Episode Transcript
Keith: Welcome to Disability Empowerment. Now, Season 2. Today I'm talking to Emily Ladau, the former Editor and Chief of Rooted in Rights, author of Demystifying Disability: What to Know, What to Say, and How to Be an Ally, the creator of Words I Wheel By and the cohost of the disability podcast the Accessible Stall. Emily, welcome to the show.
Emily: Hey, Keith. Thank you for having me.
Keith: So, of course, I've followed your work for a number of years. We've crossed paths a time or two, but for those listeners who aren't as familiar with your work as I am, tell us about yourself, the work you do and why you do it.
Emily: Yeah, sure. So a little bit about me. I have a physical disability called Larson Syndrome.
It's a genetic joint and muscle disorder, and so I use a wheelchair to get around. My disability is very much a part of my identity and what makes me who I am, and so I am incredibly passionate about educating people about disability and making the experience of disability more accessible and understandable and relatable to non-disabled people who may be unfamiliar or uncertain or just generally fearful of the concept of disability.
And so anything that I can do to foster conversation around disability is incredibly important, and that's what drives me to do the work that I do.
Keith: So your mother and your uncle also have the same disability you do. Tell me about growing up with that connection to your family, particularly with your mother. That is a very interesting connection. So talk a little bit about that.
Emily: Yeah. It's something that I really value in my life and something that I think is very powerful.
I know that a lot of people might perceive it as tragic that my mom passed on her disability to me, but for me, it's really something that has created such a strong bond between us and growing up in an environment where I was able to see not one, but two adults with disabilities in my life who were living their own lives and who were thriving, was a really positive thing for me. Especially because I went to a mainstream public school, and so I was not around kids who had apparent disabilities every day, and so having that presence of disability in my life was very important to me, even though I don't think it was something that I was always super conscious of. But looking back on it, I realized that it really was something that shaped a lot of who I am. Just having those role models in my life.
Keith: So you got your advocacy start on Sesame Street, is that correct? Talk about that experience and why that was meaningful for you.
Emily: Yeah, that's right. So when I was 10 years old, I had the opportunity to appear on multiple episodes of Sesame Street and I played a version of myself and I was a kid with a disability moving into the neighborhood.
And it was a really cool experience because I was able to share a little bit of my story on this very big platform, and when I was little, I was always looking for representation and looking to see myself reflected back at me in the media that I was consuming, but I didn't often see myself and then I realized that not only did I want to see myself, but I could also be that person for other people and show them that it's really important to share stories of disability.
And so having that experience was really a launching pad for me in so many ways that led to my passion for storytelling and for advocacy, and it just reminded me of the power of the presence of disability on all platforms.
Keith: So what happened next? After that, you did multiple episodes of Sesame Street and that's a huge platform for kids to teach them and to introduce them to new concepts. What happened with your advocacy directly after those experiences?
Emily: You know, I was pretty young at the time, and so I don't think that in that moment in my life I fully realized the power and the gravity of that opportunity but it was something that I carried forward with me.
So after my time on Sesame Street, really, I spent the next several years evolving in terms of how I thought about my disability and growing into it as an identity because it wasn't always something that I fully embraced as part of myself, but, I would say in terms of what happened next, it was just many, many years of figuring myself out, and it wasn't until I got to college that I really began to realize that I wanted to fully and wholeheartedly embrace my disability as part of who I am and not just ignore it or, you know, push it to the side because it does define and shape so much of my life. So that was, you know, a turning point that took quite a long time to reach after my years on Sesame Street. But I think that, it was an important journey for me to have to really figure myself out, and I'm definitely still on that journey, but I would say that, you know, when I was younger, that was the time that was really formative for me in terms of figuring out how I related to my disability.
Keith: So going back to your parents, your dad doesn't have a disability, am I correct?
And your mother had the same disability you do?
Emily: That's right.
Keith: How did they meet?
Emily: How did they meet? They actually met through a Jewish matchmaking service back in the days before there was a good old Tinder and Bumble and Hinge.
