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Emily Ladau is the author of Demystifying Disability: What to Know, What to Say, and How to Be an Ally, available from Ten Speed Press.
She is an internationally known disability rights activist, writer, and speaker, and the editor in chief of the Rooted in Rights blog, a platform dedicated to amplifying authentic narratives of the intersectional disability experience. She also co-hosts The Accessible Stall, a podcast about disability issues.
Ladau’s writing has been published in outlets including the New York Times, HuffPost, CNN, Self, Salon, Vice, The Daily Beast, Variety, and Marie Claire Australia. Her work is also included in the Criptiques Anthology and About Us: Essays from the Disability Series of the New York Times. She has served as an expert source on disability issues for outlets including NPR, Vox, Washington Post, and Teen Vogue, and has been featured in a range of press outlets including Newsday, BuzzFeed, CBS News, and U.S. News & World Report.
Air date: October 31, 2021
Emily Ladau (00:00:01):
I am a very passionate disability rights activist. And that stems from the fact that I was born with a physical disability called Larsen syndrome. It’s a genetic joint and muscle disorder. So my mother has it. Her younger brother has it. And she found out while she was pregnant with me that she was going to pass it on. Although she had been informed that she wouldn’t pass it on. And a lot of people perceive that as incredibly tragic, but I actually find it to be one of the best parts of my life having someone who really showed me the way as I navigated becoming an advocate for myself and embracing who I am as a disabled woman. So I am very much a strong believer in disability as an identity, as a culture, as a community. And that informs all of the work that I do.
Brad Listi (00:00:57):
Wow. Yeah. And it makes sense to me that having a parent who has the same disability would be so helpful. Just to have a mentor. Obviously having a parent, an involved parent anyway, you’re going to have a mentor no matter what. But that particular connection that you share with your mother had to be, I don’t know, just a unique connection to have and a way for you to have somebody to model that lives with you. I can’t think of anything better really, when it comes to how to learn how to be in the world as a disabled person.
Emily Ladau (00:01:41):
There was always this built-in reminder that I was going to grow up and that I needed to speak up for myself in order for people to pay attention to what I had to say. And I recognize that it’s a privilege first of all, having somebody to model that for me. And second of all, a privilege that I do have the ability to speak up because not everybody communicates in the same way that I do when they have disabilities. So I very much acknowledge that I come from a place of privilege in both of those senses.
Emily Ladau (00:02:11):
But at the same time, I actually also like to share the story. And my mom says this too. That as much as she modeled advocacy, she was not herself really a part of the disability community. She was the one along with my father who really got me involved in the disability community. But she herself was not connected until I started pulling her along, a little bit kicking and screaming at first. And I said, “Hey, this is not just about advocacy. This is about a community. And I want you to be a part of that with me.” So we’ve really been each other’s teachers as I’ve grown up.
Brad Listi (00:02:50):
Wow. And you as a child were on Sesame Street. I have to make sure to flag this. Because I mean, this is something going back to when you were little that you’ve been involved with, which is helping to bring awareness to issues related to disability. And as this one example demonstrates, to help to foster positive and authentic representations of disabled people in mainstream media. And plus as a guy who grew up watching Sesame Street, and I know you probably did too, what a thrill it must’ve been to be on the set. Can you just talk about your Sesame Street experience and indulge me?
Emily Ladau (00:03:42):
I was 10 years old when I appeared on Sesame Street. So I think that a lot of what I learned is really reflecting on it and recognizing in hindsight that I had this immense opportunity to educate about my life with a physical disability on this national platform. But what’s most powerful for me is that when I was little, I really didn’t see much in the way of disability representation. And in fact, one of the only specific instances of representation that I very vividly recall is seeing a little girl using a wheelchair on Sesame Street. And I ended up becoming the person who filled that role on the show after her.
Emily Ladau (00:04:27):
So there’s so much power in seeing yourself reflected back at you. But for kids who are disabled and especially kids who are multi marginalized and disabled, right? I’m a white person who’s a wheelchair user, who appeared on the show. And that at the time was revolutionary. But now that we’re continuing to progress and we’re continuing to try to show more diverse representation of disability in the media, there’s power in that. There’s power in seeing that yes, you too are a part of society. Yes, you too have humanity. And I think that we cannot understate the value of being able to see yourself just as another person on television. And that was how it felt for me when I was on Sesame Street. I was just another person hanging out with Elmo, hanging out with Big Bird and Oscar the Grouch. And yes, we were talking about my disability, but we were doing it in a way that showed, “Hey, I’m just another kid in the neighborhood. I’m part of your community. And I belong here just like you do.”
Brad Listi (00:05:39):
Yeah. You talk about representation. I had Ryan O’Connell on this show several years ago. But he’s kind of a pal. He lives in Los Angeles, and I know him a little bit. And the stuff that he’s been doing in Hollywood on television is pretty great. Talk about an intersectional existence, if I’m using the term correctly. As a gay disabled man, just to have him on TV and telling his own story is pretty awesome and overdue.
Emily Ladau (00:06:20):
Watching his show Special on Netflix was kind of a revelation for me because I think we’re finally moving beyond the point where disability is simply used as a plot point, or as inspiration, or as something that makes people grab a Kleenex. And we’re now starting to look at disability from a more holistic point of view. Disability is one part of an entire human being. We have complex human experiences. So seeing shows like special, and actors like Ryan O’Connell who are bringing their whole selves to their roles and who are saying, “I’m disabled. I’m proud of that, but let’s also talk about how that interplays with every other facet of who I am,” is incredibly powerful. And I’m so excited that we’re moving in that direction. It’s long overdue, and we’re not 100% there yet by any means. But knowing that I am no longer part of a population that is completely relegated to the shadows when it comes to representation is something that has been nothing but a positive in terms of how I continued to evolve in my identity.
Brad Listi (00:07:39):
Wow. Yeah. And you talked about inspiration and the ways in which disabled people have traditionally been portrayed in our media. And I think that is a nice opportunity to segue into talking about what you refer to in the book as inspiration porn. Can you explain that to people who are listening? I think it’s kind of intuitive, but it’s worth dissecting it a little bit.
Emily Ladau (00:08:01):
I think that inspiration porn as a term really stops people in their tracks, because the word porn immediately has negative associations for a lot of people. And it shouldn’t. There are certainly ways that pornography itself can be created in a positive and supportive atmosphere. But what we generally associate the term porn with is objectification. So when we use the term inspiration porn in reference to disability, we’re talking about how we often objectify disabled people for our own warm, fuzzy emotions. So that happens when you see for example, a headline that says boy with down syndrome crowned homecoming king, or little girl with spinal bifida comes in last place in the race, but inspires everyone. And it’s just these narratives that we create of overcoming that we wouldn’t necessarily think of if someone was not disabled.
Emily Ladau (00:09:08):
My question always has been, would this same story become a clickbait headline if this person wasn’t disabled? Somebody standing up in their wedding to dance after they’re paralyzed, somebody walking across the stage at high school graduation. Likely not a story if disability is not involved. So inspiration porn is a term that was popularized by Stella Young whose Ted Talk I highly recommend. It’s called I’m not your inspiration, thank you very much. And she explains that we often exploit disabled people for the sake of making ourselves feel better or feel good about ourselves when we’re not disabled. And that becomes an incredibly harmful narrative that follows disabled people around and completely denies the nuances of our humanity.
