Hello!

How are you, you lovely lot?

Thanks so much for your patience while I took a break last week - I am feeling much better and very excited to bring you some really great content over the next few months.

Today feels like the first day of term at The View From Down Here, and how better to mark it than with an extra special guest interview?!

I am so excited to share this conversation with the lovely Rebekah Taussig, author, speaker and disability advocate.

Ever since I read Rebekah’s incredible memoir, Sitting Pretty, I have hungrily lapped up her words wherever I could find them. Her ability to conjure and capture the intricacies of disabled life is unparalleled - I know I’m not alone in finding her writing a rare example of true representation.

It was a complete joy to get to know Rebekah a little more in this interview and to find we have much in common. As with all brilliant interviews, we ended up having more of a friendly chat than a traditional Q&A (some extremely personal stuff has been edited out by mutual agreement.) Hearing about the life experiences that feed Rebekah’s work and witnessing her passionate belief in the power of storytelling was so nourishing for me as a disabled writer, and I hope it will be for you too.

I’ve been thinking of this interview as the first woolly jumper you pull on when the air goes crisp and chilly. Read it with a hot drink and let it warm you.

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This interview has been lightly edited for length and clarity.

LW: Rebekah, thanks so much for being here! I have to start by saying what a huge fan I am!

RT: Thank you!

LW: I think a lot of my readers will know you from your book, Sitting Pretty, which I am so excited to talk to you about. And selfishly, as a first time author, I’d love to hear how you did it! But firstly, can you introduce yourself and what you do?

RT: Who am I and what do I do? Gosh. I’m Rebekah Taussig. I guess I would say - how do I make this brief? - I'm a writer. I write a lot about disability. I started writing about disability in graduate school. I went to school and was getting my PhD in English Literature. And while I was there, just before I dropped out, I found Disability Studies and there was so much meaning in that. I felt really drawn to spend my energy in that space and thinking about those things and writing about those things. I started writing about it in my grad programme, and then I took that to Instagram. Which is probably where we found each other! So I started writing just these tiny snippets of life from this position of disability. And posting photos that included disability and didn't try to hide it or minimise it. And then that space just evolved and I loved being there. I love connecting with people who had some connection to disability as well - because I grew up in a world where I didn't have that sense of solidarity or understanding. And then that evolved into a book, which we can talk more about. So I wrote the book while I was teaching high school. Wait. This is too much information.

LW: No, it’s great!

RT: I was teaching disability studies to a group of high schoolers, and so it was kind of a flurry of trying to get it done in all the cracks. So like on weekends and on winter break and that kind of thing. And then that day - less than 24 hours after I submitted the final manuscript for the book - I found out that I was pregnant. And then seven days later, we found out that my partner Micah had cancer and and then a few months after that it was the pandemic. And so, like a lot of people in the last few years, we've just had a big massive transition through all of that. So yeah, my son is two now. It's wild. And in that time I transitioned away from teaching high school. And I'm writing and speaking and consulting now.

LW: Woah, that’s a lot to happen! I love seeing Otto in your posts. But before we get to that, I’d love to just focus on your writing. You mentioned the importance of getting to know other disabled people; how is that part of your work?

RT: It goes back to that sense of connection and wanting to be a part of a community of people. I think one of the things that's unique about disability is often - not always, but often - we’re born into families that don't understand our experiences. Don't have a roadmap for what this should look like and don't know the places and don't know the resources. Don't know the history. So I think that has been a big part of my ride; connecting with that world and with that history.

sitting_pretty

A post shared by Rebekah (she/her) (@sitting_pretty)

LW: I feel like so often we’re denied that community because we’re just not exposed to it. What was your experience of that like growing up?

RT: I didn’t meet anyone in the same boat as me until college. I lived at home and went to community college, but my boyfriend at the time was a twin, and the other twin went away to college, and he met a girl with a similar disability to mine, and basically brought her home with him. And that was like the first time I found out you could get help or apply for benefits.

LW: Because no one ever tells you!

RT: Right? I’d been going to doctors my entire life and no one had said anything! So I guess that was maybe my first connection and it was a big shift for me to know her and see her and connect with her and also learn from her. But I think the bigger shift for me came with finding people on Instagram. Mostly just because it was more people. And it's so interesting, the intimacy of Instagram, because there's this way that you get to know people really deeply and also you don't know him at all. But I think I just learned a lot from people and felt so connected to a bigger thing.

LW: Totally. There’s such a difference between knowing a few disabled people and being part of the bigger community.

RT: And that led to a different purpose in my work, like wanting to make space for portrayals of disability that were nuanced and true.

LW: Can you talk a bit more about how you started writing about disability? Is this what you always wanted to be doing or, like so many of us (me included), did you kind of fall into it?

