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Emily Ladau on Disability Awareness and The Accessible Stall Podcast

August 26, 2022

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0:51:20

Emily Ladau is a disability rights activist, writer, storyteller, and digital communications consultant whose career began at the age of 10 when she appeared on several episodes of Sesame Street to educate children about her life with a physical disability. Her writing has been published in The New York Times, CNN, Vice, and Huffington Post.

She is the author of Demystifying Disability: What to Know, What to Say, and How to be an Ally.

With co-host Kyle Khachardurian, Emily is the host and creator of the podcast The Accessible Stall.

Our interview touches upon representation of folks with disabilities in the media, how to make podcasts and other forms of media more accessible for all people, working from home and what that means in terms of creating inclusivity and equity in the workplace, how she feels about educating people about disability, and what people could do to meet her halfway, ableism and internalized ableism, tropes and cliches of disability inspiration, tokenization, intersectionality, and much more.

Sign up for Words I Wheel By, Emily's newsletter

Check out The Accessible Stall podcast.

Read the transcript

Sam Stern: Thank you so much for joining us today on Voices of Esalen.

Emily Ladau: I'm so happy to be here. Thank you for having me.

Sam: Emily, you became a disability advocate at a very young age. If you're open to it, I'd love to hear the story that you have around your appearance on Sesame Street.

Emily: Yeah, absolutely. What a fun way to start off. So I was born with a physical disability called Larsen’s syndrome. It's a genetic joint and muscle disorder. And so it's always been a part of who I am. It wasn't really, until I got just a little bit older that I started coming into my own in terms of being open about sharing my story.

And as it happened, that opportunity came in the form of getting to appear on multiple episodes of Sesame street. So I used to go to a summer camp for kids with all different types of disabilities and the person who managed talent at Sesame street called up the camp and said, Hey, we're looking for kids with disabilities to audition.

Do you know of anyone? And my camp director said, yes, we've got a loud, precocious little girl who might just fit the bill. And I went through the audition process and ended up getting the part. And it was really my first taste of what it meant to share my story and to also be a part of the representation of disability that other people were seeing, and that other people were looking to as a way to learn about the disability experience.

So in many ways, I considered that my launching pad

Sam: That's really incredible. And of course, I want to talk to you about the amazing podcast that you started with your co-host Kyle Khachadurian called The Accessible Stall, but maybe it would be instructive to talk about the road between Sesame Street and Accessible Stall. Tell me a little bit about your history of being an advocate and an activist.

Emily: Sure. So after Sesame Street, I would say that I still had quite a bit of work to do, to come into my own as an activist and as a disabled person, I wasn't really fully evolved into that identity yet. And so that happened over time and I would say it wasn't really until college when I had been planning for so long to become a high school English teacher that I suddenly found myself having this sort of Quarter-life crisis, I like to call it. I say that I went from wanting to teach in a classroom to wanting to teach about disability and having no real idea what that meant, but just knowing that was what I felt compelled to do. And so I shifted gears and focused on being an activist. And so much of what I do now is defined by the fact that I felt like I didn't have enough representation surrounding me as I was growing up.

And so in the ways that I can be that representation and provide a platform for that representation for other people, I want to be able to do that. And so one of the ways that I get to do that is through my podcast with my co-host and one of my best friends, Kyle, called the Accessible Stall.

Sam: Yeah, it's a great show. I'm so into it. I love so many things about it. I've learned a ton from you, but also the presentation of it, the obvious friendship that you have… I'm not super into banter shows. There's a lot of podcasts that are built that are let's talk about the latest true crime episode, and there's like, banter, banter back and forth - but the way that you and Kyle kind of worked together to to speak about the issues that you're showcasing, is so effective. I just I've binged the heck out of the show. I would recommend it to everyone. I wanted to ask you, like in a world full of podcasts, why a podcast for you as opposed to other types of media?

Emily: I first of all, wanted to thank you for listening to the show.

And I know that there are so many different types of shows out there and that so many of them are banter focused and then there's really heavily produced shows. And honestly, we try not to force it in any particular direction because talking about disability can be messy and it's very real and it's very complex and there's no way to easily script those kinds of conversations, but nor is there a reason to force the banter. The banter just comes when you have that shared experience. And so for Kyle and I, we both identify as disabled and we realized that there wasn’t much representation of disability in the podcasting space back when we decided to get started in 2016, and we had so many conversations just among ourselves and our friends about disability issues and we got to the point where we were like, why aren't more people talking about this and where is a space where we can fulfill a gap?

And there certainly were some other disabled podcasters before us, I don't want to come in here and say we started it all. But I think the reality is that at the time, people didn't really see it as a medium where disability belonged and in the past several years, we've just seen it completely burgeoning into a space full of disability representation. And that is so exciting.

Sam: Yeah, that is so amazing. I wanted to ask you, I don't know if this is like, too basic, but what is the mission of your show, if you have one?

Emily: it's really just to keep it real about disability issues because. Far too often, the people who are doing the talking about disability are talking heads or experts or people who don't have lived experience. And we both acknowledge that we only have our own lived experience, and so there's no way that we can speak for everyone, but at the same time, coming from a place of having any form of lived experience is what makes it feel more real and authentic for us.

So our mission is to talk about disability, to give people a place, to come to listen, to learn, to feel less alone, to have questions answered that they might not be sure how to answer. And, just to feel like you're having a conversation with friends about something that might otherwise feel a little bit overwhelming to talk.

Sam: I do feel like that when I listen to your show, I really love it because you've helped me see some of the elements of the experience of people with disabilities that are for the most part invisibilized I think by society.  There's an episode called “Disabled bodies are weird.”

There's an episode called “Emily gets mad,” and you're just talking about being pissed about things. You spoke about just really specific things that happen to you, like dropping things from a wheelchair, and using your grabber to get it. And then sometimes you drop your Grabber. And you’re like, I want a second Grabber.

I just find that the candor that you speak with really helpful and welcoming. What would you say is there's something about your lived experience as a disabled person that few people would know about, but should know?

Emily: I think the most important thing for people to know is that like anyone , our mind or body mind is constantly evolving and changing and adapting. And I think when it comes to having a disability, you tend to be much more in tune with what that is like. So I am very aware of what's going on in my body. I am very aware of how things are feeling, of the pain that I'm experiencing, of the movements that feel right or feel wrong in that particular moment. So that's definitely not everybody's experience, but for me, I think what people don't consider is simply what it's like to be inside a disabled body, what it's like to occupy that space and to exist at a certain level of chronic pain or to exist at a certain level of my body can move this way, but not this way.

And I'm not talking about that in a way that's meant to evoke pity, but rather that it's just a lived experience. So when someone who's non-disabled says, oh my God, my back is killing me. I can say, oh, me too. But it might be a completely different physical experience than what you're talking about. I'm obviously not gonna go around trying to play the pain Olympics over here, but it's just something to think about: What it's like to actually occupy the space of a disabled mind or body.

Sam: Absolutely. Yeah, I can see that. And so coming back to the reason why you're doing this is adding representation. Have you had positive feedback from folks who felt like, yeah, I just haven't been able to see myself in media that's produced, but with your podcast now I do?

Emily: We have gotten some really incredible messages. A lot of times from people who have said, I wish somebody else would talk about this. I wish that I was in the room having a conversation with you, because I've been thinking this exact same thing for so long and haven't had a place to have a conversation with somebody about it.

And so that's a really powerful thing. And especially so when you're disabled, and not exactly sure where to turn to hear your perspectives reflected back at you. Then we've gotten plenty of messages from non-disabled people who have said, thank you. I hadn't thought about it that way. Or you added a new perspective for me.

