By Asha Sridhar
Today we’re happy to welcome Alice Wong to discuss the young adult adaptation of Disability Visibility.
Firstly, I want to congratulate you on bringing out such a beautiful book. So, why did you decide to adapt the book for a young audience and how has the process been for you?
Delacorte, which is a Penguin Random House imprint, reached out to me saying that they wanted to do a YA version. That was such a brilliant idea. It was only a few months after the release of my anthology, so I didn’t really have time to think about a follow-up. I am so thankful that Delacorte wanted to adapt this. It was really quite an easier process than starting over and editing a brand new volume.
One difference with this version is that I wrote a brand new introduction. It is geared towards younger readers with a particular section where I speak directly to young disabled people. I think that was important to me—to center them and also to share my own story as somebody who grew up disabled. That to me was a real joy and I really appreciated the opportunity.
Otherwise, most of the process was pretty straightforward. We couldn’t include all the essays that were originally in the anthology because of space and a little bit more mature content. Of the ones that they [Delacorte] selected, they just went back to the contributors with some minor suggested edits and that was about it.
In the introduction, you say that this is a book you wish you had when you were a teenager. Do you think that the publishing landscape has changed since then? Are there more books written by people with disabilities, especially for a young audience?
There are definitely more novels and non-fiction by disabled writers now.
In the last five years, I have seen some really exciting work. For example, Marieke Nijkamp has written several novels and has also edited an anthology of fiction called Unbroken. They also write YA fiction. Talia Hibbert, a romance author from the U.K. has [an adult] trilogy about three sisters, The Brown Sisters. There’s Emery Lee who has Meet Cute Diary out now and Café Con Lychee out next May. There’s Lillie Lainoff, who has a book called One for All out next March. These are just a few examples of authors in the romance and YA spaces, but we need more, especially from disabled people of color.
I want to see that same kind of proliferation in all of the different categories like adult trade, because, frankly, there are a lot of problems in the publishing industry.
It is so hard for writers, especially marginalized writers, to break in and have an agent and do all of those things. To be honest, there aren’t that many people in the industry who identify as disabled.
Disabled writers discuss anecdotally with other writers about how they receive a lot of rejections, or feel that editors don’t truly understand their characters or storylines. What is published about disability is often based on their assumptions of what readers want. For the most part, they imagine a White middle-class cisgender audience. And this is very much the same for their ideas about disability. I think they gravitate towards palatable stories. They want things that don’t ruffle their feathers about what the disabled experience is like, and that often frustrates disabled writers.
We also need disabled editors and disabled copywriters. We can’t get these books published until we have more decision-makers and people involved throughout the entire production process who come from all these different backgrounds.
What do you think is the way forward? How do we get more diversity in the publishing industry?
That’s the million dollar question. I would love to see more concerted efforts by publishers. They should want to look for submissions and manuscripts by disabled writers. Disabled writers are also looking for agents who will understand and champion their work. This is the bare minimum.
Any publisher that has initiatives such as fellowships or internships should also explicitly say they want not only people of color or people from the LGBTQ community, but they should say they want people from the disability community. That would be obvious to me. But a lot of places still don’t think of disability as part of diversity.
For any sort of DEI initiative or campaign or policy or practice, the goal should be systemic change, not incremental, tokenistic, performative displays of diversity.
How can we make the industry more accessible?
Why is New York City still the place where you are supposed to be if you want to work at a major publisher? (Shout-out to all the independent and small presses out there.) Why has it been this way forever and ever that people have to live and work in New York City, which is incredibly expensive? It is not easy to do that and I hope the pandemic has opened up more opportunities.
Last year, I saw a Tweet by Macmillan about their remote internships. This was the first time I noticed this from a major publisher and I hope this continues well after the pandemic, so all kinds of people from all kinds of places can apply.
I tweeted that it’s sad that it took a pandemic for a publisher to offer this, because I constantly think about all the disabled people that would have been so awesome in the past to have had this opportunity. But it is only now, with the pandemic, that things are, maybe, opening up but it’s not clear at the moment.
