Joeita Gupta:
I'm Joeita Gupta, and this is The Pulse. The Oxford Language Dictionary defines a memoir as "a historical account or biography written from personal knowledge or special sources." There has been a veritable explosion of disability memoirs recently. The disabled memoirist attempts to tell a story in a way that builds bridges with a reader who doesn't necessarily share in their lived experience. The memoir is, in that way, analogous to a screen reader used by someone who is blind. Like the screen reader, which translates written text to speech to render it accessible for someone who is blind, so too the disability memoir translates the specific experience of the disabled author into words that anyone could understand and hopefully appreciate. Today, we discuss the disability memoir as an accessibility device. It's time to put your finger on the pulse.
Joeita Gupta:
Hello and welcome to The Pulse. I'm your host, Joeita Gupta. My guest today is Andreae Callanan, who is a PhD candidate in the department of English at Memorial University. Her article, View of Legible, Visible, Conspicuous: Disabled Ingenuity and Ability Accommodations in the Disability Memoir, recently appeared in the Canadian Journal of Disability Studies. It's a really intriguing paper and I'm delighted to welcome Andreae to the program. Andreae, welcome. Thank you so much for joining us.
Andreae Callanan:
Thank you. It's so lovely to be here.
Joeita Gupta:
Tell me a little bit about what sparked your interest in the disability memoir.
Andreae Callanan:
Well, my background, as you mentioned, is in English literature. I'm a doctoral student, I'm also a writer. I'm a poet, and my primary area of research is in poetry and autism. I'm autistic. Two of my children are autistic. And I wasn't diagnosed... First, I was diagnosed with ADHD and then later learned I'm autistic. And that didn't happen until my forties. And so for my own personal interest, as someone who's always been a reader and always been a critic of literature, I automatically turned to where I was comfortable, which was people's narratives of their experience. And so part of my self understanding as an autistic person really came from reading the memoirs and first person narratives of other autistic people.
Andreae Callanan:
And so as I was working through my doctoral research and moving towards having to make decisions about what I wanted to focus on, what I wanted to potentially teach, the autism memoir specifically, and then the disability memoir more broadly, really rose to the surface as something that fascinated me for a lot of different reasons and that was really understudied and specifically understudied by people coming from different disability communities. And so that was sort of the origin of my interest in the subject. And then this paper came out of that focus.
Joeita Gupta:
The disability memoir isn't just good reading, although it is of course good reading. The disability memoir also occupies a really special place in the disability rights and activism movement. What sort of a role does the memoir play when we think about organizing around disability justice?
Andreae Callanan:
Oh, yeah. The disability justice movement, as we understand it now, really came out of members of different disability communities, disabled people finally having the opportunity to share different stories of their experiences, both personal experiences and that overlap between the personal and the political. So one of the early examples of that sort of writing that I refer to in the paper is the memoir of Simi Linton, who is an American memoirist and wheelchair user and disability rights activist, whose story, whose personal narrative really did a lot to not just raise awareness of disability justice issues more broadly, but also shift the narrative around disability from the sort of larger, more conventional, mainstream ableist perspective of disability as something that is fundamentally tragic and burdensome and oh, how difficult our lives must be, to recognizing that in every life there is a potential for joy, in disability there are beautiful moments of joy. And so the disability memoir not only put disabled voices into the dialogue, and I mean voices both literally and metaphorically, but also shifted that perspective from, oh, how tragic, all of these people need to be fixed, to actually no, what needs to be fixed are the attitudes and the accessibility measures, not us as individuals.
Joeita Gupta:
Yeah. I've done a lot of these interviews for The Pulse where I've talked to people who've written memoirs, disability activists who've gone on to write memoirs. And I've often asked them who is the intended audience? And they'll say it's for people with disabilities, but it's also for the broader "non-disabled population." Is there a bit of a metamorphosis in the writing or in the tone and the means in which we convey the experience of disability when the intended audience is a non-disabled reader?
Andreae Callanan:
I think there is. And in my study in particular, I'm looking at the literary memoir. So this isn't necessarily auto-ethnography or memoir written to be consumed primarily by the disabled community. But like you say, these are books that are meant to be distributed and read by a broad audience. And of course, when we're looking at mainstream publication, there are all sorts of issues and concerns about marketability and all these different issues that constrain the commercial elements of writing and publishing. So if you're publishing with a mainstream publisher, obviously the onus is on you as a writer and working with your editor to make this something that a broad audience wants to read.
Andreae Callanan:
And I do think that something happens in the writing. So first of all, one of the elements that I look at in the book is the way that what I refer to as the visible and audible markers of disability are reduced on the page. So a writer might be someone whose fluidity of speech is impacted by their disability. But of course we don't see that on the page. And one of the examples I use from sort of a classic book would be Christy Brown's My Left Foot, where the author writes of the incredible difficulty that he goes through in order to grasp his chalk with his left foot, because he is unable to use his hands for that task, to write the letter A. And so we have this description of this incredibly arduous process. But when we're reading it on the page, we're not feeling that, we're not getting the sort of direct impression that it's difficult.