Emily Ladau (00:10:00):
So in the book, I try to break down a couple of different types of inspiration porn. And there’s a pretty good chance that many of the people who are listening to our conversation right now have probably shed a tear or two with them, or have thought to share it on social media, or have said, “Wow, this is a really lovely story to end an ugly news hour.” The 6:00 news. Then they put the story at the end of the news about someone who was in an accident and learns to walk again.
Emily Ladau (00:10:32):
And it’s not that I begrudge that person. I’m not bitter about that. I think that personal achievements in moments of importance are wonderful, and I want to celebrate them. But I don’t want to do it simply because that person is disabled. Because to me, that’s not looking at the whole human. So inspiration porn is an overarching term to describe what we mean when we’re talking about those types of stories.
Brad Listi (00:11:00):
Yeah. And you also talk about how sometimes, narratives around disability are couched as this overcoming of adversity. And that if you just give it enough effort, you can make it. It’s that kind of Horatio Alger kind of thing. Or is it Horatio Alger? I can’t remember, but you know what I mean.
Emily Ladau (00:11:23):
I think it may be Alger, but I know exactly what you mean.
Brad Listi (00:11:27):
Yeah. And I think the implication is that disability is a personal failure. That’s kind of embedded in that. And beyond that, whether it’s inspiration porn or this overcoming adversity kind of narrative, it is a subtle way of reinforcing prejudices around disability. Is it not?
Emily Ladau (00:11:50):
It absolutely is. And there’s also this incredibly false understanding of disability as something that is wrong with a person and something that needs to be fixed, or cured, or eliminated. And we don’t realize that when we’re perpetuating these narratives of overcoming adversity, what we’re really saying is, “We live in a systematically inaccessible world, but that’s your problem as a disabled person. And then it’s up to you to figure out how to navigate it. It’s not up to everybody to figure out how to make the world a more welcoming and inclusive place.”
Emily Ladau (00:12:23):
So when we boil it down to that, it’s actually kind of frustrating because it’s not that I’m overcoming adversity. In most cases, it’s that I’m overcoming the inaccessible barriers that you have put in place that make my life harder. And that’s not to say that I wouldn’t still be disabled without those barriers in place. I am a wheelchair user. I have a medical diagnosis. This is part of me inherently and who I am. But when you say, “Okay, well wouldn’t you be less disabled if you just tried harder to walk, or if you just tried harder to do something that makes you ‘closer’ to normal?” No, I’d still be disabled. The problem is not me. The problem is the barrier that you put in place. So while you’re there judging me for who I am and thinking that something is wrong with me, my question to you is isn’t there really something wrong with the society that we live in if you’re thinking that way?
Brad Listi (00:13:25):
Right. Right. And two, I think a lot of people are made emotional and uncomfortable when they consider disability. They view it as this terrible tragedy. And I say these things, and I have to make sure to flag that I myself am guilty of so many of the infractions that you articulate in your book. So I think it’s important for people listening to know that this is not a book that … I read it. I’m talking to you. I’m speaking from experience here. I didn’t feel shamed by your book. But I did feel some sense of self-derived personal shame as I reflected on my own behavior and attitudes through the years, because I have blind spots. And I have a disabled child now, you know? So my life has changed. My perspective on these things has necessarily changed. It shouldn’t take something like that, but I’m just describing the circumstances of my life. So these things, I feel them really acutely and I want to make sure to educate myself. And I just want listeners to know that you’re very good about being open to the fact that we have these blind spots and we’ve made these mistakes, and we have to work through them.
Emily Ladau (00:14:46):
I’d even challenge you, and I’m sure you’ll love me for this, to think about the ableism behind the term blind spots too.
Brad Listi (00:14:53):
Oh right. There you go. See, I just did it. Oh my God. By the way, we’re going to spend an entire section of this conversation on language, because this is a writerly and readerly podcast. So this is a real preoccupation of mine and a place of great learning. So we’re going to get to all of that, but there I am demonstrating my own ableism right there.
Emily Ladau (00:15:17):
But the thing is that I do it too, and I am disabled. I think that’s exactly what I don’t want to happen is people become so stuck in their own heads, that they are afraid to talk about disability at all. So on the one hand, yes, I want people to be more conscious of how they think about disability, and talk about disability, and engage with disabled people. But on the other hand, I don’t want anybody to put down my book and think, “Oh my God, I’m going to make so many mistakes that why even bother?” Because the reality is everybody, myself included as somebody who jokes that I’m a professional disabled person 24/7, still makes these mistakes.
Emily Ladau (00:15:57):
So rather than further alienating people who may already be uncomfortable with disability simply because they’ve been socialized to understand disability as a negative thing, I would rather say, “Hey, it’s okay. We have a lot of conscious unlearning that we need to do around ableism. And I want to welcome you into that process, recognizing that it’s an evolution and not something that you’re going to accomplish overnight, or maybe ever fully. Because we’re all constantly evolving human beings. We’re all fallible human beings.” And I think that’s okay.
Emily Ladau (00:16:36):
So yeah. Maybe take a moment to reflect on something that you’ve said or something that you’ve done that doesn’t really feel very great that was ableist that you wish that you hadn’t done. But rather than hang your head in shame and just kind of give up, my hope is that people will say, “Okay, I now have a new starting point for conversation and for learning. And I want to engage in that knowing full well that it can be messy and an ongoing process.”
Brad Listi (00:17:06):
Yeah. This speaks to your kind of overarching philosophy that you talk about early in the book. I’m going to read it here if I may. Your philosophy is, “If the disability community wants a world that’s accessible to us, then we must make ideas and experiences of disability accessible to the world.” And I think that’s a very wise approach, and that’s definitely what your book is doing. There has to be a dialogue. There has to be some good faith acceptance that works in both directions. You know what I’m saying? The abled community, if that’s a way of putting it. Is that a way of putting it?
Emily Ladau (00:17:47):
I usually say the non-disabled community, but abled work as well.
Brad Listi (00:17:51):
Okay yeah. It needs to do a better job of engaging. If it’s in good faith, I think what you’re saying is that the disabled community needs to welcome people into the fold and have that dialogue. It’s the only way we’re going to make progress, right? If we’re at odds or there’s too much shame and emotional tumult surrounding it, it will be hard to move forward in an effective way.
Emily Ladau (00:18:24):
Absolutely. Though I would be remiss if I didn’t reiterate what I said in the book right after I share that mantra that informs everything that I do. Which is that I know my viewpoint on this is not always a popular opinion. There are people who get very frustrated by the fact that simply existing in a disabled mind or a disabled body means that you become somehow an inherently political statement just by existing. And you become a constant teachable moment just by existing.
Emily Ladau (00:18:54):
And to be quite honest, I get exhausted too. I mean, not only am I disabled. But I work on this professionally. At the end of the day, I cannot take my wheelchair off, put it on a shelf, and become non-disabled. So this is something that is with me all of the time. And it can be exhausting to do that educating.
Emily Ladau (00:19:13):
But I also firmly believe in not alienating people. Because if we do, then no one’s going to want to engage with us when we’re saying, “Hey, here are actual, practical, meaningful ways that you can support us. And you can make the world more accessible and inclusive.” So I want to meet people where they are. I really am not the type of person who wants to push you away and say, “Stop asking me questions and go Google it.”