Keith: Yeah. Yeah. So I'm wondering, I know you've dated nondisabled partners or partners without disabilities and you talk about in the book some experiences that your parents have with dealing with stares of people. Mis-identifying your dad as your mother's caregiver and that’s seamlessly never ending. How did they deal with public perception of their relationship and what did you learn about it that carried into your relationships later on in life.
Emily: That's a good question and you know, to be honest, when I was younger my mother's experience of disability was not the same as it is now. In terms of things like how she got around and the amount of help that she needed and so when I was younger, I guess I didn't really give it too much thought because I think public perception was, in most cases, more related to them caring for me rather than their relationship. Although there was, you know, a time when I was really little that someone you know, saw my mom, pushing me and they could tell that we were both disabled and they said, you know, look at what that woman did to her daughter.
So I think that a lot of the perception was really in connection to me.
But I guess I always had it in my head that I needed to date somebody who was non-disabled because otherwise it would call more attention to my own disability and I was always worried, you know, about the caregiving aspect, but, looking at, you know, how my parents kind of support and help each other through things I realized that caregiving is very much a two-way street and it's really important to understand that just because somebody is disabled, doesn't mean that they can't also be a caregiver and provide support in a relationship.
And so I've since, you know, dated both disabled and non-disabled people and I think what I've come to realize is, you know, you have to let public perception just kind of roll off your shoulders. I mean, I've gotten all kinds of frustrating comments, everything from like, oh my God, that's so cute to like you know, what is he doing with you?
Or like, why is he with you? And I think that all of those sentiments can be really frustrating, but if you internalize them, then you're the one who's letting it affect your relationship as much as you shouldn't have to be the one who's kind of like letting it go. You know, and people shouldn't be saying stuff to you in the first place.
I've also just come to realize that the only perceptions that matter about a relationship are that of you and the other person in the relationship.
Keith: Indeed. So the most cringeworthy parts of the book, which is otherwise extremely readable and accessible, is when you are talking about certain instances of dating or getting, for lack of a better term, hit on, where you are on the date and, apologies to listeners this is for historical contexts. This part really made me cringe when a guy actually told you on a date “I am so retardedly attracted to you”. What was that like to hear and try to process those words? I know you didn't go on the second date with that guy, but try to think back. What was running through your mind when you heard that from the guy you were on a date with?
Emily: That was, that was a doozy of a moment. I think for me, I was just really taken aback, but I think it was also a reminder that not everybody has the awareness of what's appropriate and acceptable in terms of language and you know, I'm not excusing this guy and what he said at all, but I think it made me more aware of the fact that I kind of exist in a bubble of disability activism where I know what is okay to say and what is not okay to say.
I understand what's a slur and what's not, and you would hope that, you know, any person would know that saying the R word is a slur, but I think that some people just really don't have that consciousness, and so I kind of thought about whether I should confront it or whether I should, let it go, and I mean, I told him that it, you know, made me uncomfortable, but I think I, I also just was like, this person is not someone that I want in my world, this is not a person who I think really is going to get me and understand what's important and what my values are.
Keith: So another cringe worthy moment and you mentioned in the book that you've experienced it constantly or repeatedly on dating sites or dating apps that even before hello, guys would shamelessly ask you the question, can you have sex?
Emily: Yes.
Keith: What is that like as the advocate as a woman, as a human being? How do you confront and process the utter shock of dealing with such an intimate question like that from the GetGo?
Emily: Well, I think that the thing is, it's not shocking to me at all anymore. I'm just sort of used to people being wildly inappropriate in the questions that they ask and I think that's a commentary on the fact that people really do not understand or accept disability nearly as much as I would like them to.
You know, but it just feels like such a rude and reductive question because you're not thinking about me as the whole person. You know, you're immediately just wondering about one part of a relationship and, you know, I don't think that it's an unfair question to talk about things like sex, but I also just don't think that that is where a conversation about someone's disability should start because there's so much more to me as a human being than that one detail.
