Lesley Megarry and her brother Johnny have lived in Burlington for more than 60 years. Johnny passed away in the fall of 2025. Lesley was his advocate for 35 years of his life and continues her advocacy for developmental disability in Johnny’s honour. She is the author of “Let’s Be Friends Who Haven’t Met Yet” and “Let Me Introduce You to My Brother.” Lesley is trying to increase awareness around developmental disability and encourage greater inclusion and appreciation for individuals who are developmentally disabled, people who may need help in creating their lives.
Johnny was called developmentally disabled most of his life, although he was never formally diagnosed. Our mom learned about Attention-Deficit/Hyperactivity Disorder (ADHD) when Johnny was in his 20s. Every aspect of ADHD was Johnny.
ADHD wasn’t recognized as a possible treatable diagnosis until the 1980s. When our mom spoke to a doctor educated in this field, he said he wouldn’t know what to do with an adult never treated for ADHD as a child. Do you know anyone with ADHD?
There was a noticeable difference in Johnny as a little boy; he didn’t play or learn like other children and couldn’t stay still for very long. He failed kindergarten twice, and our mom was told there was no fit for
Johnny in the school system.
Does it sound like I’m saying someone with ADHD is developmentally disabled? Please know, I am not.
Johnny was called intellectually handicapped, autistic, different, not normal. Johnny was also called stupid and “a retard” (the R-word). And that’s what I heard — I’m sure Johnny heard much more.
“Johnny’s not normal; normal people don’t fail kindergarten.” “He causes so much trouble.” I could go on and on. A boy in our neighbourhood yelled the R-word at Johnny. Our mom asked me to try not to leave Johnny alone while playing outside.
There has been cruelty, but there have been kind connections, innocent curiosities. Even so, many didn’t know what to make of Johnny. When Johnny was young, the family doctor said Johnny was “mentally retarded” so he referred Johnny to a mental institution for further assessment. It was concluded that Johnny was not “mentally retarded”; he was too smart.
Do you say the R-word? “The R-word is often used in everyday speech in a derogatory, offensive, and hateful way. If you stop using it, you help promote the acceptance of people with all disabilities,” according to a previously published definition from the Canadian Down Syndrome Society (CDSS). The other day, I heard an angry woman yell at someone in a parking lot, “What are you, a retard?” I cringe whenever I
hear the R-word.
No matter how hard our mom tried, there were no answers for Johnny, no solutions, nobody knew what to do. Are you a parent? Do you know what a lonely, scary feeling it is when you can’t help your child?
I found myself thinking how lonely and scary it must have been for Johnny. As he grew into adulthood, Johnny still showed limited attention, which continued to affect everything in his world. Sounds sad? It is, but here’s the beauty: Johnny never saw any part of his life as sad.
When I spoke to Johnny about including this part of his life in our book, he said it was okay, and then immediately wanted to tell me about his new glasses. I was always amazed at how Johnny would unexpectedly bring a smile to my face.
Did you smile? I hope so — Johnny would love it.
Through Burlington Local-News.ca, I am sharing a world that is part of our Burlington community, one that I may not have paid much attention to if not for my brother. I hope these conversations help you to think of
people you may not have otherwise. It is a world full of compassion, kindness, love, and hope, no matter its many challenges. Johnny gave me the okay to share his story. I hope you follow this series of conversations, of which Johnny is very much a part. This is the third conversation in the series.
If you’re interested in purchasing Lesley’s book, it is available at Simply Gifted and Different Drummer books, and on amazon.ca, If you wish to continue the conversations, feel free to contact Lesley at makeitagreatday2023@gmail.com.
