What’s Up WID: Demystifying Disability

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Ashley Inkumsah:
Hello, everyone. And welcome, or welcome back to What’s Up WID the World Institute on Disability podcast, where we discuss what’s up in the disability community across the globe. If you’re new here, my name is Ashley Inkumsah and I am your host. Now on today’s episode, it is my pleasure to share with you a thought provoking conversation that I had with the one and only Emily Ladau. If you’re not familiar with Emily, she is a disability rights activist. She’s an author and a digital communications consultant, and she has a brand new book entitled Demystifying Disability: what to know what to say and how to be an ally. And we chatted a little bit about what it means to demystify disability and what the role of allies is within disability activism. It was an absolutely incredible, incredible conversation, and I hope that you enjoy it.

Ashley Inkumsah:
Thank you so much for joining me today, Emily, to have this conversation about how to be an ally to the disability community and your new book, Demystifying Disability. My first question for all of our guests is always, how are you doing today?

Emily Ladau:
That is a fun question to start out with. I feel like we always jump right into the conversation and we don’t get a minute to take a deep breath and check in. But yeah, I’m good today. It’s a Monday when we’re recording this, but I’m feeling pretty energized.

Ashley Inkumsah:
Same here. I think there’s something in the air. I don’t know. I just feel energized despite the fact that it’s a Monday. I normally don’t feel this way, but yeah, I think I’m just excited to talk to you really.

Emily Ladau:
Oh, I can’t wait for this conversation. I think it’s going to be great.

Ashley Inkumsah:
Yeah. It’s an important one to have for sure. So our audience can get to know you a little bit better. Can you please share a little bit about your background and how you got involved in the disability inclusion space?

Emily Ladau:
Sure. Thing. So I was born with a physical disability called Larson Syndrome. So it’s a genetic joint and muscle disorder and I’m a wheelchair user. My mom has the same disability that I do and my uncle, her younger brother has it as well. And so disability has always been a part of my life. But when I was 10 years old, I had the opportunity to actually appear on multiple episodes of Sesame Street to talk about my experiences as a kid with a physical disability. And that, in hindsight, really was what sparked for me this passion to educate others about disability. And so, since that time in my life at age 10, I’ve been gradually developing and refining my voice for advocacy and doing so while also continuing to learn from and connect with so many incredible people within the disability communities. So it’s been a journey to get to where I am today and I’m still constantly learning.

Ashley Inkumsah:
Yeah, Sesame Street. That’s an amazing start. I remember as a kid, my mom had to pry me out of the house. I was obsessed with that show, oh my God, Elmo was… I had a doll of him and everything. Really a cultural, beyond everything, a cultural phenomenon and really educational in the way that they tackle issues in such a way to teach children, because that’s when we need to start learning about these things. So really amazing that that’s where you got to get your start.

Emily Ladau:
Yeah. And I think there’s room for improvement in all areas of representation. And there’s certainly communities that could be better represented on Sesame Street. But at the time I think that what they were doing was pretty powerful because they gave me the opportunity to help shape the story around what I wanted people to know about disability, even at age 10. And so while there’s always gaps in representation, I’m also a big believer that every little bit of progress is incredibly important. And so to have had even the tiniest role in that progress is something that I don’t take for granted.

Ashley Inkumsah:
Absolutely. Yeah. You shouldn’t. Yeah, for sure. So your new book, Demystifying Disability lays out what to know what to say and how to be an ally. Can you tell us, what does the phrase demystifying disability mean to you?

Emily Ladau:
That’s such a great question because I want to be very clear that I do not mean demystifying every single disability, every single part of the disability experience. I mean, demystifying some parts of what it means to be disabled. And obviously a catchy book title would not be “demystifying some disabilities, but not all disabilities.” So we went with Demystifying Disability because it’s a catchy title. But in reality, what it means to me is that I’m offering people a starting point. This is not the definitive guide on disability. This is not the encyclopedia of disabilities. It is not the Bible of disabilities. I am not in any way, shape, or form saying that I am the expert on all disabilities. What I’m saying is that I want to start a conversation. And I think so often people really are mystified by disability. They’re confused about how to talk about it.

