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Emily Ladau talks about Demystifying Disability

In honor of Disability Pride Month, writer, speaker and disability rights activist Emily Ladau joins Taya Jae on the Pen and The Sword to discuss her book, Demystifying Disability, What to Know, What to Say and How to be an Ally.

The Interview

Taya Jae: It's time for The Pen and The Sword on KVNF Mountain Grown Community Radio, I am Taya Jae. I'm honored to be joined today by disability rights activist, speaker and writer Emily Ladau. Emily is the author of Demystifying Disability: What to Know, What to Say and How to be an Ally. Emily, thank you so much for taking time to talk to me today.

Emily Ladau: Thank you for having me. I'm really, really excited.

TJ: It's a pleasure to have you. I'm really excited to be having this conversation with you. I say it a lot about these literary interviews especially, there's nothing like reading a book that really stimulates your brain and the first thing you want to do is tell everyone in your life to read it and you want to find somebody in your life who's already read it so that you can discuss it. And there's such a beauty in these interviews because not only do I get to do that, but I get to do that with the people who have written it. SO I feel very lucky.

EL: And I'm always particularly excited to engage with people who are looking to dive into the topic of disability, who are looking to talk about disability and have a raw and real conversation. So I could not be more thrilled that you found your way to me.

TJ: So, Emily, one of the things that right off the bat stood out to me is that more than 1 billion people around the world are disabled, meaning that disabled people are the world's largest minority. Another thing that stood out to me is that disability is the only identity that anyone can suddenly take on at any time. Will you talk a little bit about that?

EL: Yes. And the first thing that I should do is say it is not a threat that anyone can become disabled at any time. I think sometimes we look at disability as a negative thing, but really it's just a natural part of the human experience. And so yes, it's true that anybody can become disabled at any time, but that's a reality and it's not something that we should fear. And so, I like to ask people to recognize that disability is not a niche issue, you or somebody you know, has a disability or will have a disability at some point in your life, and that is what it means to be a human being. And the number 1 billion, it's more than 1 billion now because COVID especially has really created more disability and so not a niche issue at all. I mean, there are so, so many people in this world who have some type of disability in the United States alone. It's one in four US adults. And so I ask that we stop pushing it to the margins of marginalization and we bring it to the forefront because it's not something that we should fear. It's just part of who we are.

TJ: Right. Absolutely. And I think you bring up such a great point that it is very misunderstood still in our culture, even though it's not a niche experience, it is incredibly misunderstood. Can we talk about some of the common misunderstandings around what it is to be a disabled person.

EL: For so many people, disability is reduced to the same things that we see on the media over and over again rather than a rich nuanced really deeply human experience. So we tend to see it as being very inspirational. We tend to see it as people overcoming disability or we might see it as tragic. We might see people as the victims of their disability, as suffering from their disability. Sometimes we see disability as the villain. So often when you're watching a movie, the bad guy in the movie has some kind of disability, right? Or the person with a disability might be this very wholesome, pure individual. We tend to reduce people with disabilities to these stereotypes rather than recognizing the whole of our humanity and the fact that we are complex individuals. And so disability is really misunderstood because we are socialized to think about it that way or to not think about it at all. We're taught that it's taboo. We're taught that we should not be addressing it that we should just push it into a corner, hide it away, sweep it underneath the rug. And so of course, it's misunderstood because we're not given the chance to understand it.

TJ: So nicely said. I want to sink into some of the specifics of that. In chapter four, Ableism and Accessibility, you share a definition that you use for ableism. And I'm wondering, if you're comfortable, if you will share the definition that you use. And if we can talk a little bit about the ways that ableism is ingrained in and problematic to the health of our culture and society?

