My career advocating for people with disabilities began as a child, facing my mother across our dining room table. After supper, my mom would spread everything out on that table: manila envelopes, stamps, and freshly printed pages. I would sit across from her, stapling together the newsletter for the CCHS Family Network, the advocacy group she founded for people with Congenital Central Hypoventilation Syndrome — a rare, lifelong disorder I was born with — and their families.

I didn’t understand advocacy yet. I understood that it mattered to her, understood that we were doing this work for people who looked like me, who breathed through a hole in their neck. And that was enough to launch me into a lifetime of disability advocacy and leadership.

I joined the board of the CCHS Family Network in 2015. I left in 2021 to go deeper into Philadelphia civics. Today, I chair the Mayor’s Commission on People with Disabilities, sit on the steering committee of Transit Forward Philadelphia and serve on the board of Disability Pride Pennsylvania. Through my work, I’ve become immersed in a city that is full of Disabled leaders doing extraordinary things — while quietly burning through them. This is an issue we can and must solve.

A landmark retires, and a question hangs in the air

On June 1, the nonprofit Liberty Resources announced that Tom Earle had retired as CEO after more than two decades running Philadelphia’s Center for Independent Living. Liberty helps Disabled people transition out of nursing homes and back into their own homes, learn independent living skills, engage in peer support groups, and get information and referrals.

Until late May, Liberty had provided home care services also. When Philadelphia and Pennsylvania fall short on accessibility, Liberty staff are often on the front lines lobbying for funding and legislation. Tom has spent over three decades in the Independent Living movement. “His influence can be seen in the lives changed, the barriers removed, the communities strengthened, and the generations of advocates he helped inspire,” the organization wrote.

When we make leadership accessible, we also make it sustainable.

I served on a panel with Tom once. We weren’t close. But his departure landed heavily: a statement, a grateful nod to legacy, and then the unspoken question. Who carries these massive responsibilities now?

Can we build a Philadelphia that can answer that question? That’s what I want to talk about.

We are not hard to find. We are hard to keep.

Roughly 17 percent of Philadelphia adults live with a disability. We are nearly one in five of your neighbors. We’re on the 47 or the Paoli line. We sit next to you at the civic association meeting. And yet, according to Candid’s 2024 State of Diversity in the U.S. Nonprofit Sector report, only 10 percent of nonprofit CEOs report having a disability — a share that shrinks to 3 percent at the largest organizations, down from 20 percent at the smallest.

We are not hard to find. We are hard to keep.

There’s a tax on Disabled civic leadership that never makes it onto an agenda. It’s invisible, cumulative, and it lands differently for each of us.

The cost of “we support you” without the follow-through

I’ve watched this play out on boards I’ve served on. An officer discloses a disability diagnosis. Colleagues respond with genuine warmth: supportive comments, an understanding nod. Then that same officer needs more flexibility around meeting times or can’t keep pace with a packed agenda in the way they once did. Slowly, the tone shifts. Other board members may question their dedication. Nobody frames it as retaliation. Nobody has to. The exit is already built into how the room runs.

When I was board president of Young Involved Philadelphia, I did what I suspect a lot of Disabled leaders do: I planned for my own limits before anyone asked me to. I quietly built a small network of other Disabled civic leaders I could lean on — for when I missed a word in fast-moving meetings, or when I misunderstood someone’s tone during spoken communication. Setting up my own supports was another leadership cost that my non-Disabled colleagues never needed to plan for.

Good plan. Bad timing: By the time I needed that network, most of them had already burned out.

Not from lack of commitment. Civic leadership, as currently built, runs on assumptions about how we move, process, and work. For many Disabled leaders, those assumptions don’t hold. Meetings in venues without working elevators aren’t accessible. Verbal agendas aren’t accessible. Notes that may or may not get distributed aren’t accessible. Dense email chains aren’t accessible. Fast rooms that reward whoever can hold the floor longest are — you guessed it — not accessible.

