Novel Disability

Ep1: Demystifying Disability with Emily Ladau

• Emmalynne • Season 1 • Episode 1

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I interview acclaimed disability activist and author Emily Ladau about her book Demystifying Disability and what she hopes it can bring to disabled community. 

Follow us for updates on our Instagram! If you have feedback, questions, or books to recommend, please email us at noveldisability@gmail.com

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Emmalynne:

Emmalynne: Hello and welcome to Novel Disability. This is your first time in? Great start! It's our first episode. My name's Emmalynne and I'm here to guide you through the world of disabled literature and meet some of the incredible authors, creators, and activists surrounding the immense body of work that exists.

Emmalynne:

Novel Disability is here to help you build your disabled library. It is a podcast discussing books written about, for, and by disabled people across genres. I hope that it builds a bridge between the disabled community and literary depictions of our experiences.

Emmalynne:

A little bit about me. I have a disability myself. I have cerebral palsy, specifically spastic hemiplegia on the right side of my body. And I'll probably explain a little more about that in future episodes as we go through, but I just want to give you an intro into what we're talking about today and what we're going through.

Emmalynne:

I'm going to tell you about this really cool book called Demystifying Disability by author Emily Ladau, who we will be hearing from later on in her interview in this episode. Demystifying Disability is a really wonderful and fantastic -and was indeed my fantastic first primer- into disability theory and different models of conceptualizing disability or how to think about disability or even what to think when you see someone with a disability out in public. It's kind of a catch-all, what are your first questions when you think about disability kind of book. It's very short. It's a cute little turquoise, aqua, blue of some kind. I'm not quite sure. thin little book here and it is impeccably well written very well sourced and actually a very fun read.

Emmalynne:

This gets talked about a little bit more in the interview, but the art style is very unique for the book itself. And it never feels like you're sitting down to read a textbook. It feels almost like reading a magazine article. It's very light and very informative. So I highly recommend this book.

Emmalynne:

I also want to tell you a little bit about Emily Ladau. She is a disabled writer and activist. We love her work. She's from Long Island, New York. Very cool. Demystifying Disability was her first book published in 2021. She is currently the editor of Able News at the Viscardi Center and co-hosts a wonderful podcast called The Accessible Stall, all about disability and experiences living with disability.

Emmalynne:

I specifically came across this book, I was at a conference, d uring my, while I was trying to get a degree in public relations. I was at a, I was so, hang on, hang on. Oh, friends. So I was at a conference and I was sitting in the audience and I was listening to someone up front talk about how they were combining their public relations work, which is what the conference was about, with disability advocacy. And it changed my life on a dime. I had no idea that I could include my disability into my work. It's not something that had occured to me. I didn't realize I could bring those spheres together; and once I knew that was an option I never looked back. I went up afterwards and I talked to the speaker and she recommended this book to me, and I went home and I immediately got this book, and the rest is history! And today I’m making a podcast, so a lot of meaning for me in this being the first episode, a lot of love for this book, I do not claim to not be biased, and I hope you very much enjoy getting to hear a little bit more about it from the author herself. And without further ado, I will now let the interview play.

Emmalynne:

Emmalynne (Interview Start): So for those who don't know, what is your connection to the disability community? Like in simple terms, why are you here?

Emily Ladau:

I identify as a disabled woman. I was born with a physical disability called Larson syndrome and it affects my joints and my muscles. So I am a full-time non-ambulatory wheelchair user. And I also identify as someone who has a hearing disability and mental health disabilities. So disability has very much always been a part of my identity and my life experience. And it has made me incredibly passionate about being able to educate others about that experience.

Emmalynne:

Amazing. I feel like you've got that down pat. That's perfectly in a nutshell. It was wonderful. I noticed that in your book, you have a section on disability in the media. And I was wondering what kind of, I know you talk about it a little bit in that chapter, but what sort of disabled media did you have growing up and what did that mean to you?

