A Brief Historical Account of the Disability Movement in Russia

by L.N. Indolev
 

Early era of charity

Russia's disability movement, like any other, has a long history behind it.  We can start with the many centuries that the Weiner brothers called "the era of charity," when the state, the Church and devout citizens looked after beggars, orphans and disabled people.  The first princes of Kiev, for example, taught their subjects to love their allies and provide them with gifts.  Of course, such good deeds often went hand in hand with unbelievable acts of cruelty, not only directed at enemies, but sometimes at those very same allies.

Under Czar Feodor Alekseyevich (the older brother of Peter the Great), by 1682 there were two charitable organizations which helped disabled people in Moscow by providing them with food, minimal health care and a place to live. By the end of the century there were about a dozen such organizations and by 1718, during Peter's rule, there were already 90 organizations serving 400 people.

In 1775, Catherine the Great issued a decree establishing social service committees and encouraging individuals to establish charitable organizations.
 

19th Century initiatives

In the 1800s, Alexander I founded the Imperial Charitable Society.  At the same time, Count Sheremetevo built a hospital for the poor, which is now the well-known Sklifosovsky Institute of Emergency Medicine.  Also under Alexander I, the French physician Gaui, having failed to solicit support from Napoleon, came to St. Petersburg and founded the first Russian institute for the blind.

In the aftermath of the war of 1812, the publishing house of P. Pezarovius began printing the newspaper Russkii Invalid (Disabled Russian), which continued to be published until the October 1917 Revolution and was mostly dedicated to the problems of disabled veterans. During the Crimean and Russo-Japanese wars, a number of societies of volunteer nurses were established. The first such organization was founded by Princess Elena Pavlovna and the famous Russian surgeon Pirogov. Many of these societies were later incorporated into the International Red Cross.

In the 1880s Anna Adler established a printing house for the blind, which in 1885 printed the first-ever Russian language Braille book. By the beginning of the 20th century there were several dozen schools for blind students, and the journal, The Blind, was first published.

It must be emphasized that up to this point everything that was done for people with disabilities was done by the state or by charitable citizens, not by disabled people themselves.  It was only later that disabled people began to take the initiative and demand equal rights and opportunities.
 

20th Century developments

It is often said that the first societies of disabled people were the All-Union Society of the Blind (AUSB) and the All-Union Society of the Deaf (AUSD), founded in 1925 and '26, respectively.  However, in December of 1921 the Council of People's Commissioners in the Russian Soviet Socialist Republic formed the All-Russian Cooperative of Disabled People (VIKO).  VIKO focused its efforts on providing work opportunities for people with disabilities by creating special production lines, kindergartens, resorts, health retreats, vocational schools and sport centers.

The structure of VIKO was very similar to the current structure of the All-Russian Society of Disabled People (ARSD), a national umbrella disability organization founded in 1988, which has over 20,000 members across Russia.  All decisions were made democratically (in the early '20s it was still allowed), and only people with disabilities had voting power at VIKO.   It is interesting to note that because VIKO was under the direct control of the government of the Russian Republic, it had a higher status than the ASUD and ASUB, which were under the control of the Ministry of Social Services.  Also notable is that before WWII the Soviet State attempted to take over a small AUSB enterprise, but failed.  This can be considered the first small victory in the disability rights movement.
 

Setbacks for the movement

But in later years, where blind people succeeded other disabled people -- particularly those with mobility impairments -- failed.  By the end of the 1950s cooperatives of disabled people united 4200 factories across Russia that employed some 219,000 workers. However, in 1956 the Communist Party nationalized the majority of these enterprises, and in 1960 the remainder were disbanded.  Unemployment among disabled people increased.  The physical and mental well-being of many people with disabilities were also damaged as the Party nationalized more than 100 schools, 18 health retreats and 41 resorts that had been owned, managed and used by disabled people.  The most powerful organization of disabled people was destroyed.  Khruschev and the Party decided that only state enterprises should participate in the building of Communism.  Disabled people did not have the power to contest that decision.  This was a heavy blow to the emerging disability movement.

Surprisingly, the Society of Blind People was able, in stark contrast to VIKO, not only to maintain its companies, but also to strengthen and develop them through their network of educational-industrial enterprises.  At these enterprises a young person with a vision or hearing impairment would receive a technical education, a new career, and a job.

