I have spent years in community with disabled leaders who are shaping policy, running organizations, and driving systems change across every sector of civic life.
The question I keep coming back to is not whether disability belongs in Chicago's equity conversations. It does. Disabled people are living full lives, building careers, raising families, and leading institutions in this city every single day. That is not a revelation to anyone doing this work.
But knowing something to be true is not the same as having the evidence to make systems move. Institutional funders and policymakers don't act on what they haven't measured. And for too long, nobody has measured what disabled people in Chicago actually experience.
That is what Disability Lead is setting out to change.
What We're Building
Disability Lead is launching a first-of-its-kind public opinion research initiative: Reimagining Disability's Place in Chicago's Equity, Leadership, and Investment.
Our goal is to work with NORC at the University of Chicago and its ChicagoSpeaks platform, we will conduct a citywide public opinion poll focused on how disability shows up in daily life. The poll will examine public attitudes, perceptions of stigma, understanding of disability as an identity, and the barriers people with disabilities face across transit, work, health care, and civic participation.
But this is not just a data collection project. We are building something with three connected parts: research grounded in the lived experience of disabled Chicagoans, a dissemination strategy designed to move that research into the hands of funders and policymakers, and a citywide convening that brings those two worlds into direct conversation.
Who Is Shaping This Work
From the start, we wanted this research to be shaped by people who know the Chicago disability landscape from the inside. We have assembled an advisory group of disabled leaders who bring direct experience across nonprofit leadership, government, policy, and civic systems.
Our advisory group includes
• Karen Tamley, Access Living
• Rahnee Patrick, State of Illinois, Division of Rehabilitation Services,
• Rachel Arfa, City of Chicago, Mayor’s Office for People with Disabilities (MOPD)
• Lauren Schrero, Equip for Equality
• Joyce Ozeh, Disabilities Fund
• Hilesh Patel, HPN Consulting
Together, they are helping us design a polling instrument that reflects what actually matters, stress-test our narrative framing, and ensure that the research we produce is both rigorous and rooted in real experience.
I am deeply grateful to each of them for bringing their expertise, their candor, and their time to this project.
Why This Matters Now
Disability is one of the largest and most diverse communities in this country. More than one in four U.S. adults lives with a disability. And yet philanthropic investment has rarely matched that scale, and disability remains largely absent from the equity conversations where it belongs.
Part of what sustains that gap is a lack of shared data. Funders and policymakers are making decisions about disability without a clear picture of what the public actually believes, what barriers people are experiencing, or how deeply stigma continues to shape who gets resources and who gets left out.
This initiative is designed to close that gap. The polling will surface what public opinion actually looks like. The dissemination will bring those findings to the audiences who can act on them. And the convening will create space for funders and disability organizations to build the kinds of relationships that lead to lasting change.
What Comes Next and How You Can Get Involved
Over the coming months, our advisory group will help finalize the polling instrument, and we will launch the survey through ChicagoSpeaks later this spring. From there, we will move into dissemination and, ultimately, a citywide convening that we hope will be a turning point in how disability is resourced and represented in Chicago.
If you are a funder, a policymaker, or a civic leader who cares about what it means for disability to be truly integrated into Chicago's equity work, I would love to talk. This research is designed to be useful to you, and we are building it with that audience in mind.
We are not asking to be a special interest. We are asking to be part of the conversation. And now we are building the evidence to make that case.