We've also gotten messages from disabled and non-disabled people that have said, I do not agree with you. I don't like how you talked about this. Have you thought about it this way? You should think about it this way. So I think that in many cases we're helping people feel less alone. We're helping them learn.

We're challenging people. And sometimes we're challenging ourselves, quite honestly, because we don't have all the answers. And I think that's the beautiful thing about it is that it's a mutual learning experience.

Sam: A hundred percent. The show is not preachy at any time. It's all about lived experience. A lot of unfiltered reflection, I think and a lot of humility too and just candor and honesty that I think it sets it apart. It's really good. Let's talk about intersectionality. You talk about disability being an intersectionality that's sometimes ignored or missed. Would you talk about that a bit?

Emily: Yeah. I often say that disability as an identity is really still left on the margins of marginalization. And we tend to look at it as this very niche topic or something that's taboo and hush hush, and we don't talk about that. And we don’t stop to realize that it's not at all niche. It's actually the world's largest minority.

It's more than a billion people worldwide. And in the us one in four adults has some type of disability. And so statistically speaking you or somebody you know, whether they identify as such or not, has a disability, and it's also an identity that cuts across any and all other identity groups. And on top of that, it's, one of the main identity groups that anyone can join at any time, which is not a threat, it's just a reality. Bodies change and evolve.

And so when you think about all of those facts together, you start to realize that we should not be ignoring disability because it can be or become relevant to any of our lives at any time.

Sam: Yes. Thank you so much for that. It's really well spoken. Thank you.

Let's talk about media representation a bit.

Cause to me it feels like we're starting to see more folks with disabilities in TV shows and movies. What are your current thoughts on representation within media?

Emily: I feel like we are collectively on some kind of media representation journey, and I think there are people who are doing it well, and I think that there are areas where we need a lot of work. On the one hand I'm excited, because there is significantly more disability representation in media now than there was when I was younger. And every month, for example, I have a little newsletter that I put together and I'm on this media exploration journey where I try to write about one piece of media a month that I watched that had some kind of disability representation in it.

I have found that there's not actually so far been a lack of things for me to write about, which is amazing. But at the same time, celebrating that as a victory is one thing, but recognizing that we're still fairly underrepresented and they're still so far to go, is trying to find the positive and still seeing the negative at the same time.

I think we've made a lot of progress, but there's a lot of work to be done.

Sam: I feel like I've seen shows where people without disabilities are playing characters that do have disabilities. Does this feel to you incongruous or inappropriate?

Emily: I struggle with that a lot. I tend to feel like there's a real need for authenticity in representation of an experience. And so in the same way that you would not ask someone to play a character of a different race or ethnicity, I feel similarly about asking someone to play a disabled person, if they are non-disabled. I think it also takes away opportunities from disabled people who are very talented actors. And for that matter, the same thing goes for behind the screen.

You could have a non-disabled person who is writing a story that includes disability and yes, it's great to have disability representation, but what about all of the disabled writers and creators and producers and directors who also have a story to tell? What are we doing to make space for those authentic stories?

Sam: It sounds like you're on the journey of a really interesting interrogation.  What's the name of that newsletter? I'm interested in checking it out.

Emily: It's called “Words I Wheel By” and I send it out once a month. It's just my little way of talking about representation in the media and I also curate a roundup of different articles and things to check out that are relevant to disability from over the course of the past month.  I'm a big fan of curating things for people in such a way that they have the resources available to them and can learn in a way that feels, safe and comfortable and at the right pace for them.

Sam: A condition of you coming on this show when I proposed it to you was that you wanted transcripts to be available of the episode. Talk to me about that. Why is it important?

Emily: I’m so glad that you asked about this, because I feel like every time I get a very kind invitation to be on a podcast that I can throw people for a bit of a loop when I say “I’d love to be on, but my condition is, can you please provide a transcript?” The thing about transcripts is that you can get one that is generated by artificial intelligence and you can go through and you can edit it. Or you can get one that is typed up by a transcriptionist and it does add a little bit of a cost to the podcast production process.

There's constant debate that I see even within the disability community, where there are a lot of disabled podcasters who make sure that they provide transcripts for their shows, so that it's accessible for people who have hearing disabilities or any kind of auditory or sensory-processing disabilities, but then some disabled people say, If I am creating transcripts, then the process of making a podcast becomes financially inaccessible to me.

Or, I’m not able to type them up myself physically. And so it's a very interesting conversation within the podcasting space. I try to remind people that by creating this form of access, you are opening up the opportunity for more people to engage with the content that you're creating. And if nothing else, if people need the business case for it, if you have a transcript of an episode, it's also really good for search engine optimization because you have the text of the episode written down. And so it helps with that in terms of search ranking.

But my real hope is that people will recognize that podcasts are a very exciting medium, but they do often shut out major groups of human beings who could otherwise be consuming the media.

I make it a priority to try to do things that I know will be accessible to everyone.

Sam: That's a great point. It is. It is so well taken.

What are other ways that media producers can make their work more accessible to folks with disabilities or more accessible in general?

Emily: I think it's so important to think about accessibility from the beginning of a project, as opposed to how you can tack it on at the end, if you consider it at all.

Two really big and important steps that a lot of media creators have been taking lately is focusing on captioning their content and also providing audio description for their content. So, captions are great for people with hearing disabilities and audio descriptions are great for people with vision disabilities.

It's just added ways to give more people the opportunity to engage with what you're creating. More so than that though, also thinking about the actual topics of what you're creating. How are you being inclusive? How are you being representative? Accessibility is important, but are you creating content that recognizes the depth and breadth of the human experience?

Sam: Oh, my God, Emily. You're such a great guest. I'm like, nodding over here. It's awesome.

Emily: Thank you.  

Sam: Let's see. I can go a bunch of different ways here. Let's talk about working from home for a moment, because it's something that changed during the pandemic. You were working from home before working from home was cool. Can you talk a little bit about how the pandemic changed thinking about virtual workspaces and how working from home benefited you?

Emily: Yes, I am a big proponent of working from home. I think that it is something that just opens up so many pathways and opportunities for so many people.

And especially since the pandemic, I think people have come to realize the value of being able to work from home and for the disability community, this is something that we had been asking for quite some time prior to 2020 as an accommodation and as a form of accessibility so that we could be more included in the workforce.

And not only that, but so that we could attend classes so that we could attend cultural events so that we could socialize. Virtual has been an option for so many people for quite some time. And yet a lot of people just didn't consider it. And so once the pandemic showed us that it was possible, I like to remind people that we don't need to let go of that, as we continue into whatever the next phase of this pandemic looks like, we can keep virtual work as an option to make things more inclusive.

I talk about it a lot through what's known as the curb cut effect.

Not everybody can go up and down a sidewalk, but if you create a curb cut, suddenly you've created an option for people with all types of disabilities, people pushing strollers, people on a skateboard with luggage, a mail cart, whatever, you name it. So I see the virtual working world as a virtual curb cut to open up more opportunities.

And for me I've had employers take a chance on me and allow me to do that well before it was the thing to do in 2020. I think I owe a lot of my career to that.

Sam: That's super interesting. And now that it's over, have we seen more demands on people to be back in the office? Is it less easy for folks across the board to to engage in virtual work?

Emily: Yeah, I I think the first thing that I would note is, People are feeling like, okay, I'm done with this pandemic.

It's finished. Come back to the office.

And for so many people that is not the reality, COVID is still very real and there's still, the possibility of getting sick, and that's especially risky for people who are disabled and immunocompromised.

And now we seem to have a lot of people who deem themselves thought leaders saying that going back to the office is what's necessary for us to continue as a functional society. And I just don't think that's true at all, because we've seen that when done well, virtual and hybrid options can be accessible. So let's not stop that now, because then we're just shutting people out of opportunities unnecessarily.

Sam: From a broader perspective, what kind of policy changes would you like to see in the United States and beyond which would create more accessibility in general for folks with disabilities?

Emily: I am constantly trying to remind people that you can create a policy, but you can't necessarily attitude-change. And so while I'm extremely passionate about policy changes, and there are so many areas where I feel like we need work, for me, I try to focus on shifting mindsets, and not getting too hung up on the specific policy advocacy work, even though there are so many incredible disabled people who are doing the policy advocacy work.

But if I had to point to just a few areas where I'm hoping to see continued progress, one real priority of mine is around the provision of what's known as home and community based services. Simply put that just means that people with disabilities or any kind of health condition can receive access to care that they need in their home and community based settings, rather than having to go to an institutional setting or a nursing home, for example. Providing for these kinds of services is something that policy advocates continue to fight for on a daily basis, even though there are already policy measures in place to provide for it. It’s really a matter of funding and a matter of creating the infrastructure for this.

And as someone who firmly believes that disabled people have every right, just like anybody else, to live at home, to thrive at home, to be a part of their communities and their surroundings rather than to be shut away or locked away, I’m particularly passionate about the policy work that's being done on that.

I think that overall that would create a much more inclusive society.

Sam: Yeah, thank you for that. And I understand what you're talking about: you're really trying to focus on shifting mindsets. How do you think that's going?

Emily: I say that I would love to be out of a job right now for tomorrow. I would truly be thrilled if this was no longer the route that I was taking in life, if only because we'd reached some pinnacle of understanding and acceptance when it comes to disability.

But I recognize that it is a process and it is a journey. And so I am very much a believer in the approach of really talking to one person at a time, bridging one gap at a time, changing one mind at a time. I think that in turn can have a real ripple effect. So for now, this is work that I am glad to be doing.

I know that it's a privilege to be doing this. When the going gets tough, I just remind myself of all of the moments that I've had where things really clicked for people who I was communicating with, and where I've continued to learn more as well. So for me, I think it's slow going, but hopefully steady going.

Sam: I know that many disabled folks rightly feel it's not their job to educate people about disability awareness… curious where you come out on this. I sense that you're pretty open to it, given that you have your podcast, but even so, is there anything you find super annoying about it? What could people do to meet you halfway?

Emily: I really appreciate that question. I think it's very thoughtful. And for me, one of the biggest things is that I am not a living breathing teachable moment. There are very focused and concentrated times where I'm working or where I'm, for example, in conversation with you right now, and I'm in that head space and I'm ready to have that conversation, and I'm excited to be talking about this, but if I am just out and about living my life, having a day where I'm with my friends or my family, or I'm eating dinner or I'm shopping, or I’m seeing a play, take your pick, I'm not necessarily in that mode of, I'm ready to educate you. And yet I get the questions or I encounter the inaccessible moment and suddenly I have to put my activist hat back on.

And it becomes a bit of a challenge, because this is work that I do and something that I'm passionate about. I can't necessarily just take my disability off and put it on a shelf and be done with it. It's part of who I am, 24 7. So I recognize that.

But at the same time, I want that level of separation where I'm not always obligated to be on. To have that switch flipped, where someone expects me to provide them with some kind of knowledge or information, I have to do it on command.

Sam: I’m gonna loop back to something that you just said. You said you, you might reach the inaccessible moment. Tell me about that.

Emily: When I am out and about as a wheelchair user, I am constantly encountering a variety of barriers, whether it is a building that has stairs, whether the bathroom is too small, whether the aisles are too narrow. Or perhaps trying to get from point A to point B is challenging, because the transportation options are not fully accessible.

For example, I live in New York, just outside of New York city and so every time I'm in the city, I am reminded that the transportation system was not designed with the disability community in mind.  And they are right now working on that. And there is a promise that supposedly, it will be 95% accessible to disabled riders by the year 2055, at which point I'll be well into my sixties.

So we'll have lived a very full and long life, I hope. It's just a constant reminder that things are not designed with any kind of thought to the fact that not everybody moves in the same way.

Sam: Right. Yes. And so the society is very ableist in that way. Recent episode of The Accessible Stall was really thought-provoking when you discussed “internalized ableism.” I'd love for you to to discuss that, if you're open to it.

Emily: Absolutely. So I think it's important to define ableism in general, which I talk about pretty straightforwardly, as attitudes and actions and circumstances that devalue someone on the basis of disability.

It happens a lot in interpersonal interactions and also systemically, for example, with the New York city subway system.

But it's also something that people can internalize. And that's to say that when you exist in a world that continually sends the message that it is wrong for you to exist, that your body is wrong, that you shouldn't be here, that you take up too much space, too many resources that you are burdensome on society, it can become very challenging not to internalize those feelings about yourself. And even as someone who's a passionate disability activist, I still find myself feeling at times like I am too much, I am a burden. I'm making this very difficult on people. I should apologize, or say that I'm sorry for what I need.

But the reality is that every human being has needs and we should not apologize for what we need to exist.

Sam: In that episode, you and Kyle were also talking about the fact that it's likely that all of us, not just disabled people, are guilty of internalized ableism.

Emily: Absolutely. And I think this is twofold. The first being, the biases that people harbor against disabled people. And so this is sort of that form of internalized ableism that even disabled people can have, where you look at someone and you say, oh my goodness, Thank goodness that I'm not like them. Or, I never wanna be like that person, or just making a value judgment on a person and using it as a point of comparison for yourself.

So I think that's one problem that really comes to light when you think about how we internalize ableism. But I think that the other thing is really, sometimes we can be hard on ourselves and we can judge ourselves, and we can judge what we can and cannot do.

And we do that based on some arbitrary idea of a standard, of normal functioning, that just does not exist.

Sam: In a recent episode, Kyle, I believe, brought up something that he called inspiration porn, with regards to disability representation. What is inspiration porn?

Emily: I love talking about this. I think mostly because the term itself gives people pause, but really it's just talking about the objectification of people with disabilities for the sake of making other people, especially non-disabled people, feel good and warm and fuzzy.

A perfect example of this is you might see a story on the nightly news about a bride who is disabled and stands up to dance at her wedding. Or you may see a story about a student who has down syndrome, who is graduating from high school, who was named homecoming king, or prom king, or whatever the case may be.

And we look at these stories and we think, oh my goodness, that is so beautiful. And my question is always, would you be as inspired by that if that person did not have a disability. And if that person did not have a disability, would that be a newsworthy story, or a story worth telling in the first place?

We tend to look at disability as something that needs to be overcome. And then if you do something that society would otherwise deem normal, suddenly you are celebrated for it, because you have molded yourself into what society expects of you and you have overcome these challenges. It's a very frustrating narrative, because I am not inspiring simply for living my life, or even really for accomplishing something, as a disabled person. If you are inspired by something that I do, let it be because you know more about who I am then just taking me at face value.

Sam: So well put, and I think that part and parcel of this problem in representation is that people without disabilities are creating representation of people with disabilities.  Do you know what I mean? Otherwise, you would never see a pitying gaze.  

