Demystifying Disability

Kids Included Together was founded on a goal to help society view disability as a natural part of life. For almost 25 years we have focused on changing attitudes toward disability, changing practices in classrooms around the world, and changing the lives of individuals who work with children, and the families they serve through our disability inclusion training and support programs. We know that kids are stronger, and communities are healthier, when everyone is included. So, we could not be more excited about the new book Demystifying Disability: What to Know, What to Say, and How to Be an Ally, by Emily Ladau. Emily is a KIT Board Member and she has written a book that is required reading for every Inclusionista!

This fall, KIT staff and board are engaging in a group read-along of Emily Ladau’s new book Demystifying Disability: What to Know, What to Say, and How to Be an Ally. We invite you to join us! Read-Along Kick-off is the Week of October 11th.

Where to Find the Book:

Libro.fm (audiobook narrated by Emily Ladau)

How to Participate in the Demystifying Disability Read-Along:

Individuals – Get a copy of the book and use the schedule below as your reading guide. The Questions for Discussion will be posted on KIT social media channels every Friday. Please join the discussion by posting your responses and engaging with others.

Teams- Would you like to host a Read-Along for your workplace? Make sure everyone has a copy of the book and use the questions, resources and challenges to run your own version of the Read-Along on the schedule that makes sense for your team.

Week of October 11th
Chapter 1 - So, What is Disability, Anyway?

QUESTIONS FOR DISCUSSION

As you read chapter one, what terminology did you recognize as still in use in society? What needs to be updated in the way we talk about disability? Was there any terminology in your own lexicon that needs updating?
Pay attention to your casual language for a one-week period. Are there ableist words and phrases that you have a habit of using (like crazy, lame, or insane)? What descriptive words can you come up with to replace those you’d like to eliminate from your speech (like absurd instead of crazy)?
As Emily identifies in Chapter One, functioning labels are not an effective way to describe people’s support needs. This topic is particularly relevant to kids in schools and youth programs, where a functioning label may stick with them and cause them harm or limitations. As a way of thinking about this, let’s try it on ourselves. Can you identify one area of your life where you can perform the skill with no assistance, and then one area where you need support to perform the skill? What would it feel like to have all of your skills and abilities labeled with one term?

RESOURCES FOR FURTHER EXPLORATION

Casual Ableist Language. Annie Elainey. April 5, 2016.

Intelligent Lives. Directed by Dan Habib. LikeRightNow Films LLC, 2018.

TAKE THE CHALLENGE!

Ableist Language Challenge- The objective is to replace ableist terms with a neutral synonym. Grab a partner. One partner will select and read terms from this list and the other will replace the word with a different one. Try to move quickly and see how many more descriptive and non-stigmatizing words you can think of!

Week of October 19th
Chapter 2 - Understanding Disability as Part of a Whole Person

QUESTIONS FOR DISCUSSION

In this chapter, Emily uses pizza as a metaphor for disability identity. She says that, “While every pizza has a crust, it’s the toppings that make each individual pizza what it is. And even though millions of pizzas are made with the same toppings, no two slices are exactly alike.” What toppings are on your metaphorical pizza that define how you experience the world? Can you see how a person who identifies as having a disability may be influenced or impacted by a variety of factors?
Have you had an open and honest conversation about disability with a friend or family member? What do you learn or gain from the conversation?
As advocates and allies, how can the models of disability help us?

RESOURCES FOR FURTHER EXPLORATION

I Got 99 Problems...Palsy Is Just One. Maysoon Zayid, TED. December 2013.

TAKE THE CHALLENGE!

Pick one of the hashtags Emily lists in the Resources section and follow it on your favorite social media platform. Review some of the posts and find a few people you would like to follow and learn from.

Week of October 16th
Chapter 3 - An (Incomplete) Overview of Disability History

QUESTIONS FOR DISCUSSION

In this chapter we learn about the major pieces of legislation that impact disabled Americans. Change in policy happens, in large part, due to the organized efforts of advocacy groups, (like the 504 sit-in and the Capitol Crawl). How does advocacy and public policy shape the opinions of the general public? Do you think that public opinion changes laws or laws change public opinion?
The Individuals with Disabilities Education Act (IDEA) is the most important piece of disability rights legislation for children. And yet, the implementation of the law has never been fully funded by the federal government. If you were a legislator, how would you influence others to prioritize the needs of children in grades K-12?
This chapter describes the many different movements within the broader disability community. As professionals who serve children, the Self-Advocacy Movement is important to understand. What can we do as professionals to help children and youth begin to advocate for themselves in their daily lives?

