Willing and Able in Russia

MOSCOW —  The question haunts Russia’s disabled.

Arkady Murashuv heard it years ago, when he applied to journalism school. An industrial accident had crushed his career in a metal factory. He thought he might learn a new trade, work from his bed editing copy or checking facts. The admissions committee turned him down.

“You’re sick,” they told him. “You can’t study. That’s that.”

Behind the gruff rejection, Murashuv sensed the disbelief: Why bother working when you can collect a comfortable pension? Why bother learning when you’ve been ruled unfit? Why bother?

Yuri Bausov heard it anew recently, when he pushed his wheelchair through the muddy Moscow streets to vote in parliamentary elections.

He was determined to cast his ballot just like every other citizen--even though he had to ask strangers to carry him to the second-floor polls.

“Why did you come here?” election officials asked him, baffled. “Why didn’t you just sit home and tell us to collect your vote?”

Bausov knew the subtext: Why bother leaving your apartment when you can demand service at home? Why bother acting like others when you’re clearly, sadly different?

The questions assume--as Russian law has for decades assumed--that disabled citizens need protection, help, handouts.

It is an attitude that disabled rights activists increasingly resent. They find the coddling condescending, the sympathy smothering. They refuse to stay shut up in their apartments, pleading for perks.

Instead, they have launched a swelling civil rights movement that aims to change the way Russians look at their disabled comrades--and the way disabled citizens look at themselves.

“We want a disabled person to feel that he can do whatever anyone else can do,” Bausov said. “Sure, it will be more difficult for him. But he can do it.”

The activists recorded at least a symbolic victory in late November, when President Boris N. Yeltsin signed a law guaranteeing disabled citizens equal access to education, employment, transportation and services.

Most important, the new law no longer defines an “invalid” as “someone unable to work.”

So far, the government has not allocated any money to turn the promising rhetoric into reality. But disabled leaders still consider the law a triumph. As a political statement, they say, it is worth cheering.

“Before, the government considered disabled people unproductive members of society. The state took care of them quite simply--gave out a pension and figured they didn’t have to worry about anything else,” said Alexander V. Lomakin, chairman of the All-Russian Society of the Disabled. “Now we have this law that shows a disabled person has all the rights of other citizens, and we need to help him return to a normal, productive life.”

Traditionally, any Russian with a physical or mental disability--from a bad limp to chronic stomach troubles to an amputated arm--has been able to register as an “invalid.”

That status entitles each to a monthly pension and other privileges: free wheelchairs, cheap cars, subsidized phone service, personal tutors, even home delivery of election ballots. Disabled Russians can cut in line at the bread store, ride the subway for free and buy cut-rate airline tickets.

Such benefits have undoubtedly made life easier. But they also have reinforced the stereotype that disabled citizens cannot join mainstream society--they cannot study at regular schools or earn money at regular jobs.

Russia’s woeful medical system further isolated the disabled.

Shortages of wheelchairs, canes and artificial limbs turned many residents into prisoners of their apartments.

When the equipment finally materialized--sometimes after a year’s wait--it was usually of poor quality. Wheelchairs were clunky. Prosthetics were flimsy. Even hearing aids rarely worked right, acknowledged Ilya V. Lebedev, director of the government’s disabled affairs department.

Just as disastrous, the state-run health care system offered little, if any, rehabilitation therapy. Rather than working with people to overcome disabilities, doctors would simply write notes declaring their patients “invalids.”

Lebedev is only now creating rehabilitation centers across the country.

“Before,” he said sadly, “we didn’t have a system for it.”

Even today, some doctors refuse to issue to disabled residents the health certificates required to enter universities, trade schools or public swimming pools.

To justify their decisions, they drag out the “Why bother?” rationale: Why should a student with cerebral palsy struggle to study at Moscow State University? Why should an amputee strain to play sports? Better that they sit home, conserve strength, live off government largess.

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“The government created a separate, almost invisible program for disabled people and kept them pretty much hidden away from the rest of society,” said Bruce Curtis, who coordinates Russian outreach for the Oakland-based World Institute on Disabilities.

When he sought to enter journalism school, Murashuv tried to argue away such attitudes, telling the admissions committee that his mind remained agile even if his legs were useless. His reasoning impressed no one.

“The desire was there, the ability was there, but without that doctor’s note, I could not enroll,” Murashuv said. “The insult still hurts. It hurts my soul.”

During Soviet times, deaf and blind citizens did manage to set up organizations to lobby for better treatment.

Their high-profile work paid off: In the 1930s, the government founded a special institute for the deaf in Moscow that offered advanced degrees in engineering.

But Russians with limited mobility, such as Murashuv, could not even get together to talk, much less lobby. They did not join forces until 1989, when the All-Russia Society for the Disabled was founded.

Supported by its 2.2 million members, Lomakin has led the new civil rights push.

He is fighting for all disabled citizens, but he speaks with special passion--and personal experience--about the troubles plaguing those who must use braces or canes or wheelchairs to get around.

Lomakin’s most urgent goal is to pry open jobs for disabled adults like himself.

The Soviet Union’s flat-out ban on disabled workers has disintegrated in the past decade.

So, for example, Lev Indolyov--who for years had to hide his job as a translator from authorities--can now openly host a television program from his wheelchair.

Yet it remains difficult for anyone with a disability to find work.

Lomakin estimates that fewer than 15% of disabled adults who want to work hold jobs. Thousands of those who do earn paychecks have settled in special factories run by the All-Russia Society for the Disabled.