Emily Ladau (00:19:41):
And I know there are a lot of people like that, and I respect that. It’s a lot of labor educating people about who you are as a human being. And it’s a lot of labor to talk about these very deeply personal things. But at the same time, I very much believe that when we push people away who are honestly trying to have a well-intentioned conversation with you, we’re doing ourselves a disservice.
Emily Ladau (00:20:05):
So that’s where my advocacy point of view comes from, is that I want to have these conversations. I want to engage. I want to educate. I don’t want to do it if you’re being rude to me. I don’t want to do it if you’re being nosy and invasive. But at the same time if you have a genuine question, yeah, let’s have a conversation. I’m not going to yell at you. I don’t bite. And that’s just me though. I’m speaking for myself. I understand that not everybody wants to educate all the time. But for me, I want to bring you into that fold.
Brad Listi (00:20:37):
And you’re a really effective communicator. Not only do I say that having read your book, but talking to you. You seem like you have the gift. So I feel like you’re in the right line of work. And I can say too now that you’ve written and published this book, if you’re exhausted from educating and people are asking you can just say, “Hey, buy my book.” Right? You have it out now.
Emily Ladau (00:21:00):
I mean, super convenient. Yeah. I can just pass off a copy of my book. But at the same time, that would almost undercut a lot of what I say in the book, or try to convey in the book, which is that I don’t have all the answers, and this is only a starting point. So I really encourage people not to just read this book, put it on a shelf and say, “I was a good ally today. I’m done.” My hope is that if you are just starting to learn about disability and you picked up this book, you’ll go to the back where there’s further reading and resources. And you’ll keep that process of learning going.
Emily Ladau (00:21:35):
Because I’m in no way, the authority on disability, and the book is not the definitive guide to every disability in every disability experience in the entire world, by Emily Ladau. It’s just demystifying a little bit about disability so that you have a place to start when you’re unsure of where to start.
Brad Listi (00:21:56):
Okay. So speaking of a place to start, I’m going to shift now to ableism. I think this is a topic that has come to the fore more often in recent years. It’s certainly come to my attention in recent years. And I guess part of it is my parental experience, but part of it I think is the culture. And I think it’s worth defining. Again, unless you have this stuff at your recall, I’ll just read what you wrote so we can start with the definition. You define ableism as attitudes, actions, and circumstances that devalue people because they’re disabled or perceived as having a disability. And this can manifest in so many different ways, some of which are very subtle and ingrained into how we live, and communicate, and operate in the world
Emily Ladau (00:22:58):
100%. And I also like to be clear that I tried to keep my definition relatively simple. There are some much more in-depth definitions that I really appreciate around ableism that also acknowledge the ways in which it connects with other forms of stigma, and discrimination, and oppression.
Emily Ladau (00:23:18):
But for me, I was trying to get to a very simple root of what ableism is, because it’s the term that I think is becoming more common, but one that people are not as quick to understand necessarily, because it’s been outside of our collective consciousness for so long. And I think that the pandemic actually has brought about a greater understanding of ableism. Even if we don’t have the language to articulate what it is that we’re understanding, I think people are beginning to recognize simply from the way that the world is shifting and the way that we’ve had to change how we operate, that ableism is baked into the vast majority of our systems.
Emily Ladau (00:24:01):
And a perfect example of that is the fact that disabled people have been asking and asking for access to doing things remotely, whether it’s telehealth or whether it’s education from home, working from home, attending events from home. And we were told, “No, no, no, we can’t do it. It’s not going to work. It’s a logistical nightmare. It’s too expensive.” And then all of a sudden when the pandemic hit and everybody had to work from home, and everybody had to see doctors from home, and nobody could use transportation systems because we all needed to stay inside and be safe, it was like, “Oh my God, we need to make this immediate shift. Let’s make the world work for everybody.”
Emily Ladau (00:24:44):
So that was really the crux of ableism coming into our collective consciousness for one of the first times in modern memory. Even if we didn’t have the language, as I was saying to articulate that.
Brad Listi (00:24:59):
Yeah. And kind of sad that it took the pandemic to make these changes happen. Because they were happening on behalf of the non-disabled people. And the benefits that accrued to disabled people, benefits that as you said, disabled people that have been asking for. Is benefits the right word? Do you know what I’m saying? But just these accessibility issues that disabled people had been advocating for suddenly shifted as a result of this. It should not have taken that, I guess is my point.
Emily Ladau (00:25:36):
And not only that, but disabled people were still and are still at incredibly high risk because of the pandemic. So as we were beginning to try to shift the world to work in new virtual ways, we were still throwing disabled people under the bus in ways like healthcare rationing. Because even though this is inethical or unethical, and also not really legal according to guidance from federal agencies, doctors were making decisions about who to save, who to give life-saving care, who to put on that ventilator based on whether or not the person had a disability. And basically saying, “Well the disabled person’s quality of life must be lower, so let’s not save them.”
Emily Ladau (00:26:30):
So there was that manifestation of ableism. And now on top of that, more people have become disabled because of COVID, long haulers who were experiencing COVID. And people who have not had access to the proper care that they needed because of COVID related barriers. It’s created more disabilities. So there’s this perpetual cycle of ableism that we tend not to think about, even though we’re much more aware of it, because it’s now finally something that the news is talking about. Even if we’re not calling it ableism, we can no longer deny that it’s a reality.
Brad Listi (00:27:08):
Yeah. I mean just today, I saw a story in the New York Times that I was so excited to see because I’ve been waiting for it. Which is a story about how parents of disabled kids are having a terrible time with school. It’s doubly stressful sending your kid into school, especially in states where the governors are crazy. Did I just use another word? I don’t know what to use. The governors are irresponsible and have not mandated mask wearing in schools.
Brad Listi (00:27:46):
So with our son, I have to confess, I look around even at our friends and I’m like, “Man, your kids are doing play dates in doors with big groups of kids. And they’re not vaccinated.” And I’m like, “I know that you’re probably playing the math odds and you’re not that worried about your child. But if your child gets COVID and goes and gives it to God forbid some child with an immunity issue or a disability, you could kill that person. You could kill a child.”
Brad Listi (00:28:17):
There’s just so much resistance. People are just done. There’s a quote in this article. And I apologize for going off on a rant, but this article touched a nerve because we’ve been living with this, my wife and I for the whole duration of this pandemic. And it’s frustrating how little attention is paid to disabled kids in particular who could be affected by this.
Brad Listi (00:28:38):
But there’s a woman who says something like people are just done with the pandemic, but the pandemic isn’t done with us. And I need to underline that because I think it’s just very easy to slip into self-focus for some people anyway, and to forget how their actions or inactions could impact vulnerable people in particular.
Emily Ladau (00:29:05):
I’m glad you brought that article up, because I actually saw it this morning too. And I was like, “This is great. We need more coverage like this. We need more people speaking out and talking about how the fact that people who are playing around with the mask mandate are really playing around with other people’s lives.”
Emily Ladau (00:29:24):
It’s not just a matter of how you feel about wearing a piece of cloth over your face. And we’re not living in a post pandemic world like so many people are saying. Yes, in many ways we are re-emerging. We are learning how to live with the pandemic. But at the same time, it’s an absolute nightmare to be a disabled person and to be a loved one of a disabled person, a caregiver of a disabled person, and constantly worry about if you or that person are going to get sick, because other people can’t be bothered to wear cloth on their face or get a vaccine. And I know that I’m saying things that any people are going to find controversial here. But I will forever say that it is not controversial to ask people to protect the lives of others.
