Social Impact Authors: How & Why Kimberly L. Sanders of ‘Beside You’ Is Helping To Change Our World
An Interview With Edward Sylvan
…I also want to remind others that our humanity is not about what we can do, but about who we are. As a society, we put a high value on efficiency and achievement, but our children remind us that our humanity can get lost in that shuffle. These qualities are not strengths in Lukas’ life, others will always be more efficient or more successful, but he points to qualities that I believe we are quick to neglect: celebrating the smaller things in life, learning the power of delayed gratification, and forgiveness.
As part of my series about “authors who are making an important social impact”, I had the pleasure of interviewing Kimberly L. Sanders.
Kimberly L. Sanders whose son Lukas has a dual diagnosis of Down syndrome and autism is on a mission to change the narrative around Down syndrome. In her first book Beside You, Sanders generously shares the unpredictable struggles and rich lessons learned through Lukas. Beside You is a powerful and grace-filled memoir told in vignettes, covering the first 10 years of Lukas’ life. Sanders attended Indiana University and received her BA in English & Theater. Later, she received her Master of Arts in Teaching from Wheaton College. She worked as an actress in Chicago and then taught high school English for 14 years. Sanders integrated those passions when she adapted and directed literary works for the stage. She now leads “Listen to My Life” groups in Sanibel, FL, where she currently lives with her family.
Thank you so much for joining us in this interview series! Before we dive into the main focus of our interview, our readers would love to “get to know you” a bit better. Can you tell us a bit about your childhood backstory?
I was raised in the Midwest in a French country home my dad built. My parents were high school sweethearts and have been married for over 55 years. Since my dad was a residential developer and my mom decorated some of their model homes, they both were very good at creating an atmosphere of beauty. I was always witnessing how the mundane or ordinary could be transformed. They took our yard, a former chinchilla farm, and made it lush with small statues, pergolas, and bright flowers peeking through. And they filled our home with interesting furniture and collectibles from their travels. Yet the best beauty in our home was their great love.
It was a childhood of playing wiffleball with my brothers, eating from the garden my grandpas created, singing songs as my dad played the piano, and dressing up for my mom’s photoshoots. I am very grateful for the soil I was planted in.
Our hometown is about 50–60 miles NW of Chicago, so my parents would take me and my brothers to see dance and theater quite often. From a young age, I loved the arts. My neighbor and I would make up endless dances at the bus stop in the morning and then get together after school to make up more. My mom was a high school English teacher, so she was always introducing me to new books, and I became quite taken with a wide assortment of storytelling.
In my twenties, I moved to Chicago and joined Center Theater Ensemble, a place where I acted and helped build their children’s theater program. Later, I decided to go to graduate school so I could teach high school English and direct plays. I have noticed that the thread of storytelling runs through all of my loves.
When you were younger, was there a book that you read that inspired you to take action or changed your life? Can you share a story about that?
The book that changed my life and continues to change my life is the Bible. There is no other piece of literature that I have wrestled with more, been convicted by more, or inspired by more. Jesus knew the power of stories, so he taught in parables, urging his listeners to seek out the deeper, layered meaning to his words. He is the teacher I admire most. He taught with his life, not just his words. His teaching was steeped in purpose, and he was infinitely committed to his students.
Another writer I return to is Arthur Miller. His plays often reveal how we can take actions that seemingly have good intentions, but because we are chasing the wrong thing, those actions can end up destroying ourselves and others. One scene that continues to replay in my head is from Miller’s play “All My Sons.” The father, Joe Keller, wanted to preserve his business to provide for his sons, so he allowed 120 cracked engine heads to be sent out to those fighting in the war. Pilots were killed because of their actions. When his son, Chris, learns what he did, he is horrified that his father would have put his business above all of these men. Joe ultimately realizes they were “all my sons.”
As parents, we have a good desire to protect our own children and fight for them, but we can’t let that passion blind us to ALL the kids who need our care. We belong to each other in a profound way, and it goes beyond our small circles. Arthur Miller reminds me to regularly reflect on my values and evaluate whether my life is living those out or succumbing to a lifestyle I don’t want to live.
Can you share the funniest or most interesting mistake that occurred to you in the course of your career? What lesson or take away did you learn from that?
When I was teaching high school, we gave the seniors a final film project. After studying a specific director, they were to make a movie incorporating that director’s sensibilities. A group of boys who chose Quentin Tarantino decided to film one of their scenes late at night using fake guns. A neighbor became frightened by all the commotion and called the police. So, the next day a message from a police officer awaited me. The officer told me all the ways this assignment could have gone very wrong, and he asked me why I hadn’t let the police know about this project.
