S3. Ep. 4
Emily Ladau

Welcome to Amplify Inclusion, a podcast where we share authentic stories of inclusion in action.

Emily Ladau, author and disability rights activist, discusses her brand new book and the impact she hopes it will create. Listen now or view the full transcript below. 

Get Demystifying Disability written by Emily Ladau and published by Ten Speed Press, an imprint of Penguin Random House.

This episode was co-produced and engineered by Subframe Sound with music courtesy of Nealle DiPaolo. This season is made possible thanks to generous contributions from First Bank of Highland Park and members of the Aspire community.

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Full Transcript

Clare [00:00:03] 

Welcome to Amplify Inclusion. I’m Clare from Aspire. Thanks for joining us for real  stories and conversations about the power and importance of disability inclusion.  My guest today is Emily Ladau, a passionate disability rights activist, writer, storyteller,  and digital communications consultant. Emily serves as the editor-in-chief of the Rooted  in Rights blog, a platform dedicated to amplifying authentic narratives on the disability  experience through an intersectional lens. Her writing has been published in outlets  including the New York Times, Self, Salon, Vice, and Huff Post. I had the opportunity to  speak with Emily to discuss her book, Demystifying Disability, recently published by Ten  Speed Press, an imprint of Penguin Random House. Here’s our conversation.  Emily. Thanks so much for joining me.  

Emily [00:00:59] 

Thank you for having me. I’m so excited! 

Clare [00:01:00] 

I’m thrilled to be with you, and I know we have a ton to talk about today. I first became  familiar with you by finding your blog, called Words I Wheel By, and I immediately was  really drawn to your writing. One, because I think you’re really funny; you’re humorous, relatable, authentic. And, you know, it was that kind of safe space that you create in  

your writing that really drew me to reach out to you and connect with you, and we  became sort of virtual pen pals, I think it’s fair to say!

Emily [00:01:29] 

Absolutely, and you know, I really appreciate, first of all, you’re kind words about my  writing, but I think more to the point- it feels very validating to hear that particular  feedback because I have this mantra that informs what I do and I really believe that if  we want the world to be accessible to the disability community, then we need to make  the experiences and ideas surrounding disability, more accessible to the world. And I  know that’s not always a popular line of thinking because people should not just be  living breathing, teachable moments. But at the same time, I do want to draw people in, I do want to make them feel like they’re part of an ongoing conversation. And so,  knowing that, that was what made my writing resonate with you is, I think, the highest  possible compliment and I’m really grateful.  

Clare [00:02:25] 

You just published and released your first book, Demystifying Disability, which is so  amazing- congratulations! 

Emily [00:02:32] 

Thank you. I don’t know where the time went or how it happened. But the project began  as just a spark of an idea in 2019. And here we are all this time later with an actual  book.  

Clare [00:02:47] 

I want to really dig into the book. But before we get there, I’d love to hear a little bit more about all the different ways you’re engaging with the community.  

Emily [00:02:54] 

Yeah, absolutely, but for the book, I like to say that I’m just representing myself, a Ladau, the author. But for other hats that I wear when I’m not busy focusing on the  book, I’m also the editor-in-chief of the Rooted in Rights blog and we are a media  platform that amplifies authentic stories of disabled people. Especially disabled people  of multi-marginalized identities. Our priority is really filling gaps in media representation,  and telling the stories that are not being told. And then I also am the Digital Content and 

Community manager for the Disability and Philanthropy Forum, which is a project to  promote learning and dialogue to make philanthropy a much more meaningfully  disability inclusive space. I’m also a communications consultant in general, and I like to  joke that I am a professional disabled person. I feel like I’m just disability 24/7. And I’ve  carved out this niche for myself, but I really really love being able to wear all these hats  and the crux of it is that I get to support other people and their journey to learn about  disability and to tell their stories.  

Clare [00:04:13] 

You know, I mentioned how I feel personally that your writing style really invites others  in and we just kind of talked about how intentionally you do that. Is that something that  always came naturally to you? 

