Olivia: A US government audit found that New York City's paratransit service left over 31,000 disabled passengers stranded in a single year. Jackson: Thirty-one thousand. That’s an entire town’s population just… left behind. It’s infuriating. Olivia: It is. But what if the real problem isn't just a broken system, but a broken way of seeing people altogether? Jackson: That’s a heavy question. What are you getting at? Olivia: That's the core question at the heart of the book we’re diving into today: Disability Visibility: First-Person Stories from the Twenty-First Century, edited by the incredible activist Alice Wong. Jackson: And Wong is a force. She founded the Disability Visibility Project, and this book isn't just a collection of essays—it was intentionally published to mark the 30th anniversary of the Americans with Disabilities Act. Which makes you ask: 30 years on, what does 'visibility' even mean? Olivia: Exactly. And the book argues it's far more complicated, and frankly more profound, than we think. It’s not just about being seen.

Jackson: Okay, so let's start there. Because my first thought is, visibility has to be a good thing, right? When actress Selma Blair walked the Oscars red carpet with her cane after her MS diagnosis, it felt like a huge, triumphant moment for disability representation. Olivia: It absolutely was. And the book acknowledges that. Zipporah Arielle’s essay on that very moment talks about how seeing Blair’s confidence inspired her to stop hiding her own cane in photos. It was validating. But the book immediately complicates this idea. It asks: what happens after you’re seen? Jackson: What do you mean? Olivia: Well, visibility can be a double-edged sword. In one of the most powerful essays, Ariel Henley talks about having Crouzon syndrome, which affects the shape of her face. As a child, she was featured in a magazine, which sounds great for visibility. But when she finally read the article years later, it compared her and her sister's faces to a Picasso painting. Jackson: Oh, no. That’s not a compliment. That’s objectification. Olivia: Precisely. She felt like a piece of art to be stared at, not a person. It was dehumanizing. The book is full of these stories that show this paradox: disabled people are often simultaneously hypervisible—they're stared at, pointed at, treated as spectacles—and invisible in the ways that matter. Their needs are ignored in architecture, in policy, in media. Jackson: I can see that. Like the story of the "Good Luck Lady." Harriet McBryde Johnson writes about how people in her town thought it was good luck to touch her head before voting day. She's incredibly visible, but not as a person. She's a good luck charm. Olivia: Exactly. She's an object. And this is the core of what the book is getting at. Visibility without power, without agency, without respect, isn't liberation. It can be just another kind of cage. The book argues that the goal isn't just to be seen, but to be heard, to be understood, and to have the power to tell your own story. Jackson: Which is so hard when the world is constantly trying to write it for you. There's that gut-wrenching story from Diana Cejas, the doctor who has a stroke and becomes a patient in her own hospital. A nurse, trying to be comforting, tells her that her own traumatic car accident was a "blessing" and that maybe Diana's stroke is one too. Olivia: The intention might be good, but the impact is awful. It erases the patient's actual experience of pain and struggle. It’s another way of not truly seeing the person in front of you. Jackson: Wow. So being seen can actually be a trap. You're visible, but only on terms that make non-disabled people comfortable. You're either an inspiration, a tragedy, or a Picasso painting. Olivia: And the book is a powerful rejection of all of those labels. It's a demand to be seen in all of your messy, complicated, human reality. This is especially true when it comes to the legal and medical systems. Jen Deerinwater writes about the erasure of her Indigenous identity in healthcare. She's forced to check a box—'white' or 'American Indian'—that doesn't fit, and she describes how this erasure directly leads to inadequate, even dangerous, medical care. Jackson: So her visibility as a patient is completely undermined by her invisibility as an Indigenous person. The systems aren't built to see her whole self. Olivia: They're not. And that's where the book's critique becomes so sharp. It's not just about individual attitudes. It's about how these systems—medical, legal, social—are designed to erase complexity. The book is a chorus of voices saying, "You can't erase us. We're here. And you need to listen."

