Mary Mecham, a mother of two children with rare genetic disorders to whom she reads every day, grew frustrated by the lack of books that had characters who resembled her children. She began to search for stories that featured people with disabilities and met authors with disabilities who wrote about their own struggles. To share these works, she created Disability Book Week, which runs from April 23 to 29. We spoke to Brianna TenBrink, autism advocate and Disability Book Week panelist, about the portrayal of people with disabilities in literature, how that’s changing, and some good reads to consider for anyone interested in participating.
Daniel Levine: Brianna, thanks for joining us.
Brianna TenBrink: Thank you for having me.
Daniel Levine: We’re going to talk about Disability Book Week, the changing portrayal of people with disabilities in literary works, and your own work as an advocate. Perhaps we can start with some basics. What is Disability Book Week?
Brianna TenBrink: Simply put, Disability Book Week is an initiative that promotes inclusivity of those with disabilities in literature. It takes place during the month of April from the 23rd to the 29th. And it’s very exciting because this is our first year of this initiative. So we are counting down the days at this point to our very first Disability Book Week.
Daniel Levine: And how did it come about?
Brianna TenBrink: So currently I am a partner in the Texas Partners and Policymaking program, and this initiative was captained by this amazing disability advocate, mother, and author that I met there. Her name is Mary Mecham, and she took her passion for books combined with a need for individuals with disabilities to be represented in literature, much like her daughter, and transformed it into purpose. So that’s how it came about.
Daniel Levine: You’re doing a lot of outreach to schools and libraries, but is this targeting only young readers or are you trying to reach a fuller audience?
Brianna TenBrink: This initiative is definitely targeting everyone. Anybody who can read a book or can be read to, we ask that you participate. While we do think it is very important to get young readers familiar with reading about individuals with disabilities at an early age, we are working to get active with more widespread book clubs and on social media, doing some hashtag challenges to ensure that all age groups are encouraged to be a more inclusive reader.
Daniel Levine: How can people participate and what exactly is Disability Book Week?
Brianna TenBrink: So, it’s super easy during Disability Book Week, which takes place from April 23rd to April 29th. We encourage everyone to read a book that either features a main character with a disability or is written by an author with a disability. We also have some recommendations on our website that you can feel free to peruse and pick from. And bonus points if you read more than one.
Daniel Levine: As an English major, when I thought about people with disabilities through literature that I’ve encountered, everything from Richard III to Moby Dick, they always haven’t been cast in the greatest light. There certainly have been biographies like Helen Keller’s or Christie Brown’s, but in general, how have people with disabilities been portrayed in literature?
Brianna TenBrink: From my experience, I find that characters fall into one of three categories. They’re either gravely unhappy with their lives because of their disability, suffering in some sense because of it, or they are portrayed or feel as if they are a burden to those around them. Rarely are these individuals with disabilities treated in literature, if they are even included at all, as perfect the way that they are. I’ve noticed that if individuals with disabilities are portrayed as perfect, the way that they are, they then somehow become super humans that are able to do extraordinary things. Now I have two younger sisters on the autism spectrum and while I think they’re super, they definitely aren’t flying around or solving math problems in a matter of seconds. They aren’t human calculators, they’re human beings that want to be valued just as the way they are. And so that’s why Disability Book Week is so important because it’s all about promoting empowering literature in a realistic sense.
Daniel Levine: Well, talk to me about your advocacy work in autism. You mentioned you have two sisters. What was it like to grow up in a household where you had two siblings who had autism?
Brianna TenBrink: Yeah, it definitely was a whirlwind. There was a lot going on in my house at all times, especially in those early stages. My parents and I joke about it now, but our house almost looked like a school, every new word that they learned how to pronounce was up on the wall, like a reading wall. There were texts, pictures, which are basically visual images that describe the item that it’s attached to along with its name, to encourage verbal communication. It was a lot going on at once and know I wanted nothing more than to be an older sister, but it definitely had its ups and downs–what siblings don’t—I wouldn’t have had my home any other way. I really do think that my sisters have made me the person that I am today and they’ve led me down a career path that I never would have if it wasn’t for them. And it’s a perfect fit and our family is even closer because of it. We’re basically our own little squad unit everywhere we go. My sisters are about to be 16 and 17 soon and I ask myself all the time, where did the time go?