Andreae Callanan:
And so that to me was really interesting, how we could be reading about a moment that requires such effort and such focus, but our experience of reading it is really fluid. And I think that's something that really makes these books accessible to someone who doesn't have maybe a deep first person knowledge of how disability might feel or how it might present in the real world. So, yeah, I think there is something that happens there, where there's a smoothing out of the language. And I think some people might think of that as maybe selling out or maybe downplaying disability. And I see it as absolutely the opposite. I see it as extending an accommodation to allow readers in who don't have those experiences, who don't have anything to attach that to, and then slowly drawing them into the story to give them a more full understanding of what that experience might be like.
Joeita Gupta:
Isn't that interesting? Because often we think about accommodations as something that non-disabled people extend to people with disabilities. Are you saying that the disability memoir takes that relationship between disabled and non-disabled and who's accommodating who, and basically turns it on its head?
Andreae Callanan:
That's how I start the paper, that's my approach here. And to be fair, in my writing, I tend to be a little cheeky and irreverent. And I love identifying these moments where these power structures and these imbalances are inverted. And for me, when I'm reading these books, what I'm seeing is that same sort of spark of irreverence, where the disabled writer of course lives in a world where they, however their disability may manifest, are always having to have the non-disabled world extend accommodations. Because of course, we live in a world that isn't made for disabled people. And so often the disabled people are put in positions of having to ask, having to apply for things, having to go through all these steps just to have our needs met in order to interact with the world. So to then flip that I think is really powerful and I think is a meaningful way of looking at that relationship.
Joeita Gupta:
When I read your article yesterday, I felt blown away by it. I talked to everybody, my husband, my parents, my friends, coworkers, anybody I could get five minutes, and I said, "This is a brilliant article." How do you come up with this idea of the disability memoir as an accessibility device? It is such an incredibly creative way of thinking about the disability memoir. I have to ask you, where did you get your inspiration?
Andreae Callanan:
Oh, thank you so much. That's so flattering, and it's something that we don't often hear in academia, that anyone outside of our departmental world is interested in the work that we're doing. I think part of it, if I'm being absolutely honest, comes down to my own disability. And as an autistic person, my cognitive wiring is just different than that of the average reader and the average academic. So I'm looking constantly for patterns. I'm looking constantly at things in this sort of analytic fashion, which makes me really suitable for academic life. And when I see these patterns come up, my brain just latches onto them. And I'm always asking, "Well, why am I seeing the same attitudes in so many of these books written by different people in different parts of the world in different decades, living very, very different lives, but who are each drawing on different tools that are doing the same sort of thing?" which is offering something to the larger readership.
Andreae Callanan:
And I think one thing too, in looking at the particular books that I chose, because again, this is a literary degree so these are literary texts, and each of the authors that I studied are authors who I think consider themselves writers first, who would be writers whether they were disabled or not, and disability is just part of their world, part of their experience, and one of the many things that they want to write about. And so they're using literary tools that I understand and that I'm trained in. And so for me, I was just looking at these books and this seems so glaringly obvious to me, and so when I was speaking with my committee and with my supervisor, "Does anybody else see this?" They said, "No, but go with it because this is very interesting work." So I think for me, it's I'm tuned that way. And I think that I'm lucky to be in a position where I can then take that tuning and then share it with other people.
Joeita Gupta:
It's such a revelation the way you've sort of structured this. But what it got me thinking about was the slave memoir, and how, if you think about Frederick Douglas or Harriet Tubman, how their memoirs not only provide a first person account of living under slavery, but they also became very important in the fight to abolish slavery. What then would you say is the expectation from a non-disabled reader of a disability memoir? Is it enough to just like the book, be inspired by it? Or are you hoping for more?
Andreae Callanan:
Wow, that's a fantastic question. And a heavy question, of course, because yes, who is the burden on to make these changes? I would hope... I have difficulty with the term humanizing the disability narrative, because of course we are human, to be disabled is part of the human experience. So you can't humanize what is already human. Likewise with the slave narrative. But, I do hope that reading these sorts of books... First of all, part of so many of these narratives is how close each and every person on this earth is to disability. Often we speak in activist communities, the disabled and the not yet disabled rather than the non-disabled. People refer to it as the subculture that anyone could join at any time. So for me, I would hope that reading disability memoirs would in part help non-disabled people recognize that the differences between our lives in many material senses are large, but in a truly human sense are minimal in a lot of ways.