By 1960, the only disability organizations in Russia were the ASUD and the ASUB.  The committee of WWII veterans, headed by disabled Soviet-hero Aleksey Maresev, was little more than a mouthpiece of Soviet propaganda.  Ordinary disabled veterans, who lost their arms and legs on the battlefield, were sent to desolate places where no one could see them die.
 

Post-war years

Despite this, a timid disability movement began to emerge in the post-war years.  At the beginning of the Khruschev thaw, Victor Golubev, a wheelchair user who was wounded during the War, spoke out for the creation of a union of disabled people with mobility impairments to be modeled after the ASUD and ASUB.  But Golubev was not allowed to develop his idea, and instead, was sent to an institution far away from civilization.  In 1955, a small group of veterans on Moltokoliaskis (compact cars with a small engine that were provided by the state to persons with mobility impairments) organized a rally at the Communist Party headquarters to demand benefits for disabled persons.  The leader of the rally, 24-year-old Yuri Kiselev, however, was not a veteran, but a wheelchair user with a childhood disability.
 

Special role of people disabled since childhood

It is important to note the special role that people with childhood disabilities played in the disability rights movement in Russia.  Disabled veterans enjoyed some benefits and privileges and were hesitant to make waves for fear of losing them. People who had been disabled since childhood, however, had nothing to lose.

Disabled children, born after the war, were often idealists, or Communists.  Most were brought up and educated in special hospitals and boarding schools where they enjoyed a relatively high level of freedom.  Strong bonds were established amongst residents of such institutions.   After leaving the care of attentive doctors and teachers, they were faced with an immensely difficult daily life and the feeling that they were completely alone and unwanted.  Only a few managed to find work or continue their education.  For the rest, nothing was left but to fight for their rights.  Some fought through official channels, and others crossed into the realm of the "anti-Soviets."  Both of these groups were composed of disabled people with severe mobility impairments and who either used wheelchairs or were forced to crawl in order to reach their destination.
 

Disability leaders emerge

Such was the life of Gennady Guskov, the resident of a boarding school for disabled children, who in 1964 attacked Khruschev in a letter.  Inspired by the dream of the disabled screenwriter Nikolay Ulibina, Gennady wrote about his dream of forming a society of disabled people that would provide special living and working conditions that would allow disabled people to become productive members of society.

"The creation of an all-union society of disabled people, along the lines of the unions of blind and deaf people, would solve many problems faced by disabled people, including rehabilitation and unemployment," he wrote later.  Guskov created a model of such a society in his hometown, together with his supporters.  For over ten years he fought with bureaucrats at all levels and was confronted with persecution and ridicule.  In December of 1976, the Council of Ministers of the USSR issued a declaration that in several republics, as an experiment, disability organizations, like the one Guskov proposed, should be established.  Unfortunately, not a single organization was established.

Yuri Kiselev and his friends used different methods to win their battle. In 1965 Kiselev decided to organize a rally before Party headquarters, this time including young disabled people.  Unfortunately, only a handful of people participated.  He realized that "grassroots" methods would get him nowhere and decided to publicize his efforts through Western media - specifically, the radio stations "Radio Free Europe" and "Voice of America," which were regarded as enemies to the Soviet regime.
 

Support from human rights movement

Yuri met with other human rights activists, such as the famous physicist Andrei Sakharov.  In 1978 Kiselev, along with other disabled rights activists -- Valery Fefelov, Faizulla Husainov and Nikolay Murakhtanov  -- set up a committee on the rights of disabled people in the USSR.  The group was granted official status within the Helsinki Human Rights Watch.  The first time they addressed the Helsinki committee, Soviet activists with disabilities stated,  "Our many years of struggle to establish an organization of disabled people in the USSR has shown that it is useless to appeal directly to government officials; letters are left without answer, or they lead to threats and repression.  We demand that the Soviet government protect the rights of disabled citizens and improve social services for them.   We would like to remind all disabled citizens of Russia that they deserve to be treated as human beings; we encourage them to form support groups and fight for the formation of an All-Union society."  This was 10 years before such a society was actually established.
 

