Three Ways to Show Up for Disability Justice 

With disability rights under attack, movement leaders are meeting the moment by building better systems rooted in equity, inclusion, and justice for all.

The challenges to health equity right now are fierce and daunting. As the 60th anniversary of Medicaid—the country’s largest health insurance program serving more than 70 million people—approaches, Congress is pursuing deep cuts to the program that threaten the health and autonomy of millions, including people with disabilities. At the same time, attacks on reproductive rights and health are compounding barriers to care for those already navigating multiple forms of discrimination.

While this moment seems bleak, history reminds us that courageous, collective action can create lasting change. Rosa Parks embodied this in 1955 when her resistance fueled the civil rights movement and laid groundwork for other social justice movements including disability rights. The late Judy Heumann, who is widely regarded as the mother of today’s vibrant disability rights movement, acknowledged this connection. In her memoir, she wrote: “We who had come of age under the influence of Rosa Parks…knew we were a band of underdogs fighting powerful institutions. If we didn’t speak as one voice, we’d never win.”

Heumann showed steely resolve in 1975 when she refused to deplane after flight attendants insisted that she could not fly unaccompanied because she used a wheelchair. Police forcibly removed her. Her defiant spirit ultimately led to a historic sit-in with a community of disabled activists, including Black activists like Brad Lomax. The collective outcry successfully pressured the government to enforce Section 504 of the Rehabilitation Act, the first federal law to prohibit discrimination based on disability. And it paved the way for the Americans with Disabilities Act (ADA).

Heumann’s legacy reminds us of the power we hold to challenge inequitable laws and reshape systems. Today, disability rights leaders are continuing the fight for justice. They are dismantling barriers that compound harms from ableism, racism, sexism, and economic injustice. They are demanding better data, creating powerful policy tools, and pushing for digital accessibility so that we all have a fair and just opportunity to thrive. 

Demand better data to drive solutions.

Javier Robles has taken Heumann’s charge to heart. As the Rutgers University professor and longtime disability rights advocate puts it, “we can honor her legacy by continuing to fight to abolish ableism. That begins with amplifying the voices of people with disabilities and ensuring they are front and center in shaping solutions.”

He is proud to have served on RWJF’s National Commission to Transform Public Health Data Systems because he recognizes that advancing disability rights requires data and evidence to inform policy. For too long, government agencies, academic institutions, philanthropy, and others have overlooked the need for consistent data about disability to inform laws and policies that can improve access to education, transit, housing, employment opportunities, healthcare, and more. The lack of disaggregated data—not just by race, gender, age, immigration status, and income—but also by disability, is a primary reason for a lack of policies that advance equity and inclusion.

“If I, as a disabled person, have access to the right data,” he says, “I can bring that to a lawmaker and ask: ‘Why aren’t you addressing this?’”

Robles co-authored a recent article in Health Affairs that stresses the importance of improving disability data collection at the state level, lauds Oregon for leading the way, and provides recommendations to help other states do the same. He urges everyone to advocate for better data and for the disability agenda, which he notes, is the Latino agenda, the Black agenda, the LGBTQIA+ agenda, the immigration agenda, and more.

Policies shouldn’t be a puzzle. Use tools that make them accessible.

While data is critical, people must also have a voice in shaping laws and policies that affect their lives. But it can be difficult to make sense of the dense, jargon-laden bills that state and federal legislators are considering. For many people with disabilities and others, this barrier prevents participation in civic life.

To break down this barrier and make the policymaking process accessible to all, New Disabled South has created a groundbreaking Plain Language Policy Dashboard. It translates pending legislation in 14 southern states into language that everyone, including the most marginalized disabled people, can understand so they can make their views and voices heard. The dashboard sorts pending legislation into six broad topics: accessibility, civil rights, criminalization, poverty and care, democracy, and education. Some are disability-specific or disproportionately affect people with disabilities, while others affect everyone.

As someone with cerebral palsy, Dom Kelly, co-founder, president and CEO of New Disabled South, recognizes the urgent need for policies that remove barriers to education, employment, healthcare, transportation, housing, and more. The Plain Language Policy Dashboard and its new counterpart, New Disabled South’s Plain Language Ballot Measure Tool, are helping do just that. They are advancing the organization’s goals to improve the lives of disabled people and build a strong disability justice movement, so more of us will have the chance to live our healthiest, most successful lives. RWJF, too, is embracing plain language in its communications.

Remove digital barriers—if it’s not accessible, it’s not inclusive.

Digital accessibility is personal for John Samuel, who was in college when doctors diagnosed him with retinitis pigmentosa, which robbed him of his sight. Despite his strong skillset and qualifications, he discovered ableism embedded in too many inaccessible workplaces.

In the years since, he has been on a mission to remove structural barriers that prevent disabled people from thriving and prevent workplaces from reaching their full potential. As co-founder and CEO at Ablr, he is helping build a world in which people with disabilities have equal access to digital information. Ablr helps organizations, including RWJF, enhance inclusivity by making their digital content accessible to individuals of all abilities.

“I’ve made my life’s work tearing down these barriers so that we all have a fair and just opportunity to thrive,” Samuel says. In our online world, everyone can help unleash the potential of people with disabilities but making digital content accessible.

Building an Inclusive Future Together

The disability community has always led movements for justice. Its north star has long been, “nothing about us without us,” and Javier Robles, Dom Kelly, and John Samuel are paving the way to a more inclusive, accessible, and equitable future for all. Their work offers hope and shows that we all have a role to play in demanding progress. Partnering with and amplifying the voices of people at the intersections of multiple identities and paves the way to a future where health isn’t a privilege for a few, but a right for us all.