Emily [00:04:25] 

I think on the one hand maybe it comes naturally. But on the other hand I’m very  conscious of it because when I first graduated college, I had originally thought that I was  going to be a high school English teacher. And then I switched gears and I said, I want  to be a disability Advocate. I don’t know what that means. But I know that I want to do it.  So if there was a gradual transition, where as I began to understand myself, I also  started to realize that if I’m struggling to talk about disability and think about disability  and understand it from a cultural perspective and an identity perspective, how must  non-disabled people feel about this concept but seems scary and alienating because  that’s how Society depicts it? So, I would say that it was a skill that I had to hone, honestly, to be more accessible and relatable. People have told me that I generally am  a good communicator and able to bridge gaps and overcome those awkward barriers  and moments in conversation. But at the same time, I have had to actively continue to  practice making sure that I’m not writing in a way that feels alienating.  

Clare [00:05:50] 

It sounds to me like an intentional decision to take on kind of that identity rather of  disability activist. And I think one thing that’s important to keep in mind and that I  constantly try to remind myself is that not all people who have disabilities, choose to 

focus on access and disability as an area of expertise or as a career path. But you did,  and so I’m curious if there was a certain moment or experience where you decided you  wanted that to be part of your professional path.  

Emily [00:06:24] 

I’m actually really glad you brought that up because it’s a conversation that I often have  in more private quiet spaces. Where people ask me why I chose to devote the entirety  of my life, pretty much, to something that is also an identity. And to be quite honest, it  can be pretty tiring because when my job is done at the end of the day, I don’t take my  identity off with it. It’s not something that I put up on a shelf. Not having that separation  between the work that I do and the person that I am can take a toll. On the flip side of  that, I think there’s also this expectation that when someone has a disability, that means  that they have to be an advocate. They have to be an educator. It’s their job because  they’re in this particular body. And I just don’t think that’s true. This was a path that I  chose to take because it felt right for me, but I think that you are doing just as much for the good of the cause, if you really want to call it that, if you are a disabled person who  is simply living your life. And I think that we need to honor and acknowledge that not  every disabled person is going to go about existing in that body in the same way. For  me, it was something that I really wanted to do because I never saw myself reflected  back at myself in the media in the world around me with the exception of, of course, my  mom who also have a physical disability. And I realized that if I was struggling with my  own identity, I likely was not alone in that. And so, I knew that I wanted to make this a  career path for myself, but I also want people to understand that that should not be an  expectation that we have for every single disabled person.  

Clare [00:08:20] 

That’s very well said. And I think it’s just important to mention that we all have a part to  play in noticing that lack of representation in order to change what that looks like. Do  you mind sharing a little bit more about your disability identity?  

Emily [00:08:35] 

Yeah, absolutely. So, I was born with my physical disability. It’s called Larsen syndrome. 

It’s a genetic joint and muscle disorder and it affects, I believe, one and a hundred  thousand people or something like that. It’s considered pretty rare. And my mother has  it, and her younger brother, my uncle, have it as well. So disability has, in a way, always  been a part of my life in the sense that I grew up around someone who’s disabled. I had  that role model in my life. And I feel honestly very lucky for it. I think that when a lot of  people hear that my mother passed her disability on to me, there’s this immediate tragic  assumption about it and they think that it’s the terrible horrible thing that we’ve both  suffered. And I’m not going to say that it’s easy, I’m not going to say that it’s always fun,  but I am going to say that I feel very lucky to have that kind of bond with my mom. And I  think in a way that did a lot for me in terms of forming my own disability identity. My  mom and I were just having this conversation very recently, actually. We have it quite a  bit about how when she was growing up, she didn’t have anybody who looked like her at  all. And for me while there were not many people who looked like me, my mom looked  like me, and that was a pretty big deal. And so I think that was the first and most  important thing that helped me figure out who I was and helped me shape my own  identity, but it didn’t always come easily to me. And it still doesn’t. I don’t want people to  think that I have reached some plain of enlightenment where I just love being disabled  all the time.  

Clare [00:10:59] 

Yeah. I think you do a really wonderful job of talking about that with honesty in the book.  What’s one thing that you think your younger self would be most impressed by if they  saw what you were doing now? 