EL: Absolutely. And so I think this is a really good place to start and build a foundation for our understanding of disability. When we think about ableism, if we think about it at all, because it's often the forgotten form of discrimination, it's something that doesn't always come up in conversation, we have to understand just how pervasive it is in our culture. And if we're not tuned into it, we may not recognize it. And so I define ableism pretty straightforwardly as attitudes and actions and circumstances that devalue people on the basis of disability. And it shows up in so many ways in our culture that we may not pay mind to. It shows up in the sense that we internalize it, that we hold on to these stigmatizing attitudes about disability and sometimes we can even turn them on to ourselves. For example, if you are going for a run and you injure yourself, you might think it's a sign of weakness, it's a physical flaw that I have injured myself on this run, there is something wrong with me. Rather than my body is human; this is what happened to my body; I am going through a human experience. And so ableism can take the form of saying that any sort of physical issue that we encounter is a weakness, when really it's just a reality of being a person. Ableism can take the form of being interpersonal, where we discriminate against other people on the basis of disability. We may choose not to be their friend, we may choose not to employ them, we may decide that they are not relationship material, we might just make an obnoxious comment as we're going down the street and say: "what happened to you?" Or, you know, I'm a wheelchair user so people often say to me, "oh, you got a license for that thing, you're going to get a speeding ticket, slow it down". You know, sometimes it just shows up in the comments that people make the assumptions that people make, and then finally, there's systemic ableism which shows up in all of the systems that we operate in. And so I give the example of transportation, I live in New York and in New York, we are notorious for having a very inaccessible public transportation system. And the fact that we have a public transportation system is a privilege, but it doesn't work for everybody. And so if that system doesn't work for people with disabilities, think about the fact that you are then shutting people with disabilities out of employment opportunities, education opportunities, socialization, health care, right? The list goes on. So systemic ableism, quite literally means, that the systems that will be operating in are shutting out the disability community. Ableism takes on so many forms and once you become more aware of it, you recognize just how much a part of our culture it is.

TJ: And I think within that for folks who are non-disabled to recognize that it's inevitable that at some point we have said or done something ableist and and likely will again. To me it seems like that's the place we have to start.

EL: I am really glad you brought that up and I don't want anyone to leave this conversation, feeling guilty and feeling as though they have done something wrong and they have done something bad. The reality is as you said, yes, we have all been ableist at one point or another and I am someone who's disabled and I have also been ableist. It's simply so baked into our systems and our thought processes and the media that we consume that it is really, really hard to not be ableist sometimes. Until we actively unlearn the ableism that we have been taught and that we have taken in and that we hold on to every day. So yes, we have all been ableist at some point. But rather than feel bad about it, I really want people to recognize that we have an opportunity to do better going forward. This is not about guilt, this is about education.

TJ: And I just want to acknowledge too, Emily, that you are, gentle is maybe the wrong word but you are very kind with your reader and you're not setting out to shame, you're setting out to educate, you're setting out to dispense information to create a resource to further people's learning and investment in making the world more accessible for disabled folks. I think that you do a really commendable job of not ever shaming anybody, but you're also direct about the way that you communicate this information. With that in mind, can we talk about some of the techniques, or the ideas that you highlight, as ways of unlearning ableism?

EL: I really appreciate you naming that I felt kind, in reading the book, because that was my goal. I don't want anyone to feel called out. In fact, I want people to feel called in. I want people to feel welcomed to the conversation. I want people to understand that there is going to be a learning process when it comes to how we think about disability, how we talk about disability. I want people to understand that unlearning ableism is a process. This is very much going to be ongoing and I don't want that to feel overwhelming. I would actually like people to look at it as a lifelong journey, remembering that anybody can become disabled at any time. And so this could one day be something that you are encountering yourself. And so, why not begin the process of unlearning this type of stigma and creating a more accessible world? So, that if and when you become disabled, the world is more welcoming to you. I hate to frame it in a way that may seem like it's about selfish interests. But the reality is that we should all want a world that works for us, for everyone, of course, but also for ourselves. And so unlearning ableism really takes the form of engaging with disabled people, engaging with the concept of disability, consuming media created by disabled people, learning about disability history, understanding that there is a culture and a community around disability, that it is very much an identity for people. It's a source of pride for people, July disability pride month, and so when we talk about disability, when we talk about what it means to unlearn ableism, it really means, and I know I keep going back to this, recognizing the humanity of people. It means understanding that disability is a lived experience. We tend to look at it as a tragic flaw, when really it's something that adds so much richness to a person's life.

Yeah, so nicely said, thank you for sharing that. I think that a big piece of recognizing that it's a process and that it's learning is recognizing that you don't necessarily have to know the answers. I think sometimes people assume they know, they assume they should know, they're afraid to ask because they're worried about getting it wrong. And I think on the one hand, it's really such a simple reminder that it's ok to ask, given that the situation is appropriate for that, but I also think that I find myself constantly feeling like I already need to know or I find myself sometimes not doing anything for fear of not knowing and I'm wondering if you'll speak to that a little bit Emily.