Emily Ladau:
They’re afraid of it because they don’t understand it. They’re not really sure how to engage in basic conversation around disability or with disabled people. And so if I can offer an entry point into the conversation around disability then to that’s what demystifying looks like. I’m one person, it’s one book. I would never claim to speak for everyone. And I would never claim to be an expert on any experiences other than my own. But if I can give one person the tools that they need to begin the conversation and feel a little less alienated or confused by disability, then I feel like that’s what demystifying disability really means to me.

Ashley Inkumsah:
I’m curious. Why do you think that disability gets mystified in the first place? What do you think is the root cause of that mystification of disability?

Emily Ladau:
We live in a world where we’re socialized to be ableists and we’re socialized to look at disability as shameful and as negative. And so my goal has always been to flip that script and to say, disability is not shameful. Disability is just part of being a person. It’s a very natural human experience. And when we look at it in this stigmatizing, shameful way, we’re automatically rejecting 1.3 billion people out of hand, simply because we’ve decided that being disabled is a bad thing. And so if we can really get to the root of some of those taboos, if we can understand where they come from, that the media perpetuates them, that they’re built into systems, that they’re integrated into our language and how we think suddenly we begin to realize, of course, disability is still taboo, because we’re not really meaningfully, including disabled people. We haven’t even reached the point of inclusion, let alone celebration, let alone embracing and acceptance. Right? So there’s many steps to take in this process, but I actually feel like little by little one mind at a time we’re getting there.

Ashley Inkumsah:
Yeah. And I think a lot of the ableism is actually even, I like to give grace to people because it’s born, as you said, we’re socialized to be ableist in our society. And a lot of people don’t even know that they’re exhibiting ableist behavior. I mean, even sometimes when I’m typing out the word ableist or ableism, it’ll underline. So not even the dictionary, even recognizing that it’s even a thing. Right? So how do we even start to dismantle it when we’re not even having those conversations? So how do you think that people can begin to unlearn the ableism that is so pervasive in society?

Emily Ladau:
I really appreciate talking about this because you’re absolutely right. We are asking, as disabled people, for ableism to be dismantled, but how can we ask for something to change when there’s not yet an understanding of what it even means? We hear so often these conversations about types of discrimination and ableism is often left off the list, despite the fact that ableism is so deeply intertwined with other forms of discrimination and often has a significantly bigger impact on already marginalized communities. And so I think in order to unlearn ableism, we have to first understand that in many respects, it’s not really our fault that we are ableist. You have to take responsibility for your ableism. Absolutely. But what you said about giving grace is so true because a lot of people just are not aware of the ableist attitudes that surround us and that are so integrated into everything that we do.

Emily Ladau:
So I’m calling on people to first start to understand what ableism even is, how does it show up in language? How does it show up in media? How does it show up in how we interact with other disabled people? And also if you make a mistake, if you mess up, if you do something ableist, I believe you can come back from that. It’s not like suddenly you are forbidden from ever interacting with another disabled person. Right? I mean, that’s not to say that we don’t need to own our mistakes, but it is to say that if we don’t give people the space to learn from their mistakes and to learn from what ableism looks like, then how are we ever going to move past ableism? So I think it’s really a matter of first digging deep into an understanding of what ableism looks like, how it shows up, how we perpetuate it and then unlearning it a little bit every day from there. Not to mention, I’m disabled and I can be ableist too.

Ashley Inkumsah:
Absolutely.

Emily Ladau:
I mean, just because you’re disabled doesn’t mean that you’re not ableist. I think we also need to acknowledge that. So there’s many layers to the conversation about ableism.

Ashley Inkumsah:
Yeah. Yeah. And you mentioned that interconnectedness, so many of us within the social justice space are fighting for, seemingly on the surface, different and issues, race issues, women’s rights, LGBTQ rights. But it’s really interesting to find that most of these issues were born out of the same kind of root cause. And when you start to dismantle one, you’ll find that you’re dismantling the other as well. So I think that we need to work together within the social justice movement to be inclusive of all of the intersectional identities, because yeah. One system, it all empowers each other. So I think that’s yeah…

Emily Ladau:
A hundred percent. I find it so frustrating sometimes when people say that they advocate for one cause, but not for another, because we are all, and I don’t mean this in like a let’s hold hands kind of way, I literally mean we are all interconnected and if you’re fighting against ableism and you’re not also acknowledging the ways in which racism or transphobia or xenophobia for just some examples are so deeply intertwined with ableism, you’re not really fighting ableism. You’re fighting part of the problem. You’re not going to get to the solution if you’re not looking at the whole picture.