And so it's really annoying to me when that's what people choose to start with and I've just, you know, since decided that if somebody decides that that's the first question that they wanna ask.
Then I've decided that it's not really their business and I'm not really interested in taking things any further because they clearly don't want to get to know me as a human being. They just want to ask an invasive personal question.
Keith: Good for you. I mean, I can't even fathom how to answer such an intimate question before, hello, how are you doing, et cetera, et cetera, on and on.
So we met. I'm trying to remember the year, but the year doesn't matter. We met when we were both studying the masters degree in Disability Studies from the CUNY school professional studies, and we had one or two classes together before you disappeared from that program, and I didn't understand why until I read the press release that you took the Editor and Chief job of Rooted in Rights, a newspaper publication that focuses on disability and disability related news. How did that job come about?
Emily: Yeah, so I did do a couple of grad school classes and then I decided that I wanted to go a bit of a different route and so rather than continuing on in grad school, I ended up really focusing on developing my career through work experience.
I know that, you know, choosing to go to school or not go to school is, you know, a really personal choice for people and for me, I feel like I made the right decision to just pursue my career without continuing the degree program at that time and just a couple of years after choosing not to go that route, I was actually already aware of, Rooted in Rights, and then I was at a conference and I met two of the people who worked for the initiative at the time, and we connected while we were there, and we talked a little bit about how we might be able to work together.
And the first project that I did for them was filming a video for what was called their storytellers project, where I talked about the relationship between me and my mom.
So, after doing the Storytellers project, I realized that I so enjoyed working with Rooted in Rights that we decided to have me come on to the team as the Editor and Chief of their blog, which at the time really meant building it from the ground up, just figuring out how to create a platform where disabled people could share their stories and fill in a lot of the gaps in mainstream media around disability and around topics that weren't being talked about and weren't being given space.
So it turned out to be, you know, a really wonderful opportunity and I feel really, really lucky that they brought me onto the team to support other people in sharing their words.
Keith: So before you did that, correct me if I'm wrong, you had your own platform in Words I Wheel By, which is a very interesting title.
Do you remember the genesis of how you came up with that title?
Emily: Yeah, so Words I Wheel By started out as my blog and now it's actually transitioned to a monthly email newsletter that I send out and it was actually my mom's idea. We were throwing around different titles and somehow, you know, Words I Live By,
came up and Words To Live By and as a writer, words are my business and words are my passion and so my mom, you know, made a joke, Words I Wheel By, a play on that phrase and just thinking about me as a wheelchair user. And it stuck. And so that was how the name came to be.
Keith: So you also co host a disability podcast called the Accessible Stall.
Talk about the genesis of the name of. What it's like to co-host a podcast and you said in your book, you are either partly deaf or hard of hearing. How it's doing a podcast with hearing loss.
Emily: Yeah, great questions. Luckily my hearing loss doesn't really impact me when I'm just kind of engaging with people on, you know, a one-on-one or two-on-one basis.
It's more so, when things are loud and crowded that it gets sort of difficult for me, or, you know, if I'm not really focusing on something, it can be hard if I have the option to lip read or things like that. But I generally don't have an issue when it comes to the recording process.
And, you know, as for the name, the Accessible Stall, it really came about because I was joking with my co-host about the fact that, so often, friend groups, you know, especially friend groups of girls back when I was in school would go to the bathroom together and that's where they would, you know, have chats about things just kind of hanging out in the bathroom.
And so I said, you know, why don't we just invite everybody into the bathroom with us and we can have real talk in the bathroom, like, hang out in the accessible stall.
What started out as a joke, turned into the name, and it just kind of stuck and it's been something that we've been doing since 2016. It's a really cool experience just to be able to talk about different disability issues and to be a platform where people can tune in and relate to us.
Keith: Are you surprised by the longevity of the podcast that you just said that the name started out as a joke between you and your co host and it sort of evolved into its own community hub, like other podcasts? What is that like doing a long running podcast?