Emily: I think that there's this treatment of disabled people like it's amazing that we woke up to see another day.  I try to remind people that taking that attitude just comes from your stigmatizing assumption about what it means to have a disability. It's not that we are overcoming ourselves. It's that we're overcoming your ableism.

Sam: You made this video on YouTube that I checked out a couple days ago, from Microsoft. It's about ways to be more inclusive of people with disabilities. Your advice was interesting. It was pretty simple. “Be your usual self.” Talk to me about that one.

Emily: Yeah. I had so much fun making that video because I think people assume that there must be some kind of rule book or playbook when it comes to engaging with disabled people.

But just being yourself makes so much sense when you think about it because you don't need to treat disabled people any differently. Certainly there are things that you should be considerate of. There are ways that you can make your interactions more accessible, but when you are engaging with someone who has a disability, that person is a human being.

So engage with them in the same way that you would engage with any other human being. And if you need to adapt a little bit in order to connect with that person where they are, then do that, but there's no need to treat that person like a delicate flower or something breakable.

Sam: What are some of the challenges that folks with disabilities face at things like protests?

I know that some of the black lives matter protests in Portland and summer of 2020 had ASL signers there, but what kind of changes might you like to see at political protests or other types of events to make them more safe and more accessible for all people?

Emily: I love this question, especially because I think political activism is a space where it's very challenging to engage as a disabled person, whether that's because of crowds, whether that's because of overstimulation, whether that's because of communication, barriers or other access barriers.

Being on the front lines of a political protest is not always the most accessible thing for someone who has a disabled mind or body. And so while it's really important to plan actions, protests, marches with disabled people in mind, to have captioning or to have interpreters, to have places to stop and take rest, sit down on a chair get some water recover from the heat or the cold or whatever the case may be.

You can certainly plan the event with that in mind, but also recognizing that being physically present on the front lines is not the only way to be a good political activist.

And, that goes back to what we were talking about earlier with offering virtual options for things, recognizing that, for example, the use of social media, many people think that’s “slacktivism.” I would argue that's just another way to make activism accessible to people if you're not physically able to be present on the frontline.

So I think as much as it's about planning, accessible political actions, it's also about broadening your definition of what that looks like in the first place.

Sam: That's really cool that you bring that up. Cause I personally don't go to protests for a variety of reasons. it's cool that you are showing me more ways to be engaged for something that I care about, but I've been stuck around for some time.

Emily: Yeah. It's a balance for sure. I also have to very much acknowledge that I come from a place of privilege. I am, a white woman with a physical disability, I can communicate verbally. And if I was to put myself out on the front lines, I do think that in some ways I would be safer than other marginalized groups.

And yet in many ways I would also be in more danger. And I have to balance the acknowledgement of the privilege that I do have with the fact that there are other ways for me to engage and mobilize and care about an issue and do so in a way that is a little bit safer for me and my current circumstances.

Sam: I don't think that you've been to Esalen, but it Esalen is a retreat center. What do you wish centers? Such as this one might consider in terms of awareness, in terms of making their spaces open and enjoyable, accessible for everyone.

Emily: Yeah, I've not been there.  I think very often about wanting to engage in some kind of, mind-body sort of retreat , but then I always find myself hesitating because I do wonder about access in multiple ways. First and foremost, for me as somebody who uses a wheelchair to get around, I'm wondering about the accessibility of the grounds of a retreat center. I'm wondering if there are clear pathways. I’m wondering what the rooms are like.

I'm wondering what the restrooms are like. And all of the activities that are done, are they adaptable? Are there instructors who are trained in adapting the activities? I'm thinking about whether I would be welcomed into the fold as someone who's an active participant or whether I would be siloed off to do my own thing.

I'm always thinking about what it looks like to navigate and what it looks like to be included when it comes to any kind of space where you're engaging like that.

Sam: Thank you. Yes, that's a great answer. So in terms of just basic ways that centers can instantly make real effort to be more inclusive, what would you say some of those might be?

Emily:  Messaging is a big one. One of the first things that I tend to do when I'm researching pretty much anything, whether it's some kind of activity, event, or a location that I'm going to, I will check the website for any kind of information on accessibility.

I'm looking for at least enough detail that if I called and wanted to follow up and get more information, I would feel like they would have a good handle on responding to my question. So it would say, we offer wheelchair accessible facilities. We offer adapted events. We are focusing on being as inclusive as possible.

And we welcome disabled people here. So messaging is definitely a big one.

I'm looking for imagery as well sometimes. Not that I want necessarily to see the tokenizing picture of the person sitting in a hospital-like, medical-style wheelchair on your website, but I also find myself wondering, have you had other people with disabilities there before?

Have they engaged in your activities? So thinking about things things like that. And then I'm also looking for a willingness to adapt and to say, we've not done this before, but we're gonna figure it out. So sometimes it's not always about having the answers. Sometimes it's about a willingness to engage in figuring that out together.

Sam: So useful. And you brought up an interesting word, tokenizing. What are ways to engage with intersectionality without being tokenizing?

Emily: I think that it's always a challenge because you feel like you want to just have that checklist and you want to check off all the boxes. And you want to do right by people, but you wanna do it in a sort of linear clear cut way. So by the time you've gotten from point a to point B, you've successfully included everyone, but it doesn't always look like that.

It's an ongoing journey and sometimes you take steps forward and sometimes you take steps back and sometimes it's messy and sometimes you make mistakes and it's a learning process.

And so I think that the best thing that anyone can do is just be mindful of the world outside, beyond themselves. And know when you don't know, and know when you need to ask, and know when you need to step back and learn and amplify other perspectives and just recognize that you're not ever going to have all the answers and you're not ever going to become the world's most evolved ally to all other human beings. It's a growth process.

Sam: That's so good. Emily, we're coming up on time, so I'm just gonna hit you with probably two or three more questions. What brings you joy?

Emily: I think right now, what brings me the most joy is just being around people who share my passion for social justice. And I don't mean that we always have to have our activist hats on, but there are people that I know who envision a more inclusive and accessible world and being in their company and their presence and spending time with them and having their friendship and learning from them is just something that brings me joy.

And maybe that sounds cliche. And it's not as though we sit around just talking about activism all the time. I'm perfectly happy to switch that flip off for a few minutes and just be, but those are the people in my life that are really bringing me joy right now.

Sam:  What is your secret superpower? What's something that you're really good at, that not many people might know about ?

Emily: This is probably giving away a secret that I'm really good at getting people to tell me what they're actually thinking.

I feel like I just give people that pathway to open up and spill their guts to me. And maybe that's a good thing or a bad thing, depending on the moment. You get a lot of information that way. (Laughs)

Sam: You've been adapting to the world, I think, more than the world adapting to you. And I'd like to ask you, what are some basic societal shifts communities, coworkers, families, friends could make to be more inclusive?

Emily: I think the best thing that any person can do is to say, how can I make this more accessible and inclusive for you?

Whether this is an event or whether this is some kind of small social gathering, or whether it's a presentation that someone is giving, just asking, what can I do to make this accessible to you? And if you happen to know, for example, that you are planning an outing with me and you let me know that you double checked ahead of time that the place is wheelchair accessible. That is such a small step, but something that is so big and meaningful to me. So just asking, and then doing. That's how you can make the world much more accessible for everyone.

Sam: Emily Ladau, you are the cohost of The Accessible Stall podcast with Kyle Khachadurian. You're the author of “Demystifying Disability: What to Know, What to Say and How to be an Ally.” And you're fantastic. Learned so much from you today. Thank you so much for being on the show.

Emily: Thank you so much for having me. This was really such a wonderful conversation. I appreciated so much.

