Emily Ladau on Demystifying Disability: What to Know, What to Say, and How to be an Ally

Debbie:

Hey Emily, welcome to the podcast.

Emily Ladau:

Hi, thank you for having me.

Debbie:

Yes, I’m really looking forward to getting into your work and diving into your, well, I’m going to just say gorgeous also. Your book is beautiful, but such a wonderful resource called demystifying disability, what to know, what to say, and how to be an ally. So we’re going to really get into the concepts you write about. But before we do that, outside of your formal bio, which I’ve already read, could you tell us a little bit about why you felt so compelled to write this book and how it’s connected with your personal why?

Emily Ladau:

Yes, absolutely. And first I have to make sure that I say thank you for, you know, saying that the book is gorgeous and I cannot take credit for the actual illustrations. It was my amazing illustrator, Tyler Feder, who is a fantastic artist and really brought my vision to life to be able to represent as many different types of humanity as possible on the cover so that people who maybe have not felt seen before on a book cover could now pick up that book cover and say, hey, I see someone that looks like me on this cover. So just to start off with that, I think it actually leads right into my why. And that’s that I have so often felt like I am not someone who is well represented in the media, in the world, anywhere really. And I think that is such a common feeling and sentiment among people within the disability community despite the fact that we are the world’s largest minority and despite the fact that there are more than a billion people with disabilities around the world to not be seen, to not be represented, and to be treated as though we are just some kind of niche group and relegated to the sidelines and pushed to the margins of marginalization. It is what drives my passion to be an advocate and to have conversations about disabilities so that we no longer have to experience that sense of erasure and I say that knowing full well that I am only one person and there are so, so many different experiences of disability out there. So I don’t speak for anybody but myself, but I do hope that I can help contribute to broader conversations around disability and hopefully demystify it and make it feel more friendly and approachable. So that is behind everything that I do. That is my why. I want the world to be more accessible to the disability community. And I believe that in order to do that, we can take the experiences, ideas, and opinions surrounding disability and make them more accessible to the world.

Debbie:

So even just so we’re on the same page then with this idea of disability, so knowing the listenership for this show are parents raising neurodivergent kids, so kids with developmental disabilities, cognitive disabilities, but disability is a really big umbrella and there are many ways to be disabled. So can you share some of those that might not be on people’s radars as falling within the disability space?

Emily Ladau:

Yes, I think that it’s really important to understand that there are legal definitions of disability within the United States and other countries have varying definitions of disability from a legal standpoint. But there’s also how we understand disability from a very human standpoint. And for me, I define it simply as a natural part of the human experience. And there are so many different ways to think about what disability actually encompasses. So I have a physical disability called Larson syndrome. It’s a genetic joint and muscle disorder and I use a wheelchair to get around. So that’s my very specific disability experience. But when I’m talking about disability, I can either be very narrow in addressing only my own experiences or we can broaden the scope to recognize that you might be talking about people who are neurodivergent. You might be talking about people who have chronic illness. You might be discussing mental health issues. You may be talking about someone who is temporarily disabled because of injury or somebody who has cancer. Disability is such a broad category and such a broad umbrella to fall under. So when we’re talking about it, I want to make sure to level-set that yes, in the case of your listenership, it’s most likely, you know, parents of kids with developmental disabilities, parents of kids who are neurodivergent, but disability encompasses so, so many different experiences.

Debbie:

Yeah, and then you talk about these different models of disability. You talked about a medical model and you differentiated that from a social model. Something we’ve talked a lot about on the show is a medicalized approach to neurodivergence, but I really appreciated the way you kind of broke down these different models. Also ones I’d never thought of are considered a charity model of disability, a cultural model. Could you talk about some of the different models within the disability space? So I’m going to start with the disability space.

