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. Last Updated: 07/27/2016

Activists Fight Disability Stigma




Three years ago, Yelena Dunayeva would not have even considered leaving her house by herself and boarding the bus to ride the 30 kilometers to the city of Ukhta in the Komi Republic.


But this week Dunayeva, 29, who can get around only with the help of crutches, has made it all the way to Moscow for a seminar being conducted for disabled activists.


The 50 participants in the seminar - part of a wider project run by Perspektiva, a Russian disabled advocacy group, the U.S. World Institute on Disability and the British Derbyshire Center for Integrated Living - are determined to fight the social stigma connected with disabilities, and, along the way, to overcome their personal fears.


To do all this, they are forming peer support groups, teaching schoolchildren disability awareness and lobbying for better handicapped access in their cities.


For disabled Russians, just leaving the house often presents a Herculean task. Handicapped access is virtually unheard of, and many disabled people live in apartment buildings without elevators. Parents are often encouraged to give up disabled children to internaty, or special orphanages, many of which are plagued by cruelty and neglect. Russians are more likely to see disabled people begging in the metro than living a productive and fulfilling life.


Even finding a hotel for this week's seminar was a challenge, organizers said. Taking into account the width of bathroom doors - can wheelchairs fit through? - and other factors, they settled on the Salyut Hotel on the city's southwestern edge.


"You can't blame people for not accepting us. Officially, there was no disability in the Soviet Union," Dunayeva said.


She couldn't recall exactly how she summoned the courage to begin taking the bus ride to meetings of the local chapter of the All-Russia Society for the Disabled.


"Sometimes it just happens. Something changes inside and you think, 'Why couldn't I do this before?'"


For Nelya Panova from Volgograd, that moment has not arrived yet. The Moscow seminar is only the second Perspektiva training session she has attended, and during the first meeting of the seminar's peer support groups Monday, Panova stayed silent.


"I would really like to work on my self-esteem. It's hard for me. Even among people like me I find it difficult to talk openly,"she said after the session.


Panova, 35, specially requested a wheelchair for use during the seminar. She usually assists her tiny legs with crutches, but moving around that way is exhausting. Her mother accompanied her to the seminar this week.


Life for disabled people in Russia "cannot be compared" to anywhere else, Panova said. "There are problems with everything, and not one of those problems is possible to solve. I can't even go to the store myself," she said. "God forbid something should happen to my mom."


Denise Roza, an American who works at Perspektiva, said the difference in attitude between people like Panova and people who have been long involved in the project is striking. "If you had asked them if they would be doing this a year ago, they would have said no way," she said of activists from Perm, Krasnodar and Novgorod.


But today their enthusiasm for their work is infectious. On Monday evening after the day's sessions are over, a handful of participants gather on the hotel's fourth floor and share experiences from their school visits.


Tanya Chulpanova from Krasnodar recalled how one schoolboy wrote an essay about how when he grew up, he would try to make his workplace accessible. "Just for that, it was worth holding these lessons," she said.