It seems that people must be Googling about how to photograph girls with Rett Syndrome, so here’s my answer to a recent email inquiry on the topic.
So many families with disabled children avoid the photographer because it can be a really disheartening experience. I once had a newspaper photographer come to photograph Grace and he was frustrated because she wouldn’t lift her head on command or look into the camera. Even though he knew he was photographing her because she had Rett. I thought “is this what it’s like to take your disabled kids to a photographers? No wonder people don’t do it!”
When photographing disabled children, I go for two different types of photos. Ones where their disability is obvious and ones where the insides shine through and they don’t appear to be different from other kids. The ones where they actually look like they have Rett will be easy because that’s how they look the majority of the time. When Grace was first diagnosed, I used to delete the photos of the crossed eyes, teeth grinding, hands flying allover the place. But now, I think they’re cute because we’re used to the way she is. And I don’t know where the parents are in their journey so I take both types. The more normal looking ones aren’t as easy. You have to focus between the eyes and if she’s moving around a lot (rocking, tremors, etc) you’ll have to follow her face with your camera. Wait for those precise moments when she looks at you and snap those shots. It can take me up to 40 or 50 shots before I get “the one”. Be patient. It’s like hunting.
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That said, some parents hate the photos of the girls with their eyes crossed so taking the time to talk to them and ask what her strengths are and the particular faces they don’t like (exe: “when you take pictures, what are the ones you always delete?”) would be good. Now, remember that as a photographer, it’s your job to create products for them to display in their home. The highest value shots will be those where she is looking straight into the camera.
It’s instinctive to call a kid’s name to get them to look at you, but girls with Rett (other than two girls I can think of) don’t do anything on command. Calling their name over and over will just frustrate you and make their parents feel like they should be doing something to make it happen. If parents are saying “smile, smile, smile” I just say “don’t worry. I’m just waiting. It’s ok” because the girls can’t do things on command. But sometimes parents try so hard to make their girls seem normal so they still try to demand that they smile. It’s very important to know that these girls aren’t mentally challenged. They’re “in there” and just locked into their bodies. Resist the urge to baby talk her. And I think the most frustrating part of asking a girl with Rett to smile or “look over here” is that she knows what you’re saying, but her body has a mind of its own and that will just make her sad.
Girls with Rett have very fast moving heads and hands so you’ll need a very fast shutter. Sometimes, their hands are still a blur and to be honest, that’s Grace (super fast hands that are always moving) and I find it endearing so I don’t always try to freeze her movements.
That’s all I can think of for now. Please get in touch if you need more help!Pin It