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Emily Ladau on Disability Awareness and The Accessible Stall Podcast
August 26, 2022
0:51:20

Emily Ladau is a disability rights activist, writer, storyteller, and digital communications consultant whose career began at the age of 10 when she appeared on several episodes of Sesame Street to educate children about her life with a physical disability. Her writing has been published in The New York Times, CNN, Vice, and Huffington Post.

She is the author of Demystifying Disability: What to Know, What to Say, and How to be an Ally.

With co-host Kyle Khachardurian, Emily is the host and creator of the podcast The Accessible Stall.

Our interview touches upon representation of folks with disabilities in the media, how to make podcasts and other forms of media more accessible for all people, working from home and what that means in terms of creating inclusivity and equity in the workplace, how she feels about educating people about disability, and what people could do to meet her halfway, ableism and internalized ableism, tropes and cliches of disability inspiration, tokenization, intersectionality, and much more.

Sign up for Words I Wheel By, Emily's newsletter

Check out The Accessible Stall podcast.

Read the transcript

Sam Stern: Thank you so much for joining us today on Voices of Esalen.

Emily Ladau: I'm so happy to be here. Thank you for having me.

Sam: Emily, you became a disability advocate at a very young age. If you're open to it, I'd love to hear the story that you have around your appearance on Sesame Street.

Emily: Yeah, absolutely. What a fun way to start off. So I was born with a physical disability called Larsen’s syndrome. It's a genetic joint and muscle disorder. And so it's always been a part of who I am. It wasn't really, until I got just a little bit older that I started coming into my own in terms of being open about sharing my story.

And as it happened, that opportunity came in the form of getting to appear on multiple episodes of Sesame street. So I used to go to a summer camp for kids with all different types of disabilities and the person who managed talent at Sesame street called up the camp and said, Hey, we're looking for kids with disabilities to audition.

Do you know of anyone? And my camp director said, yes, we've got a loud, precocious little girl who might just fit the bill. And I went through the audition process and ended up getting the part. And it was really my first taste of what it meant to share my story and to also be a part of the representation of disability that other people were seeing, and that other people were looking to as a way to learn about the disability experience.

So in many ways, I considered that my launching pad

Sam: That's really incredible. And of course, I want to talk to you about the amazing podcast that you started with your co-host Kyle Khachadurian called The Accessible Stall, but maybe it would be instructive to talk about the road between Sesame Street and Accessible Stall. Tell me a little bit about your history of being an advocate and an activist.

Emily: Sure. So after Sesame Street, I would say that I still had quite a bit of work to do, to come into my own as an activist and as a disabled person, I wasn't really fully evolved into that identity yet. And so that happened over time and I would say it wasn't really until college when I had been planning for so long to become a high school English teacher that I suddenly found myself having this sort of Quarter-life crisis, I like to call it. I say that I went from wanting to teach in a classroom to wanting to teach about disability and having no real idea what that meant, but just knowing that was what I felt compelled to do. And so I shifted gears and focused on being an activist. And so much of what I do now is defined by the fact that I felt like I didn't have enough representation surrounding me as I was growing up.

And so in the ways that I can be that representation and provide a platform for that representation for other people, I want to be able to do that. And so one of the ways that I get to do that is through my podcast with my co-host and one of my best friends, Kyle, called the Accessible Stall.

Sam: Yeah, it's a great show. I'm so into it. I love so many things about it. I've learned a ton from you, but also the presentation of it, the obvious friendship that you have… I'm not super into banter shows. There's a lot of podcasts that are built that are let's talk about the latest true crime episode, and there's like, banter, banter back and forth - but the way that you and Kyle kind of worked together to to speak about the issues that you're showcasing, is so effective. I just I've binged the heck out of the show. I would recommend it to everyone. I wanted to ask you, like in a world full of podcasts, why a podcast for you as opposed to other types of media?

Emily: I first of all, wanted to thank you for listening to the show.

And I know that there are so many different types of shows out there and that so many of them are banter focused and then there's really heavily produced shows. And honestly, we try not to force it in any particular direction because talking about disability can be messy and it's very real and it's very complex and there's no way to easily script those kinds of conversations, but nor is there a reason to force the banter. The banter just comes when you have that shared experience. And so for Kyle and I, we both identify as disabled and we realized that there wasn’t much representation of disability in the podcasting space back when we decided to get started in 2016, and we had so many conversations just among ourselves and our friends about disability issues and we got to the point where we were like, why aren't more people talking about this and where is a space where we can fulfill a gap?

And there certainly were some other disabled podcasters before us, I don't want to come in here and say we started it all. But I think the reality is that at the time, people didn't really see it as a medium where disability belonged and in the past several years, we've just seen it completely burgeoning into a space full of disability representation. And that is so exciting.

Sam: Yeah, that is so amazing. I wanted to ask you, I don't know if this is like, too basic, but what is the mission of your show, if you have one?

Emily: it's really just to keep it real about disability issues because. Far too often, the people who are doing the talking about disability are talking heads or experts or people who don't have lived experience. And we both acknowledge that we only have our own lived experience, and so there's no way that we can speak for everyone, but at the same time, coming from a place of having any form of lived experience is what makes it feel more real and authentic for us.

So our mission is to talk about disability, to give people a place, to come to listen, to learn, to feel less alone, to have questions answered that they might not be sure how to answer. And, just to feel like you're having a conversation with friends about something that might otherwise feel a little bit overwhelming to talk.

Sam: I do feel like that when I listen to your show, I really love it because you've helped me see some of the elements of the experience of people with disabilities that are for the most part invisibilized I think by society.  There's an episode called “Disabled bodies are weird.”

There's an episode called “Emily gets mad,” and you're just talking about being pissed about things. You spoke about just really specific things that happen to you, like dropping things from a wheelchair, and using your grabber to get it. And then sometimes you drop your Grabber. And you’re like, I want a second Grabber.

I just find that the candor that you speak with really helpful and welcoming. What would you say is there's something about your lived experience as a disabled person that few people would know about, but should know?

Emily: I think the most important thing for people to know is that like anyone , our mind or body mind is constantly evolving and changing and adapting. And I think when it comes to having a disability, you tend to be much more in tune with what that is like. So I am very aware of what's going on in my body. I am very aware of how things are feeling, of the pain that I'm experiencing, of the movements that feel right or feel wrong in that particular moment. So that's definitely not everybody's experience, but for me, I think what people don't consider is simply what it's like to be inside a disabled body, what it's like to occupy that space and to exist at a certain level of chronic pain or to exist at a certain level of my body can move this way, but not this way.

And I'm not talking about that in a way that's meant to evoke pity, but rather that it's just a lived experience. So when someone who's non-disabled says, oh my God, my back is killing me. I can say, oh, me too. But it might be a completely different physical experience than what you're talking about. I'm obviously not gonna go around trying to play the pain Olympics over here, but it's just something to think about: What it's like to actually occupy the space of a disabled mind or body.

Sam: Absolutely. Yeah, I can see that. And so coming back to the reason why you're doing this is adding representation. Have you had positive feedback from folks who felt like, yeah, I just haven't been able to see myself in media that's produced, but with your podcast now I do?

Emily: We have gotten some really incredible messages. A lot of times from people who have said, I wish somebody else would talk about this. I wish that I was in the room having a conversation with you, because I've been thinking this exact same thing for so long and haven't had a place to have a conversation with somebody about it.

And so that's a really powerful thing. And especially so when you're disabled, and not exactly sure where to turn to hear your perspectives reflected back at you. Then we've gotten plenty of messages from non-disabled people who have said, thank you. I hadn't thought about it that way. Or you added a new perspective for me.