Emily Ladau:

Absolutely. I think the first thing to clarify is that when we talk about models of disability, really all we’re talking about is a framework of understanding. And it doesn’t necessarily mean that one is correct or that one should prevail over the other. In my mind, it really means that we are using these different frameworks to inform all of the ways that we think about and talk about. So two of the most common are, as you were mentioning, the medical model, which really understands disability as a diagnosis. But it also looks at disability as a problem of the person, as something perhaps that is wrong with a person, that could be fixed or changed or cured with medical intervention. And we can’t ignore the fact that absolutely disability and diagnosis are connected and often a diagnosis is the source of a person’s disability, someone’s physicality or their mind, is the source of a disability. But that being said, there is the social model, which is really an understanding that, yes, there are things happening within a person’s mind and body that may be disabling, but at the same time, a person’s environment can also be disabling, whether it’s the actual physical environment, or whether it’s the attitudes that are being put upon a person within a particular environment. So I may be perfectly able to do something until I am shut out because I have encountered stairs and no ramp or elevator. So it’s not my disability that is the problem, even though I’m still disabled. It’s that there were stairs that were disabling me in that moment and preventing me from participating. It’s the same thing if you’re thinking about, for example, somebody who is in the education system and they should have access to the least restrictive environment, to a free and appropriate public education. However, sometimes there are discriminatory attitudes that stand in the way of a child having access to that. And so that is not a problem of the person but a problem of the system of society. So medical and social ideas of disability can coexist. And then in my book, I also talk about multiple other ways that we can think about and perceive disability, including what you mentioned, which is the charity model, which is really looking at disability through that lens of tragedy or pity or thinking that people with disabilities are broken and in need of handouts to rectify something that is terribly wrong with them when in fact it’s the systems that we operate in that need to be fixed. So there’s a lot of different ways to think about disability and again, none of them are the singular way to recognize disability exists within and we have to try to understand them in order to really recognize that disability is a very nuanced experience.

Debbie:

Yeah, it’s so helpful. There’s so many directions I want to go in. So I wanna talk a little bit more about language. We were talking before we hit record how the space is evolving so much. And that’s certainly a conversation we’ve been having in the neurodivergent space, just the evolution of language, right? Identity first language, person first language. And you address these things. You address euphemisms that are used, the idea of special needs. It seems like language is all over the place and continually evolving. I’m wondering if you could share some best practices or maybe some of your top line do’s or don’ts when it comes to the way that we use language when discussing or referring to disability.

 

Emily Ladau:

I’m really glad that this is the direction we’re taking the conversation because I think I so often lose people even just in saying the word disability to be honest, especially within parenting communities. I think that there is a misconception that disability is a bad word and so we should instead use terms like special needs or differently abled because of course we don’t want to ascribe negativity towards our children. And I completely understand that mindset. We’ve been socialized to think about disability as a bad thing. But there’s also, at least in my mind, I would caution some harm in avoiding the term disability. The first being that disability is the term that is used in legislation. It is not the Americans with different abilities act, you know, it is not the Individuals with Special Needs Education Act. It says disability very clearly in the titles. And so, first of all, saying disability clearly delineates that your child is protected under these laws. And beyond that, that fear of labeling, well, Instead, you’re just labeling in another way. And I know that this is not always a popular opinion when people wanna say, my child has special needs, but they don’t have a disability. My question is, well, what is it that makes their needs special? They have human needs. We all have human needs. We all have needs in order to survive, to thrive, to be cared for, to navigate this world that we live in. And because I have a disability, my needs are not special. They are simply my needs. I like to joke around a lot though, that if you wanna talk about my special needs, I definitely have them. I would like you to fan me. I would like you to feed me grapes and treat me like a queen. I mean, my goodness, you know, those are my special needs, but everything else is just human needs and we all have varying needs at varying times. And my question also pertains to why we say differently abled instead of disabled, because aren’t we all differently abled? You know, somebody who is listening right now is really good at singing and somebody is really good at math. Someone can solve a Rubik’s Cube in under a minute. Somebody can walk a tightrope. We all have different abilities. So differently abled doesn’t mean very much because we’re all differently abled. And so disabled to me is not a negative, but rather a straightforward term. And also for many, it’s an identity, it’s a culture, it’s something that’s indicative of being part of a group that has an entire history behind it. And I know that this can be challenging to hear when we have for so long been thinking that disability is a bad thing, that it’s wrong, we want to get away from that term. And I want to be very clear, I am not here to tell anybody how to refer to themselves. I’m not here to dictate language rules.