Ashley Inkumsah:
Absolutely. And why do you think that allyship is so important for people with disabilities to be able to achieve liberation? Why is allyship a key part of that?

Emily Ladau:
Allyship is such a complex topic. And I, despite the fact that it’s literally in the title of my book, struggle with that word, and I know that many other people do as well. And I know that often people try to use the term accomplice or co-conspirator instead, but really the problem with allyship is that we tend to call ourselves good allies. We tend to say, “Oh, I was a good ally today,” but it’s really not about that. It’s not about giving yourself that name. It’s about taking action and recognizing that allyship is very much a verb. And so allyship is a practice, and for disabled people, I think there’s so often this misunderstanding about allyship that we don’t need to be good allies because we are marginalized, right? But that’s not true. And from within the community, we need to be looking at how we can be allies to other people in the community who experiences are different than our own.

Emily Ladau:
And so for me, as a white physically disabled woman, my job is not to be the sole authority on disability because I absolutely cannot speak to what it is like for someone who, for example, is black and cognitively disabled, who is Asian-American and transgender and has a chronic illness, right? I’m just, I’m coming up with examples because disability cuts across any and all other identities. And we can’t forget that. And so I come to this conversation recognizing that I’m both marginalized and privileged.

Ashley Inkumsah:
Yeah.

Emily Ladau:
And I can do my job to be an ally, to other people within my own community, just because I’m disabled, doesn’t mean that I’m not also responsible for being the best ally that I can be to other people who are part of my community.

Ashley Inkumsah:
Yeah. I love what you said. I being able to identify that you can be marginalized and privileged. And I think the word privilege, it’s a really reactionary word. A lot of people, I think resist be being an ally because they don’t want to recognize the privilege within themselves, but not realizing that privilege is not something that you can control. You can’t control who you are and what you’re born into. But yeah, definitely. I think allyship starts at being introspective and recognizing, okay, that you do have some degree of privilege and how are you going to leverage that and use that for good. I think that’s where it starts for sure.

Emily Ladau:
Yeah. I’m really glad that you pointed out that you can’t control privilege because I think that sometimes there’s this misunderstanding that we can just sort of shake off privilege and only focus on the ways in which we’re marginalized or those experiences that we have. But I know that I can’t change my privilege. I do know that I can use my privilege effectively to be a better ally. And so there’s a lot of layers to this conversation, but it’s really important to me to be actively thinking about how I can continue to improve my allyship. Even with this book coming out, there are ways that I can do better, and I never ever want to stop learning and doing better.

Ashley Inkumsah:
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Ashley Inkumsah:
How do you think that an ally can… Because sometimes allies take up too much space. When and how can they pass the microphone? When do they know that it’s the appropriate time to pass the microphone to someone with lived experiences? So how can an ally simultaneously advocate for people with disabilities, but also allow them to tell their own stories?

Emily Ladau:
I’m a big fan of passing the microphone and it’s a delicate balance because when you have a platform and you have an audience and you’re using it to educate, you can also use it to amplify. And I think that’s the part that a lot of people forget, is that education is one thing, but bringing other people into the conversation and asking yourself where there are gaps is key. And I know that there’s still more work that I need to do, to ask myself, where are the gaps in what I’m sharing? Where are the gaps in what I’m amplifying? How can I continue to fill those gaps in my work as I move forward?

Emily Ladau:
And so passing the mic to me looks like being introspective and saying, “Hey, maybe I’m missing something here because this is not my lived experience. So it’s not coming to mind. Rather than speaking on what, I don’t know, let me hand that mic to somebody else.” And not only do you hand the mic to the person, but maybe you help that person hold the mic, whether literally or figuratively, maybe you help that person hold the microphone. So that can say what they need to say and people will listen. And it’s hard sometimes to know when to take that step back and decenter yourself. And I acknowledge that because I’ve been there too. But I also think the best thing you can do is your platform to continue to amplify. Amplify, amplify, amplify.