Brad Listi (00:30:13):
That’s right. Enough already. I’m so over it. What is it? Half the world has been vaccinated at this point or has received at least one shot. That’s three and a half billion people. We’ve got the data. The vaccines are safe. They’re free. In America anyway, they’re free, they’re available. They’re a miracle. Let’s just get on with it. The people who are resisting this and who are screaming at school board meetings, I don’t know. I have zero patience as a parent of a disabled child, but just as a human being, I have zero patience with this. As a rational person, come on. We shouldn’t have to equivocate here. This is clear.
Brad Listi (00:30:55):
And I think what’s been most frustrating to me and troubling is the incredible resistance people have to common sense measures. And I get it. It does circumscribe what you can do. People just are sick of being confined. And that’s natural. They don’t want to be housebound, or they don’t want to be having to parent all day long. It’s having to be stuck at home with your kids. And it’s much easier if your kids can go play with other kids, and I get that.
Brad Listi (00:31:32):
But they can’t be bothered to just have the kids play outside. The kids aren’t wearing masks. It’s like these little things where I’m like, “Man, you’re kind of freelancing. You’re making up your own rules. And you’re putting other people at risk.” And I say this, these are people I know. It frustrates me.
Emily Ladau (00:31:54):
I relate every time I see people who are completely flouting basic safety online, it really frustrates me because these are people that I care about. So not only am I worried about myself and the people around them, but I am worried about them too. They’re not worried about themselves, but I’m worried about them.
Emily Ladau (00:32:16):
And also, you brought up an interesting point. People are sick of being inside, right? But a lot of disabled people have also been saying, “Hello, you are now learning what it is like to have limitations placed upon you that you didn’t ask for. And that comes in the form of inaccessible buildings, or a lack of accessible transportation, or a lack of paying attention to planning things inclusively when it comes to bringing disabled people into the fold.
Emily Ladau (00:32:49):
So we’re like, “Yeah, we already know what this is like. We already get what this isolation is like and what this being pushed to the wayside is like. And now you’re experiencing it and you don’t like it so much.”
Brad Listi (00:33:01):
Right. Right. Welcome. Welcome to the fold. And just I don’t know. For people out there, just think of other people. Why is it so hard? Think of others. We’re almost hopefully to the end of this. Fingers crossed if we can get enough people vaccinated. And I mean I don’t know. We’re still a ways off, but I feel like there is a light at the end of the tunnel, so to speak. And I just would encourage people to think of vulnerable populations in particular around this, because it is truly nerve wracking for us sending our son to school every day. Thank goodness he’s got a mask on, his classmates have a mask on. But we had to pull them out this week and we had to pull our daughter out this week because there was a positive test in his class. And then two days into the home quarantine, they were like, “Oh actually it was a false positive.” So we’re like, yeah. And then now my son’s aide just texted us this morning that she has a sore throat and she’s going to get tested. I mean, it’s a lot to bear. It’s a lot to bear for any parent, but especially when your child has a disability and some immune issues, and it’s just in a more vulnerable category. So anyway, that’s my stump speech. But I got to say that.
Emily Ladau (00:34:20):
A never-ending cycle. And this has been a PSA brought to you by Brad and Emily.
Brad Listi (00:34:26):
Exactly. So a little bit more about ableism, I think one of the things that you write about in the book so well and that needs to be underscored is the embedded attitude in ableist thinking that disabled people don’t have full lives. And this needs to be dispelled. Go ahead.
Emily Ladau (00:34:53):
100%. And I think there’s two layers to this. First of all, we need to examine our understanding of a full life. Because we can have incredibly ableist views of what it means to have a full life. We tend to assume that your life is full if you are doing certain things like holding down a job, or maintaining a busy social calendar, or getting married, right? These are things that we tend to think of as a full life.
Emily Ladau (00:35:25):
So we first of all assume that disabled people don’t have full lives if they don’t do these things. But then on the flip side of that, we assume that they can’t do these things. So it’s this paradoxical way of thinking about it, because we’re ableist in two ways. First of all, in our definition of a full life. And second of all, in our assumptions that disabled people can’t have whatever a full life means to them.
Emily Ladau (00:35:55):
So I really challenge people to think about how what makes their life full may not look like what makes somebody else’s life full. And also think about what it means to value the humanity of a person based on what their life looks like. Is somebody who is married and working a high paying job on Wall Street somehow a more valuable human being than somebody who is unable to hold down traditional employment, but maybe doing incredible creative things with their time using adaptive technology? Right? But we assume that the person who’s making the money and holding the high power job is living the fuller life and is a more valuable human being. That’s kind of a messed up way of thinking.
Brad Listi (00:36:51):
Right. Well I mean that’s yeah. I mean, equating wealth with value, it’s the heart of the American system. And I think it makes a lot of us miserable, frankly.
Emily Ladau (00:37:07):
I think so too. And it’s hard because I recognize that we operate in a capitalist society. And I recognize that we connect worth and productivity. But I cannot stress enough that a disabled person is a whole human being simply because they are a human being. Nobody needs to prove their worth to you. Nobody needs to prove that their life is worth living.
Brad Listi (00:37:34):
So another issue related to ableism that you bring up is the way that disabled people are often unseen or excluded from conversations that implicate them. And one of the examples that really struck me was with regard to Time’s Up and how there’s no mention of disabled people, or at least at the time of publication. I don’t know if it has since changed, but can you just talk a little bit about that particular, it’s that organization, but it’s really the larger issue and how it impacts disabled people.
Emily Ladau (00:38:09):
Last I checked, I do think that they have someone who associates with a disability organization as part of their work. But it’s pretty striking that we don’t consider disability and identity that needs to be included when we talk about the impact of things like Time’s Up. When we talked about the impact of things like sexual assault and sexual harassment. We make so many assumptions about disability. We assume that disabled people are asexual, which they certainly can be, but disability and asexuality do not go hand in hand. You can just happen to be an asexual disabled person.
Emily Ladau (00:38:55):
We assume that disabled people are not in our workplaces being affected by these things. We make so many assumptions that thereby lead us to exclude disabled people from these incredibly needed conversations. When in fact, disabled people are three times more likely to experience some kind of sexual violence than non-disabled people.
Emily Ladau (00:39:19):
So we cannot overlook disability when we’re talking about other social justice issues. And to your broader point about disabled people not being at the table in conversations that are relevant to us, there’s a saying that I mentioned later in the book, “Nothing about us without us.” Which is a mantra of so many in the disability community. And that’s simply to say that if you are doing something that is related to disability, don’t do it without us at the table.
Emily Ladau (00:39:53):
But there’s kind of another layer to this, which is that disability is the only identity that can cut across any and all other identities. And, we’re the largest minority in the world. There’s 1.3 billion disabled people. So actually, every issue is a disability issue, because every issue affects disabled people.
Brad Listi (00:40:19):
Right. Right. I think there are really broad ways of thinking about disability. You say it’s the largest minority group in the world. But in a way, everybody who’s born a baby experiences some level of disability if you can think about it that way, right? When you’re a baby, you are reliant on help for movement. And do you know what I’m saying? And then as you get older, at some point, you’re going to experience at least some level of disability if you age and your physical capabilities deteriorate. So I think it’s a useful way for non-disabled people to understand disability and to feel in a very real way, a sense of connection to it. It affects us all.