But my top do, if you will, in terms of dos and don’ts, is whenever possible, defer to the preference of the person. And I know in this case, we’re often talking about younger children. So my best advice tends to be, try to tune in to how your child is communicating about themselves, rather than necessarily influencing how they communicate about themselves. And this is acknowledging that all children communicate in different ways, some don’t communicate verbally, some may use assistive communication devices. However your child communicates, try to tune into that and see and observe how they respond to different terms, introduce them to different terms, allow them to think about using the term disabled and see what they gravitate towards. And I recognize that this can be challenging advice because you’re surrounded, especially in school systems, by things like the language of special education, right? And because you wanna do what’s right for your child, but also keep in mind that your child is receiving a lot of different messages and is processing their own identity at the same time. So, you know, that’s really my top piece of advice about language is defer to preference whenever possible, honor a person’s preference, remember that there really is no right or wrong answer and that language is deeply personal and it’s very much a part of how we identify and how we think about ourselves and who we are and how we show up in the world.

 

Debbie:

Yeah, that’s such a helpful and thoughtful answer. Thank you. And even just that differentiating between special needs and human needs, I think is, is really helpful to hear. So in this space that I work in, I’m always encouraging parents to take time to explore their unexamined or internalized ableism. In your book, you present a definition of ableism as attitudes, actions, and circumstances that devalue people because they’re disabled or perceived as having a disability. So I’d love to talk about that just as, you know, I think in recent years, a lot of people have kind of worked to identify their unconscious bias or their internalized racism. There are probably a lot of listeners who don’t recognize internalized ableism that they might have, because maybe they’re being conscious of not saying, this terminology or these more kind of explicit ways of being ableist. So I’m wondering if you could give some examples or describe what ableism can actually look like that people may not be aware of.

Emily Ladau:

Yes, and I first want to name that I know how challenging it can be to try to dismantle internalized biases that you’re holding. I am disabled, yes, but that doesn’t absolve me of doing that work, especially because I am a white woman with a disability, for example. So my experience is very much that of someone who has that level of privilege. And I am constantly also doing work within myself to dismantle the biases that I hold. Nobody wants to be told that they’re being ableist, but the reality is that because ableism is so normalized in our society, we sometimes don’t even realize that we are being ableist. And often it’s not just that we’re being ableist, sometimes it’s the fact that we exist in a heavily ableist system. And so it’s much bigger than us. It’s really the systems in which we operate. But I like to point out to people how ableism can play out in interpersonal interactions and then also how ableism plays out within the systems that I’m talking about. So in terms of interpersonal interactions, I’m sure we are all familiar with having someone speak about your child as though your child is not there or speak over your child or for your child. And to be honest, maybe that’s you at some point, right? And it’s not because you are not well meaning, but it’s because we have been socialized to make the assumption that people with disabilities don’t always know what they need or want or what’s best for themselves. And this conversation again always gets sticky when I’m talking specifically about young people with disabilities as opposed to older people with disabilities because of course there is that dynamic of parent child no matter whether the child has a disability or not. And so certainly I’m not suggesting, you know, stop parenting, not at all. But what I am saying is that ableism can manifest in these assumptions that we make that we always know what is best for a child without actually consulting our child if they are able to communicate that to us in a given moment. And if we don’t give our child the opportunity to have a role in that communication, whatever that communication looks like, then we may very well be ableist without intending to be. And then of course, there are those interactions that just happen out and about where I have people who come and impose help on me without first asking me if I need help, or people who ignore me and instead talk to the person that I’m with, or who ask me those rude and imposing questions about what happened to me or what’s wrong with me. And so we’re all probably very familiar with those interactions, but then, you know, there’s systemic ableism too, and it’s baked into all of our systems.

And briefly, I’ll give the example of the fact that I live in New York and we are notorious for having a massive public transportation system that is wildly inaccessible to people with disabilities. And as someone who is a wheelchair user, I can maybe access a quarter of the subway stations that we have around the city on a good day, assuming that the elevators aren’t broken. And that in and of itself is ableism, if you stop to think about it, because it’s not just a matter of transportation. If we can’t access the transportation system, we’re then shut out from so many other opportunities, whether it’s education, employment, access to healthcare, socialization, exercising our right to vote. So ableism is something that’s not just in how we interact and in the biases that we hold, but in the fact that those biases have transferred over to the things that are supposed to help us navigate the world 100%. And I hope that people begin to take a look outside themselves and not just think about the ways that they might be ableist within the context of their own family dynamics, but just how it can show up very unintentionally. We make presumptions about people simply by taking a look at them. We might even make a presumption that somebody is not disabled when we look at them because they don’t appear to be visibly disabled.

