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“My name is Tanya Gulliver-Garcia; my pronouns are she her/hers. I am a white, fat woman wearing purple glasses with pink and purple collar-length hair and am wearing a purple shirt. My background is a brown couch with a light green wall.”
This is how the Center for Disaster Philanthropy’s webinar, “Nothing About Us Without Us: Disasters and Disabilities,” began. No assumptions were made that webinar attendees could see the screen or the PowerPoint, so Gulliver-Garcia as moderator, and the panelists, each provided verbal descriptions of themselves and explanations of their text/photos. In addition to live captioning, CDP also provided American Sign Language interpretation for those who are Deaf or Hard-of-Hearing.
The webinar featured three panelists:
- Luis “Vance” Taylor, Chief of the Office of Access and Functional Needs, California Office of Emergency Services
- Scott Cameron, Executive Producer at Sesame Workshop
- Nikki Brown-Booker, program officer for the Disability Inclusion Fund at Borealis Philanthropy
At least 1 in 6 people experience significant disabilities. Persons with disabilities face many health inequities, including stigma, discrimination, poverty, exclusion from education and employment, and barriers faced in the health system itself. Through every stage of a disaster: Mitigation, preparedness, recovery, and response, people with disabilities have been left out of the conversation.
In response to frequent wildfires, California power companies began de-energizing power lines when the humidity was low, wind was high and temperatures were hot, to lower the risk of a power line falling and causing a spark. However, as Taylor noted, “For people with disabilities, which require electricity to power their ventilators, assistive technologies, or other medical equipment, [this] shifts the risk away from ‘I’m going to die from a wildfire’ to ‘I’m going to die because I don’t have power.” In response, Taylor’s office provided the community with extra batteries, evacuation plans, designated community access locations, gas cards, and free transportation to ensure wildfire prevention plans didn’t create additional hazards.
Brown-Booker addresses this problem as a funder by centering disability-led organizations and funding projects with input from people with disabilities at every level. The Disability Inclusion Fund has supported 49 grantees using participatory grantmaking models, including representation from disability inclusion, rights, and justice leaders to inform decisions. Their funding supports organizing, advocacy, and relationship-building to create systems that include disability justice.
To be inclusive, the infrastructure and processes of philanthropy and the nonprofit world must adapt. When Sesame Workshop created Ameera, “a witty, inquisitive 8-year-old Muppet who loves science and uses a wheelchair and forearm crutches due to a spinal injury”, Cameron described bringing in children, early childhood educators, art therapists, play therapists, sign language experts, disability advisors, child psychologists, language experts and advisors in gender equity and inclusion to inform their decisions, and adjusted their decisions based on feedback. This has led to millions of kids seeing themselves in programming worldwide because they were represented in the decision-making process.
What Can Funders Do?
- People with lived experience must be brought to the table. As Taylor said, “People don’t know what they don’t know. It is the responsibility of those with a seat at the table to bring marginalized populations in. It is only then when we’re all together, we start to really see each other.”
- Disability inclusion saves lives, ensuring that community needs are both acknowledged and addressed.
- Fund disability-led organizations. People with disabilities are disproportionately impacted by disasters, a signal that our processes need to change. People with disabilities are experts in their experiences.
Watch the full webinar with visual descriptions and captions.