Emily Ladau (00:41:10):
There is a phrase that I talk about in the book, and it is temporarily able-bodied. And not everybody likes that phrase, but the reality is that the disability community is the only community that anyone can join at any time. And I don’t say that in a threatening way. It’s not a threat. It’s just a reality. So I always ask people, “Why wouldn’t you want to make a world that is more accessible so that if tomorrow you wake up and you’re the one experiencing disability, the world would be more welcoming for you too?”
Emily Ladau (00:41:44):
But on top of that, we also don’t seem to be conscious of the fact that accessibility and inclusivity makes the world better for everybody, regardless of whether you identify as disabled or not. There’s another thing that I talk about a little bit, which is the curb cut effect, which is essentially saying that not everybody can step up a curb, but everybody can use a curb cut. So whether you are a wheelchair user, a parent with a stroller, a person pushing a laundry cart, somebody rolling your luggage, somebody on a skateboard or roller skates. Whatever the case may be, curb cuts work for everybody. So why not just make more curb cuts? Literally and figuratively, so that the world will work better for everyone regardless of your disability status.
Brad Listi (00:42:35):
Yeah. That’s such common sense.
Emily Ladau (00:42:38):
It should be common sense.
Brad Listi (00:42:39):
It should be.
Emily Ladau (00:42:40):
It’s not yet, but I’m really hopeful that we’re getting there.
Brad Listi (00:42:43):
Okay. So I want to now talk about language as promised. Because this is area of particular fascination for me. It’s also an area of particular consternation for me. Not only because I feel myself implicated over and over again. I’ve been implicated so far in this conversation, but for using words that are ableist. And I also if I’m being honest with you, because this kind of ableist language is so deeply embedded into the common vernacular and the culture, I feel a sense of frustration because I’m like, “Well, what word do I use?” What do I yell at people in traffic in Los Angeles when they cut me off?
Brad Listi (00:43:32):
But I want to go through some words, because some of them might surprise some people listening. Some of these words, I paused for a second and I was like, “Oh wow. I didn’t realize this one too is implicated in ableism.”
Brad Listi (00:43:48):
But the obvious one is what you kind of call euphemistically the R word. I think that’s a good place to start because I’m generation X. Growing up, it was incredibly common. It’s still common for people to use it not necessarily as a pejorative, but to use it as a way of kind of labeling an experience as negative. Or there’s a lot of different ways we sort of use it casually, and it’s got to stop. It’s a word too I should admit that after the birth of my son and his diagnoses, I’m pretty tolerant. I understand. Because I grew up using this word. I know people have to learn, I don’t want to be intolerant of people. And then I know they need to evolve, but I want to try to give people space is what I’m trying to say. But I will say this. When people say the R word, even if they’re just like, “Oh my God, this thing that happened to me at work today was so R.” It hurts my heart. And I think it’s something that has to stop. So let’s just talk about that one since it’s such a big one.
Emily Ladau (00:44:59):
I’m glad you brought that up because the R word is my deal breaker, and quite honestly, a deal breaker for most disabled people. That tends to be the one where I have the least amount of tolerance. Because it is just so incredibly upsetting and harmful. And you are directly using disability as a derogatory word. I mean, or using disability to be derogatory I should say. And that is such a harmful thing to perpetuate. But it happens all the time.
Emily Ladau (00:45:33):
And there have been many times where it has really stopped me in my tracks. I mean, I have some very good friends who have used the word. I had a friend who literally invited me to give a talk about disability for a class that she was teaching. And used the word, just it rolled out of her mouth in front of her students. And I was like, I did not know what to do with myself. I called her out gently about it. And I said, “Hey, especially if we’re talking about disability, that’s not a great word to use.”
Emily Ladau (00:46:11):
But I get very worked up over the R word because at this point, I think our collective consciousness really needs to shift away from thinking that it’s acceptable to use disability related terminology as an insult.
Brad Listi (00:46:27):
Right. And the word handicapped too is a word that you would prefer to see not used.
Emily Ladau (00:46:36):
Handicapped to me is not offensive. It’s not something that I am going to get upset if you use in the same way that I would if you used the R word for example. But what frustrates me about handicapped is that it just feels outdated. Some people prefer it. But for me, I am all about just saying the word disabled. Just say it. Just say what you mean.
Brad Listi (00:47:04):
Okay. Good to know. Good to know. I appreciate your patience because I want to go through words. Because I don’t think the conversation is going to change unless we have this conversation.
Emily Ladau (00:47:17):
Let’s have a conversation. I love talking about this. And I also give the caveat that if you use one of these words in your regular vocabulary, if you make a mistake, I’m not here to hold it against you or judge. I’m just here to kind of guide you in the direction of doing better. Because I am also a person who lives in a heavily trafficked place. And when I’m driving, I want to yell some words too.
Brad Listi (00:47:44):
Right. The ones like, I was going to get to this. But the word moron, imbecile, crazy. These are words that might slip out of my mouth when I’m driving in freeway traffic in Los Angeles. So it’s a relearning process. Ive got to find some better words to shout when somebody cuts me off or whatever, but it’s hard. And I think it’s hard for a lot of us, and that has to be acknowledged.
Brad Listi (00:48:15):
But you have to sort of understand the roots of these words and how a lot of them have a history in discrimination, which is what makes them ableist and which is what makes them offensive to people. Other words, like the one that was underscored to me actually by somebody on Twitter years ago is I called something lame on Twitter. And a person commented and they were like, “That’s an ableist thing to say.” And I’d never considered it if I’m being honest. It was such a common word in my youth. And growing up, it was just part of the fabric. And then I stopped and thought about it. And I was like, “Oh my God. Yeah. You’re using a word that describes somebody who has a disability as a pejorative label to describe like any old experience. You’ve kind of turned it into an insult.” That’s really the fundamental dynamic that’s at work when we’re talking about a lot of these words and their usages.
Emily Ladau (00:49:17):
And there are plenty of disabled people who actually could not care less about if you’re using terms like these. They would much rather you focus on things like actual access than changing your language. So I just want to clarify that not everybody is as attuned to these conversations about language. I know plenty of disabled people who say things like lame and crazy. But at the same time, there are a lot of people who experience immense amounts of pain when they hear these words, because they were leveraged against them simply because they’re disabled. They were used as derogatory because they’re disabled.
Emily Ladau (00:50:02):
So when you think about it from that context, if you’re a decent person who doesn’t want to hurt anyone, shifting your language seems like a small thing to do in order to prevent somebody else from bringing back up years of harm by having these words thrown at them. So I’m still in an unlearning process as well when it comes to avoiding these words and finding alternatives. But, I cannot stress enough the importance of at least thinking about how ableism slips into our everyday language, because you’ll realize how much it perpetuates our stigmatizing and negative thinking about disability as a whole.
Brad Listi (00:50:46):
Yeah. And I’ve said this before on the show many times and even recently. But as a person who is very concerned with language as I keep saying, and a guy who does a podcast that is similar, has similar concerns, it can never be said enough how powerful words are. How much power a single word can even have, and how much harm it can cause. And I know sometimes people might bristle at that or think it’s too intense. But all that has to happen is for the tables to be turned where you’re the person who’s wounded. Like you said, if you’re a decent person who doesn’t want to do harm and cause people pain, these are small changes to make. And yes, it’s a process. It’s not going to all happen at once. It’s frankly, a lot to learn and to consider.
