Emily Ladau's new book makes the world of disability accessible

Photo of Emily Ladau by Carey Wagner

By Louise Kinross

I first got to know Emily Ladau through The Accessible Stall podcast that she co-hosts. I loved her frank, thought-provoking and humorous discussions with Kyle Khachadurian about everything disability. You may know Emily for her role as editor of Rooted in Rights, a platform for first-person storytelling on disability. Or perhaps you saw her when she appeared on Sesame Street as a 10-year-old to talk about having a physical disability. In September, Emily released her first book: Demystifying Disability: What to Know, What to Say, and How to be an Ally. It's a fabulous primer on the world of disability, including how disability influences identity; ways of thinking about disability; the history of disability; how to talk about disability in an inclusive way; and how to recognize ableism in ourselves and the media. I was thrilled to interview Emily, who lives in New York.

BLOOM: Why was there a need for this book?

Emily Ladau: There's already such a rich and robust world of disability-focused media out there, but I think a lot of it relies on the assumption that we already have a deep understanding of disability. But to have that deeper understanding, we first need some of the basic grounding and foundation of disability.

Rather than expect that that is something people already have, which is an unfair expectation given we barely talk about disability in mainstream curricula and often don't see it accurately represented in the media, my hope is that this book will offer a starting point. It will give people a way to get some initial questions answered and to feel like they have some of the language and tools and knowledge to really engage in conversation around disability.

Of course I have to note that as much as I feel there was a need for a book like this, I don't think I am the sole person fulfilling the need. I give the caveat that I am one person with a disability. I recognize also that I am a white, physically disabled person who can communicate verbally. So my book is not meant to be the definitive guide to disability. It's just meant to be one woman's effort to provide a grounding of information on disability that will hopefully help us bridge the gap and meet more people where they're at when it comes to having conversations. 

BLOOM: Who do you hope reads the book?

Emily Ladau: With over a billion disabled people worldwide, you are either disabled or you know someone who is disabled. My goal is for everyone to read the book. If I had to narrow it down, I would say educators, employers, people who work in any kind of human resources, people who are parents of disabled people, and other disabled people. Just because we have one disability doesn't mean we're the expert on other people's disabilities. I did work with someone to put together a plain language version of the book to try to make it more accessible. My hope is that will broaden the audience. At the same time, I never wrote with specific people in mind because I think disability is in so many ways relevant to anyone and everyone.

BLOOM: I like the way the book is written in a conversational, honest and welcoming way. You show that even within the disability community, there are hierarchies of value, and some disabled people have more power than others. One of my favourite lines was 'no disability makes anyone more or less of a whole person.' 

Emily Ladau: I think it's really important to recognize that the people who often dominate the conversation around disability are those who communicate verbally, who are often white, who are physically disabled, and who have what society views as acceptable types of disabilities. These are the people we see portrayed most often in the media, with the message that we're comfortable looking at and accepting their humanity. So this creates a divide between who we're listening to and who we need to be bringing into the conversation. 

I worry, even as someone who embodies what we consider to be the typical disability experience as a white, physically disabled wheelchair user who communicates verbally, that I take up space as well, and that I can unintentionally perpetuate that hierarchy that I'm fighting against. We need to move away from creating a hierarchy of humanity based on how someone moves around the world or communicates. No one is any more of a full person because of how they navigate the world.

BLOOM: We have some clinician training at Holland Bloorview that is based on humanistic principles, one of which is: Every person is inherently whole. Too often in medicine we think of disability as defect, so I liked that idea that as people we can't be more or less whole.

Emily Ladau: That's 100 per cent what I'm hoping to get at. I find so often that we remind people that someone with a disability can live a full life, but we also have to ask ourselves if there's ableism in our notion of what a full life looks like. We assume a full life is one in which someone goes to school, gets an education, gets a job, has a relationship, moves into a house and gets married and has children. These are, in and of themselves, such normative ideas of what a full life looks like. If you're a human being who is alive, your life can be full. That fullness doesn't have to be based on other people's arbitrary ideas.

BLOOM: At the beginning of the book you talk about how having a mother who shares your disability has been a great advantage. Can you explain?

Emily Ladau: Whenever people initially hear that my mom passed her disability on to me, there's this assumption that it must be a tragedy. I would never suggest that our life has been easy, but I want people to understand it's been such a great gift, truly, to have someone who shows me here is a disabled adult living her life and this is what your future can look like. And someone who in so many ways has modelled advocacy for me and given me the tools that I need to advocate for myself.

Now, as I'm on a journey of diving deeper into the disability community and continuing to navigate my place there, I have the privilege of bringing her along with me. She did so much for me and now I have the opportunity to bring my mom along in finding that disability pride. I think that is a really incredible relationship to have.

BLOOM: Have you ever thought about what path your life might have taken if you didn't have a parent with a disability?

Emily Ladau: That's a great question. I do think there's a good chance that I wouldn't have felt as connected to the broader disability community. And not that I think just having a parent brought me to that. But I think it was what gave me what I needed to learn to be more comfortable with myself. So in many ways having somebody who showed me the path forward is why I am where I am.

BLOOM: You give an overview of American disability history, and note that it isn't taught in most American public schools. I'm quite sure it's the same in Canada. You said West Virginia had begun including it in its curriculum.