Jackson: That feeling of being misunderstood or misrepresented must generate so much frustration. It makes me think about the emotional side of this, which the book is not afraid to explore. Olivia: It dives right in. One of the most mind-bending concepts it introduces is "crip time." Ellen Samuels writes a beautiful essay about this, and it’s not just about being late or needing more time for tasks. It’s a completely different way of experiencing time itself. Jackson: Hold on, you mentioned 'crip time.' Can you break that down for me? I've never heard that term before. Olivia: Of course. Samuels describes it as being extracted from linear, progressive time. When you're chronically ill, you don't follow the typical life path of school, career, marriage, retirement. You might experience aspects of old age in your twenties, like a psychiatrist told her she had a "level of loss we would usually expect to see in someone in their seventies." Your life is cyclical, unpredictable. It bends to the needs of your body, not the other way around. Jackson: That sounds incredibly disorienting. It's like you're living in a different timezone from everyone else. Olivia: It is. And living in that different timezone, in a world that demands you follow its clock, generates a lot of friction. Which brings us to another powerful emotion the book reclaims: rage. Jackson: Okay, but the idea of 'weaponizing rage' sounds... dangerous. Society tells us anger is destructive. How does the book frame that as a constructive thing? Olivia: It’s a fantastic question, and Elsa Sjunneson’s essay, "How to Make a Paper Crane from Rage," is the perfect answer. She argues that for a disabled person, rage is a logical, justified response to a world full of barriers. It’s a reaction to being locked out of buildings, condescended to, or denied basic dignity. Jackson: So the rage isn't the problem; the ableism is. Olivia: Exactly. And Sjunneson doesn't advocate for violence. She advocates for transforming that rage. She uses the metaphor of origami. Every insult, every barrier, is a fold. You take that sharp, painful anger and you fold it, you shape it, you turn it into something else—into advocacy, into art, into radical vulnerability. You use it to teach people, to demand change. Jackson: So the rage becomes the fuel. That’s a powerful reframing. It’s not about suppressing the anger, but channeling it. Olivia: And what's so brilliant about the anthology is how it places that righteous rage right alongside the concept of joy. Keah Brown, in her essay "Nurturing Black Disabled Joy," talks about how choosing joy is a revolutionary act. In a world that assumes disability equals sadness and shame, especially for a Black disabled woman, simply being happy and celebrating yourself is a form of resistance. Jackson: I love that. She created the #DisabledAndCute hashtag, right? Olivia: She did! And it became this global movement for disabled people to share their joy and their beauty on their own terms. It’s the flip side of rage. Both are about reclaiming your own emotional landscape from a society that tries to dictate how you should feel. Jackson: So crip time, rage, and joy are all ways of reclaiming your own experience from a world that tries to define it for you. It's about creating your own internal reality. Olivia: A reality that is authentic, complex, and unapologetically human.

Olivia: Exactly. And that reclaiming isn't done alone. The book powerfully argues against the myth of the lone, independent hero. Jackson: This is so different from how we usually think about success. We celebrate the solo genius, the rugged individual who pulls themselves up by their bootstraps. Olivia: But the book asks, what if you can't wear boots? Or can't reach your bootstraps? The myth of independence is a cornerstone of ableism. It assumes everyone has the same physical and mental capacity. Jackson: That makes so much sense. For many disabled creators, that idea of the 'lone genius' isn't just a myth, it's an impossible standard. It's a barrier. Olivia: A huge barrier. And there's a story in the book that just beautifully illustrates the alternative. It’s in the essay "Why My Novel Is Dedicated to My Disabled Friend Maddy" by A. H. Reaume. Reaume had a brain injury and couldn't look at a screen long enough to edit her novel. She was completely stuck. Jackson: So what did she do? Olivia: She connected with a friend, Maddy, who also had a brain injury. Reaume would edit on paper, and Maddy would transcribe the edits onto the computer. But it became so much more than that. They supported each other emotionally, they understood each other's "crip time," their need for naps, their brain fog. It wasn't charity; it was a partnership. It was interdependence in action. Jackson: Wow. So they built their own system of support that the outside world couldn't provide. Olivia: They did. And in doing so, they both healed and thrived. Reaume finished her novel, and Maddy found flexible, meaningful work. This is what the book means when it talks about community as a political act. Alice Wong quotes the activist Mia Mingus, saying, "The only way we will survive is by being in each other’s lives." Jackson: That’s a profound shift in thinking. It’s not about an individual overcoming adversity. It’s about a community creating the conditions for everyone to contribute. Olivia: And it's a direct challenge to the systems that isolate us. Think of Ricardo Thornton's story. He spent his childhood in an institution, Forest Haven, where he was told he was a "lost cause." He was segregated, abused, and given no opportunities. But once he got out and into the community, with support, he thrived. He got a job he’s held for over 35 years, got married, raised a family, and testified before the U.S. Senate. Jackson: His story proves that the "lost cause" wasn't him; it was the institution. The limitation wasn't his disability; it was the lack of community and opportunity. Olivia: Precisely. The book argues that these acts of connection—whether it's two friends editing a book, or activists creating #CripTheVote to demand political attention, or the Harriet Tubman Collective demanding that the Movement for Black Lives include disability justice—these are the engines of change. This is where the real work of disability justice happens. Not in isolation, but in solidarity.

Jackson: So after all these stories, what's the one thing we should take away? If 'visibility' isn't the end goal, what is? Olivia: The book argues the goal isn't just to be seen, but to have power. The power to define your own life, your own time, your own joy. The power to exist without having to justify yourself. And that power doesn't come from being a lone individual who 'overcomes' their disability. It comes from community. Jackson: It's a total rejection of the inspiration-porn narrative. Olivia: Completely. It’s a rejection of the idea that a disabled person’s value lies in how much they can seem like a non-disabled person. Instead, the book celebrates disability as a culture, an identity, and a source of wisdom. The stories in this anthology are not just stories; they are, as you said, blueprints for building a more just world. Jackson: And it feels like that world would be better for everyone, not just disabled people. Olivia: That's the ultimate point. A world with flexible time, where interdependence is valued over ruthless independence, where accessibility is the default, where everyone is treated with dignity—that's a better world for all of us. As Alice Wong says, "Community is political." And the connections we build are the most powerful political tools we have. Jackson: It makes you wonder, in our own lives, where are we valuing independence over interdependence, and what are we losing because of it? Olivia: A question worth sitting with. This book is an invitation to start asking it. Jackson: This is Aibrary, signing off.