RESOURCES FOR FURTHER EXPLORATION

“Judy Heumann Fights for People with Disabilities.” Drunk History, Comedy Central.

“Commemorating the 30th Anniversary of the Americans with Disabilities Act.” Now THis News. July 26, 2020.

"‘Nothing About Us Without Us’ 16 Moments in the Fight for Disability Rights.” New York Times, July 20, 2020.

TAKE THE CHALLENGE!

Visit the Disability History Museum site at https://www.disabilitymuseum.org/dhm/edu/overview.html and search Browse Lessons on the right side of the home page to find out more about events of the pre-20th Century time period.

Week of November 1st
Chapter 4 - Ableism and Accessibility

QUESTIONS FOR DISCUSSION

One of the first and most important things an inclusion advocate can do is to unlearn ableism. Emily defines ableism as, “Attitudes, actions, and circumstances that devalue people because they are disabled or perceived as having a disability.” What are some actions we can take to unlearn ableism?
Think about all the places you frequent, both bricks and mortar and virtual. Where is more accessibility needed? Who is being left out?
How do ableism and inaccessibility affect children and youth?

RESOURCES FOR FURTHER EXPLORATION

“200 Years, Countless Stories- Haben Girma ‘13” Harvard Law School. September 19, 2018.
(Check out the San Diego connection- KIT HQ is in San Diego!)

TAKE THE CHALLENGE!

Make sure the next image you post on Twitter or Instagram is accessible to disabled users. Watch this video by Andrea Lausell "3 Ways to Make Your Content More Accessible for Disabled People" for ideas and information.

Week of November 8th
Chapter 5 - Disability Etiquette 101

QUESTIONS FOR DISCUSSION

What are your main takeaways about disability etiquette?
What aspects of disability etiquette can we teach children?
As allies, we are likely to spot ableist behavior in our daily lives. Have you had the experience of “calling out” or “calling in” someone, and how did you decide which method to use? How did it go?

RESOURCES FOR FURTHER EXPLORATION

“Don’t Look Down On Me.” Jonathan Novick

TAKE THE CHALLENGE!

Select one Disability Etiquette “DO” and teach it to a child or children in your life. Maybe you will pick teaching them to not approach a working dog, or to not touch a person’s mobility equipment without permission. What will you choose and how will you teach it to a child in a disability positive manner?

Week of November 15th
Chapter 6 - Disability in the Media

DISCUSSION QUESTIONS

What types of stories about disability do you see told most often? Where do you see them?
What positive disability representation have you seen in media? What makes it authentic?
An intergalactic alien lands on your front porch. It wants to learn more about the disability experience on earth. You hand it your iPad and suggest a few shows or movies. What do you recommend?

RESOURCES FOR FURTHER EXPLORATION

“I’m Not Your Inspiration, Thank You Very Much.” Stella Young, TED. April 2014.

“Inspiration Porn, Paralympians Know It When They See It.” Gwen Knapp, New York Times, September 5, 2021.

“Comedian Laurence Clark Demonstrates Why He Hates Being Called Inspiring.” Laurence Clark. August 25, 2012.

TAKE THE CHALLENGE

Diversity your bookshelf! Check out this list of children’s books about Disability and Mental Health on Bookshop.com (curated by Inclusive Storytime). Pick a book and read it to your child or your students. Or purchase one as a holiday gift for a child in your life.

Week of November 29th- Celebration event on Friday, December 3rd
Conclusion: Calling All Allies and Accomplices

QUESTIONS FOR DISCUSSION

Did the book cause you to reflect on your motivation for wanting to be an ally to disabled people? What did you discover?
How do you feel about Autistic activist Reyma McCoy McDeid’s definitions of allyship (to help people who are marginalized in some capacity to make the most of their life in this unchanged system) and accomplice (to work side-by-side with people who are marginalized, to confront the system and contribute to shifting it accordingly)? Do these labels change the way you think about the work?
In this concluding chapter, Emily gives a variety of actionable ideas to help make the world a more inclusive place. Which will you commit to do now and in the future?

RESOURCES FOR FURTHER EXPLORATION

Want to continue your journey and read another book about disability culture and experience? Here is a list of Own Voices Books About Disability.

TAKE THE CHALLENGE!

Share Demystifying Disability: What to Know, What to Say, and How to Be an Ally with a friend, family member, or colleague!