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RT: A little of both. Honestly, it might have been 50:50. After I went to that junior college I pretty much got married. I was just really overwhelmed and afraid of how to navigate adult life and this felt like a safe way to do that somehow. It felt like I would be cared for and that was a huge relief to me. But it was really not a good thing. It was not a good marriage, was not a good decision. So then I got divorced, which in my world, in my family, in my community that I grew up in, was a really big deal. It was huge, like nobody got divorced. It's not an option. And so it was very messy. And when I did that, it sort of just set me off on a different path. There was a way in which that really empowered me - to decide for myself what I was going to do and what I cared about. And what I wanted my life to look like. And also I was still overwhelmed about applying for jobs, you know, still overwhelmed about going out into the world. There was still a way in which staying in a school and in that environment that felt safe. So I went to grad school and, like I said, found Disability Studies and started writing about disability.

sitting_pretty

A post shared by Rebekah (she/her) (@sitting_pretty)

LW: And how did the book come about?

RT: So I was writing on Instagram like we talked about earlier and a literary agent reached out to me. She also has a disability. I think she was just really hungry for the publishing world to have more voices that were giving this very real account of disability and not some sort of like caricature of something. Not inspirational or triumphant or devastating but something just true and honest. And, also, I don't know, like playful and particular to one specific person's life. So she helped me put together a proposal for a memoir… And in my mind, I thought “Well, that'll be easy. Because I've already written so much on Instagram, it's just really going to be like some light revisions.” So we sent out the proposal. And there was just one editor that I felt, far and away, the best about. I felt really empowered by her. I felt like she really knew what I wanted to do and why it was important. And so that was the editor I went with when she was at HarperOne.

And then yeah, the rest of the book process… So originally, the way I pitched it was: there will be thematic chapters with a bunch of minute mini essays in them that would almost resemble fleshed-out Instagram posts. And my editor felt like it would be better to do cohesive chapters. So that's what the book ended up becoming. Each chapter has a different theme that we're looking at, but it's one cohesive essay that like weaves in personal story and more philosophical thought. And that was a lot of work. More than I anticipated. But of course it was - because when is writing a book ever just like “no problem”? I felt like I should’ve be given three years to write this book. And they're like, how about six months? I think I was able to get them to go to nine months because I was teaching high school and I was like: “There's no way I can write this in six months”. I finished writing it, but then we found out about the baby coming and Micah getting cancer. They were like: “Let's push the release date”. Originally it was supposed to come out in June, and then it ended up getting pushed to August because my baby was coming in May. So it's just a whole wobbly timeline. It all takes longer to actually become a book than I ever would have realised. Even though it felt like the writing process was very, very fast.

LW: I’m in the middle of this wobbly timeline right now. How did you find the actual writing? Your book is so honest, what was that like?

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RT: People kind of have this hazy idea of how difficult writing a book must be. Or I guess some people probably think it's easy. But I will say, it's some of the heaviest mental labour - and also physical labour. It's just like a really heavy weight in your brain. And I think with honesty it’s a mixture of things. Part of it is that I’m an oversharer by nature, so it was kind of instinctive. But I think part of it was craving, craving to be seen. In the way that I wanted to be seen, you know, like in a way where I was in charge and I was doing the revealing, so that you would see and know me the way I want to be known. I feel like a lot of my story throughout life is just having stories written over me or for me, people deciding before I get a say.

But I think as I have been in that space longer, and and I've gotten older, I think I'm more careful about what I'm honest about. So whatever I share is going to be honest, but I'm not just going to share anything. There are things that I hold closer to me and I’m more hesitant to share or won't share. Because I I know the gift of what it's like to be seen, but I also know the - I don't know - the discomfort of being seen. And there are things that I don't want to share and I've been I guess I'm becoming more mindful of what those things are. I think especially since becoming a parent, or writing about motherhood. It feels like a totally different thing to me.

Here, Rebekah and I talked a lot about disabled motherhood; the assumptions foisted upon disabled women, the resulting self-doubt, and the ways in which both society and the state itself make disabled parenting a huge physical and emotional challenge when it needn’t be. We’re keeping a lot of this conversation private, but one thing we’re both happy sharing is our longing for more representation.

