CHANGE: Disability, Change, and Time

Living is Grieving 

“....God is change…”

- Octavia E. Butler 

Disabled folx are Gods of Change. Gods of Grief. How we must constantly adapt to our changing bodies makes us some of the most creative problem solvers on the planet. To grieve the world that wasn’t built for us is to grieve the world in climate collapse. To grieve our bodies, which don’t always keep up with our desires, is to grieve so many loved ones whose bodies give out too soon. 

Shortly after we were asked to provide a prompt, our profound beloved oracle Alice Wong [1] passed away suddenly. Struck with intense grief, time slowed, and we were left without words to move forward. That is, until we were offered the chance to celebrate and center Alice Wong through this roundtable. 

Alice Wong was/is a lifelong activist, writer, editor, and community organizer. She was an alchemist and amplifier of all things disabled storytelling, including for the Library of Congress and her own archives, which she published regularly to her enormous following. She dedicated her life to amplifying disabled people from the past and present, and was always planting seeds -- dreaming and scheming of big futures. She never settled for mainstream, mostly white privileged narratives, and instead centered people whose stories intersected with life in more ways than just their disabilities. Alice shared brilliant, complex, nuanced, intersectional disabled narratives in ways never seen before. She was/is rooted in love, life, and intimately knew the importance of community care and connection. 

In an article on disability visibility, Alice shares, “Disabled people are masters of innovation, creativity, and adaptation. We learn how to work with our bodies, sustain ourselves and our communities, and navigate through inaccessible and ableist environments.” [2] 

Alice created, led, and participated in countless projects, supporting so many of us, activists and artists, that her work, her stories, and her impact will live on for the ages. Her internet following was massive as she coined the hashtags #CripTheVote, #DisabledRage, and many others. She helped raise millions of dollars in a mutual aid effort called Crips for eSims for Gaza. Alice Wong had to be one of the first and most famous disabled leaders to staunchly oppose the Israeli assault on Palestine after October 7th. She continued to draw the connections of how oppression multiplies disabilities amongst marginalized people, leaving disabled people to die first. She asked Allie to contribute an essay calling on the disabled community to act in solidarity with Palestinians and featured an old drawing by Kalyn for the piece. [3] More recently, she was spotted wheat-pasting Disabled Rage graphics around the streets of San Francisco. [4]

Alice’s impact and legacy on us is too big to fathom, but sharing our relationships with her comes easily. She always practiced crip time, that circled around joy, pleasure, pain, grief, and all of our humanness - as she did in her writings. In fact, just a week before her passing, Alice hosted a small dinner for Allie and one of Alice’s closest friends, Abby. The three of them relished being together in Alice’s warm, loving home. Despite Alice losing her ability to physically eat solid foods and speak vocally [5], Alice continued to host the most delicious meals, finding joy in creating new recipes and sharing intimate connections with those close to her. She was known for sending silly postcards, stickers, texts, and yummy treats at just the right times when you needed them most. 

Kalyn called Alice in for most big art projects as a contributor, and when Kalyn needed the extra push to publish her very disabled freak art. Whether it was sampling Alice’s ventilator and her proud phrases in the Meow Wolf installation, or recording her lipping along to a script at the recent Denver Art Museum takeover, there was nothing like Alice’s legendary features. Kalyn’s band, Wheelchair Sports Camp’s music was featured as Alice’s Disability Visibility podcast theme song, and somehow Kalyn got Alice featured on some original songs. 

Alice introduced Allie and Kalyn to one of our favorite shows, Big Mouth, after she was animated to play and voice a vulgar version of herself in season 2 of the Human Resources spin-off. Alice ultimately reconnected Allie and Kalyn at a virtual event titled Disability Pleasure [6] with Adrienne Maree Brown in 2021. She was such a fierce supporter of our newfound long-distance lovership, for which we will always be grateful and feel her cheering us on. 

We are forever changed by Alice’s work, humor, radical honesty, and careful love and friendship. We are left with no choice but to honor her by sharing meals and deep, intimate conversations amongst the community because when we are connected, we are so much less alone in the fight for a future of life and liberation. We need each other. 

So as we come together, let’s ask ourselves and each other…

• How can you/we practice adaptation within your/our changing body/ies?
• What does it mean/how can it feel to straddle between life and death, grief and love? 
• How can we connect the ways we adapt within ourselves to surviving and adapting to our burning planet? 
• How will disabled wisdom lead us into a sustainable, liberatory future?
• Have you been impacted by Alice Wong’s work? If so, share and revel in her oracle brilliance. 
• In what ways do you honor your grief and/or connect to your ancestors? 
• What brings you joy and pleasure amidst grief and loss? 
• Alice was/is a storyteller. Alice told and shared stories that no one else would tell, speaking truths that threatened the status quo. Share a story about a time you or someone you know spoke out for justice even when it was going against the grain. 

As you contemplate these questions, reflect on the meaning of crip and crip time through these quotes.

“To crip something is to bend, compress, twist, subvert, and imbue disabled wisdom into systems, institutions, and cultures.” - Alice Wong [5]

“Crip time is broken time,” Dr. Ellen Samuels writes in Six Ways of Looking at Crip Time [7]. “It requires us to break in our bodies and minds to new rhythms, new patterns of thinking and feeling and moving through the world. It forces us to take breaks, even when we don't want to, even when we want to keep going, to move ahead. It insists that we listen to our bodyminds so closely, so attentively, in a culture that tells us to divide the two and push the body away from us while also pushing it beyond its limits. Crip time means listening to the broken languages of our bodies, translating them, honoring their words.” She goes on to explain, “Crip time is time travel. Disability and illness have the power to extract us from linear, progressive time with its normative life stages and cast us into a wormhole of backward and forward acceleration, jerky stops and starts, tedious intervals and abrupt endings. Some of us contend with the impairments of old age while still young; some of us are treated like children no matter how old we get.”

“​​Adaptation is one constant in my chaotic, disabled life.” - Alice Wong [5]