Informal organizations arise throughout Russia

While the human rights movement fought for an All-Union society, all over Russia informal organizations of severely disabled people began to appear.  The leaders of such organizations lived by the principle "help those who have a more difficult life than one's self."  The names of these organizations are very telling: "Prometheus," "Truth," "Phoenix."  The founders of these groups were true idealists, they were selfless and steadfast people.  For many of them writing a letter required extreme physical effort; despite this, letter writing was one of their main activities.  Pen pals only saw each other in photographs.  For the most part, they corresponded with each other, but the most radical of them wrote Party leaders and government officials in their search for justice and support.  This kind of informal activism was very similar to that of the human rights groups.  The main difference, however, was that the informal groups did not write collective letters that the state viewed as direct protest.  Instead, they crossed an invisible boundary that at times required much more bravery.
 

"Prometheus" born in the Urals

The letter-writing society, which called itself "Prometheus", was founded thanks to the efforts of Tamara Zagovozdina in the small town Kyshtyma in the Urals.  Soon its ideas were disseminated throughout the Urals, to Moscow, Leningrad, the Ukraine, Belarussia, Kazakhstan and other republics.  In the words of Tamara, this was perhaps the first step in uniting disabled people, which led eventually to the official registration of an organization of disabled people.  According to Gennady Golovatovo, an active member, the membership of the society grew to 100 people.  They exchanged books, articles and hard-to-find medicines, they helped each other find work, and they petitioned local governments to provide them with apartments and telephones.  They had a general assistance fund from which members could borrow money, and they discussed the use of this money through their letters.  Prometheus distributed a hand-written journal called Flame. Members of the Society formed deep bonds of affection and by mail some even met future spouses.

Vladimir himself, along with Vyacheslav Karyakinim founded a group of disabled activists in Gorky at the beginning of the '70s, who tried to form their own independent society. They continued their efforts into the beginning of the 1980s.
 

"Truth" in Moscow & Leningrad

Similar in spirit to Promethius was the society "Truth," born in Moscow in the late 1970s.  Its founder was Olga Kameneva, the resident of a boarding school for disabled children with spina bifida.  Through personal letters, the school residents discovered that they had a number of common problems, the most serious of which were their studies and preparation for future jobs.  Truth also distributed its own journal and collection of poems.

In Leningrad the disability movement had its start inside two sports clubs: Ortsport (founded in 1992) and Phoenix (1993), which were led by Leonid Zabelin, Anatoly Ushal and Gennady Feodorov.  According to Feodorov, the main goal of the Phoenix club was to create an organization of disabled people which would function as a professional-training center.
 

Korchagin group provokes response

The Korchagin Society was founded by Olga Burkova in Ekateriniburg in the Urals.  Within six years, they had nearly 800 members who belonged to 15 branches, the largest of which were in Moscow, Leningrad, Sverdlovsk, and Pskov. Although the most active members were wheelchair users and other people with severe mobility impairments, the membership of the society also included people with visual impairments and hidden disabilities.  The Korchagin Society included interest-based groups, including the discussion group that called themselves "Mirror."  The Society distributed hand-written magazines, including "The Torch" and two children's magazines: "Sunshine" and "Snowman."  Like the members of the Prometheus Society, members of the Korchagin Society wrote letters to the government. In 1985, Olga Burkova and Korchagin's management board wrote to the Labor Committee of the USSR asking them to consider supporting the creation of a national society of disabled people, but they were told that such a society was "unfeasible."  After writing another letter to the Ministry of Social Services in 1987, they received a more inspiring reply:  "Such a society will be formed."  This happened in the third year of Perestroika during Gorbachev's rule.
 

Shared dream becomes reality

Prometheus, Truth, Korchargin, Phoenix and other informal societies were very similar in their goals and methods.  They existed as separate organizations partly because, at first, they were not aware of each other's existence.  They were united by the fact that, in addition to all of the grassroots, member-oriented work that they did, each of them strove to create a national organization of people with disabilities.  This was their shared dream.

Throughout Perestroika, the dream of forming a national society was on the minds of many disabled Russian leaders.  Feeling the winds of democratic reforms in their country, a group of young members of Prometheus in Moscow began to take measures to establish a Moscow organization of disabled people.  In the spring of 1987 they began to mobilize people in the disability community by holding meetings in their homes and disseminating information by phone.  They set up a committee to be in charge of writing the organization's by-laws.  The committee received hundreds of letters with suggestions.
 

