How an Eight-Year-Old Girl Made Disability History: A Conversation with Activist Jennifer Keelan-Chaffins and Children’s Book Author Annette Bay Pimentel

When we see a wheelchair ramp or braille on an elevator, most of us don’t know that there’s a history behind these now commonplace sights. Disabled activists fought long and hard for the landmark legislation that made such accessibility a requirement.

Thirty years ago, on July 26, 1990, President George H.W. Bush signed into law the Americans with Disabilities Act (ADA), which prohibits discrimination against people with disabilities and requires that public buildings and transportation be accessible to them. 

What almost no one remembers is that an eight-year-old girl helped ensure its passage. Until now, that is.

A new children’s book, All the Way to the Top: How One Girl’s Fight for Americans with Disabilities Changed Everything, is the story of Jennifer  

Keelan-Chaffins, a child with cerebral palsy who joined the adults in protest and crawled up the Capitol steps. Footage of her courageous act touched hearts and minds. “When she was born, she had her fist clenched in the air. We just let her do the rest,”  her mom, Cynthia Keelan, told DL last week. “She was a very strong advocate.”

Now 39 years old and still a disability rights activist, Keelan-Chaffins worked with award-winning children’s book author Annette Bay Pimentel  to bring her story to life. Pimentel writes about American history for kids, especially about little known people who did something to shape the world we live in today. Mountain Chef is about Tie Sing, a Chinese-American chef who helped with the passage of the National Park Service Act, and Girl Running is about Bobbi Gibb, the first woman to run the Boston Marathon. Together with illustrator Nabi H. Ali they  crafted a book meant to inspire young people and all of us. 

DL sat down with Pimentel and Keelan-Chaffins last week to talk about her story, the ADA, and what change they hope to spark.

How did this book come about?

Pimentel: I was looking for a new book topic, and I thought of the Americans with Disabilities Act. That law has profoundly changed our society, but I didn’t think kids today had any perception of the way the world would be without it. It’s a danger when we forget where we’ve come from, so I knew the ADA was what I wanted to write about. I didn’t yet know Jennifer, but as soon as I started reading about her, I realized this story is about much more than a law. It’s about the power of a child—a girl—to promote change. 

Keelan-Chaffins:  Annette was the first person to ever ask me about my involvement in the Capitol Crawl and passage of the ADA. I liked that she wanted to tell my story from my eight-year-old perspective—how I felt being involved in such an important part of history.

Jennifer, can you tell us a little bit about what it was like being this eight-year-old kid and doing what you did and then getting a lot of press attention, being a player in this historic moment?

 Congress was stalling the passage of the ADA. I wanted to be there when a coalition of disabled activists decided to get out of their wheelchairs and crawl up the Capitol steps to demand that the bill be  made into law. I was already a seasoned activist by then.

There were some adults who didn’t want me to do the crawl because they thought it would be too physically taxing for a child. They were also concerned that having an eight-year-old do the climb would give the wrong image. It would give an image of pity versus empowerment. 

How did you feel about that?

I was upset. I told one of the leaders about it—that some of the adults didn’t want me to climb. And he turned to me and said, “You need to do what’s in your heart.” 

So you took the plunge.

Yes, I didn’t look back and started doing the climb. It was a very hot day, about 80 degrees. The next thing I know, I hear all these people down below. The crowd had gotten really big. The further up the steps I went, the more I felt empowered. I felt like I had all of the other kids behind me [who couldn’t be there]. I felt that it was important, not just to represent myself, but to represent them and their voices. 

I realized that that was a great responsibility. I wanted to make sure that not only my generation of kids with disabilities would be represented, but future generations of kids with disabilities as well. 

This week is the 30th anniversary of the Americans With Disabilities Act: What’s important about the ADA?

Keelan-Chaffins: First and foremost the ADA is a civil rights law. It’s a disability rights law that is our Emancipation Proclamation. 

You must have had amazing parents who were willing to support you in being an activist from such a young age.

 I did, I had an awesome family. I was an activist starting at age six.

The book is very engaging. You feel like you’re part of Jennifer’s struggles as a disabled kid in a world made for abled people.

Pimentel: I wanted kids to be able to identify with Jennifer. I think teaching empathy is a really important thing books can do. A r  Readers puts themselves in someone else’s shoes. 

Before the pandemic hit, Jennifer and I presented at schools together. When we read the book to the kids, the strongest emotional reaction that we got was the page where the kids in Jennifer’s class tell her that she’ll never belong. There’s an audible gasp.

 That’s amazing.

 I think it’s because it’s such a clear expression of what everybody worries about. We all worry that we’re going to be rejected. Kids came up to us afterwards and said to her, “I’ll be your friend.”

Jennifer, how did they respond seeing you as a grown woman? 

 What was most impressive for them was not just to learn about what I did as a kid, but to meet me as an adult and learn about what I’m doing currently. That I’m still an activist for disability rights.

Jennifer, what stands out for you about your involvement in the passage of the ADA?

One of the many great things about the ADA is that it did bring all of the groups together, and we were focused. We had one unified voice and that was to get the ADA passed into law. We need to go back to the one unified voice and demand our rights—demand that our rights be enforced. 

The ADA has given us great progress. It’s given us physical access. We have ramps and braille panels and those things that we need for physical access. But we still have to work- on the attitudinal barriers that people with disabilities face every day.

Annette, what’s your hope for this book?

 My hope for the book is that it will be a vehicle for children to realize that their voice matters, and that just because someone is a kid, doesn’t mean that they can’t effectively create change. And so we’re hoping that this will be a book that teachers and librarians will use in the classroom, to both help kids see what they have, the power that they have, and also to talk about the importance of inclusiveness. 

We’re also hoping it’s one that families pick up. I think it’s the ultimate eight-year-old birthday gift, because it’s about how an eight-year-old nudged the world to move it forward.