Alice Wong sparked a fire in all of us in the disability community

In her anthology “Disability Visibility: First-Person Stories from the Twenty-first Century,” the late activist and writer Alice Wong offers profound insight into the power of storytelling. She says in one of her essays, “Storytelling can be more than a blog post, essay, or book. It can be an emoji, a meme, a selfie, or a tweet. It can become a movement for social change.” Wong’s 2022 memoir, “Year of the Tiger: An Activist’s Life,” embraces this notion with its unique narrative structure. Rather than a traditional autobiography, this book is a culmination of essays, podcast transcripts, drawings, family recipes, and photos from Wong’s life.

Wong loved and had an intrinsic gift for storytelling. She used stories as a catalyst for social change and to make the world more inclusive. She spoke of herself as primarily an activist, and she dedicated her life to amplifying the voices of Disabled people and advocating for us in every aspect of society.

While I never had the chance to meet Wong, we did correspond a bit over email. In the disability world, she had an almost mythic presence and influence. Her death on Nov. 14 sent a wave of shock across our community. Speaking for myself and many others with SMA and other disabilities, we looked up to her as a leader whose spirit of determination and resilience sparked a fire in all of us.

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Growing up, I thought next to nothing about concepts like ableism, societal change, and disability justice. I knew that people’s ignorance bothered me, but I lacked the knowledge and fortitude to advocate for systemic change. As I got older and learned more about disability history and activists like the late Judy Heumann, I began to understand just how powerful our stories are, and how strong our communities are when we are united.

During the height of the COVID-19 pandemic, when the world came to a halt and Disabled and chronically ill people in particular were among the most high-risk populations, Wong relentlessly spoke up for us. She demanded measures for public safety, criticized institutions, and above all, reminded us of our inherent value.

Last year, Wong published an essay about facing the certainty of death and embracing life at every moment. Death is something that Disabled people are all too familiar with, and it’s something I’ve written about many times. This excerpt from Wong’s essay resonates with me the most: “Death remains my intimate shadow partner. It has been with me since birth, always hovering close by. I understand one day we will finally waltz together into the ether. I hope when that time comes, I die with the satisfaction of a life well-lived, unapologetic, joyful, and full of love.”

Wong’s life and the work she did echo this scene from “Star Wars Episode VIII: The Last Jedi.” When resistance fighter Poe Dameron utters the phrase, “We are the spark that will light the fire that will burn the First Order down,” he instills hope in people who find themselves beaten down and oppressed by a tyrannical regime. Likewise, living as a Disabled person is draining. We face obstacle after obstacle, and we fight regularly for our basic needs and accommodations.

And yet, people like Wong push us to keep fighting and not to settle. She encouraged us to embrace “crip time.” We take up space in society, and we move at a different pace, and we should. Above all, she wanted us to love and empathize with one another. The disability world feels a little less bright without Wong’s presence, but her legacy will carry on.

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