The truth is I was so wrapped up in the students taking creative risks that I had failed to think through the parameters they needed. This moment reminded me how important it is to have a mentor. I needed to be asking someone, “What am I not thinking of?” “What are my blind spots?” “What are the questions I need to be asking myself?” “Who are the people I need as resources?” Ultimately, I learned that we need people who have gone before us, and we need to collaborate with those in our midst.
Can you describe how you aim to make a significant social impact with your book?
The title of my book speaks to my heart’s desire and that is for families to know they are not alone: we get to stand beside one another. The IEP meeting (individualized education program) we attend each year for Lukas is comprised of 6–8 people who are all invested in Lukas’ growth. I think that model is what we all need in our lives. We need to build a table of people who will help us notice where we thrive, highlight how we have grown, and identify what our next action steps should be. This is why inclusion is so important. Not only so our special needs children can be full members of their community and learn from their peers, but also so we can learn from them. When we bump up against each other with more regularity, our misconceptions can be dismantled.
I also want to remind others that our humanity is not about what we can do, but about who we are. As a society, we put a high value on efficiency and achievement, but our children remind us that our humanity can get lost in that shuffle. These qualities are not strengths in Lukas’ life, others will always be more efficient or more successful, but he points to qualities that I believe we are quick to neglect: celebrating the smaller things in life, learning the power of delayed gratification, and forgiveness.
This thinking doesn’t just impact the disabled community, I also see how it impacts the elderly community. What happens if ability and proficiency become our highest values? Doesn’t that lead to us losing our value as we age?
Our worth has to be connected to our being or we will find ourselves heading toward a despairing end. We are all being invited to redefine what makes us human.
Can you share with us the most interesting story that you shared in your book?
I will save some of the stories that led to the title since I think they need more history and context. Instead, I will share one of the stories that led to my subtitle: how Lukas’ special needs revealed mine. I was in the midst of a Music Together class with my kids when things began to unravel. They were both up to no good! Lukas was running up to parents and grabbing glasses or phones, and Sarah was heading straight to a guitar that was off-limits. I felt like I was tripping over myself to try and wrangle them in. Soon I could hear the flood of shame’s whispers: “You aren’t enough for this.” “You need too much help.” “Why can’t you have it all together like the other moms?” Thoughts like these just made me want to stay home and hide.
Yet I realized that my battle cry for Lukas was to never let him see his dependency as an occasion for shame. I didn’t want him to stay home and hide; I wanted him to engage with the world in the midst of his needs. I was learning that our needs are not an occasion to escape other people but an opportunity to engage with people. When we have to rely on other people, we are given the invitation to build a community around us. Our needs are weaving our lives together. I can’t tell Lukas to see the beauty in his special needs unless I am willing to start seeing it on my own.
What was the “aha moment” or series of events that made you decide to bring your message to the greater world? Can you share a story about that?
Since my husband had been away on a work trip, I arranged for a babysitter in hopes of rejuvenating. I decided to sit at the water’s edge and reread my writings on motherhood; I really just wanted to go down memory lane. However, as I read, I began to see a book about Lukas emerging from those pages; this was completely unexpected! I was immediately flooded with ideas. I really paid attention to how much this possibility excited me.
Later I remembered a quote from Maya Angelou. She said, “I’ve learned that you shouldn’t go through life with a catcher’s mitt on both hands; you need to be able to throw something back.” I had been in a season of reading female non-fiction writers, and I realized it was my turn to join the conversation. I had the opportunity to give back to others as so many writers had poured into me.
From there I intentionally looked at how other writers framed their memoirs, and I noticed that most of the books in the special needs arena focused on the first year or so. They were designed to help families walk through their initial feelings after receiving a diagnosis. Since Lukas was already eight years old at the time, I decided my book would cover his first ten years. I sensed there was a need to talk about our children beyond their infant and early childhood years.
Without sharing specific names, can you tell us a story about a particular individual who was impacted or helped by your cause?
Since my book hasn’t been released yet, I can’t fully answer this question. My hope is that it changes how we think about our needs and people who have special needs. I want people to witness how our needs invite us into the community.
Although I can’t speak to how this book will impact others, I can speak to how it has impacted me and Lukas. As I have processed pointed moments in our past, we now have breath prayers to turn to. These all have a story that accompanies them in the book, but for example, I will often say to him “always we begin again” when our day starts to veer down the wrong path, or “manna for the day” when I feel overwhelmed and need the reminder that God will give me enough for each moment. We all need words that can center us again. Writing this book has helped me strengthen my voice, so I am better able to advocate and serve people with disabilities, as well as use my voice to help me and Lukas.
Are there three things the community/society/politicians can do to help you address the root of the problem you are trying to solve?
- Find simple ways to engage with people who have special needs. We fear what we don’t know, but small steps can help dispel our unknowing and break the isolation families often feel when raising a child with special needs. One of the chapters in Beside You is called “Start with Our Toes” and it is about how our small steps can forge meaningful connections.