Emily [00:10:36] 

Interestingly enough, I think that my younger self was mostly concerned with whether I  would find acceptance and whether I would find a path that was right for me. And so, I’m  sure she would be very proud of all of the work-related accomplishments, but I also  think that she would want to know that she was able to form lasting friendships and  relationships. Because truth be told, I don’t think that young Emily thought that she was  going to find a boyfriend. I don’t think that young Emily thought that she was gonna find  her way into pursuing her passion. But as proud, as I think she would be of my career 

related accomplishments. She would just be very happy to know that we are getting more comfortable with ourselves every day. And, you know, there are people who love  her and love me just as we are.  

Clare [00:11:38] 

Yeah, that’s amazing. And it’s so spot-on with the idea of inclusion that, at the heart of  all of it is, is relationships, right? And belongingness. So, I think it’s really powerful to  hear you reinforce that and what acceptance looks like, which is different for everybody  too, right? 

Emily [00:11:53] 

Yeah, absolutely. And also self-acceptance because when I was younger I wanted to receive validation from other people. And now, while I certainly appreciate having loving  relationships in my life, I also feel like my most important relationship is with myself. And  I worry that people are going to think I’m suddenly turning into some self-help podcast  guru situation, but I don’t mean it like that. I just mean to say that I had quite a few  reckonings with myself internally about how I felt about who I am. And I still do, but at  the end of the day, I like myself and I don’t think I could have said that when I was  younger. 

Clare [00:12:40] 

It’s something that I think that none of us make enough time for in thinking about the  relationship with self because we’re so consumed with all of the things in our  environment and the stressors and the media and whatever it is, that’s it’s easy to forget  about that.  

Clare [00:12:54] 

Yeah, you’re so spot on there, and I want people to understand that even if they don’t  understand what it’s like to be disabled, there are a lot of universal experiences that we  can all find common ground with. And one of them is grappling with how we feel about  ourselves just because someone is non-disabled, doesn’t suddenly mean that they don’t  have issues with self-esteem and self-love and self-acceptance and self-care. The ways 

that we go about handling that might look different, but that is still something that we  absolutely have in common.  

Clare [00:13:32] 

Yes, and I think, you know, it’s a great segue into talking about the book because you  really do work hard in your delivery to create that feeling of universal experience. How  did you know where you wanted to put your energy in the ideas into one book?  

Emily [00:13:50] 

So, interestingly enough, the book started because of a podcast. So, in 2019, I was on  the podcast, Call Your Girlfriend. And then shortly after that podcast went live, I got an  email from a booking agent, who said, “have you ever thought of writing a book?” So  from there, we started a back-and-forth. And initially I thought that I might write a  memoir about my experiences growing up as the disabled child of a disabled parent, but  I also think that I have a lot of life left to live and I’m nowhere near the point where I’ve  earned a memoir, yet. And so my agent said to me, “you know, you do a really good job  of talking about disability in a way that makes sense to people. Why don’t you write a  book about it?” We recognized that while there are tons of pieces of media, created by  disabled people, it’s hard to find starting points to this conversation. So for me, this is all  about offering a starting point. And I feel very, very lucky that the stars aligned in a way  to give me the opportunity to help provide that starting point for people.  

Clare [00:15:10] 

I read it. And of course not only met but exceeded my expectations and I was really  struck by the fact that it’s so consumable, but at the same time you preserve the  complexity of the issues that you’re discussing while also making it digestible. So it  seems like it had to have been such a delicate balance to do both of those things? 

Emily [00:15:32] 

Oh, it was such a constant tug-of-war between wanting to convey a lot of the nuance  and also not wanting to completely lose people. And so I’ll let you in on a secret- when I  first sat down to start writing the book, I began to write the introduction and I had written 

a few pages and I started reading it to my parents. I like to joke that my mom was my  editor-in-chief, which is absolutely what she was throughout the whole process. And  when I read my first attempt of the introduction to my parents, they were like, “absolutely  not. This is so over everyone’s head and it’s so full of jargon and you’re just going to  lose people immediately,” and I was like, “you know what, you’re right. I have to snap  out of that head space.” So I had to go back to the drawing board until I felt like I was  writing in a way that welcomed people in without talking down to them.  

