Not only do we live in a world of human difference, but that God wants us to live in this kind of world, for our flourishing, according to a new book by Andrew Barron, a Toronto author who lives with a son who has Down Syndrome.
It’s funny how much difference an extra chromosome makes. Rafi’s difference lay in his chromosomal composition – those small bundles of genes have a lot to say about how the body and mind develop. All those differences were already present when he was conceived and lay curled within, invisible to us. There Rafi was, inside my wife, already who he is.
There had been no reason for extensive medical tests – Laura was young and healthy. All the indicators were normal. Twenty-nine years later, Rafi’s difference is present in his orientation to his body, time, and space. I am not sure if he really knows what time it is or where he is. He is not good with abstractions. He can read the time, and he is always in the present. He knows he lives in Toronto, and he looks at maps, but I am not sure he knows where he is.
His body, too, seems a mystery. It’s soft and mushy, and he has very little muscle tone. He is comfortable being naked around strangers and helpers. He is not ashamed to burp, fart, slurp, or laugh around anyone at any time. He smiles easily, but he is not always in a good mood. He complains if things are out of order.
Once we were in a bookstore together when Rafi bumped into an extremely tall man. He looked up and with astonishment said “Wow!” The man smiled and the two of them enjoyed a good laugh together, an affectionate moment of sympathy in mutual differences.
Rafi seems impervious to sorrow. Friends, family and animals we have known and loved have died over the years without much reaction. Everything is present, in space and time.
This lack of orientation acutely affects his life and ours, and definitively establishes difference in our lives from those of our friends and peers. Rafi can never be alone. He cannot respond to an emergency. He cannot organize his day, toilet himself, or walk alone to the park. He is loving, funny, adorable, charming, infuriating.
We always need to know where he is and what he is doing. He understands money is necessary, but only in an abstract way. He cannot make life decisions. His receptive language is excellent. His descriptive language is minimal. He doesn’t have friends in the same way the rest of us do. All the people he regularly spends time with – outside family – are paid. He loves to talk, but mostly about the next meal to come or what the previous one was.
The hospital where he was born was terrific. Rafi underwent a whirlwind of tests. We were filled with nervous anxiety as his heart was checked, but it seemed a normal day all around us as the doctor casually gossiped with the nurses. Everything passed in slow motion. He is fine, don’t worry. Of course, you’re stunned. Take him home and take care of him. He is going to do well. He will surprise you. He looks like you.
After Rafi was born we had two girls, and they grew up thinking his difference was normal. What – not everyone has a brother with Down Syndrome? Rafi went to school and was popular, but he didn’t have any real friends. No one tried to include him in local street hockey or neighborhood basketball.
He attends a vocational day program and works at a pet store and a restaurant, leaving early in the morning and returning home in the late afternoon. His helpers come on weekends to swim and play basketball and tennis. Some help him shower and shave. He is a man, and it is hard to know how to manage a man who sometimes acts like a toddler.
We have been through a lot of behavioural problems. Rafael can be angry, belligerent, petulant. He can become compulsive about his eating and daily schedule. He sometimes refuses to get on or off his bus. He might freeze up or shut down. He once punched his helper. We spent thousands of dollars on therapists, but when we asked Rafi about what was going on he would answer “I don’t know.” He understood we were concerned, but he could not communicate what was going on internally.
I could list the things that Rafi is missing out on in terms of independence, intimacy, travel, money, and vocation. But he is not missing out on anything. He is loved and he loves. He has a sense of belonging. He is cared for. I do not think I want Rafi to have Down Syndrome. Yet days and weeks go by where I just don’t even think about it. Our lives have a pattern like everybody else’s lives. If Rafi were normally developed, our lives would simply be different, not better. Our contentedness flowers from being securely planted inside this space of difference.
Andrew Barron is an adjunct instructor at Tyndale University in Toronto and Ambrose University in Calgary. He has previously taught at The Centre for Spirituality, Disability, and Care at Martin Luther University College and Wycliffe College at the University of Toronto. This blog post is an excerpt adapted with permission from Human Difference: Reflections on a Life in Proximity to Disability (Wipf and Stock, 2024). Artwork Gelb-Rot-Blau by Vassily Kandinsky, 1925, from the Centre Pompidou in Paris. Photo of Rafi and Andrew Barron provided and used with permission.