What About “Nothing About Us Without Us?”  ## Metadata - Author: [[Anil Dash]] - Full Title: What About “Nothing About Us Without Us?” - Category: #articles - Document Note: --- tags: [disability-rights, accessibility, technology] author: Anil Dash source: anildash.com reference: [https://www.anildash.com/2025/12/08/what-about-nothing-about-us/] date created: 2025-12-08 12:00 --- # 🏷️ Title: What about “Nothing about us without us?” ## 🧭 Table of Contents - [📝 Summary](#-summary) - [📖 Main Content](#-main-content) - [🗒️ Notes](#️-notes) - [📚 References](#-references) - [🗣️ Paraphrase](#️-paraphrase) - [📰 Newsletter](#-newsletter) - [✅ Action Items](#-action-items) - [🧪 Hypotheses](#-hypotheses) - [📊 Methodology](#-methodology) - [❓ Questions](#-questions) - [🔮 Future Research](#-future-research) - [💡 Implications](#-implications) - [🧠 Learning Styles Assessment](#-learning-styles-assessment) - [📊 Accessibility Assessment](#-accessibility-assessment) - [🌍 DEIB Assessment](#-deib-assessment) - [✅ Logical Validity](#-logical-validity) - [🛡️ DARVO Analysis](#-darvo-analysis) - [🎯 Conclusion](#-conclusion) ### 🔗 References - Include links cited in or relevant to the article. ## 📝 Summary - What happened. - Dash reflects on the disability-rights slogan “nothing about us without us,” connects it to tech design, and to his own temporary and invisible disabilities. - Why it matters. - He argues everyone will experience disability, so solidarity and centering disabled leadership is both morally necessary and practically urgent. - Key stakeholders. - Disabled people, tech creators, policymakers, employers, and nondisabled people who will eventually become disabled. - Risks and tradeoffs. - Patronizing or outsider-led “solutions” can harm disabled people and crowd out better approaches; ignoring eugenic politics and economic exclusion worsens outcomes. - Bottom line. - Center disabled people’s voices and leadership now; build empathy and shared advocacy before you personally need it. ## 📖 Main Content - Dash distinguishes between his earlier piece about being able to “talk about us without us” (communication skills) and this essay, which focuses on the disability movement’s demand that policy, products, and advocacy center disabled people themselves. - He honors Alice Wong and other disability advocates as key teachers of the slogan’s history and meaning, emphasizing that “nothing about us without us” is rooted in lived experience and movement-building, not a generic catchphrase. - Using his Function podcast episode with Emily Ladau, Alex Haagaard, and Vilissa Thompson, he shows how disabled technologists offer “specific and personal insights that the creators of these technologies did not have” and how small changes could make tech more accessible for everyone. - He stresses that the “us” in the slogan is ultimately everyone: disability is universal over a lifetime; the difference is only when and for how long. Treating disabled people as “other” is a psychological defense, not a moral or factual truth. - Drawing on his own experiences with Lyme disease and later physical and cognitive challenges, Dash illustrates how invisible disabilities are dismissed and how people’s willingness to accommodate often depends on visibility and legibility to strangers. - He is explicit that these experiences do not make him an expert or spokesperson; they instead highlight “how porous the boundary is” between those who identify as disabled and those who do not yet realize they are part of the community. - In the closing section, he notes the “righteous rage” behind the slogan, especially in a context of eugenic policies, economic precarity, and disproportionate harm to disabled people. He calls for broad solidarity guided by disabled leaders and by faithfully applying “nothing about us without us.” ### 🗒️ Notes - “Nothing about us without us” is rooted in disability-rights history as a response to outsiders deciding policy, care, and technology for disabled people without their leadership. - Dash’s earlier essay on “They have to be able to talk about us without us” was about equipping others to communicate well about communities; here he draws a line between that and the need for self-determination and leadership by disabled people themselves. - He foregrounds Alice Wong (Disability Visibility Project, MacArthur Fellow) as a central influence who “personified the spirit of ‘nothing about us without us’ by fighting to ensure that disabled people led the work to make the world accessible for all.” - The Function podcast episode with Emily Ladau, Alex Haagaard, and Vilissa Thompson offered concrete examples of how contemporary tech is inaccessible and how modest changes could dramatically improve usability for disabled and nondisabled people. - Dash notes that “each of them was the ‘us’ in the conversation,” drawing from community knowledge and lived experience, which product creators lack. This makes their input indispensable, whether one’s motivation is moral responsibility or business sense. - A major conceptual shift: the “us” in the slogan is temporally universal—“everyone is disabled; it’s only a question of when and for how long.” This reframes accessibility as self-interest and shared fate, not charity. - He critiques societal narratives that rationalize failing to meet needs, arguing they rely on casting disabled people as “other” and unworthy; people “who don’t (yet) identify as disabled” rarely talk honestly about this inevitability. - His own health crises (Lyme disease; later physical and cognitive challenges) gave him “glimpses” of disability and exposed how unsettling cognitive change