Clare [00:16:31] 

And I think you do that with your humor. There are points where you integrate bits of  humor that just make you just a person that’s talking to the reader, you know, and I  wonder how intentional the use of humor is from your point of view.  

Emily [00:16:47] 

Very intentional. I’ve also always been that way and sometimes it does come across as  self-deprecating humor, probably more than it should, which is a whole other issue, you  know, being a young disabled woman. I think that we can all relate as people who are  younger and who struggle with self esteem, they probably make jokes at their own  expense, but I also learned to use humor as a mechanism to forge connections with  people. And so that’s probably something that was initially, carefully practiced. And now,  I, it’s just a habit. I rely on humor because it helps me create those connections, but  also, I think it makes other people feel more comfortable. And I don’t think it should have  to be my job to make other people feel more comfortable, but it definitely makes my life  easier when they do. 

Clare [00:17:44] 

There’s a point in the book where you kind of use just a really subtle one-liner, that kind  of inserts, a little bit of humor, but you use it to really build up to sharing some really  personal insights. So I’d like to ask you to read that excerpt for us. 

Emily [00:18:14] 

“My relationship status with disability is complicated. On one hand, my disability is an  integral facet of my being. It is completely intertwined with how I think and how I move. I  consider to be an identity. In many ways, my defining identity. Although I don’t want to  be solely defined by it. Confusing, I know. I take pride in being disabled and it’s brought  me to a whole culture and community that I love. But on the other hand, it’s not always  sunshine and roses. I struggle with physical pain every day. I feel the emotional toll from  lack of acceptance, sometimes from others, sometimes within myself, but I am disabled.  It’s part of me.” 

Clare [00:18:42] 

It’s a really powerful excerpt. You know, when you say “I feel the emotional toll from lack  of acceptance, sometimes from others sometimes within myself.” What did you mean by  that? 

Emily [00:18:53] 

Existing in a disabled body pretty much guarantees that you’re going to encounter  stigma and discrimination from people, from systems, from the world around you. So it’s  really hard not to internalize that. I am constantly preaching self-acceptance and fighting  against ablest attitudes and pushing back against people who don’t accept disability, but  that doesn’t mean that I’ve somehow mastered that within myself. And when I’m  surrounded day in and day out by messages that say that I am not enough that, I am  not worthy, that something is wrong with me, with my body, that I shouldn’t be here. It’s  really hard not to internalize that. I have a very hard time accepting myself on certain  days and it’s a constant active practice for me to push back against all of those  messages that I’m internalizing that are essentially telling me that I am wrong and my  body is wrong and my life is not worth living.  

Clare [00:20:08] 

You know, it just makes me think of just the exhaustion you spoke to earlier that’s just  sounds so relentless.

Emily [00:20:15] 

Yeah, I think I struggle to strike a balance between not wanting to evoke pity because I  don’t. That’s not what I want when I tell people about the challenges of being disabled.  But at the same time, I want them to begin to develop an understanding of what it means to be viewed as an ‘other.’ As someone who is somehow less valuable as a  human being simply because of an identity of a characteristic of a trait. And I say all this  with complete consciousness that I still come from a place of a lot of privilege. So, even  though I am physically disabled and I am a wheelchair user, I’m also a white woman  who communicates verbally and I’m lucky to have been brought up in a middle-class household. And I am, you know, cisgender, which means the gender that I was  assigned at birth is the gender that I identify as now as a female and I’m heterosexual.  So, I say all this because I recognize that there are a lot of ways, where even though I  still grapple with discrimination and struggle with internalizing it, I have a lot of privilege  and can’t speak to the impact of that kind of discrimination towards people with different  life experiences than mine. 

Clare [00:21:43] 

I loved the way that you touched on intersectionality and privilege and the book. It was  just another example of something that I think you unpack in a really consumable way.  Just thinking about how really no topic goes untouched in the book. I’m wondering, did  you experience any unexpected, learnings during this process?  

