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
June 19 th . Register here - https://www.eventbrite.ca/e/dream-big-chrysalis-calgary-
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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