Emily Ladau: Yes, so that was a concentrated effort by several advocates to bring disability into their mainstream public school curricula. My understanding is there are some states that have followed suit, but we're nowhere near where we need to be in terms of covering disability in the same way we cover all types of history.

Disability history is human history and intertwines with so many other historical lessons we teach. Whether it's that the people themselves were disabled, or perhaps we're talking about a war, which can be disabling, or we're talking about the fact that disabled people have been viewed differently at different points in history. I've seen a slow move toward having these conversations in the classroom, but disability is still largely erased from greater historical conversations.

BLOOM: You have a chapter on disability etiquette. I really liked this piece of advice: 'If you're not sure whether you should ask something, if you wouldn't ask a nondisabled person the same question in the same context, don't ask a disabled person.' That really gets at how disabled people deserve the same boundaries that nondisabled folks have in terms of not being asked intrusive questions.

Emily Ladau: It comes down to understanding that someone having a disability doesn't lessen the boundaries and barriers we should have when respecting their humanity. So ask yourself: 'Would I be similarly invasive of someone who was non-disabled?' 'Is this a question you really need to know the answer to?' 'In communicating this question, are you showing that you respect the other person's humanity?'

BLOOM: Often in the rehab world parents of kids with disabilities are given the advice that they, and their children, need to be prepared to answer any questions people field in the public. So I was happy when I saw James Catchpole's new children's book What Happened To You?, which pushes back against that, and educates children to understand that just because someone has a disability doesn't mean their life is an open book.

Emily Ladau: Yes, the expectation is that disabled people are living, breathing teachable moments, and we owe so much of our story to other people. We're supposed to figure out that people are well meaning, and they just want to know more about us. On the one hand I'm always happy to create those connections and bridge those gaps when I can. But I don't always want to have to be 'on' and teach people about myself, especially when I'm just out trying to live my life. 

I want to encourage balance. We don't completely shut down communication, but we don't feel obligated to always be on and educating and opening up. I do think it helps to have some kind of response to give people, but that can vary depending on the situation, depending on who's asking, and depending on how you're feeling that day.

So many factors go into how we communicate about our own disability experiences. All of that effort shouldn't constantly be on us to be 'publicity ready' at any moment. Sometimes a kid just want to be a kid. And sometimes a person just wants to be a person.

BLOOM: You make clear that racialized people have been excluded from some disability rights work, such as the Independent Living Movement. How much progress has been made?

Emily Ladau: I think there's a continued and conscious effort by some people to ensure that whiteness is no longer centred in every single disability publication. But I don't think we are where we need to be. There's still very much a divide in mentality around who most belongs at the centre of the conversation. While there's been great progress in centring the voices of disabled people of colour, there's also a lot of people, who I refer to more as the 'old guard,' who have done great work, but aren't necessarily willing to cede their positions of power to people of colour who have always been there doing the work, but their work has been overlooked.

BLOOM: You note there's a difference between disability rights and disability justice. Can you explain?

Emily Ladau: Disability rights is an ongoing and enduring movement and has indeed included people of colour, but disability justice stemmed from the fact that the disability rights movement didn't centre the perspectives of those who are most marginalized—people who are disabled, queer and people of colour. Those are the voices we need to centre. Disability justice emerged as a grassroots response to that exclusion that said 'No, our perspective needs to be centred, and in doing so we're going to make the world better, more accessible and inclusive for all types of people.'

BLOOM: What was most challenging about writing your book?

Emily Ladau: Recognizing that there was no way I could ever encompass every single thing I should have, or could have, or wanted to. I was working with a limited amount of space and I didn't want to centre myself, but because it was a book I was writing, it came across through my lens. There were issues I couldn't focus on as much as I wanted to and it came down to the fact that no one person can write the overarching encyclopedia of disability. So that's why I gave the caveat that there will be things missing. It's a challenge to encompass the experiences of a billion-plus people in one book, and my goal was to create one conversation starter.

BLOOM: Has anything surprised you about reader reaction to the book?

Emily Ladau: I don't know that I've been surprised about anything. I certainly noticed that there's a big divide in responses. Some people feel that the book is too radical and some feel that it's not radical enough. It just goes to show that with 1.3 billion people in the world you're going to have 1.3 billion thoughts, feelings and opinions on disability, not to mention the feelings of caregivers, of parents, and of people who work in the caring professions. It's par for the course. 

BLOOM: Each chapter is framed with a powerful quote. I thought this one from Rosemarie Garland-Thomson was particularly compelling: 'The history of disabled people in the Western world is in part the history of being on display, of being visually conspicuous while being politically and socially erased.' It really gets at how disabled people are made to stand out as oddities, but are made invisible in terms of power.

Emily Ladau: It is really powerful. I think we have to recognize that disabled people are so often objects, but we're so rarely given the opportunity to be the subject of our own lives. In broader conversations, we forget that every issue is a disability issue that cuts across all other identities. We miss so much when we don't recognize that. Instead, right now, we're at the point where disability is all about being on display.

Want to follow Emily's writing? Check out her blog.

Like this interview? Scroll down to the blue banner and sign up for our monthly BLOOM e-letter. It combines youth and parent voices, interviews with clinicians and researchers, plus disability news, opinion pieces and new books.