experienced. We want to believe in this mythology that everybody’s equal. My critique is not a personal attack against Dr. Walensky; it’s about these institutions that historically devalued and excluded people. We’re just trying to say, “Your messaging is incredibly harmful; your decisions are incredibly harmful.”

Which decisions?

The emphasis on vaccinations is more important than other mitigation methods. That is very harmful because people still don’t realize, yeah, there are people with chronic illnesses who are immunocompromised and have other chronic conditions who cannot get vaccinated. And this back and forth, it’s not strong or consistent about mask mandates. With omicron there is huge pressure to reopen schools and businesses. Why don’t we have free tests and free masks? You’re not reaching the poorest and the most vulnerable who need these things and can’t afford them.

How has the pandemic affected your life?

Since 2002, I have not been outside other than to get my shots.

Because you’re so high-risk?

Yeah. I have waited so long for my own good health. For example, physiotherapy. I don’t get lab tests. I’ve not been weighed in over two years, which is a big deal for me because I should be monitoring my weight. These are things I’ve put on hold. I don’t see myself going in to see my doctor any time this year. Everything’s been online — it’s in a holding pattern. How long can I continue this? I really don’t know. Things might get better or worse. So many things disabled people have been saying have been dismissed, and that’s been very disheartening.

What kind of things are you looking for?

California was one example. It was almost last year at this time. removed the third tierPriority for covid vaccine. I was looking forward to being vaccinated. I was thinking for sure that I was part of a high-risk group, that I’d be prioritized. The governor announced that he was going to eliminate the third tier I was part of and replace it with an age-based system. For young people who are high-risk, they’re screwed. It made me angry. These messages and values and decisions all suggest that certain people can be disposable. They’re saying I’m disposable. No matter what I produce, what value I bring, it doesn’t matter, because on paper I have all these comorbidities and I take up resources. This is wrong, it’s not equity, and it’s not justice. It was a huge undertaking. community-based effortLast year to get the state back on track. We’re saying, “Hey we’re here, we exist, we matter just as much as anyone else.”

Do you think there’s any way this pandemic has been positive for disabled people?

I hope so. There’s been a lot of mutual aid efforts, you know, people helping each other. People sharing information. People organizing online. Because we can’t wait for the state. These are our lives at risk. Things were a little easier in the last two year, but I do not mean that because many universities and workplaces are now going backwards. They’re doing away with a lot of the hybrid methods that really gave disabled people a chance to flourish.

You mean they’re undoing things that helped level the playing field?

Exactly. High-risk people have to make difficult decisions now. That’s really unfortunate. What’s the point of all this if we don’t learn and evolve? To create a new standard. I can’t really see that yet. But I have hope.

This story was created by KHN, which publishes California Healthline, an editorially independent service provided by the California Health Care Foundation.

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