I recently had a fantastic conversation with a client of Nardi Media and author of Loving You Big, Leah Moore. In our discussion, Leah talks about her book, opens up about her personal journey as a high school teacher and mother to a child with a rare disorder, shares insights about implicit bias as it pertains to those with disabilities, and gives advice on how to use your voice to advocate for those with disabilities.
Keep reading for some highlights from this important conversation!
- A: Your first-born child was diagnosed with Cri du Chat. Tell us about that.
- L: When my daughter Jordan was born, she was adorable and we were exhausted as all new parents are, but as she turned nine months old, we started to notice that she stopped meeting any milestones or developing in any way. When she was 18 months, she was diagnosed with Cri du Chat, which is the deletion of the fifth chromosome. The doctors told us that she might never walk or talk, but fast forward to today and now she’s 10-years-old and she dances and sings her way through the world. She has overcome a lot of things we were told she wouldn’t be able to, which led me to write my book!
- A: Speaking of your book, one theme that stuck out to me was the need to shift the narrative for people with disabilities in our society. Can you talk a little bit about that?
- Leah: I teach ninth-grade English and we talk a lot about the book, The Danger of a Single Story, and how a single story is perpetuated or interrupted as it gets passed in the world. And when I relate that idea to my own life, the lens that I see is that most people are more likely to learn about a disability through a book rather than interacting with someone because of the way that schools are set up. Our implicit biases make us believe that disability should be mourned and these kids need their own space. What I want to do with my writing and my work is to really talk about what it looks like to be a family behind that diagnosis. There is a lot of sadness, but there is also so much joy and if we only tell that sadness, we’re only going to perpetuate the stereotype.
- A: What did you learn about yourself during the writing process?
- L: I started writing because I was trying to model for my students what a personal narrative looks like. They were struggling with the assignment, so I wrote about how ironic it is that my husband is a theater teacher and I’m an English teacher, and how we’re raising a child who will never be able to tell stories the way we do. What I ultimately realized doing this assignment is how many of these biases I accidentally let in. I grew up in a very inclusive community, but because I didn’t see people with cognitive disabilities in my school or in my town, I learned that disabilities were something I could put away, and I didn’t realize how much of that I absorbed and how much of that I had to work through until this assignment. I share that journey as a mom and advocate in my book.
- A: And being a mom you also talk about self-care, which I can relate to being a mom myself! What does self-care look like for you?
- L: I believe the issue with self-care is that we see self-care as what I like to call, these shallow little sips of air: go get a manicure, go take a walk, go call a friend. Yes, doing these things will momentarily make you feel better, but if there aren’t larger self-care structures in place whether in your community or at home, those little sips of air don’t keep you going. Being a parent to a child with a disability can feel really isolating, but if we grow our community, we can lean on each other in different ways. The other problem is, so many people feel guilty about taking time for themselves. In addition to having a daughter, I also have twin boys who have their specific needs, so it gets hard to pull away, but it’s about overcoming mom guilt and finding a community to lean on.
- A: Here’s a startling statistic I want to share: 2 out of every 7 families have a family member with a disability. That’s 54 million people in the US alone. And 1 in 10 people is diagnosed with a rare disability. So obviously your book relates to so many families. What is your message to these families and what do you hope your book does for them?
- L: My number one message is to validate all of their emotions and experiences and make sure they know that nothing they’re going through has to be done in isolation. For the families who don’t have a child with a disability but know someone who does, my mission is to help them grow their empathy. So I think that’s why this book speaks to everyone regardless of whether or not their families are like mine.
- A: How can parents find their voice to be their child’s advocate?
- L: I learned from a mentor that you speak even when your voice shakes. So even if you’re not confrontational or you don’t want to say something, your face gets red no matter what. It’s knowing what you need for your child, whether it’s a meeting with your child’s teacher sharing the educational services your child needs, or if it’s something much smaller like modeling proper behavior and social interaction on the playground. When Jordan meets someone, she wants to know everything, and sometimes her questions can be inappropriate, so for me it’s about navigating and modeling how to behave and showing her what kinds of questions are appropriate to ask.
- A: What advice do you have for parents who are navigating and managing their child’s disability while advocating for your child, and at the same time, taking care of themselves?
