Next week, a virtual conference co-hosted by Syracuse University will focus on how countries, programs and researchers measure disability and how that data impacts disabled peoples’ lives.
“This conference is really all about thinking on a global scale of what's happening in the field of disability, health equity, all around the world. It feels like the right moment to do that,” said Bonnielin "Bonnie" Swenor, the founder of John Hopkins University’s Disability Health Research Center.
Swenor is also a co-founder of DHERN, or the Disability Health Equity Research Network. DHERN is focusing its annual conference on Tuesday on making data more equitable.
Swenor and fellow co-founder, sociologist Scott Landes from Syracuse University, point out that data collection has often left out disabled people in certain cases, and has failed to put disabled researchers at the helm of decision making.
“Within every country that we're [or] you're working in, how do you create questions attentive to the cultural dynamics in that country that allow people to report their disability in such a way that is true to their self-description?,” said Landes. “We're trying to start the process here in the U.S., like we said, we've been concerned that this has not been led by disabled people in the past.”
Landes points out a paper written by Swenor and other researchers as underscoring the issue.
“The title to me just sums it up. Where they said, ‘who counts depends on who is counted.’ And so with data, we count people,” Landes said. “You know, how many people have this characteristic or that characteristic? And unless people are counted accurately, we can't do disability data equity or disability data justice.”
Swenor said the idea of “disability data equity” is about recognizing how accurate data can make a difference in people’s lives.
“Disability data equity is all about understanding that data are powerful tools, recognizing that data is not neutral, and data equity, in and of itself, is the practice of using data mindfully and purposefully to promote fairness, justice and human rights,” said Swenor. “So disability data equity is all of that for disabled people, for the disability community, and with data specifically about us and our community.”
The conference — which runs from 10 a.m. to 2 p.m. on September 16 via Zoom — features sessions such as “Advancing Global Disability Data Equity,” “How Data informs Global Disability Rights,” and “Participation and Disability, Global Development, and Systems Change.” Swenor said before the sessions attendees will hear about an exciting development.
“Our attendees could expect to learn from colleagues in the World Health Organization to discuss a new initiative on disability health equity,” said Swenor.
The conference is free and open to anyone with an interest in attending. Landes encourages anyone to join them and to start asking critical questions about disability measurements in their everyday life, too.
“The reality is we, as disabled people, know we're getting measured all the time, every part of our life, whether we go to school, we go to [a] job, we go to the doctor, we're getting measured either informally by others in society or formally by [the] medical community, whoever,” said Landes. “And what we're saying is, anytime that that's occurring, ask questions.”
