October is National Disability Employment Awareness Month. Based on the census, roughly 8.6 million disabled people work, but 11.2 million are not in the labor force.
However, researchers say common methods used to measure disability may leave many people out of official statistics.
Sociologist Scott Landes of Syracuse University and Johns Hopkins researcher Bonnie Swenor explain how limited survey questions can miss people with chronic health conditions or other disabilities, impacting how resources and policies are shaped. Landes and Swenor started the Disability Health Equity Research Network.
TRANSCRIPT:
Emyle Watkins: Hi, I'm Emyle Watkins, and this is the Disabilities Beat.
Today kicks off National Disability Employment Awareness Month. Based on the census, roughly 8.6 million disabled people work, but 11.2 million are not in the labor force. As we kick off this month, I know these types of statistics will be all over social media, but it reminds me of a conversation I had with researchers earlier in September. How do we really know how many disabled people are out there? How do we know what disabled people are doing? How do we know what impacts disabled people's lives statistically?
Scott Landes: The concerns and issues that we have with disability measurement are global at this point in time.
Emyle Watkins: Sociologist Scott Landes from Syracuse University.
Scott Landes: And that's because in the majority of cases, and especially here in the United States, we measure disability almost solely by whether a person has a functional limitation.
Emyle Watkins: Landes is a disabled researcher who co-founded the Disability Health Equity Research Network. The network focuses on issues impacting research on disability as well as the promotion of work by disabled researchers.
One of the big focuses of the network is disability data equity. And as we roll into Disability Employment Awareness Month, the conversation around how disability is measured is an important one.
Scott Landes: We actually even hone in more and say, "Okay, does a person have one of six functional limitations? Do they have difficulty with their vision, with their hearing, with their cognition, with their mobility, with their self-care, or with ..." Sometimes people use communication, others will use independent living skills. And so what we say is, if you have one of these specific six functional limitations, you're disabled. But if you don't have one of these limitations, you're not. That's what we do in a lot of our surveys.
Well, this misses a lot of disabled people for multiple reasons. One is there are some disabled people who have functional limitations not among those six. And so maybe they've got one related to a cognitive disability or like an intellectual developmental disability or a mental health disability. A large population that is really missed are people that have physical health disabilities. They've got diabetes, they've got cancer, but they don't involve one of these six limitations.
It misses people who have intermittent disabilities. So you're taking the survey and you've got multiple sclerosis, but you're in a time of kind of remission and you're doing pretty good, and you're like, "Yeah, I'm getting along pretty well." And so you mark that, "I don't have any limitations." Whereas if you take it when you're having a flare-up, maybe you've got some type of mobility limitation.
And then the third group it really misses are folks who are disabled but don't have any type of functional limitation. And this is a larger population than we think about, especially if we think about bodily differences or things like facial disfigurement that may not involve functional limitations.
And so the big concern we have is, yes, we know that based upon these limited measures of limitations, there's about a quarter of the U.S. population that is disabled, but the question becomes, if we really measure disability accurately, inclusive of people without functional limitations that are still disabled, what would that be? Obviously, it'd be more than 27%.
Emyle Watkins: Data equity is at the core of many issues the disability community faces, because if we don't know how many disabled people there are or what issues are impacting them, it's hard to build and allocate the correct and best resources.
Landes and his network co-founder, Bonnie Swenor from Johns Hopkins University, explain.
Bonnie Swenor: 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. So disability data equity is all of that for disabled people, for the disability community, and with data specifically about us and our community.
Scott Landes: There's a paper that Bonnie put out with Nick Reed and Lisa Meeks that 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. 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 like Bonnie talks about, because we don't know. If we only think there's five disabled people in the world, are we going to pay as much attention to this population compared to realizing that, no, it's, what Bonnie, 27% of the U.S. population?
And so being able to count people accurately matters in order to marshal the resources necessary to provide supports and services to populations that need it.
Emyle Watkins: You can listen to the Disabilities Beat segment on demand, view a transcript and plain language description for every episode on our website at btpm.org.
I'm Emyle Watkins. Thanks for listening.