Rebekah told me that she often questions whether she should write about her experiences as Otto’s mum. She worries about his inability to consent to having his life shared, and about the reaction that inevitably comes when she writes about disabled parenting. But she continues to share - mostly about her own thoughts, rather than about Otto himself - because she knows that it was seeing just one disabled parent on Instagram that made her current life feel like a possibility. And she wants other disabled people to be empowered like that, too. It was lovely to be able to tell her that she and Otto have made me feel better about my own future, and while we’d never met before, talking about this stuff with Rebekah was like the big, life-sustaining gulp of air you take after holding your breath under water for just a moment too long.

sitting_pretty

A post shared by Rebekah (she/her) (@sitting_pretty)

Of course, almost all of the problems faced by disabled mums are because they are invisible. And because they’re invisible, they are assumed to be non-existent, so when one comes along it upsets people’s notions of what it is to be a parent, of what is possible and what is not. But as Rebekah pointed out, this is kind of nuts, because there are disabled mums everywhere. We need better stories. And so, we need to write them.

Let’s rejoin the conversation.

LW: I sometimes wonder if this need to tell new stories - or at least resist the ones forced onto us - is why so many of the disabled people I know are writers and storytellers.

RT: That's a pretty cool thought. That just this whole group of storytellers has come out of nowhere; sprouting. Like I don't know, I had this picture of just this whole group of artists and storytellers who are putting new stories and true stories and complicated stories of disability out in the world because they are not there yet. We just don't have them. And because we've grown up in a world that erases those stories, or just gives us the most horrific and trite versions of them.

LW: And I think maybe we finally have the opportunity, opportunities that maybe the people who came before us didn’t get?

RT: It's like we've been supported enough, just enough, to protest. Whereas for the people that came before us, the idea that you would even get to tell a different story or change that cultural narrative, that wasn't even maybe on their radar as much as just like: “We need to be able to go to school; let us go to school.”

sitting_pretty

A post shared by Rebekah (she/her) (@sitting_pretty)

LW: And social media has given us the ability to go round the ‘gatekeepers’ in journalism and publishing. Just in terms of us connecting - I wouldn’t have found you without Instagram - but also in terms of saying there is an appetite for these stories.

RT: Yeah, I feel like that's definitely been a game changer. Look at the number of people in publishing houses - so the people who are making decisions; the gatekeepers; the people who are saying: “These are the stories we're going to publish and these are the stories we aren’t” - there are a minute number who have disabilities. And I do think that, if nothing else, one thing that has happened from Instagram is now there’s this space of no gatekeepers. And people in those positions are seeing “Oh, there's a whole world here, a whole set of voices and consumers”. So you have the gatekeepers from literary publishing houses, but also fashion and advertising and all sorts. I feel like they've received this new signal, almost like a giant flare, that we're here! We exist! Pay attention! Stop pretending like this is some sort of fringe experience. That's not part of the whole human experience.

LW: Representation is still so bad, and we’re still told disability is ‘too niche’, but I do feel like there’s more value given to disabled voices now. Almost like we have more power?

RT: Yeah, I think that's exactly true. I'm glad that you've pinpointed that because that actually resonates. You think about even how much you pay attention to like, conversations around accessibility and particularly wheelchairs and air travel. Whereas in the past when somebody's mobility aid was destroyed, it was just like that person just thought that they were an exception and now when something like that happens people are filming it. and posting it to Tik Tok. I think you're right that it’s this layer that this new. There's more power in part just because we've been able to find each other and be connected in that way.

LW: Yes, it’s all in connection. Rebekah, thank you so much for this incredible conversation and your generosity with your time. I just have one last question: what’s next for you?

RT: Well, I'm constantly thinking about what I want this second book to be. At first, I thought I’d start writing on this second book as soon as the first one made it out to the world, but actually it's been a slower process for me. I feel like I might need another decade. But that's always on my radar. I am really excited about changing the stories that we have about disability in the world. I have had a couple of opportunities to start branching out into TV writing. I don't know if anything will actually become a thing, but I'm just really excited about that. I like participating in that medium. And thinking about maybe writing fiction, before I write like another memoir. Just kind of playing around with more ideas along those lines.

And then, and again, I don't know what this will look like, but in my heart I'm feeling more and more drawn to try to create some kind of space for young people with disabilities. I don't know what that'll look like - if it'll be something as simple as some sort of like virtual club that we get to join and there are stickers. I don't know! Just something small to start with, just creating more space for people with disabilities to connect and finding each other and find solidarity I guess. I am really interested in creating a space of disability culture that young people can become a part of. Mostly because, like what we talked about at the very beginning, of that thing where so many kids with disabilities grow up in families that do not know that experience, do not know the history and don't look at disability the way that a lot of people in that community do. Yeah, those are some things on my radar, I guess.

LW: I can’t wait to see it all - the second book and the club! I’ll be your first member!

I really hope you enjoyed reading this interview as much as I enjoyed doing it.

Rebekah is such a powerful voice in our community. If you’re looking for your next step in disability allyship, I cannot recommend her book enough. You can buy a copy here.

And make sure you’re following Rebekah on Instagram.

Let’s write some new stories.

Until next week,
Lucy

The View From Down Here

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