12/29/25 - Activism, organizing, and representation

Good afternoon!

We're back from the holiday break, and into that awkward time between Christmas and New Year's. Today's email includes links on another heartbreaking loss to our disability communities, plus two other articles that together demonstrate three different modes of disability advocacy.

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Disability rights advocate Bob Kafka dead at 79

Alana Wise, National Public Radio - December 27, 2025

"Kafka was an organizer with ADAPT (American Disabled for Attendant Programs Today), a group which advocates for policy change to support people with disabilities ... Mark Johnson, co-founder of ADAPT and a longtime friend of Kafka who confirmed his death, told NPR Kafka's advocacy was as much about changing laws as it was changing lives."

I only knew Bob Kafka slightly, and met him just once, virtually, when he interviewed me about #CripTheVote for his Barrier Free Futures podcast. But I always appreciated the way he bridged what is often an unfortunate gap between the wilder spirit of protest, and the more controlled, tactical tone of policy development and advocacy. As so often happens in disability culture, I am learning more about Bob and his work from articles written because of his passing than I ever knew before. I guess that's all right. It happens. But it does make me think about making an effort to learn more about the disabled people we hear about, and from, most often in disability life.

Here is another piece about Bob Kafka I want to share before wrapping up the year: Don't Mourn, Organize: The Legacy of Bob Kafka, from the American Association of People with Disabilities.

"Bob’s unruly white curls (usually tucked beneath a hat) and wild beard can be spotted in the photos of the crowds at many pivotal disability protests that helped propel public awareness and progress on key issues. He could lead a chant and rally a crowd – “Our homes, not nursing homes!” – and then moments later lower his voice, lean back in his manual wheelchair and, with patience and tact, have a diplomatic debate with elected officials and political appointees over the nuances of federal funding, state-led programs, and managed care."

Powered by Community: How AAPD Showed Up, Built Together, and Looks Ahead

Maria Town, American Association of People with Disabilities - December 19, 2025

"In 2025, the disability community faced extraordinary challenges. We saw renewed threats to services disabled people rely on for our safety, dignity, and survival. Inclusive education, accessible employment, affordable housing, and health care were all under attack. Through it all, AAPD not only worked to mitigate these threats, but we also brought partners together to coordinate across community priorities, supported the development of disability organizing infrastructure, and lift up advocates engaged in the fight for disability rights."

This is a good year-end summary from one disability organization. It illustrates the role of organizations in capitalizing on and mobilizing the work and passion of individuals like Bob Kafka and thousands of others. Organizing can often be frustrating and slow. But it's an essential part of any social or political movement – especially those that seek to make life better for people with disabilities.

Breaking Barriers: RJ Mitte on Strength, Advocacy, and Representation

Author, Future of Personal Health - December, 2025

"I’ve spent my life learning how to adapt and turn challenges into strengths. Acting became an extension of that. Storytelling allows me to show the world that disability isn’t a limitation; it’s a perspective. Every role I take on is an opportunity to expand what people think is possible."

And here is an example of yet another kind of disability advocacy – both more individually-focused and cultural. It's what disabled people who are active in popular culture can do, not just for themselves and their careers, but for disabled people more broadly. I must admit that I don't know of any other roles by RJ Mitte, aside from playing Walter Jr. in "Breaking Bad." But that role had enormous meaning for me as a disabled son. It's good to see that RJ is aware of the impact he can have, and that he is deliberate about it.

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