Why We're Polling Chicago About Disability (And Why Past Data Efforts Haven’t Been Enough)
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Most research about disability asks the wrong question.
It asks: what can't you do? How limited are you? Does your diagnosis qualify you for this program or that category?
Disability Lead recently commissioned a literature review from the Phoenix Development Fund, a non-profit that provides pro bono services to small businesses and non-profits, to map what the existing research landscape actually looks like. What they found confirmed a gap we've long observed in our work:
"A lot of current work measures disability mainly through functional limitation or eligibility categories, which is useful for counting people but less useful for understanding disability as identity, representation, or public legitimacy."
That gap isn't just academic. It shapes what gets funded, who gets a seat at the table, and whether disability ever becomes a genuine priority in Chicago's institutions.
The review also laid out what a better study would look like—one that aims to:
"move disability research from a narrow focus on functional limitation and isolated outcomes toward a disability-led framework that centers identity, lived systems access, leadership legitimacy, and practical rights understanding."
That's exactly what Disability Lead is building. Our upcoming citywide poll, conducted in partnership with NORC at the University of Chicago, is a public opinion instrument designed to surface what Chicagoans actually think, believe, and understand about disability in civic life. Questions about attitudes, legitimacy, and knowledge that have barely been measured before, let alone connected to each other.
This literature review is the first milestone in a path to change narratives and ultimately influence better policies and funding decisions for our community. Chicago has needed this for a long time.