Judy Heumann 1947-2023
May her memory be a blessing!
The Pac Rim conference kicked off yesterday with a discussion on disability studies. Later Judy Heumann was scheduled to speak. She died while we were talking about the future of disability studies—a future we might not now have without her. Judy struggled with the vocabulary of disability studies. She wanted everyone to use plainer language and of course, that too is a subject for debate in disability studies. Disability studies, particularly “critical” disability studies, can intentionally underpin the nonacademic global disability rights and justice movements. Our day pondering the future of disability studies left me affirming that not everything about disability is disability studies, and that a disability studies perspective is creating new social theory, sharper problem definition, and better research methods that can contribute to the study of topics other than disability. I was looking forward to continuing my debate with Judy. I will have that debate about the utility and problems of academic language representing social movements with my students in Judy’s honor and I hope I can do justice to her perspective. No disability studies scholar’s death will be announced within moments on NPR.
Now ask me how I feel about all these deaths—from Irv Zola, to Ed Roberts, to Linda Gonzalez, to Neil Marcus, to Hale Zukas, to Judy. I am mad and sad and determined to be more comfortable in study and advocacy and to blend them to create a diaspora of disability studies’ best ideas.
How do we honor Judy? We need to take both individual and collective steps to us all “Being Heumann.” When we meet in twos and threes we need to develop three or four opinions, after all, Judy was proudly Jewish.
We can also honor Judy by being more intentionally and more carefully international. Dial back to her role in the trio with Ed and Joan Leon founding WID. The “W” is “World.” While the anthropologist in me looks to see what “disability” means as a concept in other cultures, I do have Judy’s voice in the back of my head saying, “So what? What do we do?”
I will treasure that not-so-small voice and remember watching her in corners and hallways having intense one on one conversations with power while the rest of us danced.
About the Author
Devva Kasnitz trained as a cultural geographer at Clark University and then as a medical anthropologist at The University of Michigan, with postdoctoral work at Northwestern University and at the University of California, San Francisco in health policy and disability in urban and medical anthropology. She has worked in disability studies since 1979 while still maintaining an interest in ethnicity and immigration. Kasnitz was on the founding boards of: the Society for Disability Studies, the Anthropology and Disability Research Interest Group of the Society for Medical Anthropology, and the Association of Programs for Rural Independent Living, and has mentored a generation of disability studies scholars in the US, Australia, and Guatemala. She has also directed research at the World Institute on Disability and the Association of Higher Education and Disability. Currently, Kasnitz is a professor at the CUNY SPS MA in Disability Studies and MS in Disability Services in Higher Education programs. In January 2020 she returned to be the Kate Welling Distinguished Scholar in Disability Studies for the second time. Kasnitz has received research funding from NIH, NIMH, NIDRR, the American Anthropological Association, The Felton Bequest, and Sprint Foundation, and was a 2000 NIDRR Switzer Fellow and 2014 recipient of the Society for Disability Studies, Senior Scholar Award. With her colleagues in Human Computer Interaction, she received awards for the best paper of the year twice and best paper for the decade for bringing disability studies to the American Computing Machines. Additionally, she was the director of a California independent living center and is currently their Vice President, and she represents disabled citizens on the California State Telecommunications Access for the Deaf and Disabled Administrative Committee. Her current work focuses on speech impairment and the politics of social participation, on disability services in higher education, and following Judy Heumann’s legacy, on a national directory of disability museums and archives. Kasnitz lives in Northern California, behind the redwood curtain, surrounded by her family—most importantly one 19-year-old stepson and 3 Moroccan girls aged 19, 15, and 14—and by spinning wheels, looms, baskets full of fleece, yarn, and raw fiber waiting to become cloth.