Rebecca Weber is an assistant professor and the Education and Teaching Librarian at Oklahoma State University. She holds a Masters in Library and Information Studies from the University of Oklahoma. Her research interests include the intersection of disability and curriculum and the role of libraries in curriculum support. Weber can be reached at rebecca.weber@okstate.edu.
Culture and Disability
This past holiday season, I watched a movie on Lifetime called Christmas Ever After. Normally, I am not a fan of these movies because they hit predictable out of the park, but this one starred Tony Award winner Ali Stroker–the first person with a visible disability to star in a Lifetime movie–EVER. She’s also the first person with a visible disability I’ve seen play a romantic lead. The Americans with Disabilities Act or ADA passed in 1990, but culturally, we are still breaking first barriers. Here’s another first for you, they don’t really talk about Stroker’s disability. It’s there, her wheelchair and car hand controls are visible in the shots, and she talks about going for a “push” instead of a walk, but the focus of the plot isn’t her disability, it’s (insert Lifetime movie trope here) her character’s career as a romance writer and the widowed, very attractive guy she falls for while staying at an inn during the holidays.
As Stroker said in an interview with USA Today: “Those narratives are so powerful for young people, because you understand that that can be you. You can have your love story. The other piece of it that’s so important to me is that…It doesn’t have to be about disability. That doesn’t have to be the conflict. That doesn’t have to be the character’s storyline. And that’s exactly what this movie has done. There’s really no conversation about the disability, and what’s so beautiful, I think, about being in a wheelchair, is it’s just always a part of the story, but we don’t have to talk about it. It can be there and exist and now you are in my world. So I think there’s a lot of power in that.”
I have mild Cerebral Palsy. Growing up in the ’80s and ’90s, I never thought much about what we now call inclusion or the need to see actresses like Ali Stroker on screen.We had American Girl Dolls in the 1990’s, but in 2020 they released the first doll with a hearing impairment, Joss. When I was child and a teen, I rarely, if ever, saw people with disabilities in magazines or in movies or on TV, with the notable exception of Chris Burke in Life Goes On, and later Marlee Matlin as Joey Lucas on The West Wing. Sometimes, I saw representations in books–like Colin in the Secret Garden, who wasn’t really disabled only weak, because of inactivity, ditto Heidi. I skipped Judy Blume’s Deenie–I was too busy reading Jane Austen. What I did think about and want was to fit in with my peers. What I really wanted was to be seen and accepted as whole, as equal, with my disability. Maybe representation would have helped with that.
Disability Representation in the Classroom
Representation matters in the classroom, too. Though we think of people with disabilities as a minority, it’s a large one. It is a minority that intersects race, class, gender, sexual identity, and age. In 2018 and 2019, 7.1 million students qualified for services under the Individuals with Disabilities Education Act or IDEA. That’s 14% of all public school students in the U.S. 33% of those students have specific learning disabilities and the rest live life with a variety of visible and invisible disabilities. If you’re a classroom teacher, you likely have one or multiple students with disabilities in your class. You are familiar with IEPs and accommodations, but what about inclusion?
Teens with disabilities are often like their non-disabled peers. They want to fit in. They want friendships and autonomy. They may have romantic interests. Many, if not most will have social media accounts and extracurricular activities. They will all have joys and sorrows. Children and teens with disabilities may face more incidents of bullying, and often they are trying to navigate a space where their disability may be more noticeable–because buildings and classrooms have not traditionally been built to accommodate those with disabilities.
I planned this post to talk about representation and books featuring characters with disabilities, but classroom design is very important and can impact inclusion, too.
Introducing Books and Talking about Disability in the Classroom.
Do the students in your class (disabled or not) see themselves in your school or classroom library? Do you ever introduce an author with a disability to your class or talk about the disability experience? How do you introduce literature featuring characters with disabilities without making it a one and done exercise?
Introduce books featuring characters with disabilities just as you would any other book. Talk a little about the plot and the main character and why you think their story is important (Hint: it’s not always because the character has a disability, that’s just one aspect of the story). Often these books are realistic fiction or coming of age novels, sometimes they are fantasy or sci-fi. Be careful with books that present healing or overcoming tropes in any genre. If you don’t have time to read a book yourself before putting it in your classroom, check review sources like School Library Journal or Kirkus for reviews. Your librarian may have digital or print subscriptions to a review source, ask them about it.
Please don’t single out your students with disabilities when introducing these books. Just like every human on the planet, students with disabilities have other interests and the ability to relate to their non-disabled peers on many levels. Don’t make them the token spokesperson, or assume that because they have a disability, they will always want to read about characters with disabilities. Additionally, these books should not be promoted as inspirational for your non-disabled students. The value of these books is that when well-written they can show the reality of living with a disability while navigating the rest of life.
