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From
The Telegraph in the UK:
New grassroots organisations have been set up to open doors for the disabled, but progress is slow. Some hope that Sochi's Paralympics will provide a model of access
Living with a disability in Russia is an epic struggle. Take Liliana Fyodorova (pictured). To leave her apartment building she must descend six steep and narrow concrete steps. Backwards. In a wheelchair. Three times she's fallen, bouncing her head off the unyielding floor so sharply that she was hospitalised.
Things have improved in recent years, but only a bit. The collapse of the Soviet system meant advocacy groups were free to organise. Russia's drive for international respect and acceptance led to measures that, at least on paper, suggested solutions.
But progress is as slow and painful as Fyodorova's journey from home to city street and often comes only through extraordinary personal will or ingenuity.
"In Russia, a disabled person is excluded from life with very few exceptions," she says. "If the government could create a ghetto and exile all the disabled, they'd do it. But because we want to be treated like a civilised country, we don't do that."
Fyodorova was 27, a wife and the mother of a five-year-old daughter, when botched surgery for a ruptured disc left her paralysed from the waist down. A surgical nurse herself, she had sought out the best doctors at one of the best hospitals. To no avail.
"I came to the hospital in high heels; I left in a wheelchair," she says. In deep despair, she'd begged her doctors for a fatal overdose.
A year later, while she was still bedridden, her husband left her, demanding custody of their child. "He said a disabled person shouldn't raise a child." Fierce anger banished the despair. "I said: ‘I'm going to live!'"
The disabled in Russia are invisible people, outcasts. Alexey Nalogin says he'd never seen anyone in a wheelchair until he was stricken himself. Like Fyodorova, he awoke from surgery a paraplegic. A series of bone grafts gone wrong had left him with an S-shaped spine so deeply curved he couldn't sit up. He was just 14.
The system wrote him off, expecting him to die young. "In Russia, someone who's disabled is treated as someone whose life is over," he says.
He spent the next eight and a half years in bed. But as one door slammed shut, another opened: the internet.
From bed, Nalogin taught himself computer skills, created a charity website for a children's hospital and started a web design business. Inspired by pictures of Western leg braces on the internet, he invented his own full-body brace. It enabled him to use a wheelchair. But, like Fyodorova, he faces a daunting obstacle course just leaving his apartment.
Fyodorova and Nalogin are among the 13 million Russians with disabilities, many of whom endure lives constricted by the walls of their homes. Russia's leadership recognises how deep and broad the problem is.
"When a disabled person can't go to the store, get easily on a plane or train, visit a museum, gym or cinema, or get a decent education, it's not just indifference or carelessness, it's a direct violation of the Constitution," president Dmitri Medvedev said in a speech last year.
Under Medvedev, Russia has signed a UN convention on the rights of the disabled. It promised to make Sochi a model of accessibility when the city hosts the 2014 Winter Olympics. There are new programmes and services, mainly in Moscow. It's now possible, for example, for a disabled Muscovite to call a special taxi – if there is someplace to go. But there is almost no access to public transportation.
Many of the new laws are flawed or get only token compliance. "Russia has much more bureaucratic inertia than other countries," says Mikhail Terentiev, a member of parliament and secretary-general of the Russian Paralympic Committee.
The success of Russia's Paralympians, who took top honours at the Vancouver games this year, is helping change attitudes. "They show the rest of society that we can make a contribution to improving the image of our country," says Terentiev, who won seven Paralympic medals in 1998, 2002 and 2006 in biathalon and ski racing.
Like respect, jobs for the disabled are scarce. The government says 40pc, around 5 million people, are able to work. But fewer than a million do, despite a law saying the disabled must be at least 5pc of the workforce at firms with more than 100 employees.
"They think people with disabilities will be a huge burden to them," says Denise Roza, executive director of the advocacy group Perspectiva, a pioneer in employment programmes for the disabled. Similar barriers mean inclusive education remains a distant goal. Schools fear being overwhelmed, Roza says.
For Fyodorova, getting a job was a turning point. After winning custody of her child, she spent years in rehab. Then, in 2002, she went to work at Perspectiva: "I started feeling like someone who was useful to society."
She spent two years working on employment issues. The job inspired her to go to law school. She was the first wheelchair-bound student at her university, which installed ramps for her.
Fyodorova plans to devote her life to disability law. "There are so many people like me in Russia," she says.
From The Telegraph in the UK:
