The Humanities Institute at Stony Brook hosted Alice Wong, a disability rights activist, to speak about issues affecting disabled communities like the climate crisis, discrimination and media representation and her work as the founder of social justice website Disability Visibility Project on Oct. 7 over Zoom.
Wong’s lecture was part of the Pandemic Narratives Initiative and the Pressing Matters lecture series hosted by Vice President for Equity and Inclusion and Chief Diversity Officer Judith B. Clarke. The series seeks to address issues that have acquired wide public visibility in the current moment.
Lisa Diedrich, professor and department chair of women’s, gender and sexuality studies, introduced Wong to students and members of the wider community and presented quotes from “Disability Visibility: First-Person Stories from the Twenty-First Century,” edited by Wong.
“Disability is sociopolitical, cultural, and biological. Being visible and claiming a disabled identity brings risks as much as it brings pride,” Wong writes in the introduction to the book. The lecture was made accessible through a live transcript and the hosts introduced themselves with physical self-descriptions.
“We decided we wanted to bring in speakers who have done pathbreaking work in imagining new ways of telling stories,” Diedrich said about the inspiration for inviting Wong.
According to Diedrich, a cross-campus, interdisciplinary group began meeting at Stony Brook in the spring for wide-ranging conversations under the rubric Critical Health Studies. The group consisted of many individuals, including herself, Karen Lloyd, an associate professor of art history, Nancy Tomes, distinguished professor of history and Andrew Flescher, professor of public health and English as the co-organizers. They received a seed grant from the College of Arts and Sciences for a new program called “Pandemic Narratives: Interdisciplinary Tools and Uses for Critical Health Studies,” bringing together scholars from both East and West campuses who study the impact of illness on society.
Using the tools of narrative medicine, the intersections of illness and disability politics with race, class, gender and sexuality are studied in a project positioning global pandemics as objects of historical and contemporary concern.
The discussion touched on the idea of the visibility and risks involved in claiming disabled identity, in relation to the requirements on university campuses to disclose disability in order to receive disability accommodations. Wong highlighted the importance of challenging and interrogating the structures that uphold the idea that disability accommodations are special treatment.
“The hierarchies of every big institution — what if we gave every staff, faculty and students accommodations without guilt, without fear?” Wong said.
Also, the impact of the climate crisis on disabled individuals and their resistance to being considered “high risk” and acceptable losses is intensified at Wong’s San Francisco home, which is impacted by wildfire seasons and power companies’ cuts as well as the ongoing COVID-19 pandemic.
“Early in the pandemic there was a shortage of ventilators … scarcity is something that can be prevented,” Wong said. “Scarcity is a scam. Scarcity forces us to be in position with one another, to create these hierarchies. They don’t want equality; they don’t want to give up that power.”
Participating in the intersectional climate justice movement means understanding the importance of mutual aid and leadership by the most marginalized members of society, who are able to “raise everyone up,” according to Wong. Disabled individuals face a frequent lack of planning from authorities during crises, leaving their lives at risk from the lack of distributed medical supplies and generators.
“I’m not shy about depicting myself as vulnerable. I am actually visually vulnerable, and I don’t think there’s anything wrong with that; it’s very visible. I think it helps creativity and structural resistance,” Wong said. “When you think about wildfires and evacuations very often, for the most part consistently the disability issue is that time and time again during major emergencies and disasters, us disabled people have to be rescued. We’re the ones who don’t get access to evacuation, the air runs out, all kinds of things. But we didn’t ask to be rescued.”
In order to combat preconceived notions of the disabled and to build communities, Wong became the founder and director of the Disability Visibility Project. She elaborated on the importance of using online resources as a continuation of historical resistance in order to creatively define and share one’s experiences during difficult times. The Disability Visibility Project was created in 2014 as an online community partnered with StoryCorps dedicated to creating, sharing and amplifying disability media and culture.
“The history of disabled queer and trans people has continually been one of creative problem-solving within a society that refuses to center our needs,” Wong said.
Wong is also the host and co-producer of the Disability Visibility podcast and co-partner in a number of collaborations such as #CripLit, #CripTheVote, Disabled Writers and Access Is Love. She has continually written throughout the pandemic about the enormous and often discriminatory impact of the pandemic on disabled people on topics such as healthcare rationing, triage guidelines, congregant settings and voting accessibility. She balances the success of editing the anthology “Disability Visibility” and appointment to the National Council on Disability from 2013 to 2015 by former President Barack Obama, equally with a large Twitter presence of over 50,000 followers.
“[Wong’s] 2018 episode with W. Kamau Bell was such a pivotal piece of media for my parents in understanding the impact of disability on my life,” Ramneek Kaur, a junior biology major said.
The importance of media representation continues to be an important focus of disability visibility. Additionally, online spaces and other technological developments are invaluable for artistic expression as many disabled individuals use technology such as a tablet, mouse or keyboard to connect by sharing stories. However, Wong believes there is a disabled population that continues to be socially isolated and rejected, highlighting the importance of social media in finding support groups and advocates.
“Visibility is really not just about [isolation and rejection] but about being comfortable, being who you really are everywhere,” Wong said. “It also takes the people around you to work a bit and want it. So I see all of this as a collective process. Ultimately the aging process will make everyone disabled anyway.”
As the lecture ended with a comparison of several portraits of Wong, the process of collaboration through storytelling and art brought a fresh perspective to campus about disability and creative resistance.
Correction, 11/07/21 1:58 p.m.: At her talk, Wong said “Scarcity is a scam.” A previous quote incorrectly stated that Wong had said “Scarcity is the stamp.”