How to Be an Ally to Disabled People with Emily Ladau ~ 903

Tim Villegas:
Emily Ladau, author of the book Demystifying Disability, wants you to know the most important way to be an ally to disabled people.

Emily Ladau:
I think the most important thing to understand is that ally is not a title that we can just bestow upon ourselves. Allyship is very much an action. Ally is a verb. It’s not a noun despite what actual grammar rules may tell you. To me, it’s all about the actions that you take. And it’s not about taking actions and then looking for a pat on the back for taking those actions. It’s about incorporating them into everything you do in your daily life.

Tim Villegas:
And she isn’t afraid to call out ableist language, even from yours truly.

Tim Villegas:
Thank you for that. My dog is barking. I’m going to let her into my room so she will stop. Can you hold on a second? Okay. Sorry about that.

Emily Ladau:
No worries. Although I would make sure—I don’t know if you edit sections of this out—but you said “my dog is going crazy.” I do the same thing all the time, so don’t even worry about it.

Tim Villegas:
Hey, y’all. My name is Tim Villegas and you’re listening to the Think Inclusive podcast presented by MCIE. This podcast exists to build bridges between families, educators, and disability rights advocates to create a shared understanding of inclusive education and what inclusion looks like in the real world. To find out more about who we are and what we do, check us out at thinkinclusive.us or on the socials: Facebook, Instagram, and Twitter. Also, take our podcast listener survey. Your responses will help us develop a better podcast experience. Go to bit.ly/TIPodcastSurvey to submit your responses. We appreciate it.

Tim Villegas:
Today on the podcast we interview Emily Ladau, disability rights activist and author, about her new book Demystifying Disability: What to Know, What to Say and How to Be an Ally. We discuss why this book needed to be written, if there’s only one model of disability that is valid, and we even play a little game called, “Is it ableist?” We are so glad you’re listening. And now our interview with Emily Ladau.

Tim Villegas:
Okay. So today on the podcast, we’d like to welcome Emily Ladau, who is an internationally known disability rights activist, writer, and speaker. She’s the editor-in-chief of the Rooted in Rights blog. She also co-hosts the Accessible Stall, a podcast about disability issues. And she’s the author of the new book, Demystifying Disability: What to Know, What to Say, How to Be an Ally. Welcome to the podcast, Emily Ladau.

Emily Ladau:
Thank you for having me, Tim. I’m excited to be here.

Tim Villegas:
So why don’t we start off by asking why was it important for you to write Demystifying Disability?

Emily Ladau:
I think that’s a great place to start because we have to have a starting point when it comes to disability. What happens to so many people is they find themselves feeling unsure of some of the basics of disabilities. So, how do I talk about disability? How do I think about disability? What is a disability? Do I have a disability? Does somebody that I know have a disability? And when we start to ask all of these questions, we tend to get tripped up around even beginning to have thoughtful and nuanced conversations.

For me, writing Demystifying Disability was an opportunity to put some answers to some of the more basic, but yet complicated questions. Basic in the sense that these are the introductory pieces of information that we need, but complicated in that disability is this very big, broad topic. I wanted to give people a primer, a starting point, a place to get their questions answered without feeling like they would be embarrassed if they got something wrong or they would offend someone.

This is a safe place for people to go to get those initial questions answered. My hope is that by using that as a starting point, they can keep it on their shelf, take it out whenever they need a reference guide to something about disability. Then they can use that to continue to have more in-depth conversations about disability. I don’t consider myself to be the expert. I consider myself one disabled person who is offering people a place to begin. And I also should clarify, it’s not a textbook. It’s meant to be very friendly, just a place to have a conversation, not a place to feel like you’re going to have a pop quiz at the end.

Tim Villegas:
Do you imagine that this would be useful for educators as well as just the person on the street trying to figure out disability?

Emily Ladau:
I think that this book could have a really wide audience. I know that they say, when you write a book, you’re supposed to pick a very specific audience that you’re writing for. But we have to recognize that disability is part of the lives of 1 billion plus people around the world. Statistically speaking, either you or someone you know has a disability. So this book is relevant to you, no matter what field you work in.

