Disability Lead is building leaders our systems have been missing

You know that moment when someone shares a “simple” fact… and it completely changes how you see the world?

Here’s one:

More than 1 in 4 adults in the U.S. has a disability.

I was completely shocked.

And yet — disabled leaders are still dramatically underrepresented in the rooms where decisions get made.

That’s the gap Disability Lead aims to close.

I recently sat down with Anne Renna, who leads development and partnerships at Disability Lead, to talk about the mission, the momentum, and the real-world impact this organization is creating by doing something that should have been obvious all along:

Put people with disabilities in positions of power and influence.

Anne’s through-line: let the people closest to the issue lead.

Anne has spent her career connecting people to causes rooted in justice, community, and equity. From youth development to violence prevention to disability-led leadership, she’s seen firsthand how systems fail the people they’re meant to serve.

When I asked what connects all that work, she didn’t hesitate.

Anne shared, “It’s about ensuring the work is led by the people closest to the challenges — not just included but truly empowered to shape solutions.”

That’s the kind of sentence you can build an entire strategy around.

So what is Disability Lead?

Disability Lead empowers and connects disabled leaders to positions of influence across the civic, nonprofit, and corporate sectors, because our systems are stronger  when people with disabilities’ voices are included.

This is needed power shifting!

It’s helping talented leaders with disabilities access the same pathways that have long been accessible to other leaders, and ensuring disability is treated as a critical dimension of diversity, equity, and representation.

Anne also shared a point that really stuck with me.

She said, “Disability is the one identity that cuts across every other identity — race, gender, religion, geography, income, you name it. And yet it’s often the one that gets left out when organizations talk about diverse leadership.”

A misconception Anne wants to break — fast

When many people picture disability, they picture a wheelchair.

Anne reminded me that much of disability is invisible, including mental health conditions, chronic illness, MS, and more.

That blind spot shapes everything: hiring, leadership development, accessibility, and philanthropy.

Anne commented, “If you’re someone who wants to make our systems more inclusive, a full range of disability need to be included.   That’s why education and exposure matter, and why Disability Lead’s work is so urgent.”

The story I can’t stop thinking about

Every mission has a story that makes it real.

Anne shared one that does exactly that.

A Disability Lead member, Rahnee Patrick, serves in a senior government leadership role in Illinois’ Department of Rehabilitation Services. During COVID, when vaccine supply was limited and states were deciding who would be prioritized, Rahnee advocated for people with disabilities to be included in the rollout.

That advocacy didn’t just change policy.

It protected lives.

That’s what happens when the decision-maker understands the stakes — personally.

Anne also shared another example of Rahnee’s advocacy: eliminating subminimum wage.

I didn’t know subminimum wage was a thing, it’s shocking!

The long-standing practice allowed employers to pay people with disabilities less than minimum wage.

People with greater medical needs were earning less per hour simply because they were disabled.

It’s the kind of policy that survives when the people most impacted aren’t in the room.

Accessibility isn’t “nice.” It’s basic.

We also talked about something very Chicago: winter.

Getting around the city is hard enough when sidewalks and streets are icy, and even harder if you use a wheelchair, walker, or cane.

Anne took it a step further.

She said, “For many people with disabilities, it’s not an inconvenience. It’s a barrier.”

She referenced disability advocates pushing for the basics, like accessible crosswalks, sidewalks, and infrastructure that make daily life possible.

And here’s the thing: the ADA, signed into law in 1990, was meant to move us toward access, equity, and inclusion.

But laws only go so far if leadership still doesn’t reflect the people being served.

Anne’s fundraising lens: growth and replication

What excites Anne right now is that Disability Lead is in growth mode.

They’re expanding their model into new regions and learning how philanthropy shows up differently in different communities.

They’ve already launched beyond Chicago with a new chapter in the Pittsburgh area, and Anne shared how impressed she’s been.

She commented, “The community there is extremely philanthropic, and I really look forward to working with them.”

Then she shared a bold goal:

Disability Lead aims to be in 10 cities by 2040, the 50th anniversary of the ADA.

Ambitious? Yes.Necessary? Absolutely.

Anne’s personal “why”

I asked Anne how her own lived experience connects to the mission.

Her answer was simple and grounded.

Anne shared, “I’ve seen these challenges firsthand as well as through friends and family. Systems can be so much better, and I have an opportunity to help push change forward.”

What gives Anne hope — and what she wants you to do

My final question was about hope. When you work in systems change, you need it.

Anne shared that what gives her hope is the growing coordination across movements. Disability leadership is connecting with other advocacy efforts, so everyone becomes stronger together.

She shared a powerful example: a Disability Lead member helped embed disability-inclusive advocacy within another major organization — expanding access, elevating disabled voices, and strengthening the movement from the inside out.

That’s the model:

• Expand access to power

• Build power among people with disabilities

• Change systems

• Repeat

  
  

Want to support Disability Lead? Start here.

If this is your first time learning about Disability Lead, here are a few simple ways to engage:

• Expand your conception of leadership to include leaders with disabilities (and challenge your assumptions)

• Share the organization with someone who should know about it

• Give, so your philanthropy can fuel long-term systems change

  
  

Access and equity aren’t side projects; they should be the standard.

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I help nonprofits raise more money through education, coaching, and strategic planning. I also lead high-impact professional development, coaching programs, and retreats for companies of all sizes. If you’re ready to strengthen your fundraising strategy, turn board members into advocates, or build a comprehensive legacy giving program, let’s talk.