Ashley Inkumsah:
And shifting back to your book, I’m curious to know what inspired you to write this book?

Emily Ladau:
To be quite honest, this was not the book that I originally intended to write. I was very luck to be working with an agent and I thought I would write a book relaying my experiences being the disabled daughter of a disabled mother. And then my agent came back to me and said, “Hey, what about a book that starts conversations about disability?” And I felt like, why not take on that challenge? It’s a huge challenge. And it’s not one that I’ve taken on perfectly. I’m not going to get everything right, because again, I’m one person and it’s one book. But I think that if I can spark conversation through this book, that is my end goal. And that was really what inspired me the whole way through, is thinking about how people were going to have conversations and hopefully want to dive in and learn more about disability after reading this one book.

Ashley Inkumsah:
And what kinds of conversations do you want people to be having? And what’s the key takeaways that you want people to have once they’ve read your book?

Emily Ladau:
First and foremost, I want people to have conversations with themselves. I want people to really ask themselves how they feel about disability, how they think about disability, how they understand disability. And this goes for whether or not you identify as disabled. I want people to take some time to think through what disability means to them. And then I want people to take some time to think through how they engage when it comes to disability. What language are you using? What words should be eliminated from your vocabulary? How are you interacting with other disabled people? That doesn’t mean that you need to overthink that, that’s not what I’m looking for, but are you interacting with people mindfully? Are you recognizing the humanity of disability? Are you watching media that uplifts disability, or are you sharing that inspiring article that got you to break out the Kleenex? Right?

Emily Ladau:
So little things I’m asking people to be mindful of when it comes to disability. Have those conversations first with yourself and then start having them with other people. Did you hear someone say something ableist? Can you call it out? Do you feel comfortable? Did you notice that disabled people were not included in the planning of an event? How can you ensure disabled people are brought to the table so the event is made accessible? right? So it’s really a two part process of your own understanding and then applying that a real world situation.

Ashley Inkumsah:
Yeah. And I think of another barrier when it comes to allyship is I find that sometimes people have a hard time caring about causes that are not their own lived experiences. Right? For some people, even though disability intersects everyone’s life, honestly, for some people, I feel like there is a resistance to be an ally because they’re not having those same lived experiences. So do you have any advice for those people who might have those barriers of having trouble relating to what it really is to live with a disability? How can they get over that barrier within themselves? Because like you said, the first thing is to look within yourself and how could they get over that part of it?

Emily Ladau:
I think there’s a fear of the unknown. And for so many people, disability is unknown, despite how common it actually is. And statistically speaking, you or someone you know definitely is disabled, but because of that taboo surrounding it there’s a fear. And so we don’t want to think about what reality could look like if we were to become disabled tomorrow. But I like to remind people, as do many disability advocates, that the disability community is one that you could join at any time. And so that’s not meant to be threatening. It’s rather a call to action.

Emily Ladau:
If anybody can become part of this community, if your loved ones already are a part of this community, why would you not want to actively contribute to making the world a better, more accessible place so that you tomorrow, who may become disabled can benefit from that? If for purely selfish reasons, why do you not want to create a world that would work better for you? But more to the point, why would you not want to create a world that works better for everybody? Nothing about creating a more accessible inclusive world is going to make it worse. It’s only going to make it better for everybody. And so I ask people to look at it from that perspective. It’s not like you’re just making the world better for some people, if you start caring about disability, you’re literally going to improve things for everybody.

Ashley Inkumsah:
Yep. I think about curb cuts and how that helps people, delivery people using dollies and, and women with strollers and things like that, that close captioning, open captioning, how that benefits people, everyone around the world and not just even people with disabilities. So yeah, life gets better. I think of what we’re doing right now, having a online conference conversation, how that benefits people with disabilities as well. And if anything that we’ve taken away from the last, what has it been, 18 months of being in COVID is that, yeah. When you make things accessible, everyone wins.

Emily Ladau:
I love that you brought up curb cuts, and I think you were pointing to curb cut effect, which basically means that not everybody can get up a curb, but curb cuts will work for pretty much everybody. Right? Whether it’s someone pushing a stroller, somebody on roller skates, somebody wheeling luggage, whatever the case may be, pushing a laundry cart. Right? Let’s make more curb cuts. Let’s make virtual curb cuts. Let’s make real curb cuts. Let’s just create more curb cuts for people so that everybody can use them. It’s a benefit to everyone. Why wouldn’t we do it?