Emily Ladau:

I would say that I had very little access to disability representation as I was growing up. There were a few instances where I saw myself and we had to, for the most part, pretty actively seek that out. And so, there were two books that I had, and I do talk about this in my book as well. And they were about kids with disabilities who were going to physical therapy. And one was called Patrick and Emma Lou, and one was called Andy Finds a Turtle. And they were these black and white illustrations. And, I read those books so many times because it was just so nice to see little kids using mobility devices. And I think back on it now and it was just so sad in a way that that was kind of all I had available to me. And I'm sure there must have been other things out there at the time, but the reality is that when I was growing up in the early 90s, we didn't have access to social media to show us all of these resources that were being developed. So there was significant limitation on what we found.

Emily Ladau:

And then also there was a little girl who was on Sesame Street and she was a wheelchair user and her name was Tara. And I would watch her and I would think, oh, you know, maybe I do belong, right? I can be a part of the neighborhood. And I guess, you know, spoiler alert, I mean, as it happened, I did end up in a position where I was auditioning for Sesame Street, of all things. And I then had the opportunity for a season to become that little girl and to become that representation.

Emily Ladau:

Emmalynne: Wow. I always wanted to see. So, yeah, but... Such a limited amount of media when I was younger that showed disability.

Emmalynne:

Very much a be the change you want to see in the world sort of situation with Sesame Street there.

Emily Ladau:

As much as a 10-year-old could have understood that, yes.

Emmalynne:

I very much feel that. I had a very limited, maybe like one hand I could count the number of books I had that had disabled representation. So I very much feel that as well. Even going back now, I've been... even in searching for books for this podcast, I've been finding like children's books that are much more things I would have loved to have had as a kid that are just making me emotional just to find them now, and they're for like five-year-olds.

Emily Ladau:

Oh, I know. I've been developing a collection of the books that I wish that I had when I was a little kid. And so some of them, if I can shout them out, I really love the book Bodies Are Cool by Tyler Fader, who I'm biased because Tyler illustrated the front cover of my book, but also her book is really incredible so it's all about you know body acceptance and celebrating all types of bodies and then there's another book called This is How We Play that i really like as well and it just kind of celebrates all of the different ways that we can enjoy each other's company and do so with love and adaptations Y ou know, there's also a book called A Day with no No Words that I really like about someone who is a kid that communicates without using words. And it just kind of shows how the kid goes about his day-to-day and communicates in his own way. I mean, I could sit here forever and, you know, list off books. But I think it's just so exciting to me that– Even if I didn't have it, future generations will.

Emmalynne:

Very much so, because I know what a difference those few books made, for sure. Actually, I do want to ask about your book is such a unique kind of art style to it, even on like the inside layout. And of course, I love all the little characters on the front. But was that did you have a hand in that creative process at all?

Emily Ladau:

100%. The whole thing was driven by my vision, because I knew that I had never been into a bookstore and seen myself on the cover. And I don't mean myself literally, I just mean that I have always wanted to go into a bookstore and see a wheelchair user on the cover of a mainstream book. And so I thought, well, what if I give multiple people the opportunity to see themselves reflected back at them on the cover, and do so in a way that’s fun and approachable and inviting, and the thing that I think I love most about the cover is, even if you are not picking up the book to read it, the cover itself still starts conversations, and I can’t tell you how many messages I’ve gotten from parents, caregivers, teacher’s of young kids, and they’ve said, you know, this book is obviously not for the reading level of a neurotypical five-year-old, but my five-year-old still wanted to have a conversation about what they saw on the front cover of the book. And so it still opened up a conversation about disability, even though they weren't reading the book, because we talked about all of the different types of bodies, mobility equipment, things like that. And that to me is so exciting a nd I hope in my own little way that I'm contributing to filling a gap when it comes to what we see on the front covers of books.

Emmalynne:

Yeah, I would say this fulfills it. I really loved when I got it to start going person by person and just kind of like you can feel their personalities. It's wonderful.

Emily Ladau:

We had very much a vision for how we wanted to try to encompass as much diversity as we could and also recognizing that not all disabilities are apparent. That becomes a bit of a challenge as well. But after the cover was complete, but before the book was published, one day I sat down with my mom and she and I described every single person on the cover because we wanted an image description for the cover to make it accessible. And I think it was then that all of the characters, if you want to call it that, on the front cover really kind of took on a life of their own for me.

Emmalynne:

That's so sweet. And what a sweet thing to do with your mom, too.

Emily Ladau:

My mom's the best, so very biased.