Andreae Callanan:
And I would hope that once those wheels start turning, when the non-disabled reader recognizes how much of the world these difficulties impact, these structural difficulties impact, they can start to see them for what they're and maybe start to use whatever their power is to make changes. And that could be anything from lobbying your municipal government to make infrastructure more accessible, to if you are a teacher, to creating your course syllabi and curricula in ways that include a broader range of voices. I would hope that readers would take that and would advance these conversations in whatever ways they can.
Joeita Gupta:
Going back to the paper, in the paper, you do this really interesting thing where you talk about the memoir within a memoir, so this idea that people with disabilities almost relying on better known illnesses to make a point about a particular disability that may be lesser known. Could you explain a little more about that?
Andreae Callanan:
Yeah, that was a pattern that I saw come up in a number of texts where... Because I think those of us who are in different disability communities and who are disabled recognize that we seldom ever only have one condition that we are living with when we look at what we call comorbidities between different sort of recognized disabilities and then other things like depression, anxiety, trauma, all of these sorts of larger issues, addictions issues. You can look at those statistics and those are pretty clear that disabled people tend to also experience these other perhaps harder to put your finger on conditions and experiences.
Andreae Callanan:
So for example, one of the texts I looked at was by the British memoirist Jenny Diski, and her book is called In Gratitude. And she's writing about... It's essentially her memoirs towards the end of her life. She was diagnosed with lung cancer. And she would sort look back on her life, and as she's going through this memoir, you're picking up, "Oh, this isn't a cancer diary at all. This is about her life of trauma. This is about her being in and out of institutions. This is about her dysfunctional family." But by framing it with a... We already have a fairly good understanding culturally of what cancer is, what that experience is like. Over the past decades, we've learned a lot about cancer, and that's something we can grab onto and use as a framework to pull through these other more difficult, less biological, more sort of frustrating and perhaps, I don't want to say more frightening, because I think for a lot of people, any of these things would be disruptive, but more nebulous sort of conditions.
Andreae Callanan:
And I thought that was really interesting when I saw that come up in three or four different books that it was about one condition, but really when we looked past it, we were dealing with these other conditions. And that to me seemed very, very... As a writer, I looked at that and went, "Oh, that's very savvy. That's a really clever way to deal with something so complicated and multifaceted."
Joeita Gupta:
We started talking towards the beginning of the conversation a little bit about the autistic memoir. And tell me a little bit about what makes the autistic memoir particularly interesting to you. Because we didn't really talk about Eli Claire, but Eli Claire is a major influence in your paper, in your journal article. And Eli Claire was at one point diagnosed with mental retardation. But if you read Brilliant Imperfection, he is absolutely amazing. And it's a really well written book. And I think it runs counter to that diagnosis. So the book itself shows us that there's a difference between what is being said about Eli Claire and what we know to be true about Eli Claire. Does that sort of thing also happen for authors writing autistic memoirs or does it get more complicated?
Andreae Callanan:
I think it is a little more complicated. I think there's a relationship between those two things. And I do, in the book, position Eli Claire, you're right, sort of as an entry point to my conversation about the autistic memoir. Because the autistic memoir... First of all, if you just look up autism memoir, autistic memoir, it's dominated by parents and caregivers. It's only been in recent years that autistic authors have had the opportunity to share these stories in book form and have them circulated. And typically, if we look at the diagnostic history of autism and the rhetoric around autism, autistic people, and I'm using air quotes here, aren't supposed to have the sort of introspection, the sort of language skills, anything required to write something like a memoir. We're not supposed to have that degree of subjectivity. Which of course is patently false. We know this. We know that autistic people have subjectivity. We know that we can write our own memoirs. We know that we write our own minds or that we know our own minds.
Andreae Callanan:
But there's so much resistance to this notion of autistic people writing authentically from our own experiences that even writing a memoir is itself a subversive act. But, it is also complicated because where I look at Eli Claire's memoir as disproving the diagnosis of mental retardation, which again, I'm using in quotes, that was the diagnosis that Claire was given at the time, with the autism memoir frustration, what it really demonstrates is that the cultural narrative around autism is wrong. And I think that autistic people have been fairly unified in this. If there's one thing we're unified in, it is in the belief that what the world knows about autism is incorrect. And I think again, disability experiences are so broad and so different in so many ways, but I think the one thing that is unifying is the difference between how we experience our own lives and what the larger world, even the medical world, tells us about what our lives are like. And that's the value to me in these memoirs, to correct that narrative and to offer nuance and depth to the narratives.
Joeita Gupta:
And the memoirs are savvy. It's a way of almost extending one could say accommodations to the non-disabled person. These memoirs, and writing them, become acts of resistance. But do you think we'll ever get to a place where we could have a disabled memoir written in a disabled voice that doesn't necessarily need to adhere to these normal, for want of a better word, conventions around writing and speech?
