David Werner

Founded in 1988 during the time of glasnost and perestroika * in the former Soviet Union, the All-Russia Society of the Disabled (ARSD) has been growing rapidly ever since. Today, as a non-government association with 2.2 million members, it is the largest society of people with physical disabilities in the world. It has 78 regional offices and 19,000 affiliated local organizations. ARSD’s goal is to “defend the rights and interests of disabled people and to facilitate their integration into society.”

Launching Disabled Village Children in Russian.

In the early 1990s the ARSD formed a friendly alliance with the World Institute on Disability (WID), a California-based disability action group which now has a regional office in Moscow. One of the leaders of WID’s program in Russia is disabled organizer and activist, Bruce Curtis. For 13 years Bruce has been an advisor and peer counselor to PROJIMO, the community rehabilitation program run by disabled villagers in western Mexico where the handbook Disabled Village Children was developed. (Translated into many languages, the book is now used throughout the Third World.) In 1992 on a visit to Russia, Bruce Curtis introduced the English edition of Disabled Village Children to leaders of ARSD. They at once felt that if translated into Russian it would be an invaluable tool for the parents of disabled children, especially now that so many families cannot afford professional services or commercial equipment.

Some rehabilitation professionals have raised doubts as to whether Disabled Village Children— written for rural areas of the Third World—would be useful or appropriate in Russia. However, the Board of ARSD felt strongly that many of the principals of self help, empowerment, and low-cost appropriate technology included in the book could be useful in the current situation in Russia. They point out that since the country’s transition to a market economy, the social support system is in disarray. With the deteriorating economy, 60% of the population now lives below the poverty line. Falling wages and increased unemployment together with the high costs of newly privatized medical and rehabilitation services have made it increasingly hard for ordinary people to meet their needs. Given current constraints in accessing basic services and assistance—which in some ways parallel those in the Third World—ARSD decided that Disabled Village Children might provide basic ideas and tools for helping families of disabled persons meet their needs with greater selfdetermination.

The Russian translation and preliminary production of Disabled Village Children was completed by ARSD in record time. Athough the team initially (and unrealistically) estimated the cost for the Russian edition at $5000, the finally cost turned out to be over $100,000. Bruce Curtis and ARSD did an incredible job of fund raising, obtaining donations from everyone from UNICEF and Dutch non-government organizations to private businesses. It was marvelous to see so many diverse groups collaborating on the project.

To launch the Russian translation of Disabled Village Children, in March, 1995, ARSD invited the book’s author, David Werner, to Moscow to help lead a workshop in its use. The two-day workshop, organized with the cooperation of WID and sponsored by a wide range of Russian businesses and international NGOS, was attended by more than 100 participants—mostly disabled persons and parents of disabled children—from all over Russia. For those of us new to the country, the participants’ enthusiasm, creativity, and thirst for new ideas was awesome.

* In the late 1980s, President Gorbachev introduced new policies of glasnost and perestroika. Glasnost was a policy of openness. After decades of suppression of information, Soviet citizens were finally granted freedom of the press and were allowed to organize freely. Perestroika was the restructuring of the Soviet government and state-run businesses that Gorbachev implemented in hopes of saving the country from economic collapse. Although these policies, particularly perestroika, have been controversial and some would argue that they led the way to the collapse of the Soviet Union, they also undeniably paved the way for groups such as the ARSD to form and gain public support.

The Workshop

Held on March 1 and 2 in a conference center an hour rom Moscow, the workshop was demonstrative of the energetic popular movements that are emerging throughout Russia in response to the growing polarization between rich and poor. I have attended disability seminars in many countries, but this workshop was unique in terms of the ebullient participation of virtually all those present. Leaders of more than 40 local disability organizations were present from all over Russia, including Siberia.

The workshop was organized jointly by WID and ARSD, and was sponsored by various organizations in Russia, Europe, and the US. The purpose of the workshop was to introduce the new Russian translation of Disabled Village Children and to explore more participatory approaches for meeting the needs of disabled children in the family and community.

Those attending the workshop were mainly disabled persons and parents of disabled children, along with a few rehabilitation professionals. All felt that the book Disabled Village Children was a valuable resource of ideas, skills, and strategies that could help empower families to take more creative responsibility in meeting the needs of their disabled children. However, they agreed that this book should be a starting point toward the development of similar materials created specifically for the needs and possibilities in Russia.

During the workshop, participants considered the range of needs—edical, physical, psycho-social, environmental, and educational—of individual disabled children. They then divided into groups and, using ideas from Disabled Village Children as a springboard for creativity, tried to come up with in- novative solutions and designs for assistive equipment that are realistic in the current Russian setting.

One of the most important concepts that people said they learned in the workshop was to give disabled children more of a say in defining their own needs, their own aspirations, and in looking for solutions.

