The author and his sister, Little Lobbyists Ben and Claire Smith

Best Friend on Wheels shaped me because it taught me that it is okay to have a sister with a major disability. Before I read this book, I thought it was not okay to have a sister with a disability. Although I am ashamed to admit it now, I was embarrassed by my older sister Claire who has a microduplication of chromosome two, uses a wheelchair, is autistic, and has many other medical issues.

You may ask how did this book teach me that it was okay to have Claire as my sister? Best Friend on Wheels taught me this because it is a book about a girl with a similar disability.  At the beginning of the book Sarah, a girl with a disability, rolls into the classroom and a girl stares at her wheelchair but does not look at Sarah. At first, she looks away, embarrassed that she might say something wrong and hurt Sarah’s feelings. This is like when I was younger and I always stared at Claire’s wheelchair and thought that she would not be able to play with me. Now I am ten and I think of Claire’s wheelchair as a neat accessory like a piece of jewelry rather than as something that makes her different.

A lot of people stare at Claire when we walk to a toy store in our neighborhood and think that she cannot communicate what she wants. This reminds me of a part of Best Friend on Wheels when Sarah and her friend go to get ice cream and the lady at the counter asks Sarah’s friend what would she like thinking that because Sarah has a disability she cannot talk. Although my sister cannot talk, she can point and let us know which toy she wants that way, but people do not always give her the chance to do so.

Best Friend on Wheels showed me that people underestimate kids with disabilities all the time, not just my sister, and that I had to speak up for my sister so that people would realize what she is capable of. I’ve continued to do this by going to Capitol Hill and rallies to speak up for kids with disabilities and will do so for the rest of my life.

When the girl in Best Friend on Wheels becomes friends with Sarah, it is not because she feels bad for her for being in a wheelchair, but because of her pins showing that she is a “ROCKHOUND.” This may seem unimportant, but it is very important because it shows that people with disabilities can like the same things as people who do not have disabilities. The girl in the book did not notice Sarah’s pins at first because she was too busy staring at Sarah's wheelchair. When she does look beyond Sarah’s wheelchair she realizes they both collect rocks and have a lot of other things in common too. This showed me that people with and without disabilities can have a lot in common if they just take the time to talk to each other, even if what they have in common is just watching movies or reading books.

Best Friend on Wheels taught me that it is okay to have a sister with a major disability because it showed me that a person with a disability can do everything people without disabilities can do too. Just like the two friends in the book, I have learned that I can do everything with my sister Claire that my friends can do with their siblings. We enjoy going to amusement parks, eating ice cream together, swimming, and playing games.

Thanks to Best Friend on Wheels I stopped being embarrassed that my sister had disabilities and realized how much fun I could have with her. Now she is one my best friends. I am so glad I am not missing out on having so much fun with her just because of her wheelchair.

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Ben's essay was a finalist in the Library of Congress' 'A Book That Shaped Me" contest. He was recognized for this accomplishment at the National Book Festival in Washington, DC on September 1, 2018

Click here for a link to where you can purchase the book, Best Friend on Wheels by Debra Shirley.

The first time a doctor suggested that my son was mentally retarded was a shock.

Simon was five, and though he’d consistently missed milestones, his doctors and teachers said it was just “developmental delay” and recommended more therapy to help him catch up. Since he’d started life with a stroke and had multiple surgeries, it seemed reasonable he’d need a little extra time and help. I tried not to worry about the future, a delay was only temporary.

Until it wasn’t. Simon was falling further behind. Testing revealed his academic skills had “plateaued” and his social skills were “abnormal.” Lots of charts with bell curves and deviant scores were drafted to explain what I couldn’t quite comprehend; my beautiful little boy with hydrocephalus, epilepsy, and cerebral palsy, also fit the clinical definition of mental retardation.   

The weeks following Simon's diagnosis brought a lot of research and reflection. I suddenly found myself noticing something that had always been there -- the careless way “nice” people used my baby’s medical condition as derogatory slang. It was a painful revelation. Every time I heard it felt like a stab in my heart, and I heard it often. People said it to describe something foolish, when annoyed by someone, angered by a situation, even to be self-deprecating. “Retarded” was a synonym for nonsensical, unworthy, lacking value, rejected. It embodied my deepest fears for Simon’s future as a person with cognitive and physical disabilities.

It’s well established that in our society fitness and intelligence are paramount. We define ourselves by what we “do.” What we produce has become more important than who we are. Achievement is virtue, work is worth. If a person cannot participate as such, they are marginalized. Look no further than current political rhetoric for examples: “makers vs. takers,” “poverty is a mindset,” work requirements for health care, and so on.

And of course, there’s this.

With ongoing attacks to health care, education, and the ADA, our country is an increasingly hostile place for people with disabilities. If, as President Jimmy Carter famously said, the measure of our society is found in how we treat our most vulnerable citizens, we are falling far short of greatness.

My son, however, is not lacking. Through him I’ve come to rediscover the “better angels of our nature,” as Lincoln and Obama directed. Simon taught me that a person is more than the goals they score, the grades they get, or the money they make. We must learn to measure our value by the kindness we show, the laughter we share, and the love we create. Worth is intrinsic to every life.  

Simon’s diagnosis was six years ago. Since then, we’ve seen many specialists and most choose other (better) words to describe his diagnosis. Cognitive or intellectual disability describes the condition without denigration, helping us find a path for understanding. Though I’ve grown past my initial fears, the old echo of “retarded” still follows me. When I hear it, I worry about Simon’s future, about the stigma and ostracization he will face when he’s no longer a child and I cannot protect him.

All any parent wants for their child’s future is happiness, and the key to that happiness is being accepted for who you are. Fear of my son’s diagnosis made me reluctant to accept it, and inhibited my ability to accept him. But the scary part of “mental retardation” isn’t the condition itself. People with cognitive disabilities have meaningful lives, and bountiful gifts to offer those who choose to see them. The thing we should be afraid of is our acceptance of hate speech, which gains its meaning from crushing our humanity. It’s the rejection and devaluation the word “retarded” has come to define from use as a slur. And it’s time for that slur to go.

Spread the word to end the word.