How to photograph a girl with Rett Syndrome (and other disabled kids)

It occurred to me  that people must be Googling about how to better photograph disabled kids, 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.

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 – good luck!

Pin It
  • Mara Ruiz

    You are always incredibly helpful! Thank you so much for sharing all your knowledge with us.

  • Janet Ramos

    Thank you for sharing this! As a mom of a special needs and a photographer, I can totally relate to everything you mentioned in this post. :)

  • Fantastic and informative post, thanks for sharing.

  • Penny

    You are lovely. Thank you.

  • Deirdre

    I loved this post for so many reasons. Thank you.

  • Tracy Hoots Hoexter

    Thank you for this insightful and important post. Blessings to you and your family.

  • Laura

    I am so glad you posted about this. I’ve thought on many occasions about emailing you in regards to this topic. My nephew has cerebral palsy and a close friend’s little girl has a seizure disorder that has slowed her physical development. These tips are helpful and very much apply to these two sweet kiddos. Thank you!

  • sparrowgirl

    I do a lot of work with children with chronic/complex disabilites as well as having a son with severe disabilities and pleased to see this post. Where I work, we provide professional photograph settings (3 per lifetime) for free to these children and families through a non-profit organization, Flashes of Hope…they primarily photograph cancer patients, but have included our patients with multiple disabilities for whom we provide pediatric palliative care. Just a note of constructive criticism: please remember to use people-first language. They are children first who happen to have a disability – as opposed to disabled children. Thanks for your good work…

  • WeiPhotoArts

    Thank you for bringing up a topic that many may feel uncomfortable with. And made it understandable to all of us, as well as enabling us to have empathy with those charged with photographing children who are special.

  • Cyndi

    This is wonderful advice and really, you do such an amazing job of photographing every child you come across. You’re really an inspiration. :)

  • Thanks, as a mom with both a 2 year old daughter with Rett and a camera obsession, I love this!

  • Jill Brewer

    This is great!! I have a 6 year old named Grace with Rett. Do you know of photographers all over that take Rett girl pics. I’m in Texas and would love some pics of my princess :)

  • I wish that I were in the UK so I could help with the tour there, I may try to set something like this up over here.

  • I am looking to join once I get enough experience to do the children justice.