Bureaucratic opposition continues

In the summer of 1987 the proposed charter reached the Moscow city council, where it faced tremendous opposition from Communist bureaucrats.  But the young activists did not give in.  They appealed to the media for support.  Journalists supported the initiative, and on October 21, some 200 disabled people took part in the television show "Perestoika Projected."  They demanded that the Ministry of Social Services withdraw its opposition.  The government backed down.  On May 22, 1988 the first conference of the Moscow All-Russian Society of Disabled People Moscow ARSD was held.  The Moscow ARSD only included people with mobility impairments.  Chigarentsev, a wheel-chair user, was chosen as chairperson.  Moscow's disabled population had won its first battle in the campaign for civil rights.  At almost the same time, disabled residents of Pushkin (Leningrad Region) also won the right to form a disability organization.

In March of 1987 a Korchagin member, Yuri Misiurev, and a group of supporters tried to convince Party leadership of the necessity of creating a national society of disabled people, and did not succeed.   However, by the end of that year Soviet bureaucrats realized that the disability rights movement was growing too strong to be stopped.
 

All-Union Society of Disabled Persons

On February 2, 1988 the Central Committee of the Communist Party issued a decree which permitted the creation of the All-Union Society of Disabled people (AUSDP).  At the regional level, committees and preliminary organizations were established and managed by representatives of governmental social service organizations.  Writing the by-laws proved a difficult task; activists argued over the organizational and leadership structures of the new organization.  The final result was by-laws that were very similar to the charters of the societies of the Blind and Deaf.  The AUSDP was organized to include all types of disabled people, not just people with mobility impairments.

On August 16, 1988 with 170 delegates in attendance, the first meeting of the AUSDP Central Board was held, and elections for leadership positions were held the next day.  Unexpectedly, the position of chairperson went to 75-year-old Aleksey Deriugin, a disabled veteran of the Finnish War, a hero of the Soviet Union and a former leader of the State Committee on Athletics.  Three years later, at a meeting of the newly renamed All-Russian Society of Disabled People (ARSD), Deriugin was replaced by an energetic young paraplegic man, Alexander Lomakin.  Although the majority of the ARSD's leaders were people with mobility impairments, there was not a single wheelchair user on the Central Board Management Committee.
 

1995 Disability rights legislation

Yet another victory for the disability movement was the passing of legislation in 1995 to protect the rights of disabled people in Russia.  Without the perseverance and lobbying of the All-Russian Societies, this legislation would not have been passed. The organization that played a key role in the passing of this legislation was the All-Russian Society of Disabled People (ARSD).  In 1998 the ARSD celebrated its 10th year.  It has grown into a powerful organization with 2.5 million members.  The ARSD exercises influence at the highest levels of government.
 

Contemporary situation

In addition to the ARSD and the other National disability organizations of the Blind and Deaf, very few services are being provided for people with more severe disabilities, including wheelchair users.  Other groups of disabled people are also often isolated from the rest: persons with diabetes, with amputated limbs, people with cardiac disorders and others.  Such people have formed their own organizations, as is done in countries where there is no centralized, national organization of disabled people.  Parents of disabled children have also established their own independent organizations, such as the Association of Parents of Children with Down's Syndrome.

In many cities, disabled people have formed so-called "alternative" clubs and disability organizations.  Some of these people were never part of the larger national disability organizations, considering them to be excessively bureaucratic.  Others became dissatisfied after becoming members of these organizations.  Some of these people simply gave up their membership, or became inactive members.  Many of them founded their own disability organizations like Invatur and Pandus in Nizhny Novgorod, Taniusha in Tver, Desnitsa in Samara, Klio and Preodelenie in Toliatti, the Breakthrough Foundation in Ulan-Ude and others.  There are also many other single-disability organizations and associations that represent the interests of persons with diabetes, asthma, sclerosis, etc.  Activists in these organizations lobby local governments to make public places and public transportation accessible, to implement more literally the law on the Social Protection of Disabled People.  They also provide legal services to their members and help them to become more confident and stand up for their rights.  For disabled Russians, especially those who live in the provinces and are still deprived of many important civil rights, the battle goes on.