Andreae Callanan:
That's a good question. And again, so much of it is tied up in the way the publishing industry works and what the expectations are and what the requirements are. One book that I point to right at the end of my article is a memoir called Memoir of a Black Aspie by Anand Prahlad. He's an American memoirist who is autistic. And that's one book that I see as very much not catering or not offering these extensions to the non-autistic reader, but it's also a book that has not received wide enough distribution. It's published with a university press. It isn't occupying that same space within the sort of industry of publishing. I would love to live in a world where the experiences of disabled people, the varied experiences were talked about so much that non-disabled people didn't have to be offered these ways in, that this was all sort of second nature to us. So maybe once these memoirs and everything else, of course, disabled people should be able to write anything we want to write, it shouldn't have to be memoir, but once these narratives grow, and they are growing, then maybe we won't have to make so many of these accommodations. Maybe that will already be there.
Joeita Gupta:
I'm just curious. Do you think... We've talked about the memoir today and it's a very specific way of engaging with an audience, but there are other ways in which people with disabilities engage, particularly performance pieces. Do you think your concept of the memoir as an accessibility device could be applied to, let's say, a performance as an accessibility device? Or am I overextending the argument and the usefulness of the concept?
Andreae Callanan:
No, I think you're absolutely correct. And I do speak in the article about the American theatre maker, Neil Marcus, who passed away at the end of last year, who was really instrumental in bringing disability arts into the performance space of the theatre. Here in Newfoundland, in Labrador at Memorial, we've got a wonderful scholar, Leah Lewis, who has done a fantastic performance piece and continues to work on it, about her experience. It's called The Dialysis Project, and it's about her experience with using home dialysis equipment through her life. And that's fascinating as well. So I do think that performance absolutely can do a similar thing. In some ways it's more difficult, because of course, performance is limited to you being in the room with the performer or having access to a video or audio representation. Whereas, books are so much more easily distributed. There's a wider berth of people who you can reach with them. But I think that all of these, any sort of arts-based practice has that potential to reach out to a large audience and welcome people in and say, "I'm going to meet you where you are. I'm going to offer you a way into my life. And I would hope that you would offer me the same with a way into your building," in some cases.
Joeita Gupta:
We only have about a minute or so left. I just wanted to ask you where you'd like to see your research and your ideas develop in future.
Andreae Callanan:
Wow. Having conversations like this is really exciting to me. I love my academic work, but for me, conversations with the larger world are really exciting to have, any sort of public engagement and public discussions around these issues, because obviously disabled people are members of the public. And I love writing my books and having them on shelves, but I really want to see conversations like this happening all over the place. And book clubs arising would be a wonderful thing to happen. I would love to see more casual chat.
Joeita Gupta:
Now we should mention you have a lot of bookshelves and books right behind you. So I would be remiss if I didn't ask you for at least one disability memoir recommendation for the audience.
Andreae Callanan:
Oh my goodness. Where to begin? Oh, where to start? You know what, and this is not one that I have included in this essay because it came out to recently, but I just finished reading Hannah Gadsby's Ten Steps to Nanette, which is just outstanding. Gadsby talks about her late in life diagnoses I believe with ADHD and also with autism, and also goes through a fantastic history of her life growing up in Tasmania and the shame and oppression that she sort of grew out of to move into this beautiful career. And she talks about putting her own accessibility needs into her show. And that is, from a structural standpoint, is a fantastic thing to read. So I would highly recommend Ten Steps to Nanette.
Joeita Gupta:
Well, thank you very much for chatting with us today. It was a pleasure getting to talk to you, Andrea, and congratulations on the article. I wish you all the best in future.
Andreae Callanan:
Well, thank you so much. It's been so lovely to speak with you.
Joeita Gupta:
Andreae Callanan is a PhD candidate in the department of English at Memorial University. That's all the time we have for today. If you have any feedback for us, you can always send us an email, righttofeedback@ami.ca. You can also give us a call at 1-866-509-4545, that's 1-866-509-4545, and leave a voicemail as well as give us permission to play the audio on the program. You can also find us on social media @AMIAudio is our Twitter handle. Use the hashtag #pulseAMI to tweet. And you can also find us on Facebook at Accessible Media. This show is available as a podcast on your favorite podcast platform. I invite you to like, rate, and subscribe. And very recently the show is now also available on YouTube. If you're joining us on YouTube, please don't forget to subscribe so you can have more content sent your way and you know when another video goes up. And use that comment section down below to let us know what you think of the programming.
Joeita Gupta:
Our technical producer today is [inaudible 00:30:07]. Our videographers are Ted Cooper and Matthew [inaudible 00:30:10]. Andy Frank is the manager of AMI Audio. On behalf of the team, I've been your host, Joeita Gupta. Thanks for listening.