Especially in education, there’s such a need to have open, honest dialogue around disability. When I think back to college, I was originally planning on being a high school English teacher. A lot of the conversations that we had about disability in college felt very rigid and uninformed. It was all just such a focus on special education and this sense that disabled people are special and need to be treated differently. It was really hard for me as someone who’s disabled to sit in a classroom and hear people talk about me and people who have disabilities like me and feel like I was somehow the other and not like I belonged to that conversation.

My hope is that this book will give educators a place to develop some concepts and language around disability that are going to ultimately help them make students feel more included in the classroom.

Tim Villegas:
Typically, when someone talks about privilege, they’re talking about race. But I want you to unpack that for us. As you talk about your own privilege, what do you mean by that? And can you explain that to our listeners?

Emily Ladau:
I think I started alluding to this before, but I’m only one disabled person. I like to remind people that if you’ve met one person with a disability, then you’ve met one person with a disability. That doesn’t mean that person’s experience is the same as any other disabled person’s experience.

For me, I wanted to be very careful to acknowledge while I was writing the book that I am coming at disability from the perspective of someone who is white, who is female, who has a physical disability. I’m a wheelchair user. So I have a very specific experience of disability. That means I’m the expert only on that experience. I can’t speak out of turn for anybody else who has a disability, because I don’t know what it’s like to live in their body, in their mind, to have their specific disability experience.

When we talk about the way that different forms of stigma and discrimination intersect, we have to recognize that my experiences are going to be different than someone who is, for example, a Black person with a disability, simply because I don’t also experience race-based discrimination. I really want people to be mindful of the fact that disability is the only identity that can cut across any and all other identities. That means the depth and breadth of the disability experience is so incredibly vast that there is no way I can encompass it in one book. There’s no way that any one person can encompass the full disability experience.

If I didn’t acknowledge my privilege, I would be doing a great disservice to the disability community because people would come to assume that my experience is what everyone experiences. But that’s not true. I’m lucky to have access to a lot of the resources that I need. I’m lucky to have a very strong support system. These are privileges that not everybody with a disability has. So as people are reading the book, as people are thinking and talking about disability, I encourage them to remember that there are multiple intersections and connections between different identities. While yes, I am a marginalized person, I still come to this experience with a lot of privilege.

Tim Villegas:
Now I wasn’t aware of all of the models of disability that you listed in the book. Typically, especially in education, we talk about the medical versus the social model. You outlined a few more. Can you tell us a little bit more about those and where they come from?

Emily Ladau:
Absolutely. In the book, I talk about other models including the charity model, the cultural model, the economic model, human rights model, and religious model. Again, there’s not a quiz at the end here. But the reason I listed them is because I think it’s important to recognize that there are so many ways we can think about disability. Even among the models I listed, I did not include all of them. There are other ways to think about disability. That’s really what models mean—just a framework for thinking about and talking about disability.

Some of the ones I listed help us when we look beyond the social model and the medical model. The social model assumes disability is an external problem, and that a person is only disabled because of the barriers and attitudes and the society we live in. The medical model assumes disability is an internal problem within the person. Emphasis on problem, meaning we often talk about it as something that needs to be fixed or cured.

I, and many other disability advocates, feel that neither of those models is really accurate. The reality is that my disability is a medical issue. I’m still disabled. I’m still a wheelchair user, regardless of your attitudes and regardless of whether there are stairs or a ramp. I’m still a wheelchair user. But you can make things accessible to me by putting in a ramp instead of stairs.

So I tend to look at both models as kind of working together—the medical and social models. But even those models don’t encompass all the ways we can think about disability. Sometimes we think about disability in terms of people needing charity or pity. Sometimes we think about it as a cultural identity with a rich and robust history. Sometimes we think about disability from an economic perspective, which means we devalue people who are not able to be productive in this capitalist society because of their disability. When in fact, it’s often places of employment that are creating those barriers to productivity for disabled people.

For human rights, we look at disability from a broader human rights framework where the mistreatment of disabled people is very much a human rights issue. And then the religious model, which looks at disability as either a blessing or a curse.

When you process all of these frameworks, you realize there is no one right way to think about disability. We have to look at it very holistically because it connects with every other part of our lives and our thinking.

Tim Villegas:
There’s a story in the book that I think is so poignant—where someone went and prayed for you.

