MacArthur genius Alice Wong on resistance in the new year: ‘Life is a dumpster fire, but I’m not alone’

When the coronavirus pandemic first broke out, Alice Wong’s disability activism and writings proved prophetic.

As the virus spread, the failings of the US healthcare system – which disabled activists like Wong had long decried – became starkly apparent to the broader public. As grief and horror gripped the country, as hundreds of thousands died of the virus, Wong became one of the most prominent voices calling for stronger social safety nets and emergency assistance.

Nearly five years later, Wong, 50, has been awarded a MacArthur “genius” grant – a recognition of her activism and efforts to amplify the work and stories of other disabled people. She has also witnessed the country re-elect Trump, who has promised to dismantle healthcare systems and safety net programs.

Wong feels, more than ever, like Cassandra of Greek mythology, shouting dire warnings that no one is willing to hear or believe. “It’s not an honor to be on the forefront of social commentary that makes most people with privilege uncomfortable,” she says.

Still, she says, she plans to keep telling stories. She founded the Disability Visibility Project in 2014, initially as an oral history project designed to collect the stories of disabled people. She has shared these histories in two books, Disability Visibility and Disability Intimacy, and is working on a third.

Wong writes unflinchingly about how US policies and systems fail disabled people, queer people, immigrants and people of color. She writes about her own story – about growing up with a neuromuscular disease, coming into herself and her activism, and a series of medical crises in 2021 that triggered her transformation into a self-described “disabled cyborg” who now relies on a range of technology to stay alive, and a text-to-speech device to communicate.

Over the course of a month, I corresponded with Wong about her life of activism, and her visions for surviving and fighting for human rights in the years to come.

The interview has been edited and condensed for clarity.

You’re a sci-fi lover, and in your memoir, Year of the Tiger, you imagine yourself as a “mutant from the Planet Cripton”. You’re an otherworldly being who winds up in Indianapolis, in a world that doesn’t understand the way you move. And you come into your “age of ascension” as an activist. Where are you now?

I am a disabled cyborg that has gone through another series of augmentations that extended her life until another system fails.

It seems like you had to advocate a lot for yourself, at crucial moments, in your early life. And that’s really where your activism started – it was with self-advocacy.

Even though I had muscular dystrophy my entire life and was under the care of a neurologist, I was never told that part of my prognosis included increased weakness in my diaphragm, which meant needing respiratory support, especially when sleeping. Gradually, I had terrible headaches and constantly dozed off in the middle of class, thinking I was just bored of the material or stressed out from school. What I didn’t know was that I had sleep apnea and signs of respiratory failure.

One day, when I was a first-year student in college, away from home for the first time, I was talking to my mom on the phone and she sensed something was wrong. I brushed off my symptoms, but thanks to my mom’s Spidey senses, she told my dad: “We’re picking up Alice now.”

They drove through snow and picked me up despite my protests. Shortly after I got home, it was clear something was wrong and we went to the ER. I was disoriented the entire time but I remember seeing blood the color of tar filling the vial from my wrist. This was definitely not normal and I knew something was wrong. The pulmonologist said I needed to be stabilized immediately and suggested a tracheostomy so that I could breathe assisted by a ventilator.

Weakened and scared, I had the peace of mind to push back and advocate for myself. I explicitly told him that I wanted to try non-invasive interventions first. I did not want a tracheostomy unless it was absolutely necessary. Even though I had no idea I was in respiratory failure or had any knowledge of pulmonology, I knew my body and what I wanted.

The pulmonologist did not expect my response but he agreed to take an incremental approach.

My activism typically focuses on systems but this one vulnerable moment planted the seeds of advocacy for myself as a patient, and for others. I am really proud of the teenage Alice, who knew herself even though she didn’t know a lot.

How have you been processing the election results, and the fact that the US re-elected a man who oversaw a chaotic, disastrous response to the Covid-19 pandemic?

‘One principle of disability justice is recognizing the inherent value and wholeness of people regardless of their ability to produce.’ Photograph: María del Río

I’m scared like millions of marginalized people who know exactly who Trump is and what he stands for. Strangely, I’m not as panicked as I was in 2016, but I know he will unleash great harm in his second administration. All I know is that networks of mutual aid and community care will continue and require additional support and infrastructure.

The election of Donald Trump reflects the fascism, racism and xenophobia already present in our society. The United States is a country rooted in the myth of the rugged individual, hypercapitalism, ableism and white supremacy. It’s been clear to me that if we take care of everyone, that will contribute to a stronger society even if it comes at an additional cost in taxes, which should be thought of as an investment. It’s not a weakness to need help and no one is invincible.