We've also gotten messages from disabled and non-disabled people that have said, I do not agree with you. I don't like how you talked about this. Have you thought about it this way? You should think about it this way. So I think that in many cases we're helping people feel less alone. We're helping them learn.

We're challenging people. And sometimes we're challenging ourselves, quite honestly, because we don't have all the answers. And I think that's the beautiful thing about it is that it's a mutual learning experience.

Sam: A hundred percent. The show is not preachy at any time. It's all about lived experience. A lot of unfiltered reflection, I think and a lot of humility too and just candor and honesty that I think it sets it apart. It's really good. Let's talk about intersectionality. You talk about disability being an intersectionality that's sometimes ignored or missed. Would you talk about that a bit?

Emily: Yeah. I often say that disability as an identity is really still left on the margins of marginalization. And we tend to look at it as this very niche topic or something that's taboo and hush hush, and we don't talk about that. And we don’t stop to realize that it's not at all niche. It's actually the world's largest minority.

It's more than a billion people worldwide. And in the us one in four adults has some type of disability. And so statistically speaking you or somebody you know, whether they identify as such or not, has a disability, and it's also an identity that cuts across any and all other identity groups. And on top of that, it's, one of the main identity groups that anyone can join at any time, which is not a threat, it's just a reality. Bodies change and evolve.

And so when you think about all of those facts together, you start to realize that we should not be ignoring disability because it can be or become relevant to any of our lives at any time.

Sam: Yes. Thank you so much for that. It's really well spoken. Thank you.

Let's talk about media representation a bit.

Cause to me it feels like we're starting to see more folks with disabilities in TV shows and movies. What are your current thoughts on representation within media?

Emily: I feel like we are collectively on some kind of media representation journey, and I think there are people who are doing it well, and I think that there are areas where we need a lot of work. On the one hand I'm excited, because there is significantly more disability representation in media now than there was when I was younger. And every month, for example, I have a little newsletter that I put together and I'm on this media exploration journey where I try to write about one piece of media a month that I watched that had some kind of disability representation in it.

I have found that there's not actually so far been a lack of things for me to write about, which is amazing. But at the same time, celebrating that as a victory is one thing, but recognizing that we're still fairly underrepresented and they're still so far to go, is trying to find the positive and still seeing the negative at the same time.

I think we've made a lot of progress, but there's a lot of work to be done.

Sam: I feel like I've seen shows where people without disabilities are playing characters that do have disabilities. Does this feel to you incongruous or inappropriate?

Emily: I struggle with that a lot. I tend to feel like there's a real need for authenticity in representation of an experience. And so in the same way that you would not ask someone to play a character of a different race or ethnicity, I feel similarly about asking someone to play a disabled person, if they are non-disabled. I think it also takes away opportunities from disabled people who are very talented actors. And for that matter, the same thing goes for behind the screen.

You could have a non-disabled person who is writing a story that includes disability and yes, it's great to have disability representation, but what about all of the disabled writers and creators and producers and directors who also have a story to tell? What are we doing to make space for those authentic stories?

Sam: It sounds like you're on the journey of a really interesting interrogation.  What's the name of that newsletter? I'm interested in checking it out.

Emily: It's called “Words I Wheel By” and I send it out once a month. It's just my little way of talking about representation in the media and I also curate a roundup of different articles and things to check out that are relevant to disability from over the course of the past month.  I'm a big fan of curating things for people in such a way that they have the resources available to them and can learn in a way that feels, safe and comfortable and at the right pace for them.

Sam: A condition of you coming on this show when I proposed it to you was that you wanted transcripts to be available of the episode. Talk to me about that. Why is it important?

Emily: I’m so glad that you asked about this, because I feel like every time I get a very kind invitation to be on a podcast that I can throw people for a bit of a loop when I say “I’d love to be on, but my condition is, can you please provide a transcript?” The thing about transcripts is that you can get one that is generated by artificial intelligence and you can go through and you can edit it. Or you can get one that is typed up by a transcriptionist and it does add a little bit of a cost to the podcast production process.

There's constant debate that I see even within the disability community, where there are a lot of disabled podcasters who make sure that they provide transcripts for their shows, so that it's accessible for people who have hearing disabilities or any kind of auditory or sensory-processing disabilities, but then some disabled people say, If I am creating transcripts, then the process of making a podcast becomes financially inaccessible to me.

Or, I’m not able to type them up myself physically. And so it's a very interesting conversation within the podcasting space. I try to remind people that by creating this form of access, you are opening up the opportunity for more people to engage with the content that you're creating. And if nothing else, if people need the business case for it, if you have a transcript of an episode, it's also really good for search engine optimization because you have the text of the episode written down. And so it helps with that in terms of search ranking.

But my real hope is that people will recognize that podcasts are a very exciting medium, but they do often shut out major groups of human beings who could otherwise be consuming the media.

I make it a priority to try to do things that I know will be accessible to everyone.

Sam: That's a great point. It is. It is so well taken.

What are other ways that media producers can make their work more accessible to folks with disabilities or more accessible in general?

Emily: I think it's so important to think about accessibility from the beginning of a project, as opposed to how you can tack it on at the end, if you consider it at all.

Two really big and important steps that a lot of media creators have been taking lately is focusing on captioning their content and also providing audio description for their content. So, captions are great for people with hearing disabilities and audio descriptions are great for people with vision disabilities.

It's just added ways to give more people the opportunity to engage with what you're creating. More so than that though, also thinking about the actual topics of what you're creating. How are you being inclusive? How are you being representative? Accessibility is important, but are you creating content that recognizes the depth and breadth of the human experience?

Sam: Oh, my God, Emily. You're such a great guest. I'm like, nodding over here. It's awesome.

Emily: Thank you.  

Sam: Let's see. I can go a bunch of different ways here. Let's talk about working from home for a moment, because it's something that changed during the pandemic. You were working from home before working from home was cool. Can you talk a little bit about how the pandemic changed thinking about virtual workspaces and how working from home benefited you?

Emily: Yes, I am a big proponent of working from home. I think that it is something that just opens up so many pathways and opportunities for so many people.

And especially since the pandemic, I think people have come to realize the value of being able to work from home and for the disability community, this is something that we had been asking for quite some time prior to 2020 as an accommodation and as a form of accessibility so that we could be more included in the workforce.

And not only that, but so that we could attend classes so that we could attend cultural events so that we could socialize. Virtual has been an option for so many people for quite some time. And yet a lot of people just didn't consider it. And so once the pandemic showed us that it was possible, I like to remind people that we don't need to let go of that, as we continue into whatever the next phase of this pandemic looks like, we can keep virtual work as an option to make things more inclusive.

I talk about it a lot through what's known as the curb cut effect.

Not everybody can go up and down a sidewalk, but if you create a curb cut, suddenly you've created an option for people with all types of disabilities, people pushing strollers, people on a skateboard with luggage, a mail cart, whatever, you name it. So I see the virtual working world as a virtual curb cut to open up more opportunities.

And for me I've had employers take a chance on me and allow me to do that well before it was the thing to do in 2020. I think I owe a lot of my career to that.

Sam: That's super interesting. And now that it's over, have we seen more demands on people to be back in the office? Is it less easy for folks across the board to to engage in virtual work?

Emily: Yeah, I I think the first thing that I would note is, People are feeling like, okay, I'm done with this pandemic.

It's finished. Come back to the office.

