Victory over victimhood

Well, June 4th, 1982, posed that question to my parents. My sister Lisa was born 3 weeks premature and arrived into this world at just 2.21kg and could fit in the palm of my fathers hand. She was quickly taken from my mother and placed into an incubator. This was at a time when giving birth in Ireland was strictly a woman’s task and men were not even permitted in the delivery room. They were often not even at the hospital but across the street at a bar awaiting good news!

My mother was moved to a quiet part of the hospital to recover but after already giving birth twice before, she was sent into a panic when she realized the other ladies sharing that ward had tragically lost their babies in childbirth. It was frightening but early tests showed no sign of heart defects and aside from her tiny stature, Lisa had thankfully survived. I guess another indication of the old-fashioned approach in 1980’s Ireland was a discussion that took place between the doctor and my father without my mother being present. The doctor sat my father down and said he was, unfortunately, the bearer of “bad news”, as he then explained: “Our team has examined Lisa and although she doesn’t have an oversized tongue or typical heart problems, I am concerned she is a ’Mongoloid’, her eyes are strange, we think she might have something called Down syndrome”.
 
My dad is one of the sharpest minds I know but as a 28-year-old truck driver who had left school to get a job at age 12, well, he didn’t actually know what Down syndrome was! The next day he sat with my parents and painted a bleak picture: “She may not survive very long and if she does there are risks she may not walk or talk, and she has very little chance of an intelligent life, I am very sorry for you”. My dad didn’t like his tone nor want his sympathy & simply said: “She is my daughter and she’ll be fine!”.
 
5 weeks later it was officially confirmed that she had Down syndrome and then 2 years after that, I arrived to share a twin pram with her as she was still a very tiny girl and so we grew up as twins more or less. Growing up with Lisa meant life was all singing and all dancing. It meant learning every lyric to every song from every musical and every line to every movie she loved as they were all played on repeat!
 
But it also meant knowing that treating someone differently from others is often the fast track to reducing their potential. Judging someone based o their appearance and treating them in a “special way”, even when it comes from a place of love, still signals to that person that they are not equal. That somehow they are less than. Lisa wasn’t a victim so we were told not to treat her like one. We were taught to respect her by treating her the same as the rest of my siblings. In Ireland it’s obvious when people don’t respect you, it’s when they won’t make fun of you to your face. In my family, no one was spared!
 
She climbed trees, played football, raced bikes (hers a Victorian tricycle), we laughed, we argued, teased & fought, we learned from each other & we had a great time. One day playing hide and seek she found the absolutely perfect spot and a couple of hours after we had given up and declared her the winner, she was eventually found curled up inside the washing machine!
 
Thankfully my parents were brave enough to take the pioneering decision to put Lisa into our local St. Killian’s national school with the rest of us at a time when Down syndrome kids were mostly kept out of mainstream schools & typically placed in special education centers. Lisa absolutely thrived in that environment because my family had never really made any allowances for her at home anyway. She learned to read and to write, to use computers and continued her mainstream education in high school, and of course, attended her prom wearing a crown fit for a princess!
 
She has far exceeded the low bar of expectation that was set for her in childhood by “the experts” but most of all she has lit up the lives of classmates, friends, work colleagues & anyone willing to share a dance floor with her and continues to do so. One of her teachers happened to be the great Richard Stakelum, a famous Irish sportsman, and he summed it up perfectly one day, he said: “Everyone thinks we are doing something great because we are helping Lisa but the truth is that Lisa is helping every other child in here every single day in a way that you simply cannot measure”.
 
As I write this on World Down Syndrome Day, I’d like to offer my advice to the world: If you want to “help” a Down syndrome boy or girl, treat them the same as the others, it is truly all that they want.