Emily [00:22:05] 

I think that I had a couple of moments where I had to reckon with gaps, in my own  knowledge about my understanding of disability. And a lot of that came when I was  writing about the broader movement, especially in relation to talking about the different  subsets within the disability community. So the disability justice movement, for example,  the independent living movement, the self-advocacy movement. That was not  something that I had in the first iteration of what the book was going to look like. And  then I realized that I need to check my own privilege just like I’m asking everybody else  to do because I’m one disabled person. I’m not the authority on disability at all. So I 

wanted to make sure that I was conveying to the reader that there’s a whole world out  there of disabled people and it’s really, really crucial that we understand that, no two  experiences are exactly alike. And so I think what was most unexpected for me was  how challenging it often felt to try to make sure that I was repeatedly checking my own  privilege.  

Clare [00:23:23] 

It’s making me think also about a really critical term that you unpack in the book that a  lot of people don’t talk about and it’s ableism.  

Emily [00:23:32] 

Yeah. So I think that ableism is a word that feels like jargon to people, but I want them  to understand that it is something we need to talk about and it is something that’s very  real. I generally try to define it as simply as possible and say that it’s attitudes and  actions that discriminate against disability. But truth be told there’s a lot of complexity  and nuance behind it. And I actually really encourage people to take a look at the work  of Talila Lewis who has put together a much more in-depth version of a definition of ableism that also acknowledges the way that different types of oppression and  discrimination intersect. And so I want to be very clear that I don’t think that I have the  most thorough definition. For me it’s a place for people to begin when they’re trying to  understand what ableism is.  

Clare [00:24:35] 

It’s so infrequently included in conversations around diversity and inclusion. Why do you  think that it hasn’t been at the forefront? 

Emily [00:24:43] 

I think that people are afraid to talk about disability. And I think that there’s an  assumption that simply by talking about it, you’re going to offend when the exact  opposite is true. I would much rather you talk about it and not simply dance around it or  pretend that it doesn’t exist. A lot of that probably has to do with the discomfort around  the fact that anyone can become disabled at any time. And that’s a whole lot to grapple 

with when you think about the ways in which your body can change or your mind can  change and you don’t want to acknowledge that. And on top of that, we’ve been told that  there’s a standard of normalcy that we all need to adhere to. And so, talking about  disability it seems like we are revealing the great secret that minds and bodies can  change. And that there really is no standard of normal. And I think that frightens a lot of  people. You know, and on top of that, I think that we don’t consider disability to be an  identity category. We just tend to look at disability as either being very inspiring or as  being very tragic. And we don’t stop to think critically about our attitudes and our actions  around disability. 

Clare [00:26:05] 

So there’s a portion of the book where you’re talking about ableism and you disclose a  personal confession to the readers, and I’d like to invite you to read that next excerpt for  us, Emily.  

Emily [00:26:13] 

“I need to make a confession; as hard as I fight against ableism there, have most  definitely been times when I’ve been ablest towards other disabled people, and it’ll likely  happen again. I’m not proud of this, but I believe that being transparent about our  missteps is how we make progress. There’s no magical force field preventing disabled,  people from being ablest. We all need to check ourselves to make sure that we’re not  holding onto ablest ideas and biases. Part of this means recognizing that we can’t talk  about ableism without acknowledging that it’s often deeply interconnected with other  forms of discrimination.” 

Clare [00:26:54] 

So, why was this so important to you to disclose in the book?  

Emily [00:27:00] 

I don’t ever want anyone to think that I assume I am perfect at navigating conversations  about disability or that I have evolved beyond the point of being ablest because that’s  simply not true. I am a human being and I am fallible just like everybody else. And also,

I did not grow up surrounded by a lot of disabled people and so my views were very  very narrow in scope. I understood that I had a physical disability that I was a  wheelchair user and I was essentially taught, and I say this in all sincerity, that I should  be thankful that nothing was wrong with my brain. And I wish that it hadn’t taken me so  long to unlearn that mindset and to understand how ablest it was to place a value  judgment on people with intellectual disabilities in order to make me feel better about  myself as someone with a physical disability. We can’t just assume that our disability  experience is the only one. So that’s why I really wanted to emphasize that I have been ablest. We need to understand that none of us are perfect in that way.  

