Disability inclusion is ‘missing’ in health care, says researcher

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SAN FRANCISCO — Something as simple as taking a Covid-19 test can be complicated for Joshua Miele, senior 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 next to him. .

This is just one example of the erasure that people with disabilities face when seeking health care, especially when that care is unrelated to the disability, he later told the audience at the Commonwealth Club.

“Health care and health technology are really lacking in their thinking about disability inclusion,” Miele said. “I consider the medical system to be one of the most capable institutions we still have.”

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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 puts clinicians at the top and patients at the bottom often sees people with disabilities as a marginal group rather than individuals with agency who access services, Miele said. It takes constant self-advocacy to navigate systems that view people with disabilities as inferior or incapable of making decisions for themselves, he said. It’s a quality that Miele honed during his undergraduate studies at the University of California, Berkeley in the late 1980s, where he found ways to navigate campus and overcome discriminatory bureaucracy with a community of like-minded blind students in a study. sequel they called “The Cave”.

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Obstacles to core business — like using computer operating systems with new visual interfaces that require a mouse — are part of what drove Miele from his original goal of becoming a NASA scientist to becoming a inventor of accessible tools, an educator and an advocate for fairness. His extensive resume includes several 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 software viewing data and listening to YouTube videos.

For Miele, his recognition as a 2021 MacArthur “genius” signaled that mainstream conversations about equity are beginning to include disability – as they should. With the financial award that accompanies his scholarship, Miele said he would create a non-profit organization, the Center for Accessibility and Open Source, to direct the money to open source projects, which are underfunded tools but vital for many people with disabilities.

While each marginalized group’s story is unique, disability transcends race, gender, sexuality, religion and all other labels, he said: “Disability is extremely intersectional…disability is the one of the few groups that you can join at any time. ”

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