Thank You Alice Wong

Alice Wong has passed away and the disability community has lost a leader. I lost a mentor and a friend. The Disabled Ginger wouldn't exist without Alice and everything she taught me.

Late last night night Alice’s friend Sandy Ho shared a message on Alice’s social media… Alice had passed away. She had written her own goodbye because she knew she was running out of time.

The news shook the disability community, myself included. Alice Wong has been a leader, an inspiration and a force for disabled voices for as long as I can remember.

A talented writer, she encouraged disabled people to take up space in the world. To be visible despite society trying to demand we be invisible. To embrace our disabled bodies instead of fighting against them. To dismantle our own internalized ableism and learn how to love ourselves and move through this increasingly hostile world.

Her writing was a gift. A comfort in difficult times. A roadmap for how to accept yourself and lean in to being disabled.

Many people would find her writing when they first became disabled, and they would embrace it because it was accessible, raw, honest and focused on how to learn to adapt and survive.

I was one of those people. Her work helped guide me towards a place of acceptance, but it also inspired me to become an advocate. It inspired me to take my previous skills as a theatre critic and turn them into disability visibility.

The Disabled Ginger would likely not exist without her.

Image Description: A photo of Alice Wong in a blue shirt sitting in her wheelchair. She has a trach tube and is holding her book “The Year of the Tiger”

When I first became disabled I rejected the label. I didn’t want people to see me that way. My disabilities were invisible so I figured no one ‘needed to know’. I felt ashamed. I was afraid of how friends and colleagues would treat me.

Would they see me as ‘less than’? Would they think I wasn’t as capable as I was before? Questions swirled in my mind that were too hard to answer, so I shoved them down deep and continued moving through the world as though nothing had changed. I denied my own reality. I refused my body the accommodations it needed. I pretended I was ‘fine’.

I was also worried about whether the disability community would accept me. I don’t ‘look’ disabled. I was still working and earning a living. Did that mean I wasn’t ‘disabled enough’? I wasn’t sure.

My fear was that I would alienate my friends and loved ones by identifying as disabled, and then be rejected by the disability community for not being disabled enough.

For years I suffered through this internal conflict with very little support, and then I found Alice.

Her book “The Year of the Tiger” changed my life. It was about her life as an activist and her fight for disability justice.

I remember reading it and wondering ‘what’s disability justice? I’ve never heard that term before.’

Imagine that. I had never heard about disability justice despite being disabled myself. That’s because ableism is everywhere and in many ways, society still views it as ‘acceptable’ to discriminate against disabled people.

We don’t have parades or awareness campaigns. There isn’t a push to stop using ableist slurs and language. People don’t call others out when they discriminate against the disabled. It’s still socially acceptable, and it’s a big part of why I was afraid to admit I had joined their ranks.

Alice wasn’t afraid. She was fearless. She embraced her disabilities and made sure the world saw her for who she was.

Her work helped me understand that there is no social justice without disability justice.

She helped me learn that my own prejudice against disabled people was what was holding me back from accepting myself and leaning into my illnesses.

I slowly began to write about my experience. Short posts on twitter. Then longer threads. Then I began participating in Spaces (a twitter feature that is similar to a group zoom call) and I would publicly identify as disabled.

I began learning about disability justice and the various ways we are discriminated against.

I fought against ableism and eugenics. I raised awareness for Canada’s Medical Assistance in Dying program and the unethical ways it was targeting low income disabled people.

It was my posts about MAiD that caught Alice’s attention, and we became contacts. She had inspired me to become an advocate, and she would go on to inspire me to create The Disabled Ginger.

I am forever grateful to her for that, it was an incredible gift.

This platform has connected me with people all over the world, and it’s given me a reason to get out of bed in the morning.

It’s given me a way to help the disability community and fight for both disability justice and social justice.

It’s helped me learn to accept myself and lean into accommodations, and now I try and help others do the same thing.

Being disabled can be scary. Living in a body that doesn’t work right is an unsettling feeling. Living in a world that sees you as ‘better off dead’ is crushing.

Nothing about this existence is easy, but as Alice would say, we are also oracles. We are a mirror and if you look at us, if you refuse to look away, we can teach you so much about life, death and suffering.

That is a unique superpower we have. What we’ve endured makes us strong. It helps us see things that other people miss. It strips bare all the noise of this world and leaves us with what really matters. It unearths your purpose and helps you figure out your priorities.