- Lead with curiosity rather than judgment. If you see a child having a meltdown, rather than judging the parent’s abilities or the child’s character, look to what might be going on beneath the behavior. What is the child trying to communicate? Why is the parent responding as she does? For example, at times we are coached to do what is called “planned ignoring.” We are to ignore those behaviors our children use to receive our negative attention. Yet this can look like we are oblivious or non-responsive to actions we should be correcting, so it feels uncomfortable to do planned ignoring out in the world. If we see things we don’t understand, let curiosity build a bridge rather than judgment build a wedge.
- Learn how to make your environment accessible to people with special needs. Maybe it is reserving some hours at a library where quiet is not required. Or maybe it is hosting a theater performance for people with special needs, selling fewer tickets in case the children need to move around and forgoing applause to honor any sensory issues. All spaces have the potential to feel welcoming and inclusive.
How do you define “Leadership”? Can you explain what you mean or give an example?
My initial thought goes to what might be considered our more typical image of a leader. It is someone who can cast a strong vision and then create an invested community around that idea. It is someone who listens to others well and then discerns which ideas will lead the group toward their shared vision. It is someone who is making a difference out in the world.
But I think we can also have unlikely leaders in our midst, who we may miss if we hold too tightly to only one vision of leadership. Lukas is such a leader. He, and others in the special needs community, have the ability to lead us on the inward journey. We need leaders who can help us bring change to our outer world, and we need leaders who can help us bring change to our inner world.
What are your “5 things I wish someone told me when I first started” and why. Please share a story or example for each.
- Listen to your own evaluation of your work. I first learned this when I was an actor. I had to train myself to assess my audition before I ever laid eyes on a cast list. If not, I was sending my self-worth on a dangerous ride since it would fluctuate based on what other people thought of me. We can’t give ourselves so easily away like that.
- The first draft is a mess so be careful with whom you share it. We all need suggestions on how to refine our writing, but we also need to honor where we are in the writing process. If we are in a tender place, harsh criticism could make us want to give up. You will know when you are ready for that very discerning eye.
- You will tackle things in stages: writing, organizing, editing. Those stages are not linear as I imagined- they tended to circle around and be revisited often.
- Don’t let the writer and the editor in the room at the same time.
- The writing feels very different once you see it in print…so permanent and scary compared to seeing those words on your own computer. We will always want to revise our work, but there is a time to surrender and say, “it is done.”
*The last part of cover design, marketing, etc. is actually very fun. I wasn’t looking forward to it since I imagined I was going to have to put on a business brain, which is not a place my brain thrives! However, I found it very collaborative, and it was such a welcome treat after the isolation of writing.
Can you please give us your favorite “Life Lesson Quote”? Can you share how that was relevant to you in your life?
“You never really understand a person until you consider things from his point of view…Until you climb inside of his skin and walk around in it.” — Harper Lee, To Kill a Mockingbird
I read this novel in high school, and I immediately loved the character of Atticus. I knew Harper Lee was giving us all the opportunity to be fathered by him, so his words continue to reverberate in me after all these years.
They first impacted me by giving me the desire to step into others’ skin through acting. Acting was a great training ground for learning empathy and seeking to uncover people’s deeper motivations and desires. This novel, like The Bluest Eye by Toni Morrison, heightened my desire to learn people’s backstories. They taught me to engage with people rather than dismiss them if something bristled me in an encounter. They taught me to ask myself, “What do I need to learn about this person to better understand her words or actions?” Literature gives us the luxury of meeting a wide array of people and slowly understanding who they are.
More recently this quote has urged me to watch for the forgotten like Bo Radley’s character. Who are the people in my midst that really need me to “climb into their skin” in order to have more compassion? Where do I need to consider a new point of view? Who is invisible that needs to be seen and heard? It has stirred me to write a book so others can step into Lukas’ world and other children like him.
Is there a person in the world, or in the US with whom you would like to have a private breakfast or lunch with, and why? He or she might just see this, especially if we tag them. 🙂
I have long admired Meryl Streep. She has the ability to do what Atticus suggested as she has embodied a wide range of people. So many qualities stand out in her: empathy, a willingness to understand different perspectives, vulnerability, and a love for people. She has spent her life studying them, becoming them, and etching them on our hearts.
How can our readers further follow your work online?
You can find out more about my work at www.KimberlyLSanders.com and you can follow me on Instagram @KimberlyLSanders.
This was very meaningful, thank you so much. We wish you only continued success on your great work!
Social Impact Authors: How & Why Kimberly L Sanders of ‘Beside You’ Is Helping To Change Our World was originally published in Authority Magazine on Medium, where people are continuing the conversation by highlighting and responding to this story.