And for so many people that is not the reality, COVID is still very real and there's still, the possibility of getting sick, and that's especially risky for people who are disabled and immunocompromised.

And now we seem to have a lot of people who deem themselves thought leaders saying that going back to the office is what's necessary for us to continue as a functional society. And I just don't think that's true at all, because we've seen that when done well, virtual and hybrid options can be accessible. So let's not stop that now, because then we're just shutting people out of opportunities unnecessarily.

Sam: From a broader perspective, what kind of policy changes would you like to see in the United States and beyond which would create more accessibility in general for folks with disabilities?

Emily: I am constantly trying to remind people that you can create a policy, but you can't necessarily attitude-change. And so while I'm extremely passionate about policy changes, and there are so many areas where I feel like we need work, for me, I try to focus on shifting mindsets, and not getting too hung up on the specific policy advocacy work, even though there are so many incredible disabled people who are doing the policy advocacy work.

But if I had to point to just a few areas where I'm hoping to see continued progress, one real priority of mine is around the provision of what's known as home and community based services. Simply put that just means that people with disabilities or any kind of health condition can receive access to care that they need in their home and community based settings, rather than having to go to an institutional setting or a nursing home, for example. Providing for these kinds of services is something that policy advocates continue to fight for on a daily basis, even though there are already policy measures in place to provide for it. It’s really a matter of funding and a matter of creating the infrastructure for this.

And as someone who firmly believes that disabled people have every right, just like anybody else, to live at home, to thrive at home, to be a part of their communities and their surroundings rather than to be shut away or locked away, I’m particularly passionate about the policy work that's being done on that.

I think that overall that would create a much more inclusive society.

Sam: Yeah, thank you for that. And I understand what you're talking about: you're really trying to focus on shifting mindsets. How do you think that's going?

Emily: I say that I would love to be out of a job right now for tomorrow. I would truly be thrilled if this was no longer the route that I was taking in life, if only because we'd reached some pinnacle of understanding and acceptance when it comes to disability.

But I recognize that it is a process and it is a journey. And so I am very much a believer in the approach of really talking to one person at a time, bridging one gap at a time, changing one mind at a time. I think that in turn can have a real ripple effect. So for now, this is work that I am glad to be doing.

I know that it's a privilege to be doing this. When the going gets tough, I just remind myself of all of the moments that I've had where things really clicked for people who I was communicating with, and where I've continued to learn more as well. So for me, I think it's slow going, but hopefully steady going.

Sam: I know that many disabled folks rightly feel it's not their job to educate people about disability awareness… curious where you come out on this. I sense that you're pretty open to it, given that you have your podcast, but even so, is there anything you find super annoying about it? What could people do to meet you halfway?

Emily: I really appreciate that question. I think it's very thoughtful. And for me, one of the biggest things is that I am not a living breathing teachable moment. There are very focused and concentrated times where I'm working or where I'm, for example, in conversation with you right now, and I'm in that head space and I'm ready to have that conversation, and I'm excited to be talking about this, but if I am just out and about living my life, having a day where I'm with my friends or my family, or I'm eating dinner or I'm shopping, or I’m seeing a play, take your pick, I'm not necessarily in that mode of, I'm ready to educate you. And yet I get the questions or I encounter the inaccessible moment and suddenly I have to put my activist hat back on.

And it becomes a bit of a challenge, because this is work that I do and something that I'm passionate about. I can't necessarily just take my disability off and put it on a shelf and be done with it. It's part of who I am, 24 7. So I recognize that.

But at the same time, I want that level of separation where I'm not always obligated to be on. To have that switch flipped, where someone expects me to provide them with some kind of knowledge or information, I have to do it on command.

Sam: I’m gonna loop back to something that you just said. You said you, you might reach the inaccessible moment. Tell me about that.

Emily: When I am out and about as a wheelchair user, I am constantly encountering a variety of barriers, whether it is a building that has stairs, whether the bathroom is too small, whether the aisles are too narrow. Or perhaps trying to get from point A to point B is challenging, because the transportation options are not fully accessible.

For example, I live in New York, just outside of New York city and so every time I'm in the city, I am reminded that the transportation system was not designed with the disability community in mind.  And they are right now working on that. And there is a promise that supposedly, it will be 95% accessible to disabled riders by the year 2055, at which point I'll be well into my sixties.

So we'll have lived a very full and long life, I hope. It's just a constant reminder that things are not designed with any kind of thought to the fact that not everybody moves in the same way.

Sam: Right. Yes. And so the society is very ableist in that way. Recent episode of The Accessible Stall was really thought-provoking when you discussed “internalized ableism.” I'd love for you to to discuss that, if you're open to it.

Emily: Absolutely. So I think it's important to define ableism in general, which I talk about pretty straightforwardly, as attitudes and actions and circumstances that devalue someone on the basis of disability.

It happens a lot in interpersonal interactions and also systemically, for example, with the New York city subway system.

But it's also something that people can internalize. And that's to say that when you exist in a world that continually sends the message that it is wrong for you to exist, that your body is wrong, that you shouldn't be here, that you take up too much space, too many resources that you are burdensome on society, it can become very challenging not to internalize those feelings about yourself. And even as someone who's a passionate disability activist, I still find myself feeling at times like I am too much, I am a burden. I'm making this very difficult on people. I should apologize, or say that I'm sorry for what I need.

But the reality is that every human being has needs and we should not apologize for what we need to exist.

Sam: In that episode, you and Kyle were also talking about the fact that it's likely that all of us, not just disabled people, are guilty of internalized ableism.

Emily: Absolutely. And I think this is twofold. The first being, the biases that people harbor against disabled people. And so this is sort of that form of internalized ableism that even disabled people can have, where you look at someone and you say, oh my goodness, Thank goodness that I'm not like them. Or, I never wanna be like that person, or just making a value judgment on a person and using it as a point of comparison for yourself.

So I think that's one problem that really comes to light when you think about how we internalize ableism. But I think that the other thing is really, sometimes we can be hard on ourselves and we can judge ourselves, and we can judge what we can and cannot do.

And we do that based on some arbitrary idea of a standard, of normal functioning, that just does not exist.

Sam: In a recent episode, Kyle, I believe, brought up something that he called inspiration porn, with regards to disability representation. What is inspiration porn?

Emily: I love talking about this. I think mostly because the term itself gives people pause, but really it's just talking about the objectification of people with disabilities for the sake of making other people, especially non-disabled people, feel good and warm and fuzzy.

A perfect example of this is you might see a story on the nightly news about a bride who is disabled and stands up to dance at her wedding. Or you may see a story about a student who has down syndrome, who is graduating from high school, who was named homecoming king, or prom king, or whatever the case may be.

And we look at these stories and we think, oh my goodness, that is so beautiful. And my question is always, would you be as inspired by that if that person did not have a disability. And if that person did not have a disability, would that be a newsworthy story, or a story worth telling in the first place?

We tend to look at disability as something that needs to be overcome. And then if you do something that society would otherwise deem normal, suddenly you are celebrated for it, because you have molded yourself into what society expects of you and you have overcome these challenges. It's a very frustrating narrative, because I am not inspiring simply for living my life, or even really for accomplishing something, as a disabled person. If you are inspired by something that I do, let it be because you know more about who I am then just taking me at face value.

Sam: So well put, and I think that part and parcel of this problem in representation is that people without disabilities are creating representation of people with disabilities.  Do you know what I mean? Otherwise, you would never see a pitying gaze.  