Emmalynne:

And she also identifies as disabled, which I talk about in the book, too. So very much a group effort when it comes to a lot of the advocacy work that we do. I'm sure a lot of your own like takes per se are formed in a large part from her influence.

Emily Ladau:

In a lot of ways, yes. Although she would say that I was really the one who brought her into the advocacy space because again, I mean, when she was growing up, she's, you know, 30 years older than me, almost exactly. And she did not have access to any of the forms of community building that she sought out for me as I was growing up. And so I was sort of the one who got into the mindset of disability advocacy. She's always been a great advocate. She taught me how to advocate. But in terms of disability culture, I would say that that was really where I introduced her to that.

Emmalynne:

Oh, that's so sweet. I want to, if you had to give like a thousand foot summary of what your book's about, like one sentence, very short, what is your book about? What is it for?

Emily Ladau:

I would say that it's really meant to be an approachable primer to how to think about disability, how to communicate about disability, and how to be a supportive ally to the disability community.

Emmalynne:

Awesome. I feel like it does that. When I was going back and rereading it, I was amazed by how broad the scope is with all these sections.

Emily Ladau:

It's tough because I never set out, and I always say this, to write the "Encyclopedia on Disability" or the "Bible on Disability," and I'm one person, and there's simply no way to encompass that the entirety of the disability experience or the entirety of what you need to know about disability, so my goal was always to make my book an offering among so many other great pieces of disability related writing out there.

Emmalynne:

Yeah, that's amazing. For all those sections, were there any that you found harder to write than others?

Emily Ladau:

The history section was hard to write for sure, because again, going back to not trying to be the encyclopedia on disability, it's such a challenge to try to condense what I wanted to convey into a short and readable chapter. And I always talk about the fact that in limiting what I wrote, it ends up ignoring a very important fact, which I do still name that all of human history is disability history, because disability has always been part of our history. And I narrowed the scope to, you know, A century or so of U.S. history and that barely scratches the surface and it's obviously not a broader global scope and the U.S. certainly is not the only place on the planet to have disability history. So, you know, that was that was tough for me. But my hope is that it at least piqued people's interest enough that they would pursue learning about it further.

Emmalynne:

I know when I was reading it, I almost couldn't believe how many, like, these protests that I'd never heard about or seen anywhere that has never come up in my life. And you think they would have at any point, even in passing. Nothing.

Emily Ladau:

That's what's so upsetting to me is disability history is not taught in our history curriculums. And I mean, now, you know, access to... Education is more at risk than ever. And so we need to keep talking about disability history and about the history of marginalized communities. Otherwise, this history gets lost and forgotten.

Emmalynne:

Yes, I agree. I do agree. And it's it's hard when you have to go to these outside or other sources all the time for this information instead of it being collected in the same place as everyone else's information.

Emily Ladau :

Yeah.

Emmalynne:

So I feel that, I feel that in my soul. Did you have like a favorite section when you were writing?

Emily Ladau:

Oh, a favorite section. Gosh. I think that one of the things I enjoyed the most was just being able to talk about what disability actually is and to talk about ableism and accessibility and laying out some of the basics because I'm not trying to be the authority on what any of these words mean, but what I want is for people to understand that in many ways, our definitions are really rigid. And if we think about it at all, we're probably thinking about it in terms of legal definitions or very medicalized diagnosis-centric definitions. But I try to take a much broader approach to how we're talking about disability, which is just to say that it's a natural part of the human experience. And when I talk about it in that way, I feel like it hopefully opens up people's minds. They're not thinking so much about what is your specific diagnosis they're thinking about what is your human experience and diagnosis is still very relevant to a person's experience but it's not necessarily the thing that you need to lead with in all cases and so I enjoyed just getting to kind of level set for people

Emmalynne:

yeah I know this book is very much like my primer into disability so which is what you wanted it to be it's what you were like This is, this is an open door for people to walk through if they want to. And it very much was. And I know when I was reading those different models of disability, it kind of exploded my brain wide open. It was like, I didn't realize it could be this. And I also didn't realize there was a way to look at it that didn't put like the onus of responsibility on me, which was just life changing.

