Stimpunks Foundation

Scrollytelling is the fusion of scrolling and storytelling: a way to dynamically tell long-form stories as the user scrolls. The first 8 pages of our website are a multimedia scrollytelling adventure that we call “The Reframer’s Journey”. Reframe your notions of disability and difference. Take the journey.

When I’m feeling glum, I remember to look for the helpers (thank you, Mr. Rogers). And sure enough—there they are. Spectacular leaders and efforts lighting the way. Big appreciation to the Stimpunks Foundation Foundation for the light you shine. You’ve given me fuel for this day…glum-free. At Northern California Grantmakers California Grantmakers, I’m lucky to be in a role that lets me learn from and about changemakers, and those supporting them, every single day. What I’m seeing is this: while things may feel uncertain at the national level, hope and transformation are alive and well in communities—rooted in vision, grounded in power, and growing stronger. And grizzled old grantmaker that I am, I have no illusions about what it’s going to take to truly give these leaders a fighting chance. The scale of investment needed? It’s a lot. And it’s not a lot—if you catch my drift. Because money is just one dimension. Also needed, infrastructure: the deep, steady scaffolding that allows movements and organizations to hold more, reach further, and last longer. Someone has that vision, too (see Malkia Devich Cyril). When I look around at the state of things—and after reviewing dozens and dozens of existing grantmaking strategies and their grantees—I keep coming back to this truth: Real change will come when philanthropy reaches the “energy of activation” investment level in today’s power-builders. And when that moment comes, we’ll hit an inflection point—one that may exceed what we can even imagine right now. We need more grantmaking that starts with deep strategy and trust in community vision. Philanthropy must follow that vision with flexible capital, wraparound support, and the connective tissue that brings more resources into the fold. A new era is waiting. And the leaders who can build it? They’re already among us.

For Autism Acceptance Month, learn about autism from Autistic people. Take a walk in our shoes with this vertical storytelling piece from our community.

“Build a tribe, and get it real tough. Link it with other tribes, and keep linking.” --Cliff Cash, ‪@cliffcashcomedy We’re helping build rhizomatically linked ecologies of care to survive the times.

“We need a counterculture of care. Because the dominant culture just keeps getting colder and deadlier.” —@MsKellyMHayes Help us build a counterculture of care that supports some of the most marginalized people in society. Donate today. https://lnkd.in/gDe_wc-N “Let's organize our lives around love and care.” —Ezra Furman

Enable dignity. Everywhere should be accessible. The accommodations for natural human variation should be mutual. Accessibility is a collective process. Here’s how.

Our learning pathways take you on a walk in our shoes. Learn about school-induced anxiety, neuronormative domination, obstacles to neurodiversity, behaviorism, the double empathy problem, monotropism, the neurodivergent umbrella, the neurodiversity Smorgasbord, and more in this scrollytelling adventure.

Here’s our recipe for human-centered education compatible with neurodiversity and disability.

The fundraising climate is difficult right now. We need recurring donations to sustain our work. Become a sponsor, and get a t-shirt, a sticker, and shout outs on our website and socials. https://lnkd.in/gn2zK_iS

"Positive Behaviour Support (PBS) is about Quality of Life improvements. If we don't use PBS, we're saying we want people to have a poor quality of life". I see this written, in various forms, on endless documents & in endless papers. So, one would imagine that there was 'gold standard' evidence of PBS improving quality of life, yes? Proper RCT trials asking service users, with excellent ethical, assent, consent, adverse effects considerations, etc? What if I told you there was almost no evidence of improved quality of life from the individuals receiving this intervention? You'd think I'd taken leave of my senses, perhaps? Well, I'm glad to say that it's not me who made this observation. It's the PBS researchers who note it: Gore and team (2022) who note that "Quality of life outcomes have often been neglected in PBS research and practice." Gore, Jones & Stafford (2020) "Multiple reviews have included recommendations.. In particular, the need to consider routine measurement of QoL at an individual & family level... has been a re-occurring theme as described previously.." Simler (2019) "...there is no empirical basis to suggest that PBS reduces the use of restrictive practices nor that it enhances quality of life or teaches adaptive skills."  MacDonald & team (2018) who note that there was no evidence of change to quality of life for people, after a lot of staff PBS training. Certainly there's some papers claiming a quality-of-life improvement. They asked staff and family, not the people receiving this intervention. How odd. I have spent a very long time researching this field. I get the new PBS research all the time, and almost invariably it says, "Yeah, we're really improving quality of life" (paraphrased), but then offers no proof from the individuals themselves. Today, I asked for the most recent research papers on PBS and quality of life. There are four. The first only asked staff and family about quality of life. The second didn't offer any evidence of improved quality of life. The third also offered no evidence. The fourth stated that other research teams had the evidence. It then listed the alleged papers containing this evidence: The paper by Gore & team which I mention above. Nope. A paper by Allen (2005) which only asked staff and families. A paper by Carr (2007) which says how important it is to ask the individuals, but...doesn't. A paper by Carr & team (2002) which assumes that if needs are met, quality of life improves, but doesn't offer any evidence. It all looks terribly plausible. But, who is asking the actual people what a quality of life looks like and feels like? Who is setting up robust studies to test whether quality of life actually improved after PBS (and not some other factor in their lives). Like I said, this isn't me inventing this. This is the PBS industry itself who are quietly raising their own concerns. Mmm. Do reflect on this, please. Ask for evidence from the people receiving it.