can be and how heavily accommodations depend on visible signals that fit stereotypes. - He underlines that non-disabled experiences of temporary or partial disability do not authorize speaking for disabled people; rather, they should prompt earlier “empathy and solidarity,” before one is forced into the identity by circumstance. - The closing “Everything about us” section ties the slogan to present threats: authoritarian, eugenicist politics; economic shocks that cut disabled people out of work; and the need for all of us to “stand in solidarity” under disabled leadership. ## 📚 References - Anil Dash – “What about ‘Nothing about us without us?’” (https://www.anildash.com/2025/12/08/what-about-nothing-about-us/) - Disability Visibility Project – founded by Alice Wong (https://disabilityvisibilityproject.com/) - Function podcast archive (accessibility & tech) – if available via Dash’s prior work - Emily Ladau – “Demystifying Disability” (book / related accessibility writing) - Vilissa Thompson – Ramp Your Voice (https://www.rampyourvoice.com/) - The Disabled List – work by Alex Haagaard and collaborators on disability-led design ## 🗣️ Paraphrase - Paragraph A paraphrase. - Dash introduces the tension between his prior essay about others speaking well about a community and the disability-rights demand that disabled people lead when decisions concern them, grounding this in movement history and his relationships with activists. - Paragraph B paraphrase. - Through tech-accessibility stories, his own health experiences, and current political threats, he argues that disability will eventually touch everyone, so the only ethical and practical path is to follow disabled leadership and honor “nothing about us without us.” ## 📰 Newsletter In today’s issue, we’re stepping slightly outside core WordPress topics to examine a principle that should shape how we build the web: “nothing about us without us.” Anil Dash’s latest essay unpacks the disability-rights slogan in the context of tech and lived experience, reminding us that accessibility is about shared fate, not checklists. For WordPress builders, this is a call to center disabled contributors in decisions about core features, themes, and plugins. Before you ship that new UI pattern, ask: who’s at the table, and who’s directly affected? Pair WCAG audits with actual user feedback, prioritize accessible defaults in theme design, and invite disabled community members into product-roadmap and testing conversations. A few starting points: revisit your theme’s color contrast, keyboard navigation, and focus states; add real-world accessi - Summary: A blog about making culture. Since 1999. - URL: https://www.anildash.com/2025/12/08/what-about-nothing-about-us/  As I was drafting my last piece on Friday, “[They have to be able to talk about us without us](https://www.anildash.com/2025/12/05/talk-about-us-without-us/)”, my thoughts of course went to one of the most famous slogans of the disability rights movement, “[Nothing about us without us.](https://en.wikipedia.org/wiki/Nothing_about_us_without_us)” I wasn’t unaware that there were similarities in the phrasing of what I wrote. But I think the topic of communicating effectively to groups, as I wrote about the other day, and ensuring that disabled people are centered in disability advocacy, are such different subjects that I didn’t want to just quickly gloss over the topic in a sidebar of a larger piece. They're very distinct topics that really only share a few words in common. One of the great joys of becoming friends with a number of really thoughtful and experienced disability rights activists over the last several years has been their incredible generosity in teaching me about so much of the culture and history of the movements that they’ve built their work upon, and one of the most powerful slogans has been that refrain of “nothing about us without us”. Here I should start by acknowledging Alice Wong, who we recently lost, who founded the [Disability Visibility Project](https://disabilityvisibilityproject.com/about/), and a MacArthur Fellow, and a tireless and inventive advocate for everyone in the disabled community. She was one of the first people to bring me in to learning about this history and these movements, more than a decade ago. She was also a patient and thoughtful teacher, and over our many conversations over the years, she did more than anyone else in my life to truly *personify* the spirit of “nothing about us without us” by fighting to ensure that disabled people led the work to make the world accessible for all. If you have the chance, learn about her work, and [support it](https://www.gofundme.com/f/Alice-Wongs-Legacy). But a key inflection point in my own understanding of “nothing about us without us” came, unsurprisingly, in the context of how disabled people have been interacting with technology. I used to host a podcast called Function, and we did an episode about how inaccessible so much of contemporary technology has become, and how that kind of ruins things for everyone. (The episode is still up on [Spotify](https://open.spotify.com/episode/0IN2nQWUqmQnAMxNLN85WE) and [Apple Podcasts](https://podcasts.apple.com/us/podcast/function-with-anil-dash/id1439658455?i=1000452883786).) We had on [Emily Ladau](https://emilyladau.com) of [The Accessible Stall](https://www.theaccessiblestall.com) podcast, [Alex Haagaard](https://alexhaagaard.com) of [The Disabled List](https://www.disabledlist.org), and [Vilissa Thompson](https://www.vilissathompson.com) of [Ramp Your Voice](https://www.rampyourvoice.com). It’s well worth a listen, and Emily, Alex and Vilissa really do