Clare [00:28:29] 

What did it feel like for you to actually put that in writing?  

Emily [00:28:32] 

It was really scary to put that in writing because it’s a direct admission that I have done  to people what I don’t want them to do to me. And when the golden rule is ‘treat others  as you want to be treated,’ how can I ask for people to treat me in a way that is  equitable and just and not ableist, if I have perpetuated ableism? But I think the most  important thing is that we’re continuing to learn and that if we make a mistake were  willing to acknowledge it.  

Clare [00:29:06] 

I think that is what invites people into the book with you. And that’s what invites people  into the movement with you- is that none of us are perfect. None of us get it right all the  time. And that’s the starting point for changing the way we think about and talk about  things is recognizing it. And I think that’s one of the many powerful things that are going  to come out of this book, Demystifying Disability as it reaches everyone. And I’d like to  know, you know, when you think about your first book getting to readers, what are your  desired outcomes for the impact?  

Emily [00:29:41]

That’s such a great question. And really my hope is that this becomes a conversation  starter for people. It becomes a place where they can go to get some of those initial  questions answered and maybe it will help them become more consciously inclusive,  that they’ll make things more consciously accessible. I want them to know that there are  no silly questions about disability when you’re first starting to learn about it. And I want  them to know, most importantly that this is just one person take on the disability  experience and on what you need to know about disability. When someone finishes my  book, I hope that they will move on to another and another and another. I hope that this  is the start of a journey. I hope that it’s the floor, not the ceiling.  

Clare [00:30:36] 

Amazing. So where can people get the book, Emily? And why should they get it?  

Emily [00:30:43] 

I first and foremost want to encourage people to pick up Demystifying Disability from  their local bookstore or an Indie bookstore. I really, really would like them to support a  local business, if possible in purchasing the book. If not, you can get it on the usual  places where books are sold. And why should you get the book? Disability is something  that is relevant to everyone. There is no one whose life disability, doesn’t touch in some way. And I don’t mean that in a negative way. Disability simply is a fact of who we are  as a society, as human beings, and I hope that we’ll all take the time to understand each  other a little better. And I think that Demystifying Disability is a great place to start that.  

Clare [00:31:30] 

I’m so excited for people to read it. I do want to say, Emily, on a personal note. Thank  you, again. I know I’ve said it earlier in our conversation but, not just for being here with  me today and for your writing, but just, for being such a genuine person, being open to  connecting with me. You’re incredible level of integrity is really motivating for me as a  just as a professional. And, you know, in addition to your talents as a writer, you know,  how to ask really powerful questions. Whether that’s in your book in your writing,  whether it’s through interactions we’ve had, it’s really pushed me to grow. And I just I 

want to say thank you for that because asking questions, as part of how we make  change, right? And how we create the conversations. 

Emily [00:32:13] 

I couldn’t have said that better myself. And Clare, I’m so grateful that you reached out to  me. I think that more people should just be willing to start those conversations. I know  that maybe not everybody is receptive to people just reaching out online and I never  want to put that pressure on anyone or that expectation on anyone, but I also think that  there is so much value in starting a conversation and taking that very bold step. And so  when you reached out to me, I could not have imagined that it would bring us to this  podcast recording, but I’m so grateful that you did. So thank you for doing that. Truly.  

Clare [00:32:53] 

Thank you so much for being here. Really, appreciate your time.  

Emily [00:32:57] 

Thank you.  

Clare [00:32:58] I’d like to thank Emily for sharing her story and insights with us. Click the link in the  episode description to order her new book Demystifying Disability. Join us next time for  my talk with Jordan Saunders, CEO and founder of The Resource Key, a company that  focuses on inclusive branding. Until then, be a part of the inclusive movement by rating  and subscribing to Amplify Inclusion and stay connected with us at AspireChicago.com.  This episode was co-produced and engineered by Subframe Sound. This season is  made possible thanks to generous contributions from First Bank of Highland Park and  members of the Aspire community.