EL: I appreciate your honesty there because I think we are so afraid of getting it wrong that we just avoid talking about disability completely. And we live in a culture where we don't necessarily always give ourselves the grace to make a mistake. And I understand that causing harm is a problem and we don't want that to happen. But at the same time, sometimes mistakes are part of the learning process. And so what I really wanted to do in writing my book is give people a place to go to get some of those questions answered when they're feeling a little bit uncertain. I am a big believer in doing the work and doing the homework; in taking the time to learn. But I'm also a big believer in meeting people where they're at. And I recognize that where a lot of people are, is not even giving a second thought to disability. So there's a lot of work to do. And I know that it can feel really scary when you start to broach a subject that you are perhaps unfamiliar with and you're worried that someone is going to come after you because you've made a mistake. But my hope is that if we begin to open up conversations about disability, about the words that we use, about the experiences that we have, it won't feel so scary because we'll recognize that it's just a normal part of what it means to be a person. I keep going back to that point because I cannot stress it enough, when we're thinking about disability, when we're talking about disability, it's not something to be afraid of. And I know that it can feel really intimidating to engage in a conversation when you're not sure where to start. So, I'm not suggesting that you go up to someone and say, well, tell me everything about your disability, right? That's not what I want. But at the same time, acknowledging that it is something that's part of a human being, right?

TJ: Well, and with that in mind, I just wanna acknowledge that you definitely make a point of saying that your experience as a disabled person is not gonna be the same as somebody else who is a disabled person, right? That it's not unanimous. that it's not one experience. that not every single person is going to agree or feel the same way. And I think that I bring that up because that idea of asking questions, I think something else you stress in the book is, you know, to read the room, right, to read the situation, to test, to see before just you know, proceeding with asking somebody tons of potentially intimate or uncomfortable questions to like really take care with each other in our learning along the way.

EL: Yes, absolutely. For me, the first thing that I need to name is that yes, I am one person, if you have met one person with a disability, you have met one person with a disability. And so I can speak to my experiences as someone who uses a wheelchair as a physically disabled person. However, I don't know what it is like to be blind. I don't know what it is like to be deaf or to have a cognitive disability. That's not my lived experience and I don't speak about it as such. I am the expert only on my own lived experience and on top of that there are other facets of my identity that inform how people perceive me and how I experience the world as a disabled person. So I am a white woman with a physical disability who comes from a certain socioeconomic background, from a certain geographic location, from a certain culture. And so all of these things inform the ways that people interact with me and what it's like to be a disabled person for me specifically. And so I don't want anyone to think that I think that I am the sole authority on disability because there is no such thing. And so once we begin to understand that that everybody's experience with disability is their own lived experience. I think that is how we begin the learning process about disability by recognizing that there is no one right answer that there is no one specific experience that yes, it may be a shared culture, a shared community, a shared identity, but it's also different for everybody.

TJ: Yeah, I'm curious with that in mind, Emily, what was your motivation for writing Demystifying Disability?

EL: I want to be very clear that I never set out to write the bible on disability or the encyclopedia of disability, and there's so much to learn about disability. There is so much to that conversation. What I wanted to do in writing Demystifying Disability was offer people maybe a bit of a primer, maybe a bit of a starting point because as we were talking about before, yes, there is that fear of getting it wrong. But if people have a place that they can go to where, hopefully, they feel welcomed rather than alienated, to learn about the language, to learn about the history, to learn a little bit more about etiquette, that might make things a little bit more comfortable when we start to engage about this topic that otherwise feels so mysterious, so unfamiliar. And so writing this book was really my way of offering an entry point for people and holding out my hands and saying, come and join this conversation. And I know that that sounds, you know, a little bit cheesy maybe, but I sincerely mean it, I wanted to roll out the welcome mat for people to be part of the conversation.

TJ: Did you learn things along the way about yourself, about how to talk about disability just in general? Were there lessons for you in writing this book?

