When Heidi Lewis’s son Taylor was born with arthrogryposis, a rare joint and muscle disease, his doctors predicted he might never walk, talk or see. But after a year of four-times-a-week therapy, Taylor was doing great, and Lewis wanted to celebrate his first birthday the way most proud moms do—by having her son’s picture taken at a local photo studio. That’s where the party ended. The photographer, uncomfortable with a one-year-old who couldn’t sit up on his own and didn’t smile at the camera, balked at taking the picture, saying she just didn’t know how to deal with Taylor. “We were there to celebrate his progress,” says Lewis, “and the photographer’s reaction was a slap in the face. It gave us the impression that unless our child was perfect and beautiful, he wasn’t acceptable.”
Her experience, she found out, wasn’t that unusual, and it wasn’t even the worst of its kind. Venting to friends in her parent group, Lewis met another mother who had actually been turned away by a photo studio where she’d taken her daughter after the latest in a series of heart surgeries. “Wait until she’s well,” she was told, as though taking a picture of the girl, whose head had been shaved to accommodate a shunt, would be in poor taste. “This mom was just furious because her daughter was not supposed to live past birth,” Lewis recalls. “Every day with her daughter was a gift at this point.”
A beautiful photograph and a happy picture-taking experience, Lewis knew, would go a long way toward helping a specialneeds child and family feel blessed. So in 2001 Lewis and her mother, Karen Dórame, launched Special Kids Photography of America (SKPA), an Arizona-based non-profit that aims to change what it’s like for children with illnesses and disabilities to have their photos taken. They do it by going straight to the source—the photographers themselves. In the last three years, hundreds have participated in SKPA’s accreditation clinics, where a one-day course teaches staffs from professional portrait studios the unique skills needed for working with children who have disabilities or are seriously ill.
Lewis and Dórame developed the clinic curriculum during the five-plus years it took Lewis to muster the nerve to start her own nonprofit. “It was a long process of just thinking, ‘Is this something that’s necessary? Will people appreciate this? Will they find value in this?’” Lewis recalls. While mulling over the Special Kids concept, they researched how to work around the quirks that made standard-issue studio photography such a challenge for children with disabilities. Dórame, who had professional photography experience from her work in public relations, began putting some techniques to the test. The pair also quizzed families about what they wanted in a picture. “Most parents,” says Lewis, “just wanted to record their children and capture the blessing they have with them.”
Once the fledgling organization was born, its first challenge was getting photographers to listen. Lewis and Dórame soon learned that not everyone was convinced there was a problem. According to Lewis, “A lot of photographers said, ‘There’s nothing different about taking a picture of a child with special needs or one who’s disabled or ill. We treat all children the same.’ But there are things that can help even the most compassionate and thoughtful photographer take a better picture.”
That’s where SKPA’s accreditation clinic comes in. In classes attended by up to 50 professional photographers, instructors teach technical and social skills for photographing special-needs kids, based on the characteristics of various disabilities. For instance, autistic children tend to shy away from eye contact. Children with Down syndrome may tire easily and usually let it be known with heavy sighs. Some children can’t sit up on their own and others, fueled by unspent energy, can’t sit still. Dórame explains, “It’s like inviting a butterfly into your studio and asking it to pose on a stool and give you a giant smile.” For photographers who complete the one-day training, take a written test and submit four photos for approval by the SKPA review committee, SKPA offers its own accreditation. Experienced photographers are then listed on the organization’s website.
In addition to getting technical advice on using creative lighting, candid shots and props, workshop participants learn about the linchpin of SKPA’s photography method, the pre-photo interview. Using a set of child-specific questions, the photographer pow-wows with a parent, and sometimes the child subject himself, to figure out the child’s likes and dislikes. The session helps the photographer decide how to get the child’s attention, how to communicate, how much space to allow the child, even when to use a flash. (In some children it can cause seizures.) That extra few minutes up front helps the shoot run more smoothly, so the photographer can produce pictures that the family will love.
For Dórame, who now acts as executive director of Special Kids Photography, the results of an SPKA photo shoot are worth far more than a thousand words. In her book Photographing Children with Special Needs, a grinning, gap-toothed child lies upside down on her bed, her mane of blonde hair fanning downward; the girl, who has autism and is blind, glows with natural light. In another picture, a boy with a mohawk and studded leather wrist cuffs smiles smugly from a motorized red wheelchair in his self-described punk rocker pose. A shot by Houstonbased photographer Laura Popiel shows a toddler in an Easter bonnet with her face turned sideways to the camera; it’s a good alternative, suggests Dórame, for children who are blind.
“The photos aren’t designed to hide the child’s disability. If anything, they celebrate it, and that’s the point,” says Dórame. “When you go to the mall and see a child coming through the crowd in a wheelchair, the natural instinct is to look away. Imagine the joy the parents have when they can hang a picture on their wall that people stare at— ‘What a lovely photograph of your daughter! How gorgeous she looks!’”
In fact, the beauty and honesty of the photos can be surprising even to family members. At one recent shoot by photographer Sally Harding, an SKPA board member, the skeptical father announced, “You’ll never get a photograph of my daughter; no photographer ever has.” Harding did. “The girl usually turns away whenever she sees a camera, but Sally was able to catch her at just the right moment with her brother’s guitar in hand,” reports Dórame. “Positioned on a bench in front of the piano, she looks like an accomplished musician.”
In the three years since its inception, SKPA has gained a groundswell of support from the likes of Epson America Inc., Pacific Life Foundation and Burrell Professional Photo Labs. It has also formed partnerships with major photography groups, including Professional Photographers of America, American Society of Photographers, and Wedding Portrait Photographers International, where Dórame will be a platform presenter at the upcoming March convention in Las Vegas. Though funding is tight and Special Kids Photography is always on the lookout for new sponsors, it continues bringing interested photographers into the fold.
Last year, Lewis left the organization’s operation to her mother so she could spend more time with Taylor, now 11, and daughter Mckinsey, 13, in their Flagstaff, Arizona, home. Although Taylor still deals with his disability daily and will require physical and occupational therapy all his life, he’s beaten his initial prognosis by a long shot. “He can walk, run, bike, hike and swim, and is in many ways a typical 11-year-old,” says Lewis. “He’s exceeded any kind of expectation they had for him.”
Watching Taylor, who is about the size of a five-year-old, Lewis sees only an ultrabright wannabe basketball star, a kid who’s doing algebra through an on-line course and is so social that he’d love to transition into a regular school next year. That’s the kind of clear vision she hopes Special Kids Photography can share with other families of children with disabilities. “They are dealing with so much every day,” she says. “We try to empower them by saying, ‘Your child is beautiful in his or her own way. Your child is a gift. Don’t be afraid to celebrate the differences.’”
by Melody Warnick
Special Kids Photography specialkidsphotography.com
Melody Warnick is a Iowa-based freelance writer. Her website is melodywarnick.com