Emily Ladau:
Yeah. That story really sticks with me, and I’m glad I had the opportunity to talk about it in the book. I was at a hotel, heading off to a job interview, feeling really pumped and ready to go. Then all of a sudden, this little girl starts praying over me for my healing. I’ve had this happen to me multiple times.

A story I didn’t tell in the book is that I used to date a guy who was also a wheelchair user. The two of us were out with his sister, who did not have a physical disability. I think we were going to Applebee’s or something. Someone came up to us and handed us a pamphlet for her church and asked if we had let God into our hearts. Because if we did, and if we came to her healing service that night, we would be able to walk again. I didn’t know what to say. My boyfriend’s sister said, “Oh, we’ll think about it, thanks.”

What do you say in that moment when somebody looks at you and thinks your body is wrong, your body is a mistake? When we have that mentality, how do we possibly accept disabled people and include disabled people like we would anybody else?

Tim Villegas:
Let’s talk about sheltered workshops because it’s something you bring into the book. Anytime I look at this issue, I always see a lot of parallels between people who want a safe space for their child or adult children with disabilities and people who want safe classrooms. Do you think the arguments for sheltered workshops and segregated classrooms are really the same?

Emily Ladau:
This is such a good question, and I’m glad to be able to draw parallels between the two. I think there’s absolutely a cycle we have to talk about when we’re talking about segregated settings. If you start a child out in a segregated setting, are you really setting them up to be in an integrated setting moving forward?

Assuming a child follows the trajectory that many people follow—though this is certainly not the only trajectory—where they go from a classroom to a job, if you’re creating segregated settings the whole way through, you’re denying them the opportunity to learn, grow, and be among different types of people.

When we talk about segregated settings being safe, my question is always: safe for who? Is it safe for the individual who’s disabled, or is it safe for—“safe” in air quotes—the students who are non-disabled and whose parents want them somehow protected and sheltered from disabled students?

Emily Ladau:
In terms of segregated classrooms, I struggle a lot. I understand that many disabled students benefit from specialized instruction in certain areas, from extra support in learning certain subjects. So the question becomes: do we create a classroom environment where we only give students opportunities to have that support if they’re disabled, or do we create more supportive learning environments for everyone that allow everyone to learn in the ways that work for them?

Instead of putting disabled kids in one classroom and non-disabled kids in another, what if we recognized that everybody learns differently and mixed these learning modalities to create a much more robust classroom experience for everybody? That’s the dream classroom for me—because we’re including everyone and recognizing that everybody learns differently.

It’s much the same for sheltered workshops. We’re isolating disabled people, but they’re doing work that non-disabled people also do. What if instead we had integrated work environments where everybody learned from and supported everybody else and recognized that everybody works differently? Maybe it sounds like I’m talking about some kind of utopia, but I don’t think I am. I think I’m talking about the real world.

Tim Villegas:
Let’s talk about ableism. I wanted to—it’s not quite a game—but to bring up some examples of ableism. Some come from my own experience, some come from people who have written in and talked about certain things. I just want to throw these out there and see what you think. If it spurs more discussion, great.

Let’s start with this one: A high school teacher tells the mother of a student with cerebral palsy who uses a wheelchair that he shouldn’t come on the field trip because she’s not sure they could participate in some of the activities. Is it ableist, Emily Ladau?

Emily Ladau:
Oh, that hurts my soul. Yes. That is ableist. Oh my goodness. I find myself wondering why the obvious solution there wasn’t to plan an inclusive field trip.

Tim Villegas:
Yes. In fact, yes. Right? I mean, it does seem like the obvious answer. Anyway, that was from someone who wrote in. What about saying “that’s so crazy” or “that’s insane” when you hear someone tell you a story?

Emily Ladau:
I say it’s absolutely ableist. I know there are people who will push back and say that the meaning of words evolves over time. But for me, I try to be very mindful of the fact that when we use words like “crazy” or “insane,” those are words that were and are used to refer to people with mental illness. When we use those words, we’re referring to human beings—even though we think we’re just being flippant and casual in our reaction. So yes, it’s ableist. I know people disagree with me, but my hope is that we can try to eliminate those words from our vocabulary.

