Reflections on disability culture and identity from the contributors of the Disabled Voices Anthology

Some people may find the title of this anthology a little controversial, but as the Editor sb. smith explains in her Introduction, “The title of this book simply came from a literal explanation of what the book is: voices of Disabled people. I never thought to change it from the working title of Disabled Voices Anthology because the last thing our community needs is more euphemisms or mincing of words. I felt the title needed to be a firm presentation of the book’s contents and a means to bring its creator’s Disabled identities to the forefront […] Even more, the title—our title—is important because it means direct visibility for Disabled writers and artists. It means we are putting ourselves and our work into the world, intentionally and unapologetically. We are intending for our voices to be heard, to be recognized.”When disabled author Leah Lakshmi Piepzna-Samarasinha wrote in her foreword to Disabled Voices Anthology about the challenges of a disabled writer or reader looking for disabled writing she said, “There is just so much bullshit to claw through. You want to read writing that tells the story of the nuts and bolts of your ordinary, amazing, cripped-out life—or you want to write that writing. You want to go beyond the 101, to write the weird shit, the shit that only other disabled people (sometimes) get, to write all the things being disabled, Deaf, Mad, sick and/or neautodiverse or DID have taught you. You want to write disabled stories, and read them, and have disabled conversations […] But when you try to get your work published, with rare exceptions, you run into the wall. The wall of ableist crap. The wall that can only understand disabled stories as heartwarming, or tragic, or both. The wall that can’t go any further than the bare minimum of Disability 101.Disabled Voices Anthology is a crucial part of our new and old traditions: not apologizing for ourselves or writing for the abled, not translating or making ourselves small, but an unapologetic, vibrant part of that krip literary future that is now.”

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Rebel Mountain Press: Why was having your voice included in the Disabled Voices Anthology important to you?Kelly Bron Johnson: As a disabled person of colour, it was important to me to make sure all types of disabilities were represented, especially across Canada.Marrok Sedgwick: Disability Justice is a growing movement that intentionally works to decenter white, cisgender, heterosexual disabled people. As a white, queer, nonbinary transmasculine person, I recognize how important our movement is, and feel that we need every voice we can to ensure that decentering is successful.Michaela Oteri: This book is so important because our voices are very rarely shared in such a way. When I was approached about the project I absolutely fell in love with the idea. Having my drawings together with such powerful and important disabled writers and artists is an honour. Jennifer Lee Rossman: I was raised to believe that my having spinal muscular atrophy and using a wheelchair did not make me any worse than normal kids. But at the same time, my mom called other kids normal, and even though supposedly it was not bad to be disabled, it somehow meant less to be included in things specifically about disabled people. If I was good, I was told not through words but through attitudes, I could be in publications with normal people. That’s why this book is important to me. Because we are good, and we are normal.Deborah Chava Singer: I came out as queer a long time ago. Disability, for me, was a really different journey, a much longer process, too. I had this thing, that affected my daily life, my work, and my ability to live on my own. I felt very judged and misunderstood (still do), and very lonely. It took me a long time to name that thing as disability and claim it as a part of my identity and life. It took me a long time to write about it, at all. I realized I have this thing that is a huge part of my life and I’m a writer, I write about everything big in my life, queerness, depression, but for years I left this thing out of it. I started just writing about the physical pain because I was trying to figure out how to even describe that part to other people, then how I felt about its impact on my life, but mainly of loss of autonomy, internal frustration, that part of the journey. It was very inward. Only recently have I come into owning this as a part of my identity, to