Finally, it took a huge disruption to the lives of non-disabled people for them to realize, ‘Oh, wait. There is more than one way to do this’. What we really need is a fundamental shift in the way publishers do their work.
What if we were more flexible? I feel like there are so many ways that the publishing industry is still very stuck at their practices and I would love to see more of a change to have all types of people. For example, people who can’t work nine to five at an in-person job who are just as talented, and can make such a contribution to the industry. And yet, they are shut out for all kinds of reasons. A lot of things are not here to be barriers and yet they are barriers.
I would love to see, for example, a brand new YA imprint that is completely run by disabled editors. Wouldn’t that be something? Also, if a major publisher had a new imprint specifically publishing work by disabled people that is by disabled editors, that to me would be huge.
It would be a huge investment in disabled writers and disabled people in publishing. Put in the money and give a chance to try to change the structures and cultures in this industry.
Disabled people are readers who are just so hungry for change. Hopefully this might happen in the near future as there are more demands for equity and diversity.
The stories in the book are so intersectional, profound, layered and powerful. They bring so much nuance into conversations on everything from “inspiration porn” to the right to self determination to finding love. How did you narrow down on these particular stories?
Thank you for asking. I think this is the largest responsibility as an editor. I focused on 21st century stories and had a long list of works from year 2000 to 2019. That particular parameter was so helpful. For me, it wasn’t about checkboxes. I didn’t want something from every kind of disability. That’s not to me useful or even feasible, because there’s just no way to really capture every aspect.
I selected stories that moved me, stories that I thought were important, that most people don’t know about. It is a privilege to be able to select pieces that I think a wider audience really needs to learn from.
All of the pieces in the book are personal and political. This shouldn’t have to be said, but it’s radical to be a disabled person in a non-disabled world, to live your life, pursue your ambitions, hold your passions and your interests.
A lot of these pieces aren’t about, ‘Oh, what is it like to be disabled?’ That’s not what I am going for. I wanted to go a bit deeper in terms of, ‘This is who I am. This is what I do. This is my life’.
I wanted to bring in all these different kinds of issues that most people don’t think about as disability issues. For me, every issue is a disability issue, be it science or parenting. We are everywhere.
It’s also important that the stories are intersectional, because I think that is really necessary in terms of the current representation of disability in publishing. It is still overwhelmingly white. We need to have more disabled people of color in publishing. I really wanted to be sure to amplify disabled people of color in this anthology.
How do you see this book helping a young person?
A young person, whether it is this year or 10 years or 100 years from now—I want them to reach out to this book and feel less alone. Isn’t that the goal of so many writers? Especially in YA?
The fact is that, here we are in 2021, and a lot of young people are still isolated these days despite so many different ways to connect and share. People still feel alone. Oppression still exists, and so much of oppression is internalized oppression. I still feel like there’s a lot of things that young people have to go through to find themselves, maybe even more in the 21st century.
I hope that this anthology helps disabled people as they’re going through their process. It’s not easy. It’s not linear. It’s not going to be A to Z, or like, ‘Oh, when you turn 18, you are going to figure it out’. That’s not reality.
The goal with this book is for them to get a glimpse of the future, that it’s one of many futures, and for them to understand that the world is bigger than this. That there’s a whole universe, a whole world just waiting for them. It’s limitless!
In many parts of the book, we read about the need for role models. Is that something you hope to achieve with this anthology? Do you think readers will find a role model in these authors?
I think the anthology is less about role models and more about just everyday people doing things that they want to do. I don’t think of them as role models. That sets up this very weird dynamic. Role models have to be a certain way that is idealized and sanitized.
When we think about role models, we think they have got it all together, they have figured things out and they’re not fallible.
This is just my own opinion and my own experience too. Some people see me as a role model and I really want to turn that around and say that I don’t want to be seen as a role model.
If you see me as one and it helps you, I’m glad it does, but it also makes me uncomfortable, because it creates expectations that is weird. It makes me feel less able to be honest, my true self. And that is all of the good stuff and all of the bad stuff, and all of the in-between stuff. I really want people to rethink what they imagine role models to be.