Ashley Inkumsah:
Exactly. Yeah. And what, what advice would you give to businesses and corporations? Because I think that’s where it starts, in terms of our infrastructure and all of that, what advice would you give to them? Why is disability inclusion so important? Why should that be a priority to businesses, do you think? And corporations and the government.

Emily Ladau:
On the one hand, I want to make the business case for it. Right? And I want to say quite obviously, disabled people make up such a huge part of the population, even though we’re a minority that it’s simply good business to be more inclusive and accessible. But I think beyond that, if we really focus on a culture shift, what we’re doing is improving our products, our services, our business practices, our end game for everybody.

Emily Ladau:
It’s kind of like what we were just talking about. If we are thinking about how we can make our business practices more accessible, if we are thinking how we can make things more usable. If we’re looking at a more inclusive culture, businesses are only going to benefit from that. The government is only going to benefit from that. Because you have an incredible diversity of views, of opinions, of experiences. You have people who are adaptable, unfortunately often because the world forces us to be adaptable, because it’s so inaccessible. But you have people who are creative, who are innovative, who come to the table with ideas and perspectives that someone who’s non-disabled wouldn’t have even thought of that can immediately make your product, your service, your practice, your policy, better for everyone.

Ashley Inkumsah:
Absolutely. Yep. Couldn’t have said it better myself. There is 1.3 billion people who are disabled globally. So that’s a huge market share. So where can people purchase your book?

Emily Ladau:
Great question. So Demystifying Disability is available pretty much wherever books are sold. I really encourage people to seek out a copy at their local bookshop if they can, because I want very much to support local businesses through the sale of the book. There’s also an audio book version available for people who are seeking to read it that way. And there’s an ebook for version available as well. And I’ve also just put on my website a plain language translation of the book to make it more accessible for people with a range of sensory and cognitive and processing disabilities.

Ashley Inkumsah:
That’s wonderful. Well, I can’t wait to read it. I’m definitely going to be purchasing my copy as soon as we’re done having this conversation and I’ve had so much fun, it’s been such a pleasure talking to you. It really has been great.

Emily Ladau:
Likewise, Ashley you’ve asked some of the most insightful questions and really pushed me to think more about even just the title and the frame of the book. So I’ve loved this conversation and I’m just really excited to see what other conversations it continues to spark. I genuinely think that you’ve covered everything. If there’s one thing that I could reiterate it’s that Demystifying Disability is again written through my own lens. And I very much acknowledge the privilege from which I come and the space that I occupy. And I hope that it will not at all be the only book that people read about disability. I hope that you’ll continue to seek out more resources that you’ll keep learning, keep going and remember that there are 1.3 billion at least disability experiences out there. So we’ve all got a lot of learning left to do.

Ashley Inkumsah:
Yep. I think, yeah, definitely reading your book is a first step, but obviously it’s not a linear path. It’s not just like, you’re going to read the book and that’s the panacea for all the ableism. No, I want everyone out there to purchase your book and then do actionable things within your community. That is espoused in the book. So I’m really excited to read it. So yeah, it’s been such a pleasure chatting with you.

Emily Ladau:
Thank you. You. Yes, it’s been so wonderful.

Ashley Inkumsah:
I want to thank Emily for having such an awesome conversation with me about allyship and the intersections of disability and how her book helps to provide actionable steps to help make the world a more accessible and inclusive place. I hope that you all are able to grab a copy of her book and I want to thank Emily again for that fantastic conversation. And I want to thank you at home for tuning into today’s episode, and you can find transcripts and American Sign Language interpretations as always for today’s episode and all of our past episodes on our website at http://www.wid.org/whats-up-WID. And if you enjoy today’s episode, be sure to share it with someone else that you think will enjoy it too. Now it’s about that time for our famous last words here on What’s Up WID, to paraphrase one of our founders, Ed Roberts, we need to get out there and change the old attitudes so we can build forward better. Thank you so, so much once again, and I look forward to talking to you next time.

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