Rights and Opportunities of Disabled People in Russia’s Recent History

It is both fascinating and disconcerting to compare the evolution of disability rights in the former Soviet Union with that in Western Europe and the United States. In some ways the gains made on the Eastern side of the so-called Iron Curtain were greater than those in the West, and in other ways the Eastern block lagged behind.

Paradoxically, the greatest gains by disabled people under the Soviet system were made in the area of self-financing achieved through successful disabled person-run business ventures—a process akin to capitalism at its best. By contrast, in the capitalistic West many of the biggest gains were made in the area of public charity and government assistance—advances more in line with Socialism. This paradox may in part be due to the fact that, according to Soviet ideology, all citizens should contribute productively to the state economy. Presumably, this included disabled people with productive potential. Since disabled persons who were able to work were often unemployed, authorities encouraged mechanisms for self employment. As far back as the 1930s, the government began to assign some of its state-owne businesses over to groups of disabled people. With disabled management and a majority of disabled workers, these business ventures proved so successful that the government placed more and more enterprises under control of disabled groups.

By 1955, when this enabling process reached its zenith, close to 85% of employable disabled persons in the USSR wer self-supporting. Income from their businesses covered nearly all the costs of non government rehabilitation and skills-training programs for the disabled. By contrast, in the USA (one of the more advanced Western countries in terms of disability rights) employment levels of disabled persons still range between only 15% and 30% and most programs for the disabled depend heavily ongovernment assistance. Likewise, by running and financing their own programs, disabled leaders in the USSR developed high levels of management skill. Meanwhile, management skills among the disabled community in the West are for the most part regrettably under developed.

By the late 1950s the disabled-run business enterprises in the USSR were so profitable that Chairman Kruschev decided disabled people were no longer at an economic disadvantage. So the Kremlin began to confiscate many businesses previously assigned to disabled groups for management. As a result, employment of disabled people began to decline.

Although in Russia many disabled persons and programs may have been more economically independent than in the West, in terms of social acceptance they lagged far behind. Disabled Russians had—and still have—little access into integrated social life of the community. This is due to both physical barriers and deeply ingrained prejudice. A major obstacle to changing this situation was that the central government strongly discouraged organized demands that challenged the status quo. Consequently, when in the late 1950s the government began to confiscate the businesses run by disabled people, there was little organized protest, and employment of disabled business leaders fell precipitously.

It is important to give disabled children more of a say in defining their own needs, their own aspirations, and in looking for solutions.

In spite of this setback, the self-reliance of disabled groups through business activities still persists to a high degree. A large number of enterprises are still controlled by associations of disabled persons. And the leaders of disabled organizations still have top-notch management and business skills.

During the new political space of glasnost in the late `80s, disabled persons began to organize and demand greater rights. Following the demise of the Soviet Union, one of their biggest successes was to win agreement from the government that businesses managed and operated by disabled persons would not be taxed. This tax benefit has given disabledrun enterprises a substantial economic advantage—so much so that in the current economic crisis many floundering non-disabled businesses, to stay afloat, are negotiating mergers with disabled groups in order to take advantage of the tax privilege. With Russia’s structural adjustment program (shift toward a free market economy) which involves privatization of government enterprises, the ARSD has succeeded in obtaining transfer from the state of 170 enterprises in five years. It now has a total of 1,500 enterprises which employ 45,000 people, 18,000 of whom are disabled. These enterprises produce clothing, brushes, electrical equipment, and souvenirs and are also involved in services such as hairdressing, legal consulting, and repair of shoes, furniture, domestic equipment, and even cars.

Through these income-generating businesses ARSD manages to cover a large portion of its program costs, even in the current economic crisis. In 1991, Filanthrop, a division of ARSD, was founded in Moscow. Financed largely through ARSD’s enterprises, it provides medical rehabilitation and various social services, works toward accessibility for social and cultural events, and raises public awareness on disability issues. It has conducted management training for disabled persons who want to start their own businesses, and in 1992 created a craft workshop for disabled artists who produce handicrafts of wool, fur, and leather.

The situation for most of us Russians is worse today than it was at the end of the Second World War.

Still, the overall situation for disabled people in Russia today is far from rosy. Although ARSD as an organization may have achieved an impressive degree of independence from an economic standpoint, most disabled Russians still have a long way to go before they achieve independent living from a social perspective. During the Soviet era, the state’s official statement was that “The USSR has no disabled people.” (For this reason none participated in the Special Olympics.) Even today, significantly disabled people are very rarely seen in public. Wheelchair accessibility, with a few recent exceptions, is almost non-existent. (Among the scores of disabled people at our workshop, apart from Bruce Curtis there was only one wheelchair rider.)

It appears that Russian society as a whole has an attitude that disabled people are a nuisance—especially the assertive folk who try to participate in the mainstream of life. When Bruce Curtis (who is quadriplegic) and I arrived at the Moscow airport, we discovered a huge flight of stairs that had to be descended, and no elevator. Our attempts to get airport officials to find a way get Bruce down the stairs proved futile. In the end, four fellow travelers from Europe and the US volunteered to carry Bruce down. If we had had to depend on the airport functionaries, we might still be waiting at the top of the stairs.