writing about it more externally, looking at my frustration with feeling judged and misunderstood, navigating asking for help for something that is invisible, but very present, to writing about how I want society to change. I spent a long time worrying about whether what I had counted as a disability, of feeling the need to qualify it and explain it (and I still sometimes do). It took me a long time to be able to say this thing that’s going on is that I have a disability and let myself own that.Susan Mockler: I valued the opportunity to contribute to an anthology that presents the work of Disabled writers whose voices are often excluded or reduced to stereotypes in literature, art, and the larger culture. This anthology provides a space that recognizes and validates a broad range of Disabled experiences and fosters a sense of community and identification for Disabled individuals. Sharing Disabled perspectives will hopefully encourage understanding, empathy, and increased awareness among all readers as well as challenge stereotypes and dispel myths related to disability.Lara Ameen: It’s important because disability is the most diverse minority category that exists. It’s important to have my voice included as a multiply marginalized disabled person because my experience is one experience, but it’s not the only one. Also, sb. smith was a fantastic editor to work with and I knew she wouldn’t cater my story to the abled gaze and allowed the story to be what it was supposed to be. Isabella J. Mansfield: Disability is just not well-represented in media. The fact is, every disability is different, and every experience with disability is different. Even if I met someone with the exact same disability I have, at the exact same level of the spine, our presentation may be completely different. What I feel, they may not. What they can move, I may not have control over. The faces—and voices—of the disabled community are so varied, and I think it’s important to share our experiences. I was paralyzed at the age of twelve, and during a time when I probably needed it most, there just wasn’t anyone “like me” out there, no one I could “look up to.” It is rare enough that disability is under-represented but women with disabilities especially. I needed to see women with issues like mine, and it just didn’t exist. I went to Showchoir Camp when I was fourteen, and I was the first person to attend that camp in a wheelchair. The choreographer for our group had to completely rework his plans to include me. The entire college campus where we spent two weeks was almost completely inaccessible. I needed help to get into every building and I felt terrible asking for help. I don’t proclaim myself to be a trailblazer, ever, but being the first person to do something, or go somewhere, is not always a fun or positive experience.As a poet, I don’t exclusively write about my disability, but I recognize that I am in a position to teach the community, the readers or listeners, about how ignorance surrounding disability culture can frustrate, even harm those of us within the disabled community. How frustrating it can be to enter a public restroom and find it inaccessible (or in use by someone who doesn’t need it). How demeaning it can be to have help forced upon you, when you don’t ask for it or don’t need it. How isolating life can be when you’re constantly singled out, steered to a back entrance of a building, a separate, segregated section of an audience or told, “I’m sorry, our venue is not wheelchair accessible at all.” Cathy Bryant: Disabled voices are often excluded from various platforms of expression, and it was important to me to have my voice (and others) heard, in a safe space that keeps us, for once, centre stage. Often I miss out on gigs that are upstairs or in basements—since the Arts funding got cut in this country (U.K.), many people are excluded from live performances. There are some wonderful inclusive events, of course, but when the media talks of poetry, they’re usually excited about a bouncy able-bodied person rather than a disabled person. This needs to change. The Disabled Voices Anthology is helping this to change.Jan Steckel: It took me a long time to acknowledge that I was disabled. I effectively became disabled by severe chronic left leg and hip pain around 1991, but I didn’t apply for and receive disability benefits until 2007. The Disabled Voices Anthology is part of my ongoing coming-out as a disabled person. Reading the work of other disabled writers helps form my consciousness of my identity and rights as a disabled person.

