Staying True to the Work: Disability Rights & Equity in Action

When organizations face uncertainty, it can be tempting to get distracted by politics, headlines, and competing narratives. Kerstin Sjoberg, Executive Director of Disability Rights Ohio explains that lasting impact comes from staying focused on the mission.

In this episode of the ALC ChangeMakers Podcast, host Jennifer Sconyers sits down with Kerstin to discuss disability rights, advocacy, inclusive leadership, and what it takes to create systemic change while remaining true to your values.

Who is Kerstin Sjoberg?

Kerstin didn't begin her career in disability rights.

After graduating from law school, she worked at a large private law firm and became involved in a landmark Fair Housing Act case concerning access to public water outside Zanesville, Ohio. The case resulted in what was then the largest Fair Housing Act verdict in the nation.

That experience changed everything.

"I think I want to do civil rights work full time. This is what gets me excited these days."

Soon after, an opportunity opened at Disability Rights Ohio. The organization needed someone with federal litigation experience and was willing to teach the disability law side of the work.

Kerstin joined the organization in 2009 as Legal Director and became Executive Director in 2020.

What Does Disability Rights Ohio Do?

At its core, Disability Rights Ohio is an advocacy organization serving people with disabilities across the state.

The organization operates as part of the federally funded Protection and Advocacy System, which was created in the 1970s to provide independent advocacy for people with disabilities.

Their work centers around five key functions:

1. Advocacy

Providing legal assistance, information, and support to people with disabilities.

2. Investigation

Monitoring facilities and investigating allegations of abuse and neglect.

3. Education

Helping individuals understand their rights and available resources.

4. Engagement

Elevating community voices and increasing participation in policy decisions.

5. Review

Monitoring representative payees who manage Social Security benefits to prevent financial exploitation.

Together, these efforts help ensure people with disabilities can live, work, and participate fully in their communities.

How Do You Lead During Uncertainty?

Like many nonprofit organizations, Disability Rights Ohio has faced significant challenges in recent years. Much of the organization’s funding comes from federal grants and discussions around budget cuts and funding freezes create understandable concern.

Rather than retreating, the organization is focused on two priorities:

Educating Policymakers

The team works to help decision-makers understand the impact of disability programs and advocacy services.

Strengthening Community Partnerships

Disability Rights Ohio collaborates closely with disability organizations, advocates, community members, and partners across the state.

The result is a collective effort to demonstrate the value of these programs and the real-world outcomes they create.

As Kerstin explained, effective advocacy isn't just about protecting services, it's about showing how those services help people live independently, contribute to their communities, and access support in the most effective and cost-efficient ways possible.

What Does Inclusive Leadership Look Like?

One of the most powerful themes from this conversation was the organization's commitment to inclusion, not as a trend, but as a foundational principle.

Jennifer reflected on Disability Rights Ohio's highly engaged staff and board and asked how the organization continues to navigate conversations around diversity, equity, and inclusion.

Kerstin's answer was refreshingly straightforward.

"We're really just trying to stay true to that mission and that focus."

For Disability Rights Ohio, equity and inclusion aren't separate initiatives. They're embedded in the work itself.

The disability rights movement has always been about ensuring access, removing barriers, and creating opportunities for people who have historically been excluded.

Rather than getting caught up in debates over terminology, the organization remains focused on outcomes. "We don't make it a separate issue. We're kind of just staying true to the work."

That's a leadership lesson many organizations can learn from.

Why Lived Experience Matters

Perhaps the most important takeaway from this episode is the organization's commitment to being led by the people it serves.

Disability Rights Ohio ensures that people with disabilities have meaningful leadership roles throughout the organization.

That includes:

• A board made up primarily of people with disabilities
• Client-directed advocacy whenever possible
• Community-driven strategic priorities
• Policy initiatives shaped by people with lived experience

This approach reflects a core principle of the disability rights movement:

Nothing About Us Without Us

Rather than speaking for people with disabilities, the organization focuses on creating opportunities for people to speak for themselves.

That philosophy has produced real results. Kerstin shared the example of advocacy efforts around direct care worker wages. After extensive engagement and education efforts, hundreds of people with disabilities and advocates participated in the legislative process.

The outcome?

A historic investment in direct care worker wages. Proof that the process works and brings results to the disability community.

Lessons for Any ChangeMaker

Whether you work in advocacy, nonprofit leadership, government, education, or business, there are valuable lessons in this conversation.

Stay Focused on the Mission - When external pressures increase, return to your purpose.

Elevate the Voices That Matter Most - The people closest to a challenge often have the best solutions.

Build Strong Partnerships - Meaningful change rarely happens alone.

Inclusion Creates Better Decisions - Organizations perform better when diverse perspectives help shape outcomes.

Advocacy Is Action - Change doesn't happen by accident. It happens when people become informed, engaged, and are willing to participate.

How You Can Get Involved

If you'd like to learn more about Disability Rights Ohio and the issues impacting people with disabilities, Kerstin encourages listeners to connect through the organization's educational resources.

Their weekly communications provide updates on advocacy efforts, policy developments, and opportunities for community engagement.

For those interested in becoming more active, Disability Rights Ohio also shares opportunities to testify, submit comments, and participate in public policy discussions affecting people with disabilities across Ohio.

As this conversation demonstrates, meaningful change happens when people show up, share their experiences, and work together toward a common goal.

And sometimes, the most powerful thing a leader can do is make sure others have a seat at the table.

"We really focus on elevating voices and empowering people."

That's what change-making looks like in action.

Connect With Disability Rights Ohio 

Facebook: @DisabilityRightsOhio

Instagram: @disabilityrightsohio 

LinkedIn:  @disability-rights-ohio

Website: https://www.disabilityrightsohio.org/

Listen to Kerstin Sjoberg’s episode on the ALC ChangeMakers Podcast: https://www.jennifersconyers.com/podcasts/alc-changemakers-podcast

About Abundance Leadership Consulting

The ALC ChangeMakers Podcast is brought to you by Abundance Leadership Consulting (ALC), a certified MBE/WBE consulting firm helping nonprofits, foundations, associations, and mission-driven organizations navigate change with confidence.

At ALC, we specialize in strategic planning, leadership development, organizational change management, board governance, facilitation, and nonprofit mergers, acquisitions, and mission continuity planning. Through our proprietary F.A.B.R.I.C.™ Framework - Fairness, Accountability, Belonging, Relationships, Inclusion, and Collaboration - we help organizations strengthen culture, build sustainable systems, and achieve long-term impact.

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