an amazing job of pointing to really specific, really evocative examples of *obvious* places where today’s tech world could be so much more useful and powerful for everyone if its creators were making just a few simple changes. What’s striking to me now, listening to that conversation six years later, is how little has changed from the perspective of the technology world, but also how much my own lived experience has come to reflect so much of what I learned in those conversations. Each of them was the "us" in the conversation, using their own personal experience, and the experience of other disabled people that they were in community with, to offer specific and personal insights that the creators of these technologies did not have. And whether it was for reasons of crass commercial opportunism — here's some money you could be making! — or simply because it was the right thing to do morally, it's obvious that the people making these technologies could benefit by honoring the principle of centering these users of their products. #### Taking our turn I’ve had this conversation on various social media channels in a number of ways over the years, but another key part of understanding the “us” in “nothing about us without us” when it comes to disability, is that the “us” is *all of us*, in time. It's very hard for many people who haven’t experienced it to understand that everyone should be accommodated and supported, because everyone is disabled; it’s only a question of when and for how long. In contemporary society, we’re given all kinds of justifications for why we can’t support everyone’s needs, but so much of those are really grounded in simply trying to convince ourselves that a disabled person is *someone else*, an “other” who isn’t worthy or deserving of our support. I think deep down, everyone knows better. It’s just that people who don’t (yet) identify as disabled don’t really talk about it very much. In reality, we'll all be disabled. Maybe you're in a moment of respite from it, or in that brief window before the truth of the inevitability of it has been revealed to you (sorry, spoiler warning!), but it's true for all of us — even when it's not visible. That means all of us have to default to supporting and uplifting and empowering the people who are disabled today. This was the key lesson that I didn’t really get personally until I started listening to those who were versed in the history and culture of disability advocacy, about how the patronizing solutions were often harmful, or competing for resources with the *right* answers. I’ve had my glimpses of this myself. Back in 2021, I had Lyme disease. I didn’t get it as bad as some, but it did leave me physically and mentally unable to function as I had been used to, for several months. I had some frame of reference for physical weakness; I could roughly compare it to a bad illness like the flu, even if it wasn’t exactly the same. But a diminished *mental* capacity was unlike anything I had ever experienced before, and was profoundly unsettling, deeply challenging my sense of self. After the [incident I’d described in 2022](https://www.anildash.com/2022/07/18/i-went-to-a-coffee-shop/), I had a series of things to recover from physically and mentally that also presented a significant challenge, but were especially tough because so much of people’s willingness to accommodate others is based on any disability being *visible*. Anything that’s not immediately perceived at a superficial level, or legible to a stranger in a way that’s familiar to them, is generally dismissed or seen as invalid for support. I point all of this out not to claim that I fully understand the experience of those who live with truly serious disabilities, or to act as if I know what it’s been like for those who have genuinely worked to advocate for disabled people. Instead, I think it can often be useful to show how porous the boundary is between people who *don’t* think of themselves as disabled and those who already know that they are. And of course this does *not* mean that people who aren't currently disabled can speak on behalf of those who are — that's the whole point of "nothing about us without us"! — but rather to point out that the time to begin building your empathy and solidarity is now, not when you suddenly have the realization that you're part of the community. #### Everything about us There’s a righteous rage that underlies the cry of “nothing about us without us”, stemming from so many attempts to address the needs of disabled people having come from those outside the community, arriving with plans that ranged from inept to evil. We’re in a moment when the authoritarians in charge in so much of the world are pushing openly-eugenicist agendas that will target disabled people first amongst the many vulnerable populations that they’ll attempt to attack. Challenging economic times like the one we’re in affect disabled people significantly harder as the job market disproportionately shrinks in opportunities for the disabled first. So it’s going to take all of us standing in solidarity to ensure that the necessary advocacy and support are in place for what promises to be an extraordinarily difficult moment. But I take some solace and inspiration from the fact that there are so many disabled people who have provided us with the clear guidance and leadership we need to navigate this moment. And there is simple guidance we can follow when doing so to ensure that we’re centering the right leaders, by listening to those who said, “nothing about us without us.”, What About “Nothing About Us Without Us?”, Anil Dash, 01kbzme9dkbnccm70vb9n7j6tq.