by Michaela Oteri

 RMP: What do you think are the biggest misconceptions about Disability culture, community, and identity?Kelly Bron Johnson: One of the biggest misconceptions is that our lives are not worth living and that we have nothing of value to offer the world. The second biggest misconception is that we are dangerous. When people see someone acting or moving differently, or who just looks different, we often strike fear in people. Different is not dangerous, it’s simply different.Michaela Oteri: That we don’t have voices to begin with. That we don’t have important and powerful things to say and contribute. Disabled people have been through so much pain and hardships just by living in the society that we do and what we have to share matters.Marrok Sedgwick: I am a DeafAutistic person, and an educator. I work with the students placed in what the United States refers to as “Most Restrictive Environments” (MRE). An MRE is a segregated environment for students who are deemed unable to benefit from more inclusive environments. I have noticed that the parent and educator communities whose kids and students are placed in an MRE often (with exceptions, of course) seem to think disability cultures, disability communities, and disability identities are not applicable to their students. These skeptics seem to believe that disability culture, community, and identity (especially prideful identities) are for other disabled people. This misconception is even present within disability cultures and communities, such as when disabled activists use claims that their “minds are fine” as evidence that they should be integrated into their communities. Activists such as Mel Baggs, may hir memory be for a blessing, and Amy Sequenzia have a history of fighting these misconceptions. They teach us that our right to be members of our communities, and our ability to have disability identities, are not based in whether or not we have a certain IQ, or the ability to do this or that cognitive function, but based on the fact that we are human. I see their words reflected in my students every day that I have the privilege to work with them. I see it in the friendships they build with one another. I see it when they ask for and refuse help from my coworkers and me. I see it when they nod vigorously behind the backs of a coworker speaking about them, “we are lucky to have him here because he is destined to die by the age of 25.” (Is that not evidence of pride and identity?) And I see it in their noncompliance, whether that looks like sitting down in a doorway and refusing to get up, or throwing a puzzle on the floor. Whether their identities, cultures, and communities fit what some disability studies scholars like to describe as Disability Culture or Disability Identity is irrelevant to their personhood, and their clear disability identities, communities, and cultures.Jennifer Lee Rossman: That we’re something to pity, a punishment for moral failings. That we’re plot devices instead of characters.Deborah Chava Singer: I think the biggest misconception is just not even being aware that there is a culture, community, and identity. I think so much depiction of disability doesn’t get past what someone can’t do for themselves (unless we’re villains), it just hasn’t occurred to most people that there is a culture-producing community or disability rights movement. There is just a lot of invisibility that needs to be dealt with, which is how we ended up with this straw situation. People were well-meaning but they stigmatized and, in many places, banned an adaptive device. Even after protest, even after it was pointed out why drinking straws are necessary for some people, accessibility was taken away, access to public life was decreased. If it’s so difficult to recognize the people that are there, you aren’t going to see the culture and community they can produce. Susan Mockler: Some of the biggest misconceptions about Disability culture, community, and identity that I have observed or experienced directly include the following:a)     Disability defines the whole person. This contributes to objectification of the Disabled and is related to a failure to present or view a person with a disability as multifaceted, complex, driven by desire, and subject to the full range of experiences and vagaries as all humans.b)    Disability or those that share similar experiences of disability are a homogenous group. This minimizes individual differences and fails to recognize the plurality of experiences of Disabled persons.c)     Disabilities are visible. This precludes recognition of disabilities that can be considered “invisible” and locates the experience of disability to the external observer invalidating the actual lived experience of the Disabled person.d)    Disability is dichotomous. A person is either “Disabled” or “able-bodied”. This misconception contributes to an experience of being “other” for many Disabled people and potentially creates distance and prejudice towards the Disabled. But “ability” is a continuum and ultimately “able-bodiness” is a temporary state.e)     Disabled people are limited in all abilities and capacities. Related to this misconception is a tendency to treat the Disabled as lacking agency, unable to speak for themselves, helpless, and dependent. This can lead to actions such as infantilizing the Disabled (addressing Disabled adults as children in tone and word choice, praising ordinary behaviour as exceptionally heroic), ignoring the Disabled adult and speaking to an able-bodied companion in their stead, and disrespecting boundaries around privacy and autonomy (e.g., providing assistance without asking).Lara Ameen: No two disability experiences are going to be exactly the same, even if people have the same disability. We’re not a monolith. There are ranges of disability experience and a lot of disabled people experience internalized ableism because they don’t have a supportive community around them. I also think some big misconceptions are that everyone in the disabled community supports one another, which I have found not to be true. Just because someone is disabled doesn’t excuse them from being a rotten person. Disabled people are human beings and some of those human beings can be rude assholes. Since the disability community is so diverse in terms of race, ethnicity, religion, age, gender identity and sexual orientation, I think we need to do a better job of looking out for one another and being supportive of each other. Be kind. Isabella J. Mansfield: I’m always shocked and annoyed when people say, “Oh! My cousin’s in a wheelchair, do you know Tom?” as if the population of people with disabilities is so small that we all must know each other. One in four adults in the US has a disability. The community is larger than people realize. I also find it frustrating when people compare their experiences with temporary injuries (“I spent a whole summer on crutches, I totally get what you’re going through”) with my disability (I’ve been in a wheelchair for 27 years). While I understand that a person is just trying to find a connection, they are really not at all connected. The experiences are not the same and it can be off-putting.Cathy Bryant: That we are helpless, humourless and futureless—that we are, in brief, LESS. That someone in a wheelchair is completely paralysed, so that if you wiggle a foot, or stand up, you must be a fake. That if we don’t have one of the conventional senses, then we develop superpowers in others. That we aren’t fun. That we never work. That we take and don’t give. That we are a drain on the economy. That we have nothing to add. I see these attitudes all the time, and I’ve internalised some of it. This needs to change. The Disabled Voices Anthology is helping this to change.Jan Steckel: I think the rise of Zoom conferencing during the pandemic has shown that accommodating people’s disabilities was never that hard—it was just that the abled didn’t want to spend the time and money. I remember being told that “the needs of the many outweigh the needs of the few” as an excuse for not accommodating me. It was never that the needs of the many were in conflict with the needs of the disabled, though. It was that they just didn’t want to be bothered with our needs. They didn’t want us to play with them. Now they’re going to have a harder time making that excuse.  