In the book, we see examples of both ableism in society, like casual ableism, as well as internalized ableism. How do we change that as a society?
One of the first things we could do is listen to and learn from disabled people. Read books like this and books by disabled people.
Ableism is still a new concept for a lot of people, especially non-disabled people. Just like we have to unlearn anti-blackness, homophobia, and sexism, we also have to unlearn ableism.
Part of it is just acknowledging it, and also supporting disabled people, whether it’s through organizations or individuals. It’s also about raising and supporting the work of disabled people whether they’re writers, artists, or filmmakers, the whole gamut.
One place to start understanding disability culture and history in the U.S., is a Netflix documentary called Crip Camp. It’s about a bunch of disabled teenagers in the ’70s who went to a camp and how being together really galvanized them. This is a good introduction because just like disability in literature, disability history is not told. And that is part of the work, to learn about history and also take disabled people seriously.
There is an essay about dwarfism in this book which discusses how Benjamin Lay’s disability was not mentioned.
Yes, by Eugene Grant. These are the stories that we never hear about in our history books or at least not enough. Throughout history, we’ve always existed whether historians wrote about us as disabled or not.
This is one reason why we need more disabled people to tell their own stories.
This also makes me feel very privileged to be an editor who is disabled and who has the power to do this. It is a huge joy.
I really hope that this YA version is taught at high schools. I hope that teachers at high school or middle school use this book in creative and fun ways. I hope young people will organize discussion groups or book clubs. I want to see libraries also use this book to engage with young people, both disabled and non-disabled.
Another aspect that comes across very strongly in the book is about how not everybody with a disability is waiting to be healed, or the assumption that their lives are tragic in some way. Keah Brown writes and I quote: “Unfortunately, we live in a society that assumes joy is impossible for disabled people, associating disability with only sadness and shame. So my joy—the joy of professional and personal wins, of pop culture and books, of expressing platonic love out loud—is revolutionary in a body like mine.” Is this something we should be talking about more?
Absolutely. There are so many narratives about disability not just in YA but in the broader culture that are incredibly hurtful.
There are both negative narratives but also overly positive narratives that are just as damaging. There is a need for nuance and we can’t have that until we have a wider range of people who are being published.
The ideas of joy and pleasure are still somewhat rare and I think it’s overdue that we see all the different facets of the complexity of disabled lives.
The ability to define joy on our own terms is somewhat radical.
I think things are getting better, but we need to see a lot more of this. We need all the variety we can get.
There’s also an essay on incontinence. It’s a disability that is not spoken about as much. If you could, speak about that and why you included that essay in the anthology.
That piece by Mari Ramsawakh was excellent. First of all, Mari speaks out about their experiences as a young person and their experiences at school and the shame they felt. It also talks about some experiences of bullying. I think a lot of young readers will really connect to it.
I personally connected to it because I had similar experiences with incontinence and appreciated the honesty and truth of Mari’s essay because it reveals a lot about their everyday lives that many of us don’t talk about. That’s part of the truth telling. There’s a lot of things that are not easy and I think that’s so much of what it’s like to grow up.
For Mari to really lay that out there about their body, about feeling more comfortable about the way their body works, I hope a lot of readers who are still grappling with their bodies for all kinds of reasons will feel seen in that piece, whether they’re disabled or not.
Alice Wong’s Recommendations:
1) One for All by Lillie Lainoff
2) You, Me, and our Heartstrings by Melissa See
4) Sam’s Super Seats by Keah Brown
5) We Move Together by Kelly Fritsch, Anne McGuire and Eduardo Trejos
6) Books by Emery Lee
(This interview has been edited for length and clarity.)
Alice Wong (she/her) is a disabled activist, writer, media maker, and consultant. She is the founder and director of the Disability Visibility Project, an online community dedicated to creating, sharing, and amplifying disability media and culture created in 2014. Alice is the editor of Disability Visibility: First-Person Stories from the Twenty-First Century, an anthology of essays by disabled people. She is currently working on her memoir, Year of the Tiger (Vintage Books, 2022). You can find her on Twitter: @SFdirewolf.