 

And so that in and of itself can be a form of ableism because we’re completely discounting the fact that non-apparent or invisible disabilities exist. So really it’s a bit of a tangled web, but I think if I could boil it down to one thing, it’s avoid making assumptions, check those attitudes, think about your actions.

Debbie:

Can you talk more about intersectionality? 

Emily Ladau: 

I am happy to talk about intersectionality and I know that for so many people that is just a buzzword and it’s something that we may hear so often that we’re not really consciously thinking about what it means. But when we’re saying intersectionality, we’re talking about the fact that people hold multiple identities and the experiences of those identities overlap. So for example, if you are a person of color with a disability, then the experiences of racism and ableism will overlap. You don’t exist only as one of those identities at a time. You are always a person of color. You are always a disabled person. And so we can’t take those identities in isolation. And for me, my two particular identities that I navigate in terms of being a minority are that I am disabled and I am also a Jewish woman. And so there are times when my experiences of ableism and antisemitism can overlap. I am never just one or the other. I am always both. We hold multitudes of identities within ourselves at one time about our experiences specifically with disability, we have to understand that those experiences are largely shaped by some of the other identities that we hold. So as a white woman, someone who was raised in a relatively middle-class family, someone who grew up in the Northeast, I identify as female, which is the gender that I was assigned when I was born. And I am someone who identifies as heterosexual. And when we take all of these identities, you recognize I exist at this nexus point of privilege and marginalization. And that may sound complicated, but really all it means is that, yes, I am marginalized in some ways and I have privilege in some ways, and I want to acknowledge that. And that is often the reason why I am able to have conversations like this is because I have certain privileges that afford me access to have these conversations. Whereas people who hold other marginalized identities may not have the same kind of access, may not be taken as seriously, may not be welcomed to the table, although they have just as much of a right to take up space. So If we had to boil it down to a simple understanding of how disability overlaps with other identities, think about it as the fact that disability cuts across every single identity group. There is no identity group that is not part of the disability community, and it’s one of the only identity groups that anyone can join at any time. And so when we think about it that way we begin to recognize that disability is not limited to any one experience. And because there are more than a billion disabled people in the world, you’re going to have more than a billion experiences and opinions of disability. And that’s okay. That’s just a fact of what disability means.

Debbie:

That’s super helpful. And also in the book, you acknowledge that the disability community doesn’t exist as this kind of one giant cohesive group, and that there are different movements within the community discriminated against in different ways. And you also say sometimes these movements are at odds with each other because of who does hold kind of privilege in our society. So you talk about something called cross disability work when people in different spaces join together as part of this bigger movement. Can you talk about that?

Emily Ladau:

Yes, this is something that can be challenging to talk about because I never want to come across as divisive. And so when we’re talking about different movements, when we’re talking about different groups, it’s not meant to be divisive, but rather to note that although we all have overarching common interests in terms of access and inclusion and equity. There are different needs under that large umbrella of disability. And so different movements often make sense because they allow people to come together in regard to a common lived experience to fight more specifically for those needs. And something that I think is particularly important to differentiate. And there are multiple movements that I talk about in my book, but I’ll specifically name today the fact that we often talk about what’s known as the disability rights movement, but then we also talk about the disability justice movement. And too many people use rights and justice interchangeably when, in fact, they are two divergent movements in some ways. And disability rights really centers in many ways people who already hold certain levels of privilege and of power. So although there were certainly many black people, many people of color who were involved in the rise of the disability rights movement, white people with disabilities were often the ones who were centered in those conversations. And so the Disability Justice Movement really arose as a response to that in saying that we cannot center the people who are already holding the power when we are ignoring people of color, when we are ignoring LGBTQIA people, when we are not recognizing that those identities can overlap with disability. And so from that emerged the Disability Justice Movement, which is focused on centering those perspectives and really bringing them to the forefront. And I think a lot of people have a misconception that having multiple movements is a source of division, but it’s actually a way for people to find a sense of community and to come together. But we need to also be able to work across lines, whether it’s across lines of different types of disabilities, chronic illness and neurodivergence, physical disabilities and non-apparent disabilities, right? And intellectual disabilities and mental health. We all need to be able to work across lines because even though our experiences may be different, we all have those core values that we want to pursue. We may just have different visions of how we want to pursue them and who needs to be at the table and in those conversations. And then that’s when we need to take a step back and say, okay, well, who is at the table? Who’s missing from the table, and how do we figure out how to center the voices of the people who are so often missing from these conversations.