Emily Ladau:

Yeah, I think it is a game changer when people realize that there are so many different ways to think about disability and we're so often taught to see it through the lens of tragedy, victim, villain, right? And we... are so hung up on this idea that disability is something that we need to pity that we miss the fact that there are so many nuanced ways to think about it. And none of them can exist fully on their own or in a vacuum. So some people are very staunchly, for example, against the medical model, which really focuses on disability as more of a problem of the person, if you will, something that's internal with in someone, something that you assume needs to be fixed or changed or cured. And then the social model of disability where disability is due to the disabling conditions surrounding you and is not a problem of the person. And there are other models as well, but those two models are staunch advocates would fight in either direction, but I would say that it's simply not possible for either one to fully explain the experience of disability because the reality is that for me, I do have diagnoses that require, you know, treatment and support and ongoing care. And I know I mentioned earlier, you know, my physical disability and hearing and mental health, but I also have chronic illnesses and the chronic illnesses require medical management. That is not something that is caused by outside societal forces, right? But then you have the social model of disability where if there are stairs leading into a place, then I am absolutely disabled by society because if you just had a ramp or an elevator I would be able to get in the door like everybody else. So I think that we need to look at the models of disability, not as either or, but as both- and.

Emmalynne:

I know, so I read this book and then a year later, I got my first handicap parking tag.

Emily Ladau:

Okay!

Emmalynne:

I used it all around my college so that I didn't have to do those extra long distances to class because campus parking is a whole thing. You can never find campus parking. If you can find it, it's out at the end of the world and you have like twice as far to go. It's exhausting. But getting that tag and having that tool, having that framework, let me accept it not as like, I am the problem for not being able to walk these distances, but rather this is a tool that should be there so that I can participate as everyone else does. And that was awesome.

Emily Ladau:

That is the perfect framing because the reality is that parking lots are not designed for disabled people. And if you need access, then having the tag is not a sign of your weakness. It is an indication that the world was not designed for us and we need that extra bit of support so that we can participate on a level playing field with everybody else. Because if you've just had to walk all the way across a giant parking lot, you're already setting yourself up for being at a disadvantage by the time you get into the room where you're actually going. And so flipping that framing in your head is so valuable and so important.

Emmalynne:

Mm-hmm, I love it. I think this is why I think all these books are so important. It makes such a difference. I know you've had other published work. I know you were in the New York Times About Us series, which is super cool. But I was curious if you found writing for this book was different from other writing you've done related to disability? And how so, if so?

Emily Ladau:

I think that at first it felt like it might be different. And I had... written an introduction to the book, and I read it out loud to my mom. Again, my mom is, you know, editor, supporter, I mean, best friend, etc. And so w hen I read her the first intro that I wrote, she said to me, that doesn't sound like how you talk. It does not sound like I would expect you to sound. It sounds like you're trying too hard to write a book. And I was like, ouch, but also fair. And so I returned to... myself and I said I need to write in the way that I talk and I need to write like I am having a conversation with a friend and not like I am trying to you know get accepted to some prestigious academic journal mind you I've not really been published in academic journals but just I had to really shift my mentality and I was thinking about it from the lens of you know wanting to feel like I was worthy of writing a book but the reality is that you're worthy of writing a book if you have a story to tell and also if I'm talking about disability, I need to make disability accessible and approachable. I mean, you can't alienate people from the very thing that you're talking about, which is accessibility and disability. So in a way, I guess it was a little bit different for me in that I was really trying to think about what would it be like if I just sat down and had a conversation with a friend. But that has always been what has informed my writing in one way or another, and this is really where I go to put that into practice.

Emmalynne:

Yeah, I definitely noticed as I was going through the sections where you break the fourth wall and you say, hey, it's okay. It's okay. Just read this. Just kind of process it. You're like, you're like talking them through so that they can make sure they're accepting these points, you know, like giving them time almost.

Emily Ladau:

I mean, my favorite TV shows are the ones that break the fourth wall. So I think that it's just something that I appreciate because it's kind of like that little wink and that little nod, like I'm not coming to you from up on high. We're actually in this together.

Emmalynne:

Yes, and I think the art style also enhances the friendliness of the book as well. I think that's really good.

