Picture This: Capturing a Special Beauty

<p>David Wilkening</p>
July 11, 2005

Nicholas Popiel, age 4, photo by Laura Popiel

A visit to the photographer is usually a fairly routine matter for many families. Sit here, says the photographer. Look at the birdie. Turn. Smile. Flash.

But as grandmother Karen Dorame found years ago, families with special needs children sometimes find an event that should be routine can become a mini-nightmare: upsetting and frustrating for everyone.

In 1998, Dorame's daughter, Heidi Lewis, took her one-year-old son Taylor to a photographer. Lewis wanted a professional portrait to mark Taylor's successful battle with a connective tissue disorder. The disorder had left Taylor with unusually tight skin and rigid limbs.

"He didn't look like other children. He had unusual features and was not like a typical baby," says Dorame. "The photographer tried to turn my daughter away. I found out later this happens all the time."

"When I first started doing research on this, I found that photographers were turning away many ill children. In some cases, they would ask the parents to come back when a child's hair grew back. Unfortunately, many didn't live long enough for a second visit," Dorame recalls.

From Irate Grandmother to Foundation Founder

Lewis suggested Dorame start a foundation to educate photographers and others to look beyond their own discomfort with special needs children, and Dorame took her up on it.

At the time, Dorame was working in public relations for the Orange County health department in California. After retiring and moving to Arizona, she spent several months setting up Special Kids Photography in 2002, with the goal of producing a book and holding training sessions for photographers. Epson America Inc. helped her with an initial $3,000 worth of photographic equipment.

Dorame is not aware of any other organizations doing similar work. Her goal is nothing less than "changing the way photographers and the general public look at children with special needs."

Doing Her Homework

When she began, Dorame knew she had to do some homework. A photographer friend, Sally Harding, helped her do the research and to gather material for her seminars.

"We went to the Latch School in Phoenix, which has only special children. We not only talked to the principal and the therapists, we actually sat in the classrooms. We also found a parent who agreed to let us shoot her child," Harding recalls.

Dorame, who is in her 60s, interviewed dozens of therapists and directors of therapeutic homes. She also interviewed psychologists."I asked them what would happen, how children would react to the camera," she says.

She read numerous books and spent countless hours on the Internet."I learned you can't get kids to do what you want. You just have to have patience and catch them in the right angle, the right mood and in the right light," she says.

Sharing What She's Learned

The intensive one-day seminar for photographers is geared towards giving them enough information to feel comfortable. "We try to ease their fear of working with children with special needs," says Dorame. "The most common problem is their (the photographers') fears about the unknown."

The course includes information on the specific symptoms and needs of children who might have diseases such as Down syndrome or muscular dystrophy, and how that might affect the photographer's approach. The needs of children with autism, an increasingly common disorder, are also discussed in a slide presentation.

Photographers at the end of the day have to pass a 100-point test with true/false and multiple choice questions. Some samples: True or False: Certain kinds of light can trigger seizures in children. (True.) True or False: Children should never be removed from their wheelchairs during a photo shoot. (False)

Beyond "Say Cheese!"

Debbie DeFoggi, an interior decorator in suburban Houston, knows what it's like to visit a professional photographer untrained in the needs of special children. Her daughter, Hannah, now five years old, first went to a studio photographer when she was a year old.

Hannah and Joshua Defoggi, photo by Laura Popiel.

Hannah has cerebral palsy. "The photographer kept saying she can't sit up or stand. It was like he was saying, 'She can't do this, she can't do that. What can she do?' We left there in tears," she recalls in an exasperated tone.

Harding says she quickly learned that special needs children often have very different requirements for being photographed. "So you have to take some time and you have to know more about them," she says.

"When we started doing research for the book and for the whole program, we didn't know what would work and what would not. We were kind of scared," Dorame recalls. But they learned some general guidelines to include in their seminars.

Children with autism, for example, may not attend to requests to sit or smile on command. Looking someone straight in the face is very difficult for some. "When they're held by someone they know, they tend to settle down," Dorame says. For epileptic children, flashbulbs might trigger a seizure. In general, the seminars urge photographers to avoid studio lighting and to shoot in more natural surroundings, and also to expect sessions to take longer than usual.

Most photographers want a smiling child. So Dorame came up with little tricks to help.

"You can try to show something that delights them, something they like to hear like a musical keyboard. For some children, certain words make them feel happy. Another technique is to fake a sneeze, which many children think is funny," Dorame says.

And Dorame recommends that photographers ask parents about their expectations for how their child will appear in the picture. For instance, if the child is missing an arm or a leg, do the parents want that to be clear in the picture? Dorame says parents split about 50-50 on that question.

Seminar: Understand your Subject

One of the hundreds of photographers who have taken the course is Laura Popiel, who herself has a child with Down syndrome. She has actively sought out the business of families with special needs children, who now make up more than half of her clientele.

"It takes a little more time then just taking a child to a JC Penny's or Sears. When somebody calls me, I go over a lot of questions. I ask about their disability," says Popiel, who lives in Houston. "So many parents want pictures of their children and they're not getting it because of the cookie cutter situation," She adds.

"Photographing Children with Special Needs", Amherst Publishing, can be ordered online from Special Kids photography.

Dorame agrees that there's a large untapped market—perhaps one in eight children—for special needs photographers.

Her foundation exists on a budget of less than $10,000 a year. She receives no pay. Book sales and the $50 fee for the seminar help, and donations do the rest. Dorame's foundation tries to educate the public on areas where special children have the potential for increased visibility such as photography contests, acting and modeling.

"You don't do this for the money but for the many children and parents who contact me or send me e-mails over their happiness at capturing how a child looks. There's a real joy in it," says Dorame.

Satisfied Customers

Over the past four years, DeFoggie has been a repeat customer of Popiel, who has recorded birthday parties and photos of Hannah side-by-side with her brother Joshua, a typically developing eight-year-old.

"Laura takes her time. She's not in a rush. She'll take all day if necessary. If you're a nervous parent, she tells you to wait in the car. And when you see her pictures, it's like you know that it's your child. She captures their personality. It's like she captures their heart and their spirit," she says,

DeFoggie has taken other parents of children with special needs to Popiel's studio several times.

"The parents always cried. Every single time they broke down and cried," she says. But they were not tears of grief, she adds. They were expressing happiness and relief. Someone finally got the picture.


David Wilkening is a former newspaperman who is now a freelance writer living in Orlando who writes about various subjects, including travel.





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