Debbie:

I just so appreciate this conversation because it is complex. These can be challenging things to explore. Emotions can be high in different spaces and it can make people uncomfortable. And so I just really appreciate going into this in the level of detail that you are in the way that you’re kind of walking us through different frameworks or different ways to, to think about this conversation. I didn’t understand the difference between disability rights, disability justice. So that’s super helpful. So thank you.

Emily Ladau:

And I’m glad to offer that context with the acknowledgement. I’m far from an authority on disability. I’m just someone who is very passionate about engaging in these conversations. And also, I think you’re right to bring up the fact that these kinds of conversations can make people super uncomfortable. And it’s very possible that people listening today might have been feeling a little bit uncomfortable. And I don’t want you to feel alienated or pushed away. I would hope instead you’ll lean into that discomfort a little bit and recognize that you are welcome and have a place in this conversation.

Debbie:

Thank you. Thank you for that. I do wanna spend a few minutes just talking about accommodations and accessibility. As you mentioned in your book, and we talked about this earlier in our conversation, a lot of people are thinking about those ramps, right? Or elevators or these kinds of more visible signs of making a space accessible, but it’s so much bigger than that. Just in recent years, there’s been a lot more people describing for example, visual descriptions on a blog post for the images that they’re sharing and those types of things. As someone who has a father-in-law who is blind, and spending time with him, I’ve really learned so much about what is not accessible to him that I’ve never had considered before. So are there types of accommodations that wouldn’t be on people’s radars or ways to make spaces more accessible that we could start paying more attention to.

Emily Ladau:

Well, I think you named something very important, which is really looking outside of yourself and recognizing that even if you have particular experience with disability, whether it’s your own or a family member’s, that we can always continue to expand our thinking and learn new things from new people in our lives or from people who have been in our lives who may acquire a disability at some point. So I’m glad that you mentioned that specifically because I think that is a really good starting point. We tend to become wrapped up in the things that we recognize as being accessibility. And so in my case as a wheelchair user, of course, things like ramps and elevators and grab bars and bathrooms and wheelchair accessible bathroom stalls, right? Those are all things that are always on my mind. And that was how for so many years I understood accessibility, but now I understand accessibility to be so much broader than that. It’s really about what an environment needs to provide in order for a person to thrive in that environment. And so for someone who has a vision disability, that can look like providing audio description or describing an image in a caption. For somebody who is deaf or hard of hearing, it can be providing captions or sign language interpretation. For somebody with a chronic illness, maybe it’s working from home or having flexible working hours so that they can accommodate what their mind and their body needs when it comes to rest. And for someone who has a sensory disability, perhaps it’s providing a quiet room. Perhaps it’s recognizing that they need to get up and move around and stim or maybe it looks like not having such bright overhead lights for somebody who has an intellectual disability providing materials before a meeting or event. I mean, the list goes on and on, but the reality is that accessibility doesn’t just look one way. There are different needs that people have at different times in order for them to succeed in a given environment. And so I really encourage people not to have a narrow definition of accommodation or accessibility, but rather to check in with the people in their lives and say, hey, is this accessible to you? Is this working for you? And if not, what can we do to make things more accessible?

Debbie:

There’s so much more I want to go into and we just can’t because of time, but I do want to spend maybe these last few minutes talking about disability etiquette. And you have a chapter on that in the book where you share some kind of do’s and don’ts when it comes to engaging with disabled people and ensuring that the way we’re showing up is respectful. Would you be willing to share maybe one do and one don’t when it comes to disability etiquette that listeners could kind of take away with them and just be more mindful of?