Emily Ladau:

Yeah, and another thing too is I very intentionally wanted to not have it printed in a hardcover version because hardcover is more expensive than a paperback. And usually what happens in the publishing industry is first a hardcover comes out, and then later there’s a separate launch for the paperback. But my concern with that was that sometimes a hardcover is so expensive that if a person is making minimum wage, they're paying literal hours of a daily wage to buy one book. So I thought if we just go straight to paperback, let's eliminate at least one financial barrier for people. And it's small, but it's something that I don't think people really think about. And my goal was, again, access.

Emmalynne:

Yes, I know. So this book found its way into my life in some magical ways. And one of those ways was I came home and I told my friend about it, who I told my roommate about it. I walked into my house. I said, I just heard about this book. I need to buy it right now. And she went, oh, we just read that in my art class. And she had the copy. And it's still technically it's her copy. It's still got like her underlines in it. And she gifted it to me. And it was just waiting for me when I got home. So and but in regards to accessibility. I know when you're buying a textbook as a student, that's a big deal. And so I'm sure having a cheap paperback, let this be accessible in the classroom for her.

Emily Ladau:

I... Cannot tell you how many times I have wanted to buy a book that is technically published by an academic press. And it's like an anthology of essays on some disability related topic. And it's like, you can have this large hardcover book for $150. And I'm like, who has that money? Truly? Unbelievable. And it's funny because I never really wanted to make my book into a textbook. I always feel guilty that I'm givng people homework, b ut at the same time, if that is more financially accessible to people than this $150 collection of essays, then great. Because the amount of money that I lost out on every semester buying textbooks that I would never use again wsa just, bonkers to me.

Emmalynne:

It is a perpetual problem, for sure, in the publishing textbook industry. I know, so it's been a few years since the book came out. Is there anything that when you look back you wish you could change?

Emily Ladau:

Totally. 100%. And I hope that the plan is to kind of update some things down the line. But you know, before we were talking about the history section, and in trying to condense that section as much as I did, I feel that it was to its detriment because there were certainly oversights that I made. And this is also a reminder to me that even as a disabled person, I still have more learning that I need to do.

Emily Ladau:

And so a perfect example of this is after the book came out, somebody said, well, when you talk about the closure of the Willowbrook Institution in New York State, you talk about the reporter, Geraldo Rivera, who reported on the expose that eventually led to its closure, but you didn't talk about the fact that there were advocates with disabilities in the institution who were also pushing for the closure of the institution. And this was particularly embarrassing to me because I had met one of them. His name is Bernard Carabello. And he is a fantastic advocate who lived in Willowbrook for many years and then fought for its closure. And I just thought to myself, how could I overlook disabled people as a disabled person writing a book asking people not to overlook disability and that to me was a huge wake-up call, that, you know, I need to remain humble and dedicated to continuing to expand my own knowledge. There's no such thing as being the expert on any one disability other than your own disability.

Emmalynne:

Yes, and I know your book, the attitude it takes to a lot of this is do your best when you can. And if you end up doing less than your best, try to do -y our best the next time. You very much have this way of where you're speaking to your audience where you say, hey, it's okay if you mess this up. You're not going to get it right all the time. Try to get it right the next time. And you might have to take your own advice a little bit there.

Emily Ladau:

I am the worst at taking my own advice, but thank you for that reminder. Yeah. And you know, I'm very sincere in that advice, though, even if I'm bad at taking it myself, because we do not live in a culture where we give ourselves any grace for making mistakes. And I don't condone anyone causing harm. But at the same time, I get very upset when I see that we would rather jump to conclusions about a person and, you know, kind of excommunicate them than give them an opportunity to learn and to understand. And if somebody causes repeated harm, then no, I'm not saying that you always need to give them grace. But if somebody has made an honest mistake and shows a genuine remorse and a genuine will to do better, let's not alienate them. That doesn't help anybody.

Emmalynne:

Let's let them republish their book.

Emily Ladau:

Right. But I mean, you know, in my case, I would very much say in the previous edition, this is what happened. You know, I also I don't believe in covering up mistakes either. I think that the learning process requires transparency and openness too.

Emmalynne:

Yeah. Amazing. I so agree. I did also want to ask, is there anywhere you're hoping this book drives the conversation in the disabled community in the next five or 10 years?