Brad Listi (00:51:41):
Like you talk about these turns of phrase, like paralyzed by fear. Using it as a crutch. Talking about like as I did earlier in this conversation, when someone’s blind to something. The term fell on deaf ears. Even these turns of phrase, which are so normalized in our culture that they seem innocuous, you have to consider what about being a deaf person reading somebody, right, like fell on deaf ears. How does that feel to them to read that? It’s like these kinds of considerations that I think you’re trying to encourage people to make.
Emily Ladau (00:52:20):
Yeah. And people call me nitpicky for this all the time. I mean, truly there are people who tell me that I just need to shut up and stop talking about this, because they think that it’s only serving to further alienate people. But the reality is language is how we communicate. It shapes how we think, and how we think shapes how we talk. This is the point that I try to make early on in the book. So if we’re not literally breaking down how we’re engaging with other people and thinking about other people, then how can we even begin to shift the narrative in any other areas of life?
Brad Listi (00:52:59):
Yeah. And you talk too, I’m going to give some more phrases that are very common I think, especially in conversation, like, “Quit being so OCD. This person is acting super autistic.” Or saying, “She is so bipolar.” These are things I hear people talking. Or at least I have heard. I don’t know if I hear them super often, but again, it’s worth flagging them because it happened so fast and so often, and is kind of so normal that most people don’t realize the implications.
Emily Ladau (00:53:37):
Somebody’s diagnosis and somebody’s reality suddenly becomes somebody else’s really quick thoughtless turn of phrase. And we don’t really think about the weight of that very often. But if you leveraging a term like, “You’re acting autistic,” or, “You’re acting bipolar,” what if that person actually is autistic or bipolar? You’re literally insulting them for who they are. And you’re saying that it’s a bad thing that they are a certain way. You’re implying that acting a certain way, acting as a disabled person is in and of itself a bad thing.
Brad Listi (00:54:22):
And I think some people might respond and say, “It’s just a joke. I’m just joking with my friend.” And I get it. I have a pretty wide tolerance when it comes to humor and joking. But I think a good rule of thumb when it comes to humor is like the old phrase, don’t punch down, punch up. When people make jokes at the expense of people with disabilities, that’s what I would consider punching down. Is that an okay phrase? You know what I mean?
Emily Ladau (00:54:53):
Yeah. I think punching down. But I think we have to ask ourselves is it that we see disabled people as less than which would make it punching down? Or we see them as these delicate flowers in need of pity and protection? Or is it that it’s punching down because you’re denying someone’s humanity, you know? So I think it’s kind of a matter of thinking about why we’re avoiding jokes about disability or why we should be avoiding jokes about disability.
Emily Ladau (00:55:24):
But also, I a disabled person am the first one to make jokes about disability too. My own, not other people’s. But I want to be very clear that people who think that I’m being bitter, and humorless, and nitpicky about language just haven’t actually heard me in my day-to-day life when I’m letting the disabled jokes fly. So I have a sense of humor about my disability. I just don’t want to hurt anybody in the process.
Brad Listi (00:55:52):
Right. And yeah. I mean, I think there are ways that even a non-disabled person could tell a joke that involves disability that would be perfectly inbounds and funny. I think when I talk about punching up or punching down, there’s the issue of denying somebody’s humanity. I think it’s also about power imbalance. That’s really what I think I mean. If you’re constantly telling jokes that are trained on people who have traditionally been on the wrong end of the power balance, I don’t know.
Emily Ladau (00:56:30):
That makes a lot of sense to me, the way that you’re framing that. Yeah. Yeah. Because it’s absolutely about power dynamics. When you, a non-disabled person are making a joke about disability, and in many cases in a professional context might be profiting off of it, profiting off it. That is definitely punching down. Like one example that I talked about in the book is that there is a comedian who did a special where he used the R word in a joke. And the CEO of Netflix was like, “Oh, no big deal. He was just being a comedian.” Like no, that’s a big deal. You didn’t have to do that. You could have picked another word.
Brad Listi (00:57:09):
Right. Right. I think as a society, we have to get to the point where doing those kinds of jokes is just verboten, and just unfunny, you know what I’m saying? I don’t know. It just like be better. It’s such a grim approach. And it wounds a lot of people in the process. It’s needless.
Emily Ladau (00:57:39):
Yeah. And I hope people don’t think we’re being so didactic and prescriptive here. I hope that people really realize the power of language.
Brad Listi (00:57:47):
Yeah. Yeah. I mean again, as I read the book, it’s not the easiest stuff to confront. And I’m sure there’s some of that for people listening. Because you’re kind of going through all these words and the ways that you’d communicate. It initiates a process of change. And I think it’s like the discomfort that I feel is counterbalanced by the fact that actually, the changes really aren’t that huge. I think maybe what more of the discomfort is for me is the shame and the, “Oh God, I didn’t know all this time I’ve been walking through my life, saying all these things, and not realizing that I could have been hurting somebody.” So it’s a complicated emotional soup, but I think it’s necessary to ventilate this stuff, and to bring it out into the open, and let people reckon with it.
Emily Ladau (00:58:39):
And it’s funny because I’ve made the classic new author mistake of reading some reviews of my book. And I read one that said I was in no way radical enough. And that I wrote the book to sort of kowtow to non-disabled people and make them feel better about themselves. But the reality is that I tried to strike a balance between being firm, but gentle. Because if I’m immediately angry at you for saying these things or for making these mistakes, you’re not going to want to listen to what I have to say. And we’re going to get nowhere. If I’m firm, and I say, “This is not okay. Also, I don’t think you are an inherently bad person because you have done this. Let’s work on changing it together.” I think that’s how we’re going to make change.
Emily Ladau (00:59:31):
So yeah, there’s going to be some discomfort to sit with from this book. But my hope is not that you are so uncomfortable that you’re completely driven away from the conversation. My hope is that you’ll sit with that discomfort. And I mean the royal you will sit with that discomfort and realize, “Hey, there’s something I can do about this. I don’t have to be uncomfortable. And I can also make the world better and more comfortable for other people in the process.” And when you think about it that way, that’s how we’re going to begin to create change.
Brad Listi (01:00:05):
Yeah. And I should say for people listening, this is really a great primer. I think you kind of described it in similar terms earlier. It’s a great introduction for people like me. There’s a lot happening in the book, but you do a lot of great compression. It’s not a super long book. It’s a book that you can read in a sitting or two. You learn a lot. It gives you a lot to think about. You don’t feel hammered over the head, or scolded, or anything like that. If anything, it’s kind of a relief. It’s like okay, now I have some my bearings and I have my wits about me a little bit as I’m trying to navigate this stuff and learn how to make appropriate changes, and how to communicate with my child and my case. And I don’t know, it’s a necessary education that I think most people, especially non-disabled people could stand to engage with.
Emily Ladau (01:01:07):
And that was really my hope was to get out of this echo chamber. I think that a lot of time, activism happens in a vacuum where we’re not actually reaching the people who we need to be having the conversations with. So this is my overture, my olive branch, my way of saying, “Hey, I’m ready to talk to you about this.”