Emily: You know, I don't know if I would say I am surprised. I think if anything I have never put pressure on the project to, you know, continue. It's really just as long as we enjoy making it and as long as people wanna listen, we'll keep going. And if anything, I think it's a testament to the fact that people are really hungry for content around disability, and it makes me so happy every time I learn about a new disability podcast, you know, like this one, like yours because it's just a reminder that there are so many perspectives out there and so what maybe started out as a bit of silly fun has just become a way to engage with the disability community, and that's always what I wanna see more of.
Keith: You recently left your position as the Editor in Chief of Rooted in Rights and that seemed from the outside looking in to be a dream job. Was that hard to do and did the writing and publication of your book influence or inform your decision?
Emily: I think for me, what I wanted was to give somebody else the opportunity to shape the blog through their lens and their perspective. I am very aware of the fact that I exist at the nexus of both privilege and marginalization, and so my editorial perspective was that of a white woman with a physical disability who, you know, has never experienced food insecurity or housing insecurity, who identifies as the gender that I was assigned at birth, who identifies as heterosexual.
And so you know, I can only speak to disability from my perspective. And I felt like as much as I loved that work, it was time to shift the lens and bring in a new perspective to lead the way. And there's now a really, you know, fantastic new editor at the helm, but I'm still doing a lot of editor work.
Right now I am the editor of a blog series for the Century Foundation's Voices of Disability Economic Justice Project. So I'm still editing, but I feel like everything has its time and sometimes it's really important to shift the power and bring in new voices and new people and so while I'm still, you know, doing the work that I love so much, I am also trying to make space for other people.
Keith: So you've been an editor of a publication for quite some time, and you recently became a full fledged author. Tell me about those two processes and how they compare and contrast in your mind and was one easier than the other, or did they both lend themselves to each other?
Emily: Oh, being an editor is absolutely easier than writing your own stuff.
You know, not to say that being an editor is easy, but it is to say that when somebody else has put the words on the page and your job is to support them in shaping those words, that is entirely different than, figuring out what's going on in your own mind and putting that down on the page. Not to mention that as someone who is used to editorial work, I'm always thinking about how I can edit my work as I'm writing, which sometimes gets in the way of actually writing.
And so the two experiences are definitely very, very different. I think that neither is easy, but for me, editing is definitely easier than the actual writing process.
Keith: So I mentioned at the top that you published very recently, the book Demystifying Disability: What to Know, What to Say, and How to Be an Ally.
Talk about the genesis of the project and actually writing it in, putting it all together, and then the publication of the book itself.
Emily: Well, back in 2019, I co-hosted an episode of a podcast with a friend of mine. We were guest co-hosts and the show was called Call Your Girlfriend, and it was a show that really dived into all kinds of issues around social justice and feminism and friendship and you know, different lived experiences of different groups of people.
And so the regular co-hosts turned over the microphone to me and to my friend and after that episode went live in which we talked about our experiences of disability, a literary agent who realized she had read my writing before, reached out and said, hey, have you ever thought of writing a book?
You know, it had been at the back of my mind, but it wasn't a project that I immediately thought of working on. Then, after I connected with my literary agent, I kind of just dived into this project and realized that, you know, there's a ton of amazing work out there about disability but what I really wanted to do was provide a foundational overview of some of the things that I think people are uncertain of that keep them from talking about disability or engaging around disability.
You know, like language and history, and etiquette and so, for me, writing a book was really an opportunity to contribute to an already ongoing dialogue and conversation.
Keith: So talk about the writing style of the actual book, because I just read it again yesterday and it's very accessible and easy to understand, almost like another master class in disability 101 for people who aren't as aware of disability as disability advocates are.
The writing style, it's really clear. Talk about that process and what was that like?
Emily: Well, it's really important to me to communicate in a way that's as clear and accessible as possible, and so, I want people to feel like they can approach me, and I want people to feel like they're just having a conversation with a friend, and so that was very strategic and intentional in how I wrote the book, but also it's how I talk in real life. I mean, there's, you know, nothing fake about it.