But when we make leadership accessible, we also make it sustainable.

We don’t lead despite our disabilities. A lot of us lead because of them.

I’ll say it: Disabled people make good project managers! Disabled civic leaders don’t succeed in spite of our disabilities. A lot of us succeed, at least partially, because of them.

In every one of the rooms I sit in in my various roles as a civic leader, Disabled people bring something no governance curriculum teaches: a lived fluency in designing for the whole group rather than the default majority. When you’ve spent your life navigating systems that weren’t built with you in mind, you learn to ask what people need before assuming you already know. You check whether the process is working before you push forward on the outcome.

That’s just good governance. We’ve been practicing it our whole lives.

Some Philadelphia orgs are already figuring this out

Transit Forward Philadelphia has made accessibility a structural presence in their advocacy platform. Wheelchair users lead rallies, run events, and hold real authority. The coalition now runs accessibility audits at SEPTA bus stops, turning the everyday experience of Disabled riders into concrete data the city and SEPTA can act on.

Philadelphia should be tracking how many Disabled people actually serve on nonprofit boards, lead civic organizations, and sit in the rooms where decisions get made. You can’t fix a gap you’re not measuring.

Disability Pride Pennsylvania‘s monthly Coffee Chats operate on a smaller scale, but matter just as much: low-barrier, genuinely accessible gatherings where leaders and service providers in the disability world show up as themselves, share resources, and build the kind of peer support that actually sustains people across years of hard work.

What real support actually looks like

Many work sectors don’t know their own disability numbers. They aren’t collecting that data and people usually aren’t disclosing it. But to fix that data problem you must address the culture problem. When disclosure feels risky and accommodation feels too daring, people learn to hide what they need. We’ll wear ourselves down trying to keep up until we can’t. More than just tracking our voting numbers, Philadelphia should be tracking how many Disabled people actually serve on nonprofit boards, lead civic organizations, and sit in the rooms where decisions get made. You can’t fix a gap you’re not measuring.

Accessibility closes that gap. Accessibility looks like meeting notes that are complete and distributed before the next meeting. Recordings with captions for people who couldn’t make it live. Written and verbal input which is weighted equally. We can ask one question at onboarding, and not after six months of quiet struggle: How do you communicate best?

This is also just what good governance looks like. Groups that build for accessibility are the groups that retain people and distribute leadership instead of concentrating it in one indispensable person. The ones that don’t are the ones writing transition statements every few months, wondering why their bench is empty.

Inaccessibility, like other forms of exclusion, is especially dangerous when it’s quiet. Accessibility and democracy are the same promise, really: that you don’t have to earn your way into the room. A ramp and a ballot box do the same job: They decide whether participation is a right or a reward for showing up. Making both accessible takes the same move: doing the work before anyone has to ask.

Building the table

Disabled leaders have given decades to this city and inspired generations of advocates behind them. Philadelphia should honor that by making sure the next generation doesn’t have to choose between serving this city and keeping their health.

I got my start at a dining room table after dinnertime, stapling newsletters for people who looked like me and breathed through a hole in their neck. I always remembered what that felt like. I’ve spent the years since building that table here, in this city, alongside active organizations and remarkable people.

Philadelphia’s Disabled community is already showing up — in boardrooms and at ballot boxes, on SEPTA platforms and the steps of City Hall — even when inaccessibility makes it harder than it needs to be. We’re not waiting for an invitation to lead. We’re building the table.

Will you help us carry it?

Nico Meyering, MPA, is Chairman of the Philadelphia Mayor’s Commission on People with Disabilities, VP of Growth & Partnerships at Net Impact Philadelphia, and a board member of Disability Pride Pennsylvania. He is a 2026 Civic Tech Institute Scholar, a 2026 Climatebase Fellow and he served as the 2025 Board President of Young Involved Philadelphia.

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SOLUTIONS FOR DISABLED PHILADELPHIANS