Daniel Levine: What about that experience led you to become an advocate?
Brianna TenBrink: Yeah, I’ve actually never been asked this question before, but like I said, I wanted nothing more than to be an older sister. So, when my sisters were born only 14 months apart, I was over the moon. It was like a two for one special. Leah, my youngest sister, was diagnosed when I was 10 years old and Maya, my middle sister, was diagnosed soon after. I decided I wanted to be an advocate for change for multiple reasons, just in the general interactions I saw in my own life with other individuals with disabilities, for example, when they were diagnosed I was still in elementary school—so paying attention to how other students perceived the students that were included in our classroom that were part of the life skills classroom, and I didn’t really enjoy some of the banter or the point of view or how they were treated as outcasts. That really sparked something in me and I had a great example. My mom dove right in right when my sisters were diagnosed and she was reading every book, finding out every resource, attending every therapy, every conference that we could. So, I credit a lot of that back to my mom. She really inspired me. I decided I wanted to be an advocate and I’ve even gone ahead and co-founded my own organization, Project Leah, which stands for leaders ending abuse and harm in Texas public schools due to my youngest sister Leah being verbally, emotionally, and physically abused at her previous campus. But I would say that the one thing that reigns overall is that I would hope, and in my heart I know that if our positions were reversed, that they would do the exact same thing for me. So I will carry that torch until the end of my days.
Daniel Levine: As an advocate, what’s been your experience with the way people understand and view people with autism? And what’s been the focus of your advocacy, has it been autism in schools?
Brianna TenBrink: I think I have a unique lens here as a sibling, and then them being diagnosed so young and me of growing up alongside them. I’ve noticed from young adults to grown adults, that many people fail to understand that autism is a spectrum though it is in the diagnosis title. No two individuals with autism will possess the same traits for that exact reason. And from that experience, I feel that people view individuals with autism as either being incapable of learning to become independent, so they’re often babied or their bar is set really low and they are not expected to reach high expectations that I know that they can achieve and a lot of people lose faith in them very quickly. And it’s either that or they’re all geniuses and there’s really no in-between. And so the focus of my advocacy has involved proper education, especially for school age individuals, about what autism is, encouraging inclusion of those with disabilities in all spaces. So that’s schools and that’s also in the community and being a voice to the sibling perspective, which I think is rarely shared, but is very important because at the end of the day, a lot of the times—when your parents move on, pass on–you are the one that is left as the guardian, the caretaker, and the decision maker of that sibling. So, I’ve made it my focus to not only educate textbook wise, but also from a family and relationship standpoint.
Daniel Levine: If you could address people who are not familiar with autism and autism spectrum disorders, what would you like them to understand about the condition?
Brianna TenBrink: Yeah, as I stated before, each individual with autism will display their autistic traits differently. You know, you can even look at my sisters, for example, who are on completely different ends of the spectrum. Maya is in a general education classroom. Some of the things that she deals with is she has heightened sensory issues, especially with smell. She cannot stand the smell of gum or gummy candy. She has a really difficult time deviating from her routine and she has to work a bit harder than the rest of us to understand and follow social cues. Leah, on the other hand, is in a life skills classroom and she is limited verbally. She uses an iPad to communicate and she requires a lot of support for most of her daily tasks. So from this, I would also like to convey that autism, some may, say is fairly common. Currently the CDC put out that one in 44 children in the U.S. are diagnosed with autism spectrum disorder. Therefore, more than likely, you already know someone with autism, which I think makes it all the less intimidating.
Daniel Levine: You’ve touched on a few points about this kind of bifurcation of the way people with autism are treated in literature, and I’d expand this to movies and TV, but they’re either seen as incapable or endowed with special powers. I’m wondering, as you think about literature or other portrayals, as someone who has an intimate view of your condition, how do you think these stories are handled?