Brad Listi (01:01:26):
Right, right. So I’m not going to do all these, but I am going to do some of the bigger ones because I think it would be useful for listeners. But there’s kind of a section where you break down what to say and what not to say. So one of the ones you say, you say disability, disabled, person with a disability or disabled person. This is preferred.
Emily Ladau (01:01:54):
In the vast majority of cases, yes. So this is hard because this is where I get prescriptive in the book. And there are some people who will disagree with me. But most disabled people really do cringe at hearing euphemistic terminology like special needs, or differently abled, or physically or mentally challenged, or handicapable, right? We’re using all these as phrases to make ourselves feel better and to dance around actually saying the word disability, because we’ve been socialized to see disability as something that is bad, that is negative. As a dirty word, basically.
Emily Ladau (01:02:35):
So the most popular line I’m thinking right now among at least the disabled people that I engage with and learn from is that disability is not a dirty word. Say the word, and embrace the word. And recognize that for so many people, it covers a culture, a community, an identity. It’s not meant to be derogatory.
Emily Ladau (01:03:02):
There are people who prefer differently abled or special needs, and refer to themselves as such. And my job is not to tell those people not to make that personal choice. My job is to respect it. But more broadly if you’re talking about disability, it’s okay to say that.
Brad Listi (01:03:20):
And then another what to say versus what not to say. On the what to say side of the ledger, neurodivergent, person with autism or autistic person. Person with cognitive disability, a cognitively disabled person. A person with an intellectual disability, or an intellectually disabled person. Person with a learning disability or a learning disabled person. These are preferred terms in your view, versus things like mentally challenged, mentally handicapped, mentally retarded, slow, special ed. Those kinds of turns of phrase, not appreciated.
Emily Ladau (01:04:04):
Those can be really harmful labels to put on somebody. When you call somebody special ed. I mean, think about that. Think about how that would follow a student for the rest of their lives. Or that you say that somebody has a cognitive disability, a learning disability, an intellectual disability. It’s a reality. It’s part of who they are. And it’s something that we can support and accommodate.
Brad Listi (01:04:32):
Why is that so hard?
Emily Ladau (01:04:35):
I honestly think it’s because we have been taught that disability is something to look down upon. So no one has given this amount of thought in a lot of settings where we use this terminology to the harm that we’re causing. And I think that if we all slowed down a little bit in our communication and took some time to recognize that these are not just words, but these are words that impact people, then we’d be getting somewhere.
Brad Listi (01:05:07):
So another breakdown that I want to go through is with regard to a person who uses a wheelchair. That’s a preferred term or a wheelchair user, versus wheelchair bound or confined to a wheelchair. I’m sure you’ve had experience with this in your life.
Emily Ladau (01:05:28):
That’s my personal language pet peeve. And also, one that I did not add in the book, but one that I know some people use is wheelchair rider as well. Really, the point is that it’s the person who is in charge of the wheelchair, and not the wheelchair who is in charge of the person. So when we talk about being bound to a wheelchair or confined to a wheelchair, I’m envisioning somebody who has ropes and chains around them, and is tied up to their wheelchair, and is stuck there. That’s what wheelchair bound means to me.
Emily Ladau (01:06:01):
And my wheelchair is not confining. It’s literally my source of freedom and my source of mobility. I would be confined without my wheelchair. And in terms of assuming that I am confined to a wheelchair because I’m unable to walk, what’s actually confining to me is the inaccessibility of so many environments around me that don’t allow me to navigate with my wheelchair. But my wheelchair in and of itself is not something that is confining or binding me.
Brad Listi (01:06:29):
And then another one that struck me was accessible parking. I have to cop to the fact that my wife and I often say the handicapped placards that are hanging on our car, or handicapped parking. But accessible parking is just more contemporary and preferred. But what I also like about it is that it speaks to what it’s really about. I see people, non-disabled people parking in handicapped spots all the time now because of course I’m tuned into it. And it makes me crazy. Sorry, I shouldn’t say the word crazy. But it makes me upset.
Emily Ladau (01:07:18):
You’re honestly modeling for people alternative words that they can use. So I think this is great. This is live on air learning.
Brad Listi (01:07:26):
I’m trying, I’m trying. Bear with me, but I’m trying. And I go to this carwash where you go through the carwash, and then afterwards people will vacuum out their cars. And there’s a accessible parking spot. Almost always, there’s somebody parked there who is non-disabled vacuuming their car like it’s no big deal. I sometimes go to this carwash with my son and would love to have more room because I need to get him out and hold onto him while I’m trying to vacuum. I can’t do it.
Brad Listi (01:08:00):
And so far I haven’t been the guy to get out of the car and dress them down. But I kind of feel like I should. It’s just very frustrating. Just don’t park on accessible parking if you’re not disabled or caregiving for a disabled person. I can’t believe I even have to say that.
Emily Ladau (01:08:18):
Yeah, this one is a stressful one for me too. Because on the one hand, I try to not assume just by looking at someone that they don’t need a spot. But if you don’t have that placard or if you don’t have a license plate with this symbol on it, then I’m assuming you don’t need that spot. You know? I’m looking for visible proof not in the person, but in the placard or the license plate that they belong in that spot. And yeah, also. I mean honestly, I still say handicap parking and handicap restroom room all the time, because I’m used to saying that and it kind of rolls out of my mouth without me thinking about it. But you’re right that accessible really gets to the heart of what it is. It’s accessible. It is accessible to disabled people. The spot itself is not handicapped.
Brad Listi (01:09:09):
Right, right. So I want to talk. We talked a little bit about it earlier, but I think it’s worth underlining here is the issue of intersectionality and disabled people. You talked about being a white person who is disabled, and how that impacts your experience of the world. And then I was reading in your book about [Darcy Neal 01:09:38] who is Black, and queer, and has cerebral palsy. And there was an anecdote in your book about Darcy talking about how people commonly asked when he was shot. Right? Am I remembering that correctly?
Emily Ladau (01:09:57):
Yes. Yes. You are. People made an assumption just by looking at him that he must have become disabled because of violence.
Brad Listi (01:10:07):
Right. It’s worth recognizing that the disabled community is not a monolith, and there are a lot of people who exist at these intersections between a disabled person, a Black person, a queer person. There’s different combinations obviously. But all of these different [inaudible 01:10:37], is that the right word? They carry with them their own set of implications and identifications. And I think when it comes to issues like discrimination or barriers to finding a job for example, there might be a white person with a disability who comes up against a certain amount of resistance from employers just to use that as an example. But somebody who is Black and disabled would probably have, or could potentially have a more difficult time finding employment. Do you see what I’m saying?
Emily Ladau (01:11:21):
Absolutely. And I think that was a balance I tried to strike while writing the book is acknowledging that even though I am marginalized in that I’m disabled, I also come to this conversation with many layers of privilege. I’m a white woman. I am solidly middle class. I am heterosexual. I am cisgender, meaning that I identify as the gender that I was assigned at birth. I’m a female.
Emily Ladau (01:11:53):
So even though I am disabled, there is still so much about my experiences that are not the same as the experiences of other people who have different marginalized identities than my own, and who exist at the nexus of multiple marginalized identities.
Emily Ladau (01:12:21):
So that’s something that we really need to be mindful of when we’re talking about disability. There are people within the disability community who experience not just ableism, but racism. Not just ableism, but transphobia. Not just ableism, but xenophobia, right? Ableism doesn’t exist in a vacuum, and disabled people aren’t only one identity. So we have to take that into account when thinking about disability. Because as I said before, it’s the only identity that cuts across any and all other identities. That means that the disability community in and of itself holds every single other identity that there is to have. So if we’re just talking about the white male wheelchair user, we are missing so much of the disability experience.