Emily: I think that there's this treatment of disabled people like it's amazing that we woke up to see another day.  I try to remind people that taking that attitude just comes from your stigmatizing assumption about what it means to have a disability. It's not that we are overcoming ourselves. It's that we're overcoming your ableism.

Sam: You made this video on YouTube that I checked out a couple days ago, from Microsoft. It's about ways to be more inclusive of people with disabilities. Your advice was interesting. It was pretty simple. “Be your usual self.” Talk to me about that one.

Emily: Yeah. I had so much fun making that video because I think people assume that there must be some kind of rule book or playbook when it comes to engaging with disabled people.

But just being yourself makes so much sense when you think about it because you don't need to treat disabled people any differently. Certainly there are things that you should be considerate of. There are ways that you can make your interactions more accessible, but when you are engaging with someone who has a disability, that person is a human being.

So engage with them in the same way that you would engage with any other human being. And if you need to adapt a little bit in order to connect with that person where they are, then do that, but there's no need to treat that person like a delicate flower or something breakable.

Sam: What are some of the challenges that folks with disabilities face at things like protests?

I know that some of the black lives matter protests in Portland and summer of 2020 had ASL signers there, but what kind of changes might you like to see at political protests or other types of events to make them more safe and more accessible for all people?

Emily: I love this question, especially because I think political activism is a space where it's very challenging to engage as a disabled person, whether that's because of crowds, whether that's because of overstimulation, whether that's because of communication, barriers or other access barriers.

Being on the front lines of a political protest is not always the most accessible thing for someone who has a disabled mind or body. And so while it's really important to plan actions, protests, marches with disabled people in mind, to have captioning or to have interpreters, to have places to stop and take rest, sit down on a chair get some water recover from the heat or the cold or whatever the case may be.

You can certainly plan the event with that in mind, but also recognizing that being physically present on the front lines is not the only way to be a good political activist.

And, that goes back to what we were talking about earlier with offering virtual options for things, recognizing that, for example, the use of social media, many people think that’s “slacktivism.” I would argue that's just another way to make activism accessible to people if you're not physically able to be present on the frontline.

So I think as much as it's about planning, accessible political actions, it's also about broadening your definition of what that looks like in the first place.

Sam: That's really cool that you bring that up. Cause I personally don't go to protests for a variety of reasons. it's cool that you are showing me more ways to be engaged for something that I care about, but I've been stuck around for some time.

Emily: Yeah. It's a balance for sure. I also have to very much acknowledge that I come from a place of privilege. I am, a white woman with a physical disability, I can communicate verbally. And if I was to put myself out on the front lines, I do think that in some ways I would be safer than other marginalized groups.

And yet in many ways I would also be in more danger. And I have to balance the acknowledgement of the privilege that I do have with the fact that there are other ways for me to engage and mobilize and care about an issue and do so in a way that is a little bit safer for me and my current circumstances.

Sam: I don't think that you've been to Esalen, but it Esalen is a retreat center. What do you wish centers? Such as this one might consider in terms of awareness, in terms of making their spaces open and enjoyable, accessible for everyone.

Emily: Yeah, I've not been there.  I think very often about wanting to engage in some kind of, mind-body sort of retreat , but then I always find myself hesitating because I do wonder about access in multiple ways. First and foremost, for me as somebody who uses a wheelchair to get around, I'm wondering about the accessibility of the grounds of a retreat center. I'm wondering if there are clear pathways. I’m wondering what the rooms are like.

I'm wondering what the restrooms are like. And all of the activities that are done, are they adaptable? Are there instructors who are trained in adapting the activities? I'm thinking about whether I would be welcomed into the fold as someone who's an active participant or whether I would be siloed off to do my own thing.

I'm always thinking about what it looks like to navigate and what it looks like to be included when it comes to any kind of space where you're engaging like that.

Sam: Thank you. Yes, that's a great answer. So in terms of just basic ways that centers can instantly make real effort to be more inclusive, what would you say some of those might be?

Emily:  Messaging is a big one. One of the first things that I tend to do when I'm researching pretty much anything, whether it's some kind of activity, event, or a location that I'm going to, I will check the website for any kind of information on accessibility.

I'm looking for at least enough detail that if I called and wanted to follow up and get more information, I would feel like they would have a good handle on responding to my question. So it would say, we offer wheelchair accessible facilities. We offer adapted events. We are focusing on being as inclusive as possible.

And we welcome disabled people here. So messaging is definitely a big one.

I'm looking for imagery as well sometimes. Not that I want necessarily to see the tokenizing picture of the person sitting in a hospital-like, medical-style wheelchair on your website, but I also find myself wondering, have you had other people with disabilities there before?

Have they engaged in your activities? So thinking about things things like that. And then I'm also looking for a willingness to adapt and to say, we've not done this before, but we're gonna figure it out. So sometimes it's not always about having the answers. Sometimes it's about a willingness to engage in figuring that out together.

Sam: So useful. And you brought up an interesting word, tokenizing. What are ways to engage with intersectionality without being tokenizing?

Emily: I think that it's always a challenge because you feel like you want to just have that checklist and you want to check off all the boxes. And you want to do right by people, but you wanna do it in a sort of linear clear cut way. So by the time you've gotten from point a to point B, you've successfully included everyone, but it doesn't always look like that.

It's an ongoing journey and sometimes you take steps forward and sometimes you take steps back and sometimes it's messy and sometimes you make mistakes and it's a learning process.

And so I think that the best thing that anyone can do is just be mindful of the world outside, beyond themselves. And know when you don't know, and know when you need to ask, and know when you need to step back and learn and amplify other perspectives and just recognize that you're not ever going to have all the answers and you're not ever going to become the world's most evolved ally to all other human beings. It's a growth process.

Sam: That's so good. Emily, we're coming up on time, so I'm just gonna hit you with probably two or three more questions. What brings you joy?

Emily: I think right now, what brings me the most joy is just being around people who share my passion for social justice. And I don't mean that we always have to have our activist hats on, but there are people that I know who envision a more inclusive and accessible world and being in their company and their presence and spending time with them and having their friendship and learning from them is just something that brings me joy.

And maybe that sounds cliche. And it's not as though we sit around just talking about activism all the time. I'm perfectly happy to switch that flip off for a few minutes and just be, but those are the people in my life that are really bringing me joy right now.

Sam:  What is your secret superpower? What's something that you're really good at, that not many people might know about ?

Emily: This is probably giving away a secret that I'm really good at getting people to tell me what they're actually thinking.

I feel like I just give people that pathway to open up and spill their guts to me. And maybe that's a good thing or a bad thing, depending on the moment. You get a lot of information that way. (Laughs)

Sam: You've been adapting to the world, I think, more than the world adapting to you. And I'd like to ask you, what are some basic societal shifts communities, coworkers, families, friends could make to be more inclusive?

Emily: I think the best thing that any person can do is to say, how can I make this more accessible and inclusive for you?

Whether this is an event or whether this is some kind of small social gathering, or whether it's a presentation that someone is giving, just asking, what can I do to make this accessible to you? And if you happen to know, for example, that you are planning an outing with me and you let me know that you double checked ahead of time that the place is wheelchair accessible. That is such a small step, but something that is so big and meaningful to me. So just asking, and then doing. That's how you can make the world much more accessible for everyone.

Sam: Emily Ladau, you are the cohost of The Accessible Stall podcast with Kyle Khachadurian. You're the author of “Demystifying Disability: What to Know, What to Say and How to be an Ally.” And you're fantastic. Learned so much from you today. Thank you so much for being on the show.

Emily: Thank you so much for having me. This was really such a wonderful conversation. I appreciated so much.

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