Thanks to Alice, I went from being ashamed of being disabled to seeing myself as an oracle. To embracing my unique potential to lead and help others accept their disabilities. She helped me become a writer again.

I will never forget her.

In her honour, I want to mention a few causes she was passionate about and encourage people to support them to keep her memory alive.

One of them was Covid. Alice had a tracheostomy which meant she was unable to mask. She was extra vulnerable to Covid infections and when the world rushed ‘back to normal’, society decided to leave people like her by the wayside.

She wasn’t willing to accept that. She fought tirelessly for mask mandates in healthcare and clean air standards. She shared stories of being in the hospital and having her disability accommodation requests ignored.

She explained how much Covid could hurt her and how vulnerable it felt to be unable to wear a mask to protect herself.

She was a perfect example of why other people need to wear masks even if they don’t personally think Covid will hurt them. It’s an airborne virus and we all share the air. If we don’t take steps to protect one another, we all remain at risk.

When states started to try and pass mask ban bills, Alice was leading the fight against them. She pointed out they would mark a return to ‘ugly laws’ and force disabled people out of public spaces.

Mask bans were clearly designed to punish us for daring to care about avoiding Covid. They were designed to convince all the non disabled people that the threat had passed and they could go back to enjoying life. Those pesky sick people who keep reminding you about Covid? We’re going to disappear them for you.

Alice wasn’t having any of that, and neither was I. We both fought mask bans as much as we could alongside members of the disability community.

She wrote a searing indictment of the bans in an article for Teen Vogue, and it was the first time I got to collaborate with her. Being asked to write for one of her articles was one of the high points of my life, and I encourage everyone to read the piece to better understand why some of us are still fighting for people to mask up.

She also vocally opposed the genocide in Gaza, and rightfully pointed out it was a disability rights issue.

The ongoing starvation and torture of the Palestinian people is causing disability. It’s impossible to care about disability justice and ignore what’s happening in Palestine. She showed me that, and once again she has my sincerest thanks.

She helped create ‘Crips eSims for Gaza’, a crowdfunding initiative to help raise money to get the people of Gaza eSims so they could connect to the outside world. To date it has raised $3,123,421. If you want to donate or learn more, you can do so here: https://chuffed.org/project/crips-for-esims-for-gaza

Alice left her mark on this world. She helped more people than we will ever know. She will be greatly missed.

In her honour, please wear a mask (especially in healthcare). Please stop using ableist slurs and language. Please help engage in disability justice. Please care about injustice around the world. Please help disabled people embrace their disabilities, find their unique power and move through this world with the courage, ferocity and integrity of warriors.

My heart is heavy. It will be heavy for awhile. We’ve lost so many people this year, and the sad reality is we will probably lose more.

No one is guaranteed a tomorrow, and living with disabilities often means having to embrace your own mortality and get comfortable with knowing you probably won’t live as long as your peers.

Alice understood that, and she made the most of the time she had.

I’m trying to do the same thing.

Thank you to everyone who is on this journey with me. For your support. For your kindness. For helping pick me up when I’m feeling too low to continue on.

We are stronger together, and one thing Alice’s death has already shown me is just how united this community can be.

None of us are ever truly alone, and that might be the greatest gift of all.

I will leave you with Alice’s own words, courtesy of her friend Sandy Ho:

The above graphic reads:

This is Alice’s friend Sandy Ho, posting. Per Alice’s wishes, this message is being shared at the time of her passing.

Hi everyone, it looks like I ran out of time. I have so many dreams that I wanted to fulfill and plans to create new stories for you. There are a few in progress that might come to fruition in a few years if things work out. I did not ever imagine I would live to this age and end up a writer, editor, activist, and more. As a kid riddled with insecurity and internalized ableism, I could not see a path forward. It was thanks to friendships and some great teachers who believed in me that I was able to fight my way out of miserable situations into a place where I finally felt comfortable in my skin.

We need more stories about us and our culture.

You all, we all, deserve the everything and more in such a hostile, ableist environment. Our wisdom is incisive and unflinching. I’m honored to be your ancestor and believe disabled oracles like us will light the way to the future. Don’t let the bastards grind you down. I love you all.

Do you have an Alice Wong story to share? Did her writing and advocacy help you embrace your disabilities?

I would love to share stories in the comments and help each other cope with the grief of losing such a beloved member of our community.