Emily Ladau:

Well, you know, some people told me when the book first came out that it was not nearly radical enough. and that i was sort of pandering to non-disabled people but i think the truth is that maybe right now my book is a little bit too radical for some people

Emmalynne:

Mm-mm, I would say that's true.

Emily Ladau:

Yeah, so considering the current state of the universe my hope is just that you know the book helps people who are trying to find the words to navigate this time and not to let disabled people get relegated to the sidelines yet again.

Emmalynne:

Yeah, very important. Very important. Is there anything that you're currently reading that you want to share? Any other books about disability that you would recommend to the audience?

Emily Ladau:

I am currently finishing up the book, Unfit Parent by Jessica Slice. And she is so lovely, a very prolific author she also wrote a book called Undateable along with her co-author Caroline Cup and that one is about dating and relationships with a disability and then this book Unfit Parent is about parenting with a disability and I just am very very much enjoying feeling seen in a lot of ways. I'm not a parent, but just sort of understanding where she comes from and learning about her experiences and the experiences of other people that she includes in the book. So that's where I am right now. And then I have another book on my list that I have not read yet, but it is based on a documentary short that I really liked from the New York Times. It's called Whale Eyes, and it's about a person who has a vision disability. And so the documentary was all about his vision disability, and then he turned it into a young adult memoir.

Emmalynne:

Oh wow, yeah, that sounds lovely. That sounds poetic. "Whale Eyes"

Emily Ladau:

Yeah, it looks like it's going to be a good one.

Emmalynne:

Cool. Do you have any current projects you would like to share that your heart's kind of in?

Emily Ladau:

Oh, my gosh. Um... There's some cool stuff that I'm kind of working on behind the scenes. But I think the thing that I am always most passionate about is sharing stories and giving people platforms to do that. And, you know, covering what is going on in the world of disability and highlighting interesting people. So for the past little more than a year, I've been the editor of a newspaper called Able News. And it's been a journey, a growth journey for sure. I've been the editor of other publications in the past, but this was a new experience for me. And I'm excited about that because right now, more than ever, we need platforms to tell stories.

Emmalynne:

Yes. And promote those stories. I do very much agree. I really hope I can do that with this podcast. I really hope platforming these books will get them to a wider reach and help people see that there's different kinds of representation and we need to be able to talk about it and we need to be able to promote it. It's very important.

Emily Ladau:

And I'm super excited to see where this podcast goes. I think that, you know, I started a podcast with a friend of mine. 2016 and at that time there was such a lack of disability focused podcasts and i'm not like saying we were trendsetters i'm just saying it was notably absent um and now i feel like disabled people have really come around to the fact that podcasting is a great platform and I want more of it

Emmalynne:

yes I, there were so many especially even yours when I was going through that I was like oh there's I can listen to this one and I can listen to this one and I can listen to this one. And it's been, it's been really nice, especially for inspiration, even just figuring out style.

Emily Ladau:

And solidarity and community and just not feeling alone.

Emmalynne:

Yes, 100%. I always like to ask if there's anything else you'd like to add at the end of this. And I also want to make sure you get a chance to plug where people can find you online.

Emily Ladau:

Gosh, I think this was such a well-rounded conversation. You asked really insightful questions. And I appreciated the insights that you shared of yourself and your own experiences as well. So I feel like we covered plenty of ground. But in terms of where people can find me I'm pretty easily findable it's just emilyladau.com so "my- name- dot- com" or I'm you know @ emilyladau on pretty much all of my social media platforms. I'm a particular nerd for LinkedIn which is kind of silly but I really like it Instagram and I'm on blue sky and Facebook and I don't know I'm pretty easily findable on the internet

Emmalynne:

amazing thank you so much that is uh those are many places where people can find you awesome awesome

Emmalynne:

Thank you again to Emily for your wonderful interview. It was lovely to hear from you. It was lovely to get a chance to speak with you. Thank you to whoever is listening to this, all my lovely listeners. I am so excited to be embarking on this journey with you and I hope to introduce you to the phenomenal amount of disabled literature that is out there and can be truly life-changing when you let it kind of seep into your mind and start showing you how amazing and how interesting and how wonderful a life with a disability is able to be. Follow us online. Links to all the socials are in the descriptions. And I will see you later this month for episode two. Bye!