I have always found it difficult to say no to book clubs. So when our Diversity, Equity, Inclusion, and Antiracism (DEIA) Team started a book club at the National Partnership, I immediately nominated “Disability Visibility: First Person Stories from the Twenty-First Century,” a book that has been sitting on my shelf for an embarrassingly long time. Disability Pride Month concluded a few weeks ago, but National Partnership staff are eager to continue our learning and commitment to disability rights and justice year-round. We wanted to share our reflections and favorite excerpts from the collection of essays edited by Alice Wong.
The National Partnership intentionally incorporates disability rights in our advocacy, recognizing that equality for women and the ability for women to live fulfilling lives must include disabled women.1 And yet, our health care and economic systems have continuously failed disabled women, particularly those whose intersecting identities mean that they face compounding barriers of marginalization: disabled women2 of color, disabled immigrant women, disabled LGBTQ+ people, and more. The essays in “Disability Visibility” reflect this wide array of experiences and identities and “show disabled people simply being in our own words, by our own accounts,” as Alice Wong notes in the introduction.
Many essays directly applied to issues and reforms we advocate for at National Partnership, such as abortion rights or paid sick days:
“If you work a nine-to-five, forty-hour-a-week job, what is defined as full-time work in the United States, then (if you’re lucky) you accumulate a certain number of sick days. There is always a strange arithmetic to this process: maybe for every eight hours you work, you accrue one sick hour… It’s never a one-to-one ratio: you have to work hard to earn the time to be sick.”
– Ellen Samuels, “Six Ways of Looking at Crip Time”
Jessica Mason reflects: “Our work to help more people win paid sick days protections is so important. But we do that work in the social and political reality Samuels describes, shaped by deeply ableist beliefs about what counts as hard work and who deserves support and economic stability. Illness and disability are facts of existence. Why, for so long, have we accepted the idea that time to live with them is a privilege to be earned, not a basic right?”
Essays in “Disability Visibility” also shed light for Kate Gallagher Robbins on “why community spaces are about building and belonging, rather than exclusion”:
“It isn’t that nondisabled people are unwelcome at this dance performance. But the space has not been tailored to their needs and designed to seamlessly accommodate them, and they stand out. The experience pushes the boundaries of their understanding and expectations.”
– s.e. smith, “The Beauty of Spaces Created for and by Disabled People”
Aimee Peoples adds: “I think so much of the work of creating equitable and inclusive spaces happens when people share their personal stories and others around them can really see and feel the ways we are similar and different from each other. “Disability Visibility” encourages me to not only continue to think about how we are creating inclusive environments for disabled people, but also to create space for personal stories as much and as often as possible.”
One personal story and quote stuck with Aimee in particular, in which the author describes the compounding injustices and lack of humane treatment he endured in prison:
“It’s hard to describe the fury and anger.”
– Jeremy Woody, “The Isolation of Being Deaf in Prison”
Aimee reflects on Woody’s contribution: “American prisons are such a horrible, vulnerable, and scary place for those who are able-bodied, so to have a disability and have to rely on the kindness of strangers for basic needs and safety is nearly unfathomable, but Jeremy describes so many stories of interactions that you have no choice but to picture it. This particular quote feels important because when you are vulnerable and oppressed, it seems like you have to keep your emotions polite and palatable to earn sympathy or basic respect. I really appreciated this quote focusing not on sadness, shame, or forgiveness, but on the hard-to-describe, righteous fury and anger that comes from these types of dehumanizing experiences and a reminder of the right to feel this way.”
For some at NPWF, disability rights and justice work is deeply personal and emotional. It calls on us to channel our rage into becoming stronger, more empathetic advocates.
“My rage is supposed to be small. Manageable. Pretty. I am supposed to fold it down, make it something to consume – like an origami crane or a perfectly hand-dipped candle… When I fold down my rage, I fold down myself.”
– Elsa Sjunneson, “How to Make a Paper Crane from Rage”
This passage resonated with Marissa Ditkowsky: “As a disabled woman, I am expected to simply accept how I am treated – even if it hurts, even if it is unjust and inequitable, even when I am made to feel disposable. But I have learned to embrace ‘radical vulnerability,’ as Elsa Sjunneson puts it. I share my rage so others understand my rage. I share my rage to make things better for others like me. I share my rage because I am too tired to keep it inside. But I also share my sadness, my joy, and my fear. I cannot be bottled up into a simple, pretty package, and I refuse to be.”
Stories on multigenerational healing also spoke to Anushka Dar:
“Every loss or win is not a personal best kept just for me; instead, it’s a scorecard passed on through generations and across oceans. Too much is at stake.”
– Sandy Ho, “Canfei to Canji: The Freedom of Being Loud”
Anushka shares that, “Due to my upbringing, I often find myself considering the impact of my actions on the lives of those who come after me. The importance of breaking cycles of generational trauma by letting go of the expectations assigned to me is one that I feel very strongly. There is too much at stake to not fight for future generations through radically changing narratives for ourselves and for our communities.”
But the work of combating systemic oppression also inspires love and joy:
“However, it was Ki’tay’s ability to sit with and actively love oppressors and those who were violent toward him and marginalized communities – most often solely because they do not adhere to that which has been deemed ‘normal’ – that truly set him apart. He could breathe life and love into even those people within mere moments of making their acquaintance. This is what makes him special… He was grounded in love. Always.”
–Talila A. Lewis, “For Ki’tay D. Davidson, Who Loves Us”
“Ki’tay’s ‘countless quiet sacrifices in the name of love, liberation, humanity remind me of the significance of disabled joy and love as a form of resistance and advocacy,” says Anagha Sreevals. “While reading Talila’s eulogy, I felt emotional thinking about the abundance of joy that Ki’tay shared with those around him – the community he grew and watered through his love is so powerful.”
“Disability Visibility” pushed me to think about all the ways our current systems have failed people with disabilities of various backgrounds and perspectives, and how we as advocates can push for a better world beyond the frame of rights and accommodations. It has helped me envision a world in which all disabled people can thrive – and for that world to feel entirely possible. My colleagues said it best:
“Alice Wong and her incredible work compiling this anthology opened my eyes to new possibilities – a future where our perspectives and stories were front and center, unshaped by the judgment and biases of nondisabled folks. My goal is to share and center these stories and perspectives in my advocacy, and to never dim my own light.”
– Marissa Ditkowsky
“I am a disabled person myself, but my experience isn’t the only one nor is the disabled experience monolithic. Reading this book has opened the door for me to learn more about so many new perspectives. These first-person stories show the vast experience of being disabled and the emotions and struggles that come with it. Even though disability can be so isolating, this book showed me that our shared humanity means we are never truly alone.”
– Anagha Sreevals
“In general, a lot of movement work is put down as ‘unrealistic’ and I love anything that insists on pushing back against the frame of ‘realism’ in popular imagination. I am a big believer that should we yearn for a better world, we are already reaching towards its horizon; and if there is a horizon to reach for, that better world exists. I love the way disabled people’s work forces me to redefine realism and what’s possible. I love how it calls on us to time travel and shapeshift.”
– Anushey Ahmed
1. In this blog post, we are using identity-first language. For many people, their disability is a large part of their identity and integral to who they are as a person, and therefore many prefer disability-first language. However, we encourage you to ask for someone’s preference when referring to their identity. Learn more here: https://www.sensoryfriendly.net/disabled-person-or-person-with-a-disability/#Disability-first-language Go back ↑
