Friday, November 6, 2009

French couple plans to webcast their disabled daughter's life to the world, France worries they are invading her privacy

From The AP:

PARIS — Disabled with severe cerebral palsy, 32-year-old Anne Lamic (pictured) spends her days in southeastern France mostly in bed, surrounded by stuffed animals and dolls. She cannot speak or walk, and she sometimes has seizures.

Now, Lamic's parents are planning to broadcast her quiet life to the world via webcam. Their announcement has caused a stir in France, with many criticizing the plan as an invasion of Lamic's privacy and asking: How far is too far in the struggle to make disabled people more visible in society?

In terms of disabled rights on issues such as visibility and accessibility to public transport and buildings, advocacy groups say France trails behind Nordic countries, the United States and Canada, despite a 2005 law designed to ensure their rights are upheld.

Lamic's father says he hopes to force people into confronting their prejudices, even if his tactic startles them.

The webcam "will allow people to see handicaps in ways that are real, everyday and familiar," Didier Lamic told The Associated Press in a telephone interview Friday, adding that the videos "must be watched with tenderness and love."

Advocates for disabled rights say the parents surely have good intentions, but many are dismayed — especially because Anne Lamic, whose family says she has physical and mental abilities comparable to a 1-month-old infant, cannot have a say in the matter.

"How is this young woman going to benefit?" said Monique Rongieres, president of Group Polyhandicap France. "Will people peering into this young woman's life be well-meaning? I'm not sure."

Maudy Piot, the founder of FDFA, an association promoting the rights of disabled women, supports the Lamics' initiative, saying, "Let's stop hiding people who are different."

Visibility of the handicapped is a problem in France, especially on television and in the media. A report last month from France's audiovisual regulator scolded TV stations because a meager 0.2 percent of people depicted on the airwaves have disabilities.

Didier Lamic, who lives in the southeastern village of Tallard, set up a Web site devoted to his daughter, http://www.doudouworld.com, in August, hoping it would make those in her situation "less invisible."

Decorated with a background of twinkling stars, it includes photos of Anne Lamic and news about her life — visits from nieces and nephews, a bout of scarlet fever. One goal is to reach out to families in similar situations.

"A lot of families feel their children are excluded, imprisoned in a world where people don't see them or know them," said Didier Lamic, who worked in a medical care center before his retirement.

Lamic and his wife Chantal have cared for Anne at home since she was born. Though activists have asked why they don't take their daughter out more if they want her to be seen, Didier Lamic says that's difficult — she has to remain lying down, and an ambulance collects her for medical appointments.

When he recently decided to add a webcam to the site, Lamic informed a nearby newspaper, hoping for a mention on the local pages.

The story touched a nerve and went national, even though Lamic is still waiting for the camera to be delivered.

Lamic says his daughter will not be filmed in private moments, such as baths. The site, in preparation for the webcam's installation, includes a warning about her seizures.

Lamic says he has received more than 600 messages, most of them supportive.

Jean-Marie Barbier, the president of the Association for the Paralyzed of France, studied Internet chatter about the initiative. He says its supporters are mostly people with no firsthand experience of disabilities.

"They write, 'bravo, I cried when I saw this,'" he said. "But I'm not sure their crying is something that will help the cause."