Aiming to overturn workplace barriers, the new civil rights law requires businesses with more than 30 employees to set aside at least 3% of their jobs for disabled Russians.

Firms that ignore the quota must pay into a government fund to create employment opportunities. Advocates for the disabled applaud the quota system--in theory. But they doubt that it will be enforced any time soon.

“Tell me when we’ll get out of this economic crisis, and I’ll tell you when the law will be implemented,” Lomakin said gloomily.

Indeed, despite the generous promises of the new law, this year’s federal budget includes no money to improve accessibility or fight discrimination. The Russian government has other worries.

With war in Chechnya, tumult in the parliament and an alarming run of crime, unemployment and poverty, lawmakers are not inclined to spend precious money installing ramps on Moscow subway stations.

Neither are ordinary Russian citizens.

Attitudes toward the disabled have softened greatly in recent years as Russians have become more accustomed to seeing wheelchairs and crutches on the streets.

Civil rights posters, such as the one in Lomakin’s office pleading, “Look at me as an equal,” have also helped educate a population that long considered the disabled as helpless wards of the state.

Disabled residents say strangers no longer shrink away from them in disgust but approach with a smile to offer a hand.

“We have such kind, soulful citizens in Russia,” said one wheelchair-bound man begging in a subway station. “They always offer to help.”

But lending a little muscle to hoist a wheelchair upstairs is one thing; paying new taxes to finance access ramps is quite another.

“Russia has 6 million disabled people out of a population of 150 million,” said Lebedev, the government official. “People say, ‘Why spend a great deal of money for [accessible] transportation, special buildings, schools and so on for such a small percentage of the population?’ ”

That attitude sounds woefully familiar to veterans of the disabled rights movement in the United States.

A landmark U.S. law requiring buildings to be accessible to all was passed in 1968. Change, however, came slowly. Colleges and government offices began to accommodate wheelchairs only after a 1977 law banning discrimination at all institutions receiving federal funds. The sweeping Americans With Disabilities Act mandating accessibility in the private sector did not take effect until 1990.

“People in America have short memories,” Curtis said. “The situation in the U.S. 15 or 20 years ago wasn’t a whole lot different from the way it is in Russia today.”

With one critical exception: the courts. When disabled Americans encountered discrimination, they sued. The courts backed them up.

But in Russia, the judicial system is largely considered helpless to enforce laws. Even when judges do step in to settle a dispute, they accomplish little; the justice minister recently acknowledged that at best, half of all court rulings are implemented.

So disabled activists know better than to rely on the courts to further their cause.

Instead, they are campaigning to raise public awareness about the problems they face and the solutions they envision.

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It is a daunting task in a country that has long isolated the disabled.

“In Stalin’s time, you wouldn’t see any disabled people on the streets. They were all shut up in their apartments,” said Tatyana Belashko, who felt rejected and abandoned after injuring her legs eight years ago. “It was said that Soviet, socialist society couldn’t have invalids. They could only exist in capitalist societies.”

Fighting such myths, disabled activists have tried to explain that they not only exist but also excel.

Recent nationwide festivals have showcased blind singers, deaf painters and other disabled artists.

The “Paralympics” for disabled athletes hit Russian television for the first time in 1994. At least a dozen newspapers across the country focus on disabled issues, emphasizing the community’s diversity and talent.

The World Institute on Disability has spent three years trying to boost this emerging civil rights movement. Backed by a $450,000 grant from the U.S. Agency for International Development, American advocates for the disabled have stormed into towns across Russia, teaching public relations and management techniques to novice activists.

Their first challenge is just to gather disabled leaders together.

In all of Moscow, two dozen buses and two trains have lifts to boost disabled passengers to the door, according to Nikolai Zhukov, editor of the Russkii Invalid newspaper.

To get around on the subway, wheelchair users must beg strangers for help descending steep steps and climbing aboard crowded escalators. Crossing streets is another hardship: The pedestrian tunnels that bridge major boulevards are accessible only by stairs. Most buildings too sit atop steps slick with ice during winter, slushy with mud during the spring.

Even the Ministry of Social Welfare, where disabled citizens apply for benefits, lacks an outdoor ramp. The imposing concrete staircase has no railing either, so visitors who use crutches or braces have a tough time keeping their footing.

“The only way to get in is [carried] in someone’s hands,” Indolyov said.

Simply leaving home can be quite a chore for the disabled. Russia’s creaky elevators usually open on to at least half a dozen steps leading to the front stoop. Busted light bulbs and wayward bags of trash can make navigating the stairwells tricky even for the able-bodied.

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The elevators themselves are no better. Many are too narrow for wheelchairs. Others break down frequently.

“When the elevator doesn’t work,” Belashko said with resignation, “I just sit home and wait for it to work.”

Bausov added his own lament: “If there’s a fire and they shut off the elevators, I can only sit here and wait for them to put out the flames.”

To Lebedev, the government official in charge of disabled affairs, such stories signal yet again that Russia’s approach toward disabled citizens needs a serious overhaul.

A fast-talking dreamer, Lebedev speaks of building rehabilitation centers and creating employment services for the disabled. He describes accessible cities and open-minded citizens. And he vows to stomp out the stereotype of disabled Russians as shut-ins dependent on government handouts.

“A person should be a person,” he said firmly.

The growing community of disabled rights advocates shares Lebedev’s dreams.

“You wouldn’t work here if you were a pessimist,” Lomakin said.

But even optimists acknowledge that real change will take decades. Russia itself must mend, they say, before society heeds their pleas. Or, as activist Nikolai Grinin put it, “When your country’s in ruins, no one has time for the disabled.”