‘Softness in the struggle’: Living with a disability

Published 9:03 AM EST, Wed December 9, 2015

Story highlights

Claudia Gori photographed Camilla, a Danish mother who has muscular dystrophy

Despite her disability, Camilla leads a happy life and keeps a positive attitude

CNN —  

Photographer Claudia Gori watched as Camilla, a young mother with muscular dystrophy, got on her knees and prepared to lower herself to the ground beside her 5-month-old twins.

It was in December 2014, and Gori was shooting Camilla for her final project at the Danish School of Media and Journalism in Aarhus, Denmark. She’d hoped to capture the everyday life of a person with a disability, and when she met Camilla, she knew hers was the story to tell.

It was for moments like this: when Camilla wanted to hug her babies and snuggling on the floor was the best way to do it. As much as Camilla might like to lift them, she can’t.

“I saw, in one gesture, both struggle and sweetness,” Gori said. “That picture touches me in a very intimate way.”

Photographer Claudia Gori
Claudia Gori
Photographer Claudia Gori

Camilla is now 34 years old, and she lives with her boyfriend, her 4-year-old daughter and the twins, now 17 months old. There are many types of muscular dystrophy, and there are still questions about Camilla’s exact type, Gori said, but the disease causes weakness and loss of muscle mass throughout the body.

What it means for Camilla is that she can’t take walks or function at home without help. She tires easily and regularly receives physical therapy. But her will to be a mother and girlfriend is stronger than her struggles, Gori said, and there’s no doubt: Camilla is happy.

“All the struggles are nothing compared to her positive spirit,” Gori said.

Just as Camilla was open to welcoming a photographer into her home, she was willing to share intimate images of her body. To understand Camilla, Gori said she needed to see the curve of her spine and the scars that remain after decades of testing and treatment.

She wanted the images to be just as she perceived Camilla: delicate and gentle, a person for whom there’s “softness in the struggle.”

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“I’m very fascinated by the human body,” Gori said. “The way it seems different with the change of lights, the way it dialogues with the space, the way it reveals stories in its details.”

Gori feared she would make the mistake of photographing a disease when what she hoped to capture was a life – a happy one, despite physical disability. Camilla made it easy.

“I wanted to tell her story, and she wanted her story to be told,” said Gori, who hopes to continue photographing Camilla now that she’s back to work. “This is the best gift for a photographer.”

Camilla’s attitude was its own lesson, Gori said. She knows she can’t have a different body, and it doesn’t stop her from pursuing – and achieving – her goals.

It’s what Gori saw when Camilla laid on the floor with her babies: Don’t look at what you can’t change. Instead, focus on everything that’s possible with what you can control.

Claudia Gori is an Italian photographer. You can follow her on Instagram and Facebook.