Tim Villegas:
Okay. Here’s another one. A high school student council is planning the junior/senior prom and they recruit students with disabilities to be on the planning committee. The disabled students advocate for a quieter space just outside the gym where the prom is held. Is it ableist?

Emily Ladau:
No, I think that’s a fantastic idea. A lot of people benefit from quiet spaces at overstimulating and loud events like prom. If we’re not providing places for people to calm down from sensory overload—which is very real—then that would be ableist. So I don’t think there’s anything wrong with a separate quiet room, as long as you’re not relegating people to it. You’re just offering it as an option.

Tim Villegas:
Okay. So here’s another one. A disabled blogger writes about overcoming their disability and wants to be seen as an inspiration for other disabled people to do the same.

Emily Ladau:
Complicated, but I love it. No, that’s not ableism because a disabled person is allowed to decide how they want the world to perceive them and how they want to talk about themselves. As much as I might not want to be seen as inspiring or as overcoming my disability, it’s wrong to tell someone else how to present themselves to the world.

As long as someone isn’t pushing their narrative onto me, I’m okay with it. And really, I don’t even need to be okay with it because it’s not my story. It’s not for me to decide how someone portrays themselves or conveys their message to the world. While my dream would be that we all move away from this narrative of inspiration and overcoming, if that’s how you see yourself, that’s for you to decide. And that’s okay with me.

Tim Villegas:
Thank you for your thoughts on all these different scenarios and for playing our little game. Let’s end this discussion by talking about allies. That’s one of the things in the title of the book—“how to be an ally.” For people who want to be an ally, and in the book you say “accomplice,” and I know another way to say that would be maybe “co-conspirator.” How can we be that with disabled people?

Emily Ladau:
I think the most important thing to understand is that ally is not a title we can just bestow upon ourselves. Allyship is very much an action. Ally is a verb. It’s not a noun, despite what actual grammar rules may tell you. To me, it’s all about the actions you take. And it’s not about actions and then looking for a pat on the back for taking those actions. It’s about incorporating them into everything you do in your daily life.

Also, recognize that you’re probably going to make mistakes. You’re probably going to mess up. And that’s okay. Allyship is messy. It’s not about getting everything right. It’s not about knowing the right answers. And it’s certainly not about being an expert on the group to which you are being an ally. It’s about recognizing that you are in fact not the expert—and that no one is the expert on anything other than their own experiences.

Allyship is most meaningful when we’re in communication with people from the group we’re seeking to be an ally to. When we’re listening, stepping back, passing the mic, amplifying their perspectives. For me, allyship is all about taking meaningful action. To be the best ally, accomplice, co-conspirator that you can be: let disabled people lead. That is the most important thing you can do. Listen to disabled people, honor disabled people’s perspectives, seek out our perspectives.

There’s a saying I like to remind people of—it’s sort of the motto of the disability community: “Nothing about us without us.” I think that is such an incredible piece of wisdom to carry, because I can’t imagine that anybody would want something that deeply impacts their lives done for them without their involvement. The same is absolutely true of disabled people. Nothing about us without us.

Tim Villegas:
Emily Ladau, thank you so much for being on the Think Inclusive podcast. We appreciate your time.

Emily Ladau:
Thank you so much for having me.

Tim Villegas:
That will do it for this episode of the Think Inclusive podcast. Subscribe via Apple Podcasts, the Anchor app, Spotify, or wherever you listen to podcasts. Have a question or comment? Email us at podcast@thinkinclusive.us. We love to know that you’re listening.

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Thank you for helping us equip more people to promote and sustain inclusive education. This podcast is a production of MCIE, where we envision a society where neighborhood schools welcome all learners and create the foundation for inclusive communities. Learn more at mcie.org.

We’ll be back in a couple of weeks to talk with Sara Jo Soldovieri and Janice Fialka to discuss how to talk with people who advocate for segregated special education.

Janice Fialka:
Listening can help build relationships, and relationships are the safe place where we can explore differences and things that are unknown to us.

Sara Jo Soldovieri:
I would get rid of segregated spaces today if I could. Find that magic wand. But understanding what is your fear with this? What are you afraid of? Because often it comes from—I’ve found that it comes from a place of “I want to protect my child.”

Tim Villegas:
Thanks for your time and attention. Until next time, remember: inclusion always works.