The 2024 election in many ways was a rejection of the establishment and of “business as usual”. At the same time, it feels like Americans forgot hard-learned lessons from the pandemic.

Trump has always been clear about who he is and what his plans are, which includes putting the Affordable Care Act’s Medicaid expansion back on the chopping block, with the very real possibility of millions of Americans losing their health coverage.

But both candidates have failed in their response to the pandemic, resulting in thousands of people dying from Covid and an insistence that the pandemic is over.

The last two administrations dismantled public health, cut protections and health benefits enacted at the beginning of the pandemic, leaving people in need and unheard, and were responsible for the deaths of thousands of people from Covid. This is just a continuation of how our country leaves people behind in the bid to restart the economy and return to “normal”, which is a scam. Normal is an illusion meant to lull people back into complacency that everything is OK again.

One principle of disability justice is recognizing the inherent value and wholeness of people regardless of their ability to produce. When there are cuts to safety-net programs or scrutiny of recipients of means-tested programs such as SSI [supplemental security income], food stamps and Medicaid, there is a prevailing devaluation of people who cannot work, which [leaves] entire populations of poor, older and disabled people open to becoming scapegoats for society’s ills.

You dedicated your book to fellow “disabled oracles”. What does that phrase mean?

To be a disabled oracle is someone who tells their truths in a hostile ableist world that does not believe you. The pandemic reveals an attitude that disabled, sick, poor and immunocompromised people are disposable. Disabled people already know what it is like to not be believed by the medical establishment when they have a mysterious illness such as long Covid. Disabled people foresaw correctly the need to mask in spite of mask bans and the dangers from lack of masking in healthcare settings.

Some of these policies, including the one put forth by the University of California, state that there is a ban only on masks that “conceal identity” and that masking for medical reasons is permitted. But as you and other activists point out, the policies will inevitably inhibit masking at protests and large gatherings, disproportionately harming immunocompromised people.

I think mask bans are a good example of eugenics and fascism colliding. Proponents of mask bans cite “safety” as one reason for them – that is, the presumption that people are suspect or hiding something if wearing a mask. But these laws and proposed bans are used to suppress the rights of student protesters against the genocide happening in Gaza and protesters involved in other social movements.

Wearing a mask isn’t just to protect yourself, but it’s a form of community care that recognizes we rely on each other to keep all of us safe since they are one of the best defenses against airborne diseases such as Covid and H5N1 bird flu. Not only that, mask bans are the new “ugly laws” [US laws that were enacted starting in the 1860s that essentially made it a crime for visibly poor or disabled people to appear in public] that intentionally keep disabled and other high-risk people from participating in society. It’s already difficult enough being a disabled person in a non-disabled world and mask bans are just another attempt at isolating and marginalizing us.

Your memoir and other writings delve into some really heavy experiences. Equally, you often write with a sense of humor, and your writing is full of references to books, TV and movies, especially sci-fi.

I wanted to make sure that my narrative isn’t solely one of struggle but one of abundance, love and pleasure. The lived disabled experience is complex and nuanced and I hope readers come away with an understanding that we are so much more than our pain and hardships.

I am a lover of science fiction and all things Star Trek, which has an optimistic belief in the benefits of diversity and difference. Speculative fiction, which I read a lot of as a child, such as works by Octavia E Butler and Frank Herbert, is social commentary about the present. I get lost in the worlds of Dune or Parable of the Sower and find their messages so prescient. These kinds of imaginings of the future give me hope and the idea of infinite possibilities.

Is there anything else bringing you joy at this moment?

I moved into my first apartment last year and have been loving the freedom I have now. [In 2024] I turned 50, which is wild because I never thought I would reach this age. I’m astounded that my body lasted this long and I am thankful to still be around.

I insist on resisting with joy and finding pleasure where I can such as with my friends and two cats, Bert and Ernie. Yes, life is a complete dumpster fire, but I am reminded that I am not alone, that I am in this with many others.

And you’re still fighting “for ​​social justice and equality for mutants and non-mutants alike” – even when it feels like no one in power is listening.

I feel despondent and overwhelmed by the political situation often, but then I remind myself this is by design, that those in power want to erode our resolve and [for us to] give up.

“Doing” activism is neither linear or smooth and in times of frustration or exhaustion I tap into my memories of injustice. I remind myself of why I am doing what I am doing and this sustains me. Anger transforms into a battery charger that gives me a boost when it’s sorely needed.