- L: Knowing your own disposition and when you’re energized in a day is so important. Maybe you prefer support in a social setting, or maybe you need to be alone and reflective first. It’s about not losing that entire sense of self and knowing what brings you joy. For me, I grew up singing, but music disappeared from my home because it’s too much for Jordan, so now I put in my headphones, take a walk, and listen to music, and that re-centers me and brings me back to who I am. It’s about remembering that you are a person in addition to an advocate. Don’t forget to tap into your community. There are also plenty of resources on the internet and social media!
- A: I love that. What if you’re a new neighbor to a family who has a young child with a disability? What are the best ways someone can support them?
- L: First, ask them how you can help. Know that they might say no thank you, but also know that they’re probably lying! Maybe it’s dropping off food once in a while if you’re already at the store. Or based on your own comfort and the needs of that child, offer the family to come over and say hi while you and the kids play in the backyard. You’ll be modeling appropriate behavior for your kids, and your neighbor will be thankful that you are a safe space to land.
- A: What insight do you have to share on implicit bias and educating ourselves as friends or family members of children with disabilities?
- L: Ask yourself what you’re doing to learn what you already might not know. It’s human nature to stay comfortable, and that includes the TV shows, books, and podcasts we consume. If you’re someone who doesn’t have or know anyone with a disability, you might not naturally gravitate toward consuming any content about disabilities, but you can audit your own life by asking yourself if and how you’re learning about individuals who are different from you.
- A: And I think the first step is grabbing a copy of your book Loving You Big! What has your journey taught you about teaching and speaking on larger societal issues like the treatment of people with disabilities and what advice do you have for others to find their voice and make an impact?
- L: Every voice is welcome and everyone has the power to speak out. I think it’s so important to hear people in your life tell you that you have something valuable to say. It’s also important to know that it’s not about the followers you have, and spreading this message doesn’t have to happen all at once. I love the art of the personal narrative because it takes any story and finds a universal truth underneath. When we move through our day, we’re telling stories all day long that are connected to universal truths, whether it’s jealousy or fear, so I would encourage people to read, journal, talk, and remember that your voice matters in whatever way it wants to come out – but it’s never too late to find it.
- A: That really hits home for me because I can relate! Nardi Media was so honored to be a part of your book launch, so I’d love to hear about the writing and book launch process.
- L: As confident as I was in telling my story was as not confident I was in getting it out there! I took a lot of classes and listened to a lot of people talk about their book journey and I realized I didn’t know what I was doing. But once I landed in your hands I was taken care of in the way I needed. I truly feel that working with you has changed the trajectory of my life. I was in ESPN and Forbes, and I was so proud to have my daughter there with me for some of it. Now, more opportunities are opening up that I never thought were possible. For any new authors, I can’t recommend Nardi Media enough!
- A: That makes my heart sing! This is why we do the work that we do, because I know how powerful the media can be in sharing voices that need to be heard like yours, and give authors and experts like you the platform to do it. So, what’s next for you?
- L: I’m brainstorming a podcast to help other families tell their stories. I’m working on a children’s book in which the main character will have a cognitive disability. I’ve also been speaking with medical schools to talk about the family behind a diagnosis and talk about the whole child. I’ve been invited to be a guest speaker for several organizations around the U.S. But the biggest piece for me was going from feeling alone before my book launch, to then getting all of these emails after my book launch from people saying they’ve seen my story and they feel seen. That has been the most rewarding part.
- A: The world needs your message and I’m so honored that you’re sharing it now through your book launch and soon in these other ways! Any final parting words?
- L: I’d like to express my utter gratitude and a huge shoutout to Wendy, my publicist through Nardi who’s worked with me on my book launch campaign! But I will say that with the holiday season and the challenging times we still face, I think that giving the art of a story is the most incredible thing you can give to someone else. Take a minute and write out a card, a memory, or what someone’s meant to you. It can mean so much. If you’re not sure what story to tell, you can share mine, but sometimes saying “here’s a story I read and it made me think of you” can be so meaningful. It doesn’t cost a thing and no one cares about your grammar or spelling!
For more on Leah and Loving You Big, go to:
- Instagram – @lovingyoubig
- Facebook – leah.witmanmoore
- Twitter – #lovingyoubig
- YouTube – https://youtu.be/MAywVXnY5Y4
CLICK HERE to watch the full IG LIVE with me and Leah!