Brad Listi (01:13:18):
And I want to ask you now about communication with disabled people. Non-disabled people talking to disabled people. How there can sometimes be discomfort, faux pas to put it mildly. And there’s a rule of thumb that you offer in the book, which I think is useful. And I’ll read it to you. It’s that if you would not ask a non-disabled person the same question in the same context, don’t ask. So I’d like to hear you talk a little bit more about that, because you’ve been on the receiving end of some pretty insensitive comments and questions in your life I’m sure. And you talk about some of them. There’s one that you describe I think where people on elevators will just blurt out, “Can you walk?” How are you supposed to answer that on an elevator?
Brad Listi (01:14:14):
But I think that people are socially awkward oftentimes just as a general thing. And then I know this from experience. The wanting, feeling emotionally activated and wanting to not discriminate, and wanting to engage. People can come at you I imagine with the best of intentions and still screw it up. So I think what I’d love to have is a conversation here around just some basic guidelines so that people can get more comfortable with how to communicate with disabled people and people who have possibly noticeable physical differences from them or that kind of thing.
Emily Ladau (01:14:55):
Talking about interacting with disabled people is always a challenge, because every disabled person is different. And the way that you interact with one disabled person may not be the same way that you interact with another one. But in terms of a rule of thumb, what I mean when I say don’t ask a disabled person something that you wouldn’t ask a non-disabled person in the same context really comes down to, what do you need to know? Are you being nosy, and are you being invasive? And are you trying to satiate your own curiosity? Or are you genuinely asking a question that has a reason behind you asking? And is that reason useful or helpful in any context?
Emily Ladau (01:15:42):
And I recognize that there are if I think hard enough about it, areas that fall outside of this rule of thumb. So that’s why it’s a general rule and not the answer for every single interaction with disabled people.
Emily Ladau (01:15:59):
But generally if you can keep your comment to yourself, if you can keep your invasive question to yourself, do it. And also I have a video that I collaborated on with Microsoft actually. They were doing a campaign called simple things count. So I did a disability etiquette type video about just acting naturally and being yourself when engaging with disabled people. So we can pop that in the show notes maybe just as sort of a supplement to this conversation if you’d like. But I think that the problem non-disabled people have run into the most is we tend to overthink how … I say we, I’m not non-disabled. But non-disabled people tend to overthink how to interact with disabled people. And a lot of it really just comes down to act natural. Act like you usually would. No need to go out of the way to act differently, but also no need to be weird.
Brad Listi (01:17:04):
And I would also say something that you mentioned in the book, which is talk directly to people with disabilities.
Emily Ladau (01:17:16):
Yes. Never, ever assume that a disabled person cannot in some way communicate about themselves and their needs. Communication may look different for different people, but that’s okay. That still doesn’t mean that we should talk over, or talk around, or not direct what we’re saying to an actual disabled person.
Brad Listi (01:17:41):
Yeah. There are little bits of etiquette about introducing yourself if you’re speaking to a blind person. Making sure you say your name, so they know who’s speaking to them. Just common courtesy. That’s something that could easily I think be overlooked, or not recognized by a non-disabled person. Or if you’re speaking to a person who’s deaf who has an interpreter, to look at the deaf person instead of looking at the interpreter when you’re talking. These are just little behaviors. Small behaviors that make a big difference.
Emily Ladau (01:18:20):
Yeah. And I think that it’s easy to get overwhelmed by matters of etiquette. But what it comes down to is think about it from your own perspective. If somebody had something to say to you, but they talked to somebody that you were with, wouldn’t you be bothered by that? If somebody wanted to ask you a question but they asked somebody that you were with, wouldn’t you be bothered by that? Or if somebody commented on your appearance unnecessarily, wouldn’t you be bothered by that?
Brad Listi (01:18:55):
Right. Right. Well, I don’t want to take up all of your afternoon. But I do want to close by talking, just closes, your book closes. We didn’t get to everything in it. People should read it. But I think for the purposes of this conversation, it’s great to end by talking about allyship. How to be an ally, how to be an accomplice. I want people listening to have some sense of how to take action. Useful action, and how to make sure to align with disabled people and help to, not to sound ridiculous, but to create a better world. So you just talk a little bit about how non-disabled people can think about being an ally and being an accomplice?
Emily Ladau (01:19:53):
Yeah. I don’t think that sounds ridiculous at all. I mean, maybe it’s a little bit rose colored glasses of me, but I do believe that we can create a better world by being more mindful and by being allies to one another. And in terms of allyship, the most important thing that I want to remind people of is that allyship is an action. It’s a verb. It is something that you do. It is not something that you can just bestow upon yourself as a title. If you held the door for a disabled person, or if you corrected and ableist term that you use, that doesn’t really mean that you get a gold ally star that day. And it doesn’t really mean you get to say, “I was a good ally today. And I’m done for the year now. I did allyship. I’m done.” And I think that people fall into that trap too much.
Emily Ladau (01:20:48):
Allyship is an ongoing and evolving learning process. And some of the best ways that you can be an ally to disabled people is quite simply by knowing when it is your turn to step back and listen. When it is your turn to amplify disabled people who are speaking out, speaking up, and doing the work. And knowing when to pay disabled people for their work, knowing when to recognize that you are asking of labor for disabled people.
Emily Ladau (01:21:22):
And also, recognizing how you can play a role in bringing disabled people to the table. I think that we feel so often, and this goes for everybody, that allyship can be an incredibly overwhelming process and not something that is easy. So therefore, we shy away from it. But sometimes, it really looks like taking a look at the table, figurative or literal and saying, “Who’s missing from this table? Why are they missing from this table? Is the table not accessible? Do we need to build a ramp to the table? Do we need captioning for the conversation at the table?”
Emily Ladau (01:22:00):
And I say this a little bit in jest, but it’s also true. What can you do to bring the right people to the table? And then the next question is always, “Well, how do I know who the right people are?” Well, sometimes it’s just a matter of recognizing that we exist in our own little bubbles and we’re not looking outside ourselves. But the further reading and resources section at the back of my book is one starting point for beginning to acquaint yourself with multiple disability perspectives. Not all disability perspectives, but certainly enough that you will begin to recognize ways that you can really meaningfully incorporate disability, and a consciousness of disability, and accessibility, and inclusivity into your daily practices.
Brad Listi (01:22:50):
Well, that feels like a great place to end. I have so enjoyed this conversation. You’re suburb guest, and I appreciate your book and the work that you do. It has certainly helped me out. And I’m just getting started really. I’ve got a lot to learn. And like you say, it’s an evolving thing. I feel like I’m going to be learning about this for the rest of my days, but I’m often running. And just appreciate the conversation and wish you well.
Emily Ladau (01:23:20):
Thank you. I’ve loved being here, and I’m also so grateful that you were willing to engage so openly and thoughtfully, and also to share of yourself your personal connection to this. Because I don’t think we recognize that statistically speaking, there is a pretty good chance that this podcast is relevant to everybody in some way.
Brad Listi (01:23:42):
Awesome. Well, it’s great to meet you. Thank you so much once again.
Emily Ladau (01:23:46):
Thank you for having me.