With the demise of the Soviet Union, evidently all the laws protecting the rights of disabled and other persons with special needs became defunct. Those public services that still function do so more as a hang-over from the past, rather than through legislative mandates. In trying to demand their rights, therefore, disabled persons are now in legal limbo. The ARSD has helped develop the draft of a National Law on Social Protection of the Disabled. But while some of the clauses have been passed into law, due to the present economic crisis most remain on paper only.

The Current Disabling Environment

Although organized efforts of disabled people in Russia during the `90s have achieved some gains, it has been an uphill struggle Indeed, some disability rights are being eroded as government swings further to the right and the economy crumbles. Employment of disabled persons, as of non-disabled persons, is falling. And for the lucky ones who have jobs, real earnings have dropped to subsistence levels. Adding to these hardships, the relentless privatization of public services, including health and education, means that many disabled persons simply cannot get the care or skills training they need.

Compounding these difficulties, a bill currently before the Russian Parliament proposes to withdraw tax privileges for enterprises run by disabled persons. This will make it extremely difficult for these enterprises to sustain the profit margin needed to finance non-government rehabilitation services and skills training. The ARSD is avidly campaigning to convince Parliament not to pass this socially regressive bill.

As in many Third World countries, the Russian government is now a recipient of “development” loans from the World Bank and IMF. As a condition of these loans, Russia is adopting many of the structural adjustment policies designed to bind the country to the global economic order with all its devastating inequities. Most disturbing of all, perhaps, is Russia’s adoption of the socioeconomic paradigm spelled out in the World Bank’s 1993 report, Investing in Health (see Newsletter #30), in which human beings are valued in strictly economic terms (“human capital”). Accordingly to this commodification of humanity, a person is worth what he or she can productively contribute to the national and global economy. From this chillingly mechanistic viewpoint, disabled persons are grievously undervalued; those who lack any economically productive potential are unworthy of public expenditure. Many Russians are awakening to their losses. As one participant in our Moscow workshop bemoaned, “We as a nation have lost our moral foundations.”

For all their difficulties, however, I was amazed by people’s commitment and enthusiasm. Disabled people in Russia and their families have one of the largest and most self-sufficient organizations in the world, and have become leaders in the fight for the rights of all disadvantaged people. Yet the obstacles are enormous.

The Downside of Russia’s Sociopolitical Transition

Now that Russia has converted to a market economy, the gulf between the wealthy and the destitute has rapidly widened. As the rewards of honest hard work have diminished, corruption and organized crime have flourished, both in the public and private sectors. Evidently, the combination of the Russian mafia and big business, with complicity of government officials, will stop at nothing to get richer quickly.

By running and financing their own programs, disabled leaders in the USSR developed high levels of management skill.

Political assassinations continue to escalate. One such assassination affected the publicity of our workshop. On the first day of the workshop, Vladislov Listyev, a renowned manager/producer of Russia’s most popular independent TV channel, was mysteriously shot to death. This came as a blow to the leaders of the ARSD. Listyev, who was strongly supportive of disability rights, had agreed to provide television coverage to our workshop and to announce the Russian translation of Disabled Village Children so that disabled people and their families all over the country could know about it. (Despite Listyev’s death, the workshop and book launching were covered on several TV and radio channels as well as in the press.)

No official statement as to why Listyev was murdered has been issued. However, conjectures suggest it was because of his public campaign against organized crime. By ceasing to work through unscrupulous middlemen in TV program advertising, Listyev had succeeded in turning his program’s losses into gains. Bucking the current trend, in his very popular prime-time talk show he often spoke up for the interests of the poor and exploited, calling for accountability of government and big private business. Whatever the reasons, Listyev’s voice of dissent was brutally silenced, and millions of Russians mourned. Russian TV journalists, interpreting the assassination as “the ultimate form of censorship” united in protest. Several TV stations stopped broadcasting for the better part of a day, screening only a pictureof Listyev with a succinct condemnation of escalating corruption and crime.

Discontentment in Russia is fast reaching the boiling point. People see clearly that while the shift to a market economy has brought a rapid rise in wealth for a few, for most it has brought rising unemployment and poverty along with the insecurity of growing crime and violence. The economic distress—painfully apparent in the dilapidated houses and deteriorating state of the countryside surrounding Moscow—gives the landscape an impoverished Third World appearance. One workshop participant statedregretfully, “The situation for most of us Russians is worse today than it was at the end of the Second World War.”

In spite of current adversities, however, the political space and social awakening introduced during glasnost and Perestroika are still alive and fermenting. Various citizens’ groups, such as the All Russia Society for the Disabled, are committed to struggle for more human and equitable social structures. Disabled people are realizing that the struggle for their own rights is inseparable from that of all disadvantaged peoples.