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Writer's picturejohn van sloten

Finding God through Disability


Here's an article I wrote about how God has worked in our lives through our son Edward.


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.


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 the disabled 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.


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.


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 disabled person—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.


BIO – You can support Chrysalis by attending their 2024 Annual Gala Fundraiser breakfast on

annual-gala-fundraiser-2024-tickets-887710535107 or by simply making a donation on

their website. John Van Sloten in a Calgary-based community theologian and writer who tries to

engage God everywhere.

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