I was recently asked to take part in a Nashville Storytellers event sponsored by The Tennessean, held on March 25th at the historic Woolworth’s on Fifth in Nashville. This was the location back in 1961 of the “Lunch Counter Sit-Ins” by a group of TSU students here in Nashville. The theme of the evening was “The Struggle for Civil Rights”. I was so honored to be asked to be a small part of an incredibly moving and emotional evening.
The organizers wanted a very personal and authentic story from the disability community that gave an example of how the lives of people with disabilities have changed and evolved through the years. I have to be completely honest and say that I really felt completely inadequate to such a daunting task. But I was encouraged by a couple of dear friends in our local disability community to accept the challenge, and just speak from the heart and trust the power of personal narrative.
The story I chose is one I had written previously … quite a few years ago … about my experience with a neighborhood kid with an intellectual disability from back in the mid-1960’s, and then talking about some of the ways our son Evan’s experiences at about the same age differ …. and the ways my own life has been impacted. I re-wrote the story to fit an oral narrative style, and I am posting that written version here for you. I understand they *may* be putting the video of the stories from that night online at some point in the near future, and if they do, I’ll link to that as well. For now, here’s the written version. I hope you enjoy it.
I saw Randy coming up the sidewalk to my house.
Great.
I didn’t want to play with Randy. I didn’t want to even be around Randy.
So I hid.
I saw this kid coming up to my front door, and I hid.
Hard to believe, but that was over 50 years ago. Mid 1960’s, small town Missouri. I was maybe 8 or 9 years-old.
Randy’s parent’s lived on my block.
I hid from him. Around the corner from our front door screen, just out of his field of view. Randy put his face on the screen and hollered. “John! John! Can John come out? Where’s John?”
I just stood there saying to myself, “Dear God, just go away. Go away.”
My mom came out from the kitchen and saw Randy, saw me hiding, and knew instantly what was going on. She gave me a look. A look that asked if I was going to answer him. I just shook my head, “No”
She looked at him and said, “Hi Randy!”
“Can John come out?”
“I’m afraid John doesn’t feel like coming out just now. ” Then because moms are much faster on their feet than nine-year-old boys, she said to Randy, but actually addressing me, “In fact, John won’t be able to go out AT ALL today”. I knew what she meant.
“Okay”
As he turned to leave, mom called after him…. “Randy, why don’t you try again tomorrow? I’ll bet John will feel like playing with you then.”
“Okay”.
Mom watched him walk away. She looked at me and said, “You know, I bet he doesn’t have many friends.”
I felt small. Really small.
Randy wasn’t like the other kids. His speech was hard to understand. He had a strange galloping walk. Sometimes he would get overly excited about something and I didn’t really know why.
Randy had an intellectual disability. That’s what we call it now. In those days they just said Randy was mentally retarded. That’s not a phrase we consider appropriate to use now. Though even then, what *some* kids called Randy was far less kind than even that.
It was the mid-60’s … so my friends and I were starting to get into music. The Beatles, The Dave Clark Five, Herman’s Hermits, the Monkees. Randy didn’t care about any of that. He wasn’t interested in listening to records.
He couldn’t run or throw a ball or ride a bike. Didn’t understand “playing army”.
If I got out my Matchbox cars to drive them around on a pretend town on the front porch, Randy would just hold one (usually the firetruck) in his hand and spin the wheels.
As I said, Randy’s parents lived on my block. But RANDY didn’t live on my block. I’m sad to say I don’t know exactly where he lived, but I know it was in a town 50 or 60 miles away, at the “special school” he went to.
That’s what we did with kids like Randy in those days.
There were no kids like Randy in my school. Because there didn’t HAVE to be kids like Randy in my school. I think there might have been a Special Education classroom in my high school. But those kids ….. “those kids”….. didn’t interact at all with the rest of us.
The law giving students with disabilities the right to a “Free and Appropriate Public Education”, the law that would become known as IDEA, the Individuals with Disabilities Education Act, one of the most ground-breaking pieces of disability legislation …. Civil rights legislation …. didn’t become law until 1975. 1975! Doesn’t seem all that long ago.
1975 was the year I graduated high school. So I went all through school without ever really interacting with kids with significant disabilities.
I graduated high school and went off to college. Here’s the short version: Met this girl. Followed her home. To Nashville. We got married, started a family and have three amazing children, now all young adults, including twin boys who are now 22, Evan and Brendan.
Twins are a LOT of work. The first year or so of the boy’s lives is just a blur in my memory.
You try not to compare your kids to one another, because every parent knows that all kids are different. But maybe because we had a “built-in” comparison with twins, we noticed early on that Evan just wasn’t meeting the same developmental milestones as Brendan. I’ll never forget the day that after a series of tests, observations and evaluations the psychologist pulled her chair up close to where Janet and I were sitting on her couch and asked, “Have you considered that Evan might have autism?”