It is okay to talk about disability with your students, it’s part of life. Please talk to your students about the impact of their language and the words they use, especially the R word. Talk about using the proper names for disabilities and person-first language.
#ownvoices authors are needed here. People with disabilities writing about disabilities can help portray real and full depictions of life with a disability. Not that a disabled character can never be written by an able-bodied person, but as in so many other areas, experience, and viewpoint matter. The author’s note, the book flap or the author’s website can be helpful in determining if the author has a disability or works with the disabled community. There is also a need for more intersectionality in disability representation. Currently many of the characters with disabilities in books for children and teens are white and female.
Include books featuring characters with disabilities in your classroom. If you need recommendations, ask your school librarian or public librarian, they should be able to help you track down some good titles. Again, these aren’t just disability books, so display and organize them the same way that you do the rest of the books in your classroom. Include books featuring characters with visible and invisible disabilities. Just as there isn’t one story for any diverse population, there isn’t one story about disability.
Check out the author’s note in these books, many authors have taken the time to research for their books and/or include resources that let the reader know more about the disability. These resources may be helpful in talking with your students about disability.
The Schneider Family Book Award
Finding quality books that represent the whole person while not glossing over the reality of disability can be a challenge. The Schneider Family Book Award list can be a great place to start. The award endowed by Dr. Katherine Schnieder, who is blind herself, exists to “honor an author or illustrator for a book that embodies an artistic expression of the disability experience for child and adolescent audiences. The book must portray some aspect of living with a disability or that of a friend or family member, whether the disability is physical, mental or emotional.”
There are three age categories for the Schneider Family Book Award: Young Children (ages 0-10) Middle Grade (11-13) and Teen (13-18). I read the middle grade and teen books for 2020, but the 2021 list will be available by the time this post is published.
In 2020, the Schneider Family Book Award Committee named a winner and an honor book for each age category. The Middle-Grade Winner was Song for a Whale by Lynne Kelly. The Middle-Grade Honor Book was Each Tiny Spark by Pablo Cartaya. The Teen winner was Cursed by Karol Ruth Silverstein. The teen honor book was The Silence Between Us by Allison Gervais.
Books for Adults
I read two non-fiction memoirs that share different aspects of life with a disability, and the fight for disability rights. I highly recommend them. You may want to consider using chapters from these books with high school/AP or college students.
Taussig, Rebekah. Sitting Pretty: The View from my Ordinary Resilient Disabled Body. Rebekah Tausig discusses her life as a person with a disability and some of the stereotypes people with disabilities face. I found this book highly engaging, at times hilariously true, and always on point. You can find out more about Rebekah at her website: https://rebekahtaussig.com/
Heumann, Judith. Being Heumann: An Unrepentant Memoir of a Disability Rights. Judith Heumann contracted Polio before age two and became a wheelchair user. As a disability rights activist. She and eighty others staged a protest by taking over several government buildings in 1977. They were protesting the fact that the government had failed to enforce section 504 of the Rehabilitation Act. Heumann and those with her paved the way for the passage of the ADA act in 1990. She has worked for the Clinton and Obama Administrations and had a long career as a disability rights advocate.
Ted Talks and YouTube Videos
Videos can be a bridge to conversations. These videos would probably be most appropriate for a high school or college classroom.
I am not your Inspiration Thank You Very Much by Stella Young
A Teacher and Disability Advocate, Stella Young talks about her teen years, teaching, and why disabled people are not “inspirational”.
Our Fight for Disability Rights–and why we’re not done yet by Judith Huemann
Huemann talks about the discrimination she faced trying to get her teaching license and how it paved the way for work as a disability activist and advocate.
Meet British photographer Oliver Hellowell and his mom Wendy as they talk about Oliver’s photography and life with Down’s Syndrome.
An animated video explains how people with autism may process thoughts and feelings.
Final Thoughts
Recently my colleague Sarah Donovan and I did a study with pre-service teachers and their attitudes toward Young Adult Literature featuring characters with disabilities. It will be published in English Education later this year. We found overwhelmingly that the students we interviewed only encountered a discussion about disability in their special education class. In their English and Social Studies and children’s or young adult literature classes, disability was never discussed, no authors with disabilities were introduced in the curriculum. We have to change this! When I came into academia, my goal was never to write about disability because I didn’t want my professional life to only be about my experience as a person with a disability. Doing this study showed me how much more work we need to do so that students with disabilities have a place in our classrooms. So I am sharing the thoughts and resources above in hopes that you won’t just see it as “one more thing” you need to include in an already full curriculum. I hope instead that you will see that including disability in your curriculum will create a fuller view of life and experience for your students.
Thank you, Rebecca, for the reminder that teachers must mindfully select books to introduce in their classrooms. What a joy it is to watch our students become empathetic as they read a variety of books.
Hi Mo,
Thanks for reading!