That's just me having a conversation that I happen to put down on the page. And I also feel like if you are talking about a topic like disability and you're not making it accessible, then you're often excluding the very groups that you are claiming to, you know, want to be including.
And that is not something that I felt was appropriate to be writing, you know, with a lot of academic jargon, that excludes people from the conversation. And I also created a plain language version of the book because I wanted it to be more cognitively accessible to people, and so I collaborated with someone named Becca Monteleon, who's, you know, really skilled in plain language translations and overall, the whole process of writing the book was meant to be an exercise and meeting people where they're at. And I also remind people that you know, I'm only one person and I'm not the sole expert or any kind of expert on disability. I am the expert on my own experiences and so I didn't set out to write the Bible or the Encyclopedia of Disability.
It was just, you know, one person's perspective on some of the key information that I hope people will learn about disability.
Keith: So you chose to include several different advocates with different disabilities and you highlighted different films, different books, different hashtags out of what I assume is hundreds of people, film, books that you personally know and have viewed or have read or have followed.
Was that process hard of figuring out who and what to include and what not to include?
Emily: Oh, absolutely but the resources that I included are really just meant to be a sampling. It is important to me to point people towards other places that they can learn from and never to presume that I should be the only book that they read, or the only person that they learn from.
I would never, ever, ever want people to just stop with my book. I want it to be one point on the journey, and I feel like somebody should write a book about other books that exist on disability. That could be a whole several hundred pages in and of itself. So, in terms of narrowing things down, I just tried to give as much of an overview as I could.
Keith: So I had just finished an interviewing in class in continuing education at Stanford, and the teacher asked me to talk about interviewing people with disabilities because I told her about the podcast and I mentioned your book several times because literally the tagline is what to know, what to say, and how to be an ally.
And so, I promoted your book because I had just finished the second or third time around, and I listened to the audiobook and I don't know about you, but I personally geek out on authors who read their own work to their listeners. Talk about translating the book from a readable copy to actually reading it to the listener and what that process was like.
Emily: Yeah, you know, it was really just a couple of days in a recording studio reading my own words out loud, and it was a really interesting experience because it was a chance for me to provide emphasis in certain areas to say things with a certain inflection or a certain tone, to let readers in on the joke or to highlight when something was really serious or important.
And so it was really just about taking what was already on the page and finding a way to express it to my listeners and I really enjoyed it.
Keith: So you are becoming more well known in the disability community, but also outside of the disability community. Your work is or has a broad reach. Talk about how that makes you feel and how that empowered your passion to keep going.
Emily: Yeah. You know, I never set out to do this work because I wanted attention or because I wanted people to praise me. I set out to do this work because I wanted to educate about disability and I wanted to do whatever small part I could to make the world more accessible and more inclusive.
And so, you know, while I am always so honored when somebody knows who I am or recognizes my work, I think my real priority is just in reaching as many people as I can. Not because I want them to know my name, but because I want them to begin to dive into talking about disability. So yeah, sure, it's, it's nice if somebody knows me, but that's not really the driving force behind the work.
Keith: So you've spoken across the US from the US Department of Education to the United Nations, been featured in several publications and have written a very accessible book about understanding disability for those that aren't as aware of disability as you or your fellow advocates are. Tell me what is next for Emily Ladau and her advocacy?
Emily: I always say, you know, one of two things, either I wish I could put myself out of business tomorrow because the world would already be accessible and inclusive.
Keith: Amen.
Emily: But more realistically, I would say, you know, if I'm doing the same thing in five years that I'm doing now, then I would be really happy about that because it would mean that I am continuing to connect with people and engage and educate people.
And that is what I want to do the most. So, you know, the five year plan is really just to continue what I'm doing. I do plan on working on another book at some point but for right now I'm just, you know, involved in a lot of projects that I'm really passionate about and hoping to keep going into 2023.
Keith: You also run a consulting business, talk about that little.
Emily: Yeah, I’d love to connect with people around improving their access and inclusion strategies or providing an editorial perspective in, you know, things that they're working on, projects that they're working on, pieces that they're writing.