Emily Ladau:

I think that if I had to put it into overarching terms, my biggest etiquette DO is to just be yourself and act naturally and treat disabled people as you would other people. No need to change the tone of your voice. No need to treat them in a condescending manner, no need to be patronizing or to ignore them or to overlook them or us, I should say, but rather treat us as you would any other person, just act normally. And so I think that my etiquette don’t is really, you know, no need to treat us as alien creatures or delicate flowers, right? We all have, as I mentioned before, different needs. We all show up in the world in different ways. We all communicate through different methods. But at the end of the day, we are all human beings. And that’s not to erase disability, because I’m not saying that disability doesn’t exist, but I am saying that it boils down to our humanity, and disability is a part of that. And so the best possible etiquette tip that I can give you is to think about how you are engaging with others. There’s the golden rule, which is treat people as you wanna be treated, but I really like the platinum rule, which is treat people how they want to be treated. And that means differing to someone else’s personal preference, honoring that preference, and recognizing their humanity.

Debbie:

Hmm, the platinum rule. Is that your term? I’ve never heard that before.

Emily Ladau:

No, I cannot take credit for it and I quite honestly couldn’t tell you exactly where I heard it. But once I finally started hearing it, I said, that makes so much more sense because how do I know how somebody wants to be treated? The way that I want to be treated is not the way that somebody else wants to be treated necessarily. And so the best thing that I can do is whenever possible honor how other people want me to engage with them.

Debbie:

Yeah, I love that. So good. So the book is called Demystifying Disability, What to Know, What to Say, and How to Be an Ally. It is very accessible to use that term, but it’s just really, it’s well written. It is conversational. It feels like we’re sitting down and having a conversation. You know, it really is easy to learn from what you’ve written and it doesn’t feel intimidating at all. And again, it is also beautiful as we discussed in the beginning. Before we say goodbye, I’m just curious, what has the reception to the book been and the conversations that it has sparked?

Emily Ladau:

I love this question. And in so many ways, it has been a learning experience for me. I think that responses have been largely and abundantly positive. And people have been very receptive to my style of communication and the fact that I do invite conversation and I don’t want people to feel alienated. And then, of course, there are people who have said, Well, I don’t feel represented by the book, or I feel perhaps that the book may be pandering to people without disabilities. And my very honest response to all of that is that I never set out to write the Bible on disability or the encyclopedia on disability. Really, what I set out to do was write my own offering to a much broader conversation about disability, knowing full well that I cannot and would not ever cover everything in the pages of the book, but I just wanted to offer people a starting point in the hopes that they recognize it as a starting point, and wherever they already are on their journey will continue that journey. But I would say, for the most part, it has been such a wonderful experience to connect with people who have said, Hey, I haven’t thought about this in this way before, or thank you for helping me reframe my thinking a little bit. And I welcome that kind of feedback, I welcome conversation, and I welcome people who have divergent opinions for me because that is what makes the world go round as cheesy as it sounds. I am just grateful for every moment of learning and connection that the book has brought to me.

Debbie:

So beautiful. Well, thank you for the learning and connection that we’ve been able to have together and share with our listeners today. I so appreciate it. And where can listeners connect with you and learn more about your work and your book?

Emily Ladau:

Well, thank you so much for having me, first of all. Probably the easiest place to go is my website. It’s just my name, emilyladow.com. You’ll find everything there. I have a monthly newsletter. I’ve got all of my writing and resources. And you can find me on social media. But I’m also at Emily Ladow across social media, especially Instagram and LinkedIn, because I’m a big nerd. I do still occasionally use what is formerly known as Twitter, but not so much anymore, Facebook, threads. So I’m easy to find and I welcome you to find me.

Debbie:

Awesome. Thank you. And I just have to ask, what part is the nerd part? Is that LinkedIn? What is considered nerdy? 

Emily Ladau:

Oh yes, yes. I am a nerd and I like LinkedIn and I know that maybe that makes me a bit of a career dork but that’s okay. I think that it’s fun to connect on there.

Debbie:

For sure, and you’re in good company, so absolutely. Listeners, I’ll have links to all of Emily’s resources in the show notes page. So go there to dive deeper into this. And Emily, thank you again for everything that you shared today and for writing such an accessible, wonderful book.

Emily Ladau:

Thank you, Debbie, for having me and thank you to all of your wonderful listeners for tuning in.