11/28/2014 11:21 am ET Updated Dec 06, 2017

What It's Like To Raise A Daughter With Down Syndrome

This article was originally on Slate.
By David Rosenberg


Sian Davey, a mother of four, was pregnant with her youngest child when she was told that there was a good chance her daughter would be born with Down syndrome. While the decision to go through with the pregnancy was an easy one for Davey, it didn’t prepare her for what it would be like.

In addition to a fear that her daughter Alice would be treated unfairly in a society that she feels gives little or no value to people with Down syndrome, Davey had concerns about how her family would handle things and even her own expectations for Alice. “When you have children with Down syndrome, it becomes about them having Down syndrome,” she said. “They have a condition, it’s almost as if they don’t have a personality and she wasn’t Alice, she was Alice with Down syndrome.”

Davey explored various narratives about her relationship with her daughter, as well as her ideas of what her daughter might be experiencing, in the series “Looking for Alice,” shot on film with a medium-format camera. It is one of many projects in which she has immersed herself since deciding to follow a career as a photographer. (She is currently closing down her 15-year psychotherapy practice.)

“When we have a child who doesn’t have learning difficulties or Down syndrome, we all project on them that my child is going to be this or that, we immediately have expectations, but I wasn’t allowed any here, I was dealing with very different territory,” she said. “It’s a great exercise in looking at oneself and seeing what we do to our children and these expectations we have for them. As a psychotherapist I deal with the fallout of that all the time and it just illuminated and amplified my relationship with my other children.”

“What I found fascinating was once I got my thinking mind out of the way was the perception of photography as a medium of communication,” she said. “When the images came back it was extraordinary what was being shown to me and just by putting that intention out there, things were just showing themselves to me without me thinking.”

Davey said nearly all of the photos have been taken either inside their home or no more than a 10 minute drive away. Apart from watching the light, staying in the moment is her only parameter when shooting.

“I sit back and watch and I can kind of hear and see so I’m combining all my senses to what’s going on around me.”

See more images on Slate.



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