Finding God through disability

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When I first learned of my son’s Down syndrome diagnosis, I was devastated. I had no sense then of the profound value of his life.

I couldn’t imagine Edward at 32 — as an artist, volunteer and friend. I had no idea he’d develop such a goofy sense of humour or become such a good swimmer. I didn’t know he’d be such a romantic, crying at all the sad parts of Disney movies, or that he’d love music and dancing as much as he does.

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When Edward was born, all I could see was disability.

I should have known better. As a person of faith, I knew that God values all people equally, and that weakness has a different currency in the divine economy. I knew that weakness is often a strength before God. I also knew that God Himself chose to become weak. How is Jesus, becoming a human being, anything but a dis-abling act?

This has profound implications for our understanding of disability. Theologian Nancy Eiesland takes it to mean that, “Full personhood is fully compatible with the experience of disability.” Edward would not be fully himself without Down syndrome.

This is a freeing thought in a world that often wants to fix those with disabilities by pushing them to be more like the rest of us — achievement oriented, defined by what others think of them and wracked with performance anxiety.

Don’t get me wrong, I want Edward to grow, and he does need a lot of help and support, but he does not need fixing. The more I realize this, the more we can both can be ourselves.

When I help Edward with his morning routine, I am humbled by his willingness to receive my assistance. His openness creates an intimacy that frees me to give from the deepest parts of myself. His humility draws out mine.

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And I know Edward has this kind of effect on others as well.

His lack of pretense frees middle-aged cab drivers to unselfconsciously take him by the arm when they pick him up. His limited capacity to communicate invites people to slow down, lean in, and simplify their language. His need for meaningful work, creative expression and play has (in part) inspired a city full of disability programming and supports.

I thank God for Access Calgary (subsidized transportation), AISH (income support), PDD (community supports for independent living), and the creation of the RDSP (registered disability saving plan). Where would Edward be without his amazing day program — Chrysalis? Where would our family be without a society that supports all of these programs?

I find it so incredible, that the “weakness” of people with disabilities has drawn out so much communal strength. By helping others, we’ve all become more our true selves.

I see it daily in the hearts and faces of Edward’s Chrysalis support workers — they get it. They know how life giving it is to help others. I can sense it in their daily reports: smiling from ear to ear as they tell us that our non-verbal son called bingo at the Wing Kei seniors home, feeling their pride as they send us a video of Edward diligently folding towels at Providence Care Centre and seeing their delight with Edward’s newest painting.

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There is a sacredness to these moments. They know Edward and see him as clearly as we do — a reflection of the heart of God! They know the richness of doing life with those with disabilities. They’re on the leading edge of true community — a place where all diversity is embraced. They know the freedom that comes with being in community with someone with a disability — the wonderful gift of being able to let your guard down and freely be yourself.

This is the beauty of being in relationship with a person with a disability: the more you accept them for who they are, the more you accept yourself. The more you accept yourself, the more you are able to give to others.

This is what it means to be human.

You can support Chrysalis by attending its 2024 annual gala fundraiser breakfast called Dream Big, at 7 a.m. on June 19 at the Blackfoot Hotel. Register for tickets at  https://www.eventbrite.ca/e/dream-big-chrysalis-calgary-annual-gala-fundraiser-2024-tickets-887710535107 or by simply making a donation at chrysalis.ca .

John Van Sloten is a Calgary-based community theologian and writer who tries to engage God everywhere.

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