What a man with Down Syndrome taught me about being human.

He’s standing by the keyboard, nervous, wearing a new vest and pressed white shirt. The room is festooned with streamers and balloons stamped with ‘Happy 30th’. Guests are filing in wearing their Sunday best, carrying boxes of all shapes and sizes. He’s about 4-foot-something, Italian, with Down syndrome, and today is his birthday party.

At the centre where I work, he’d been asking me about it all week. 

“Cher-ie…” he would say slowly with an Italian ‘r’ roll. “You come to my par-ty?” I would reassure him that yes, I was definitely coming, and no, that guy he doesn’t like at the centre is definitely not coming.

There are heaps of Italian families there, leaving my co-workers and I in the English-speaking minority. The food and drink start to flow and we eat too many cannolis and watch him by the piano, waiting.

“So many people with disabilities are seen by their parents and families only as a tragedy. They are surrounded by sad faces, sometimes full of pity, sometimes tears…” Jean Vanier

A week earlier, I had seen my newest nephew, Max, on Skype for the first time. My sister is living in London with her husband and first born. As I looked at Max’s squishy pixelated face, I felt overwhelmed with love. 

It’s incomprehensible how strongly I feel about this tiny human, this mash of skin and cells and potential. He hasn’t done a single thing but he’s family, he’s one of our tribe. 

“A society which discards those who are weak and non-productive risks exaggerating the development of reason, organisation, aggression, and the desire to dominate. It becomes a society without a heart , without kindness-a rational and sad society, lacking celebration, divided within itself and given to competition, rivalry, and finally, violence.” Jean Vanier 

I wonder what Max will be when he grows up. Maybe a cool saxophonist or a charismatic real estate agent. 

 I think about his squishy pixelated face and realise that no matter what he does, he will be loved because he is. Even if he becomes a crack dealer on the streets of London, I will still send him a Christmas card every year with money (and a joke about not spending it on drugs).

“Our society is geared towards growth, development, progress. Life for most of us, is a race to be won. Families are about evolution: at a certain stage, children are encouraged to leave home, get married, have children of their own, move on in their lives. But people with disabilities have no such future” Jean Vanier

A friend at work showed me a lecture by Tim Stainton; a professor at the University of BC School of Social Work and Director of the Centre For Inclusion and Citizenship. 

His lecture was titled: ‘Disability, Biotechnology and the Right To Exist’. He discusses eugenics: the theory and practice of improving the genetic quality of the human population and specifically in relation to disabilities. He says that 9 out of 10 parents who discover that their child has Down’s syndrome will abort.

I don’t want to get into the ethics of aborting foetuses with a disability. I can’t judge anyone’s decision (let alone ever make it myself) because there are so many factors involved, some of which go beyond a moral or ethical basis (for example, societal induced pressure like financial burdens or lack of support). But I can’t deny that this statistic made me feel sad and think of my Italian friend.

Jean Vanier says in ‘Becoming Human’ that weakness speaks to us of the ultimate powerlessness: death. We spend our lives and energies on a wheel of productivity, hoping to outrun the inevitable. We would rarely picture ourselves as being the vulnerable ones, riddled with age and disease, perhaps having lost our mental faculties.

If Vanier is right, that society’s response to its weakest members is a form of denial, I certainly see it in myself, working at the centre. On my best days, I am patient and kind and able to put other’s needs above my own. On my worst days, I’m irritable, short-tempered, and respond to people’s needs with annoyance. It’s on those days I truly learn about grace. And not just having grace for the people I support but finding grace for my own weakness and accepting it as part of who I am.

An older Italian man with a bad 80s haircut starts to play the keyboard; a familiar tune: ‘O Sole Mio’. Our birthday friend puff his chest out and suddenly there is a burst of noise from within him. He is in his element. This is his birthday, and he’s singing with everything he’s got. 

Some of the higher notes are reminiscent of the raspy yell of a man who’s just lost his grip, free-climbing over a canyon. But he doesn’t waver, he continues to sing to the full capacity of his lungs, all the way through the song and onto the next.

We clap and cheer and hoot. His brother rolls his eyes. I feel overwhelmed with joy at his free self-expression. 

I think about how lucky I am to have fallen down this rabbit hole, this world where people get applause just for trying, where they’re celebrated for who they are and not external achievements. 

“But every child, every person needs to know that they are a source of joy; every child, every person needs to be celebrated. Only when all our weakness are accepted as part of our humanity can our negative, broken self-images be transformed” Jean Vanier

Imagine a world without people like my Italian friend. I couldn’t imagine a more boring place. He teaches me to be brave in who I am, accepting all my weaknesses and still getting up to sing my lungs out.

Cherie Lee is a writer living in the surfing capital of Australia: Torquay, Victoria. She still can’t surf.
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Cherie Lee is a writer living in the surfing capital of Australia: Torquay, Victoria. She still can’t surf.

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