EL: Writing Demystifying Disability was an exercise in humility for me because it was a reminder that nobody can ever know all there is to know about anything. And no matter how much I remind other people that I am not an expert, the most important person I need to remind that is myself. For me, I am constantly learning, there is constantly some new complexity or nuance or experience that I had not thought about, that I had not considered because it's not my lived experience. And so, I have to constantly approach the world with curiosity and with a willingness to reshape how I think about and how I understand disability because disability is not simply one experience, it's billions of experiences. And so, as much as I hope to teach people, I also hope that I can still continue to learn. And even as I was writing the book, one of the challenges that I encountered was how do I incorporate all of the knowledge that I want to impart and how do I know what I don't know? There is no way to know that. And so, after the book came out, I definitely received some criticisms from people that I think were very fair about how this part of the book doesn't represent my experience, and this part of the book is missing this particular experience. And no matter how many caveats I give about the fact that I am one person and I don't speak for everyone. I still believe it's important to get that feedback. I still believe it's important for people to say, "this does not represent my experience" because that proves one of the points that I hope to make, which is that there is no such thing as the singular disability experience. And so every part of writing this book was a learning process for me. And now that the book is out in the world, the learning process doesn't stop. It means that I need to continue questioning my own knowledge. And I also need to take my own advice, to continue to learn and to listen and to engage with the work and the words and the wisdom of the disability community.

TJ: Emily, do you have the book in front of you? And would you be willing to read a short passage from it? And part of the reason I ask, I mean, I usually ask this of authors, but I think that you talk a lot about word choice, you know, in the book, you talk a lot about language. And I think that in the way that you write, you are very concise, intentional and feeling. So if it's possible to be all three at once, the way that you write has a really, I feel like as a reader, we get a really strong sense of your voice, we also get this massive download of information and we're allowed the space and the opportunity to reflect and say, how does this apply to my life and what are ways that I can recommit to doing better now that I know this knowledge? And so, I would love to give our audience a sense of your voice, not only in the pages of the book, but in person.

EL: I really appreciate that and it was actually one of the reasons that I chose to narrate the audio book myself because I was hoping that people would hear some of the inflections that really came through and how I was thinking about things as I was writing them. So I am more than happy to read a little bit and I do have it in front of me now.

When we're constantly surrounded by ableist depictions of disability, it's all too easy for both non disabled and disabled people to believe it is true. A single scene in a movie, page in a book or article online can manipulate where the line falls between our understanding of what's inaccurate and what's reality, feeding into a harmful cycle of discrimination and disabled people get caught right in the middle of that cycle because the media affects not only how we're treated but also how we perceive ourselves. So how can we break this cycle? The most powerful place to begin is to learn about what kinds of stereotypes to look for as well and how to interpret them. The list is long, to be sur,e we're going to cover some though not all of the ones that are most commonly used, known as media tropes, so that you'll be better equipped to spot the difference between positive and harmful representations of disability. Please remember that the tropes we'll talk about don't each exist in a vacuum. They quite frequently intertwine and overlap within a media landscape that for the most part still has a long way to go in figuring out how to accurately portray disability.

TJ: Emily Ladau, reading from her book Demystifying Disability, today on The Pen and The Sword. Thank you for sharing that Emily.

EL: Thank you for inviting me to read it.

TJ: You've touched on this a little bit, but to close out the show, I'm wondering if you'll share with us, if you had to distill down the message that you hope readers come out of your book with,wWhat would that message be?

EL: I want people to understand that learning about disability and being supportive to the disability community is very much a journey and not a destination. And there's not really going to be a checklist that you follow. You don't get a gold star at the end of the day. There's no number one ally, right? But at the same time, that's sort of the beauty of it, is that it's an ongoing process. And so if you've read one book on disability, if you have listened to one radio show on disability, right? That means that you now have the opportunity to keep going to engage further, to learn from other people because there's so much to learn about disability. And I don't want people to feel overwhelmed by that. I want them to feel invited in by that. I want people to understand that this conversation doesn't stop. It keeps going.

TJ: Thank you so much, Emily. Thank you for all that you have shared and thank you for this resource. Thank you for the suggestions of further readings and resources at the end of the book. I'm just so grateful, and I want to express my gratitude to you and for this book as a starting place in my journey with recognizing these deeply ingrained patterns in myself and our society and beginning to look at ways of changing that in order to make the world more accessible.

EL: Thank you for inviting me to talk about it and also Happy Disability Pride Month.

The first time Taya was on the radio was a KVNF pledge drive promo recorded in 1998, she was 5. It went something like this, “I like KVNF because it’s fun to listen to music” she goes on to say, “music is like a dream”.