I do a lot around social media and communications and messaging.
So anything that is connected to words and writing and language and doing it through an inclusive lens is something that I am incredibly passionate about. So, that's kind of the bulk of my consulting work.
Keith: So for the inspiring advocates who may have just graduated from college or graduate school, or even high school that found this podcast.
What are five action steps that you would recommend they take to be able to start their journey, their professional journey in advocating for themselves and for other people with disabilities?
Emily: You know, I think it's first and foremost important to get to know yourself better and to be really sure of yourself before you begin to dive into this work.
And once you are more in touch with yourself, I think that is a good place to begin, you know, sharing your perspectives with other people. You know, when I graduated college, I did an internship program, and then after the internship program, I started my blog and I thought, you know, maybe my grandma will read it, but turns out that what I was writing was resonating with people.
And so I began to, you know, develop a portfolio of my writing. I also, you know, established a presence on social media, which now I feel like is a thing that everybody does.
But for me it was, you know, something that was just emerging when I finished college and so I was very intentional about, you know, developing my presence on social media and engaging and connecting with other advocates and organizations there.
Then I also really took the time to seek out mentors and friends and develop a network within the disability community to learn from perspectives outside my own, you know, and then most importantly, be willing to, you know, take feedback and take criticism and recognize that the work that you're doing is a learning process and a growing process, and that doesn't stop.
You don't suddenly become expert level at it. You just have to take it day by day and continue gaining experience and recognizing when it's time to listen and learn from other people in the community.
Keith: So I would hope that, both people with disabilities and people who have yet to discover their own disabilities listen to this podcast and I'm under no misconception that those two groups are going to get the same things out of the episode that the other group gets. As my guest what do you hope that advocates and just people with disabilities in general take away from listening to this episode?
Emily: I hope that anyone listening feels like they can also pursue a career in advocacy if that's what they want, because I don't think that advocacy should have barriers to entry and I don't feel like anyone should be allowed to gate keep. I think that everyone has a place and everyone has a role in the movement.
I am really hopeful that the work of generations before me and the work of my generation is leading to, you know, the work of future generations, but also setting them up for a world where hopefully they won't have to continue to fight quite as much.
Keith: What are some of the most important things, from this episode or from your advocacy in general or the advocacy of other advocates that you know personally, that you hope that people who have yet to discover their own disabilities know and take away and become more aware of.
Emily: I think it's important to remember that it's a journey, it's a process to embrace your disability, and everybody is at a different point on that journey.
And it's okay if you don't love your disability every single day, so long as you know you are continuing on that journey and giving yourself grace.
Keith: So as we wrap up, how can people get in touch with you, follow you on social media, check out your blog?
Emily: Yeah. I'm pretty easily findable just by typing in my name on social media, but if you want a central place to find me I am @emilyladau.com.
Keith: So before we close, tell me, what differentiates EmilyLadau.com from Words I Wheel By?
Emily: It used to be WordsIWheelBy.com I basically just changed the name of it and now shifted to using Words I Wheel By for my newsletter. But it's all the same, still me.
Keith: Very good. Are there any other closing thoughts you would like to impart to the listeners?
Emily: No, I just wanna say thank you so much for hosting me and I have really enjoyed having such a thoughtful conversation with you.
Keith: Thank you my friend, and I do hope not only will I see you again in person soon, but that you will come back for another episode because I too have enjoyed this conversation.
The book is Demystifying Disability: What to Know, What to Say, and How to Be an Ally. You can get it anywhere and I personally would recommend you pick up the audio book from Audible because Emily Ladau actually reads it to you as the listener and both of her parents make a guest star appearance. Emily happy holidays and have a very happy new year.
Emily: Same to you, Keith. Thank you so much.
Keith: You have been listening to Disability Empowerment Now. I would like to thank my guest today and you, the listener. More information about the podcast can be found on visit on disabilityempowermentnow.com. The podcast is available wherever you listen to podcasts or on the official website. This episode of Disability Empowerment Now is copyrighted 2022.
