Grace for Rett » Grace's Life with Rett Syndrome

How to Photograph a Girl with Rett Syndrome

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.

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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!”

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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.

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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.

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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.

Below is a video of me working and photographing Rett kiddos (if you’re reading this in your inbox you won’t see the video so click here). You can briefly see a tactic which works really well and that’s to hold a phone or tablet above my camera with their favourite music or TV playing (you can also see me doing this in the photo below that). Just be patient. Don’t shout commands or over stimulate her. Sometimes I ask everyone to leave the room so it’s not sensory overload. Sometimes the parents are the problem and I have to pluck up all my courage to ask them to leave. And if you just sit there and chill, she will look eventually. 10% of the time, I get a gal who simply doesn’t ever look at me. For some of these girls and women, their bodies are such runaway trains that just trying to breathe is enough to keep their attention elsewhere. Don’t stress. If that’s who they are, then that’s fine, too. Just photograph her for who she is.

Some technical notes: unless you’re very experienced with wide open apertures, I wouldn’t shoot below f/4.0(ish) if you do what I said and focus between the eyes and follow until she looks, shooting wide open can be risky depending on the angle of her face when she does finally look. Avoid flash – this could induce seizures in some gals and is just generally not a nice sensory experience for them. A nice natural light is all you need. Position yourself with a window or sliding glass door directly behind you (you can see in the below photo how close I am to the window).

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That’s all I can think of for now – good luck!

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Amanda Nicholson - October 13, 2015 - 3:12 am

Very good read. 🙂

Sylvia Jeanne Rodoni Koutz - October 13, 2015 - 4:11 am

Very nicely done and informative. Beautiful girls.

Mike Twohigg - October 13, 2015 - 8:55 am

Your pictures of Cassie are the best ever

Virginia Fitzpatrick - October 13, 2015 - 11:19 pm

Julia LOVES music and I slip my phone down in her chair playing one of her favorite songs and WaLa
We’ve got a smile!!!!on command:)

Linda Marie - October 13, 2015 - 11:25 pm

She’s a special kind of photo Grapher yes she is

Kathy Gaskamp Loflin - October 14, 2015 - 1:49 am

Your photos are amazing! Thanks for sharing!

Grace Collections Photography - October 14, 2015 - 2:44 am

Its always an honor photographing anyone with a disability. I have had that honour many times over and earlier this year photographed a young girl with Rhetts. The key factors mentioned in the article are all true indicators of a professional able to accommodate the needs of their client rather than expecting their client to meet their requirements. It is a joy to capture families in all shapes/sizes creating long term memories.

Alicia Vergara - October 14, 2015 - 2:55 am

Pues así le hacemos es casa.. mil fotos y una sale realmente bella..

Mary Wilkinson - October 14, 2015 - 4:13 pm

Nicely done! My Rett daughter is nearly 35, I’m not a photographer but have always tried focusing between the eyes and following her, sometimes I get dizzy! lol She loves light so we found many years ago if we need her to turn her head and focus we’ll place a flashlight behind us in the direction in which we want her to look. Not a bright bright light just a soft light to cause her to focus.

Tina Chain - October 14, 2015 - 7:50 pm

Thank you for sharing!

Scott L. Vannatter - November 15, 2015 - 6:57 pm

Wonderful post. I have missed reading about Grace and her beautiful family.

Estefania Peña de Solari - February 26, 2016 - 5:30 pm

You sound like an AMAZING human Being!

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