Emily Ladau is an activist, writer, and speaker whose work revolves around her passion for disability rights and social justice. In September 2021, Emily published her first book, Demystifying Disability. Demystifying Disability serves as an introductory resource to being a thoughtful, educated ally to disabled people. The book highlights several important disability issues including etiquette, accessibility, and conquering ableism in society. Below, Emily answers a few questions on her inspiration, research process, and what she hopes people gain from Demystifying Disability.
What inspired you to write Demystifying Disability?
I think that's a fun first question to start with. And for me, I like to give the caveat before I share more about the book that I am only one person. I am a white woman with a physical disability, and I don't speak or presume to speak for the whole of the community. I am someone who is very passionate about educating about disability. But the book that I wrote was never meant to be the Bible on disability or the encyclopedia on disability. Rather, it's meant to be a way to bridge the gap in knowledge about disability and to provide a primer and a framework for people who may not be sure where to start the conversation about disability. So my inspiration really came from a mantra that I have, which is that if we want the world to be accessible to the disability community, then let's make the ideas and experiences surrounding disability more accessible to the world. And I don't believe that it is the responsibility of all people to share their stories all the time, to be teachable moments all the time. But I also believe that by bridging the gaps and by creating connections and by having open dialogue with one another, we can begin to dismantle a lot of the stigma and stereotypes that people hold about disability. So the book, for me, was just my way of offering one starting point in a much broader ocean of resources on disability in the hopes that I can contribute to the broader conversation.
The process of finalizing a title can be difficult. How did you ultimately choose Demystifying Disability as the title?
I had a little help. I will be honest. The history behind the title is that back in 2019, when this whole process began. I appeared on a podcast called Call Your Girlfriend with a very good friend of mine, Kelly Dawson. The host offered us the opportunity to guest host to talk about disability. And on that podcast, we opened up about our experiences and what it's like being disabled women. And a literary agent listened to the podcast, and she reached out to me afterwards and said, I've read some of your writing before, and I heard you on this podcast. Have you ever thought of writing a book? And the title of that particular podcast episode was Demystifying Disability. And down the Line, as we were talking about coming up with a title for the book, of course, we wanted something that was catchy and alliterative. But most importantly, I want to demystify disability because we've been socialized to understand disability as this mysterious and scary thing, and we feel very alienated by it so often and assume that it's a source of shame and negativity. And I wanted to take away that air of mystery and discomfort that we have with disability and invite people in to explain that it's just part of the human experience. There's a history and an identity and a culture behind it, and it's not something that we need to be afraid of or avoid. It's just a part of humanity.
Could you briefly describe your research process behind this book. How did you go about ensuring that disabled voices are heard throughout Demystifying Disability?
The most important thing for me was to convey the message that I am not a sole authority on disability and that there are 1 billion plus disabled people in the world, which means that you are going to have more than 1 billion opinions and stories and identities and experiences. And so it's simply not possible to encompass the whole of the disability experience in any one resource. But my goal was to talk to people with different identities than mine and different disability experiences than mine, recognizing that disability cuts across all identities and cultures. And my goal was to bring perspective and nuance beyond my own lens into the book and to encourage people to recognize that even with all of the interviews that I was able to do and the people that I was able to talk to who were so kind and willing to share their time and their stories with me. That's just the beginning. There's a world out there of disability experiences to learn about and to learn from. And so while what I included was a sampling of that, it's just a starting point. And in the back of the book, I included further reading and resources because even as I conducted my research, I realized there's no way to put everything that I want to put into one book. And I don't want this to be the only book that people go to. I want it to be one point in a broader journey of learning and understanding about disability. And so in my own research, I was able to gather a list of recommendations for people to keep their learning going.
What are a few things you learned while conducting the interviews for this book?
I really love this question. And I think the biggest takeaway for me from all of the interviews was that you can never make an assumption about what a person's experience with disability is because there are so many disabled people in the world and because we all come to disability from very different lenses and we have so many overlapping identities and experiences, we can't assume that disability looks a certain way. We can't assume that disability manifests within a person in a certain way. We can't really make any assumptions about disability. And so for me, I was learning and evolving in my thinking about disability and really just having it reinforced that there's something very beautiful, in a way, about the immense diversity of the disability community and how much diversity the community holds. And my hope is that we don't stop learning and we don't stop evolving, because that was what all of my conversations reminded me, that if you have communicated with one person with a disability, then you've talked to one person with a disability and another person might say something completely different. And that's okay. And the way that I believe we will make progress is by holding space for not just our similarities and commonalities, but the differences and nuances within such a large community. And so all of the interviews really brought my focus back to remembering that.
Was there a particular section of the book that you had the most difficulty writing?
I would say there were challenges throughout, but one of the biggest for me was definitely the history chapter, because the whole of human history is disability history, because disabled people have always existed. And to try to fit the history of an entire community and culture and identity into one chapter was an immense challenge. And there were certainly parts of it where I feel that no matter how much time and effort and research I put in, I still didn't get it fully right. And there were still people or events or groups that I did not give the attention to you that I should have. And it's challenging working within a limited amount of page numbers to tell the stories and the history of a community that is so broad and so diverse. And so I gave that caveat at the beginning of the chapter that there was simply no way it could encompass everything. But even so, looking back, I do feel that that was the biggest challenge for me, trying to give an overview without focusing too much on any one thing and trying to offer a variety of perspectives and events from different groups within the disability community, but knowing that no one was ever going to be 100% represented to the fullest. And so in that case, I recommend that people continue their learning and dive deeper into an understanding of disability history. There's a really great book, A Disability History of the United States by Kim Nielsen, and that's a great reference point, although disability history is also global. And so that was my biggest challenge. And it's something that I'm continuing to do the work to educate myself on and to educate other people on.
What do you hope people learn from reading Demystifying Disability?
I hope that people who read it gain a stronger sense of willingness to be open about disability, to not be afraid to use the word disability, to be willing to engage in conversations and to keep their learning going, because as I've been saying, this is really a starting point and it offers a grounding framework in language and etiquette and media representation and history, but it's just one book. And so while I hope that it gives people an understanding, I hope that they then use that understanding to continue their learning and moving forward.
To learn more and to find out where you can purchase your copy of Demystifying Disability, visit Emily's official website.