by Michaela Oteri

RMP: Historically, a lot of Disabled stories are either inspirational or tragic — the CripLit genre aims to challenge those clichés and erroneous depictions. What do you hope readers of Disabled Voices come to understand about the Disabled community?Marrok Sedgwick: I want people to understand that disabled people are just as human as all other humans, and we deserve to be respected, loved, hated, debated with (but never about), learned from, taught, missed when we are gone, and otherwise fully integrated into the human community in ways accessible (according to our own definitions) to our corporeal and spiritual realities. Michaela Oteri: I hope that readers learn to accept and see disabled people as people who are complex. We aren’t props to make people feel better about themselves, tragedies that need pity, or dolls to be infantilized. Our struggles are real. We deserve respect and to be taken seriously. Jennifer Lee Rossman: Disabled people are different than non-disabled people. We interact with the world differently, and the world interacts with us differently, so of course our stories are going to be different. But we still want the same things. Friendship, romance, revenge, justice, happiness, dinosaurs. And we all deserve those things, if we want them. Kelly Bron Johnson: I hope they see our humanity, our diversity, and our agency. We have full lives, and we don’t exist for the inspiration of others. We are not born to “make people better” or inspire anyone. I hope people can discover that we have varied opinions, talents, and experiences. I do everything “with” my disability and not “in spite of” it. Most of all, I simply hope people enjoy the writing and the art because it’s cool. Deborah Chava Singer: I guess I relate it to the queer community, because that’s where I’ve spent a lot of my life.  Years ago, anything positive in the mainstream was wonderful, because we had so little, scraps, when it came to being represented in mainstream movies or TV, so best friend narratives (usually single gay best friend), coming out and discrimination stories, yes, thank you.  But now, we want more.  We want to be the protagonists, with full, complicated lives that extend beyond telling straight people we’re queer or straight people being mean to us.  I feel like a lot of disability that is depicted in the mainstream is about someone else.  Often it comes from outside disabled people and it centers on someone else’s experience. I’ve been very frustrated with the ongoing US election for a lot of reasons, but watching the Democratic primary debates, in one that I saw, we finally got a question about disability and the conversation seemed to be mostly about parents of disabled kids and I ended up yelling at my TV (it happens), you know who you’re forgetting to talk about in your disability discussion—the people who have the disability. We have our own voices, our own stories. We want to be the protagonists, but not for you. I’m not here for you to reflect on what you do or don’t have, or to learn to appreciate your own life. We want to be the protagonists because why shouldn’t we have our own stories too? Susan Mockler: I hope that by presenting the stories of Disabled writers, readers will gain an understanding of the diversity and breadth of experience of Disability and come to recognize that identifying as Disabled does not exclude the multitudes of human experience that we all share. I hope it will encourage readers to examine and explore societal and cultural assumptions, prejudices, and discrimination towards the Disabled and reflect upon their own preconceived notions, judgments, and behaviours. I would hope that such increased understanding and awareness would work towards facilitating attitudinal and behavioural changes and help promote decreased marginalization and greater equity for the Disabled.Lara Ameen: We are people and many of us in the disability community are proud of our disabled identities. We live varied lives. Some of us go to school, some work, some are bedbound or homebound. But disabled people have lives that are worth living and fighting for. We just may do things a little bit differently and that’s okay. Our existence matters. Our experiences are diverse and we deserve to be treated with respect and dignity. Isabella J. Mansfield: I want readers to know that people with disabilities are often not as helpless as we are portrayed in media. It is because of our experiences that we often have to find creative ways to manage our needs, and as a result, I think people with disabilities are often more clever than people expect us to be. I take issue with the word “inspirational” because people throw it around too easily. It’s easy to say “wow! you’re an inspiration” but it needs to be for the right reasons. I can recognize that I can be inspirational when I’m putting in the work at the gym; I do not consider it inspirational when I’m running errands, grocery shopping, living my daily life. If you wouldn’t say “wow, you’re inspirational” to an able-bodied person at the grocery store, don’t single me out for the same thing. I hope that readers come away with at least a little insight on how, while our experiences with being disabled may be different than each other’s, and different than the life of an able bodied person, at the end of the day, we’re all still people, our thoughts and feelings all have value and a place in this world, and our voices deserve to be heard just as much as anyone else’s.Cathy Bryant: That we are people! That we are interesting, even fun! That we aren’t just for inspiro-porn or tragedy-porn, but that we have real lives. And they’re often far more interesting than those in the mainstream. I’m hoping that anyone who reads the Disabled Voices Anthology will come away from it with a greater understanding, not just of the trials and tribulations of disability, but also understanding the unique and fascinating viewpoints from the community, and what important human stories are within these pages.Jan Steckel: That we are just as diverse and brilliant as any other literary identity group. That we aren’t heroes or martyrs—we’re human beings who deserve all the opportunity and respect accorded to members of the majority culture.

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Thanks so much to Rebel Mountain Press and the contributors of the Disabled Voices Anthology for their insights and reflections.