Brianna TenBrink: I think representation truly matters. And I think individuals with autism being included in entertainment media is a great step in the right direction. I feel like it’s becoming a lot more common, and I can always appreciate progress. I would love to see more characters depicted in this format to not have their autism diagnosis, be the forefront of who they are as a character, just like everyone else. Individuals with autism are multifaceted human beings that are much more than their disability, and back to my previous points, autism exhibits itself in different ways in each individual. So I think it’d be awesome to see that incorporated into the media as well, and even better if we can get actors like my sister Maya to play these roles on screen.
Daniel Levine: What role do you think this can play in helping foster a greater understanding of conditions like autism?
Brianna TenBrink: I think it plays a great role in simply sparking the conversation and sparking curiosity amongst people who may not have a loved one or a friend that has autism. So that way they can begin asking or research more about it. You know, I think this is a great step in the right direction. And as a community, we can continue to push for progress in these spaces, like what I was saying before, and giving it a little bit more variety because each individual is so different. But I think the fact that they are included, which is not something that I can say that I saw growing up as a kid, I think is very progressive and I think we’re moving in the right direction.
Daniel Levine: The Disability Book Week website offers a list of recommendations. This includes children’s books, young adult books, and adult books. How are these lists assembled?
Brianna TenBrink: So, Mary reached out to me and asked me to become a part of her panel. There is a sensitivity panel that is comprised of 13 individuals that are a mix of individuals with disabilities and disability advocates. We have authors and other individuals that maybe have read a book that they have found empowering to people with disabilities, and they submit it to the panel. Our panel is broken up into people that really love children’s books, love young adult books, that is my category, and adult books. And we go ahead and we read through them and we give a thoughtful, sensitivity review and we make our recommendations. That’s how all of our lists are assembled.
Daniel Levine: Are you accepting additional recommendations from people hitting the website?
Brianna TenBrink: Yes we are. Right now, I believe that we are looking to open back up our recommendation link in these next few weeks at the start of April. We are always open to reading more, but we are a humble team of 13, so we are moving through them as quickly as we can, but also as thoughtfully as possible.
Daniel Levine: I should note for Rarecast listeners, among the recommendation is Shane Buraw’s “Strangers Assume My Girlfriend Is My Nurse.” We discussed this and spoke with Shane who is an SMA advocate on a past episode and encourage listeners to go into our archive and listen to that, which is episode 250. Brianna, give me a recommendation for each of the three categories. What’s the book and why should people read it? Let’s start with children.
Brianna TenBrink: Okay. I would recommend the book “We Move Together” for the children’s category. The illustrations are really bright and very captivating, so I’m sure we will get the little one’s attention. And I think it depicts individuals with disabilities and everyday circumstances that children are familiar with, which I believe will open up that conversation for their questions that they may have not had if they didn’t read the book. And that’s what we want. We want more conversation and less stigma.
Daniel Levine: How about young adults?
Brianna TenBrink: This is my favorite category. And like I said, this is the category that I read and approve books for. So, I would definitely recommend “The Blind Gambit.” As a video game lover, this book was so fun to read. It was a very interesting take on a teen who has retinitis pigmentosa, which is a genetic disorder that causes progressive vision loss over time and how he learns to thrive in his new normal. He meets some awesome friends along the way that encourage him and the reader gets to follow neuro romantic, otherwise known as Brian, offline, as he confronts his emotion, he deals with societal response and learns from others with similar disabilities. It’s definitely a page-turner. It made me laugh several times and is for sure an empowering read.
Daniel Levine: And finally adults.
Brianna TenBrink: I would say the book on parenting a non-verbal child with autism really resonated with me. I think this book does a great job of framing the disability experience when it comes to limited resources and lack of support the individual with the disability and their loved ones feel from society. As I say to my friends, if you’re not a part of this world, it’s incredibly difficult to understand the intricacies of it all. But I think a book like this helps give a baseline understanding of the obstacles and challenges that stem from it.
Daniel Levine: And where can people go to learn more about Disability Book Week and find recommendations?
Brianna TenBrink: To learn more about Disability Book Week and find more of our recommendations, you can visit disability book week.org for more information.
Daniel Levine: Brianna TenBrink, MBA, student advocate, and sensitivity panelist for Disability Book Week. Brianna, thanks so much for your time today.
Brianna TenBrink: Thank you so much for having me.
This interview has been edited for clarity and readability.
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