SAN FRANCISCO — Something as simple as getting a Covid-19 test can be complicated for Joshua Miele, a principal accessibility researcher at Amazon. Miele is blind. When he got his rapid test results at the STAT Health Tech Summit in San Francisco on Tuesday morning, the clinician handed a sheet of paper with his result not to Miele, but to a sighted STAT reporter standing beside him.
That is just one example of the erasure people with disabilities face when seeking health care, especially when that care is unrelated to disability, he later told the audience at the Commonwealth Club.
“Health care and health tech are really lacking in their thinking about disability inclusion,” Miele said. “I think of the medical system as one of the most ableist institutions we still have.”
In a room full of health technology executives, researchers, and others in the field, Miele described his difficulty in accessing basic tools because they are not created with a diversity of users — people with different needs — in mind. “Why is it so hard to buy a talking glucometer … a talking blood pressure cuff?” he asked.
A medical paradigm that places clinicians at the top and patients at the bottom often considers those with disabilities to be a fringe group instead of as individuals with agency who are accessing services, Miele said. It takes constant self-advocacy to navigate systems that consider people with disabilities as inferior or incapable of making decisions for themselves, he said. It’s a quality Miele sharpened during his time as an undergraduate at the University of California, Berkeley, in the late 1980s, where he figured out ways to navigate the campus and cut through discriminatory bureaucracy with a like-minded community of blind students in a study suite they called “The Cave.”
Barriers to basic activities — such as using computer operating systems with then-new visual interfaces requiring a mouse — are part of what drove Miele to pivot from his original goal of becoming a NASA scientist to becoming an inventor of accessible tools, an educator, and an advocate for equity. His extensive resume includes multiple tools he created for himself to be able to get things done, from navigating a new city to texting with a virtual braille keyboard, to using data visualization software and listening to YouTube videos.
To Miele, his recognition as a 2021 MacArthur “genius” signaled that mainstream conversations about equity are starting to include disability — as they should. With the financial award that comes with his fellowship, Miele said he will start a nonprofit, the Center for Accessibility and Open Source, to steer money into open-source projects, which are underfunded but vital tools for many people with disabilities.
Although the history of each marginalized group is unique, disability cuts across race, gender, sexuality, religion, and all the other labels, he said: “Disability is hugely intersectional … disability is one of the few groups anyone can join at any time.”