With those words, our lives changed forever.
His life, our lives, the lives of our family and extended family. Our very way of being in the world had just changed in ways we didn’t … couldn’t … realize yet. Some of those ways are wondrous. Joyful. Amazing and uplifting and eye-opening. Some of those ways make us better people than we were before. And some of those ways are difficult and frustrating and painful and heartbreaking. Some of those ways make it hard to face each new day.
It’s complicated. Very, very complicated.
Autism. We didn’t know anything at all about autism. We’d seen the movie “Rainman”, but that wasn’t our son.
Unlike today, where “autism” is in the larger public consciousness to a greater degree than ever before, back twenty years ago ….. well, not so much.
To her credit, the psychologist that diagnosed Evan suggested we get “plugged in” with the parent community and learn from other families. So, within a week or so, I found myself in the offices of the Autism Society of Middle Tennessee (now Autism Tennessee) one day at lunchtime. I’d thought I’d pop in, grab a few brochures out of a rack, and sneak out.
I ended up spending over 2 hours with the Executive Director that day. And by the time I left, I had two thoughts in mind.
- We’re not alone. There are other kids like Evan out there, and other families dealing with the things we’re just starting to see.
- Why in HELL did I volunteer to do their website?
So…. I got involved. I was on their Board within a few months, and within a couple of years was President, a position I held for about 6 years. I’m Past-President of The Arc Tennessee. I was on the National board of the Autism Society of America, where I met and worked with families and individuals on the autism spectrum from all over the country. I’ve spoken at conferences all over the nation about the joys and challenges of parenting a child with a significant disability. Most of our closest friends in the world are the people we’ve met through the disability community.
As for Evan, he’s truly an incredible young man. We learn so much from him, every single day. About life, and about unconditional love. How to give it and how to receive it. He has the truest and most authentic way of being in the world I have ever encountered. As I said, it’s complicated.
We have had good years in Evan’s school experience, and we’ve had some very challenging ones. One of the best was the year he had Miss Boone as his home-room teacher, and she went out of her way almost every day to make sure Evan was included as “just another kid” in the class. During that time it was so wonderful to see his face light up when we’d run into one of the kids from his class out in the community …. At the park, the grocery store or the pool … and they’d give him a fist-bump or a high-five and say, “Hey, Evan! How’s it going?” He would light up, and I would light up too. I remember thinking, “It’s working. He’s finding a place, learning to fit-in. Finding his sense of belonging.”
The need and desire “to belong” is one of our fundamental human needs. There are a lot of dimensions to “belonging”, and one of the most important of those dimensions is “friendship”. Having friends is a powerful force in anyone’s life. Whether or not we can articulate it, having friends centers us, provides a sense of stability and purpose, and helps to create meaning.
Over half of parents of children with significant disabilities will tell you that their son or daughter has never once been invited to another child’s house for a sleepover… a birthday party … a play-date. Nearly a third of adults with disabilities will tell you they simply do not have any friends at all, other than paid caregivers or family.
One day I was on the phone with my mom in Missouri, about 5 or 6 years into our journey with Evan’s autism. Just catching up, sharing the latest news about family, etc.
Then she said, “I ran into Randy the other day.”
Randy. I hadn’t really thought much about Randy in years. Decades, really.
My mom went on. “He’s really doing great. He has a job. He asked about you. He said you ‘Sure were a good friend’.”
I sure was a good friend. Suddenly I was nine again. And I felt small. Really small.
Because I hid from Randy. I didn’t want to play with Randy. I didn’t even want to be around Randy.
I wasn’t a friend to Randy.
I could have been his friend. I *should* have been his friend.
I’m so glad he remembered it better than I do. Who knows how different his life … how different MY life … might have been had I truly been a friend to Randy?
Today, I count a number of people with disabilities among my friends.
Here’s what I know: People with disabilities have hopes and dreams and fears and challenges. They have things that make them laugh and bring them joy. They have things that make them sad, or make them cry.
At age 60, I think I can grant my 9 year-old self a measure of grace for being selfish … fearful … of a boy who was different, a boy who probably just really needed a friend. I know now that it was MY shortcomings, not Randy’s that kept me from really finding out about his life.
Now, I challenge myself…. And I challenge all of you … that when you see or meet a person with a disability, please look BEYOND the label. Know that they are likely far more competent than we might be tempted to presume. Don’t focus solely on limitations or what you might easily perceive as shortcomings. Instead, look to the person … the real human being … who is there beneath and through and despite whatever other things you see.
Make the effort to connect authentically, from the heart, and to be open to the fact that the kindness you should offer that person just might lead to a rewarding friendship. It could very well be an incredibly important and potentially life-changing friendship for both of you.
I think Randy would like that. And so would Evan. And so would I.
love,
John