New Novel Focuses on Russia’s Most Rightless: Those Institutionalized for Physical or Mental Handicaps

Paul Goble

            Staunton, April 27 – Anna Klepikova, an anthropologist at St. Petersburg’s European University, has written a novel about Russians who are kept in institutions for the physically and mentally handicapped. Entitled “I Guess I’m a Fool,” the book tells the sad story of these people and the reactions of both the government and the population that prevent improvements.

            Klepikova discusses her book and its subject in a lengthy interview with Mariya Koltsova of MBK-News, thus providing a rare look inside the world of the segment of the Russian population with the fewest rights and the fewest people willing to fight for them (mbk-news.appspot.com/suzhet/antropolog-anna-klepikova/).

            As in many countries, most people in Russia identified as having serious physical or mental handicaps are kept in enormous institutions where they are warehoused more often than treated, she says, in large part because of the unwarranted fears of ordinary people about them and the enormous expenses of shifting to smaller centers or de-institutionalizing with help.

            The fears of the population at large of such people are misplaced, Klepikova says. Only a tiny fraction of those inside these massive facilities are dangerous to themselves or others.  But they do need support, and providing it in smaller group homes is both more expensive and generates negative reaction among those who do not know about the real situation.

             These popular fears have allowed the government to avoid providing the support such people need in smaller homes; and given the current health care “optimization” effort, there appears likely to be even less government money for them in the future.  Instead, some social activists are getting involved, but the number of projects is microscopically small.

            De-institutionalization of such people in Western countries was driven by activists and scholars who pointed out that those with mental and physical handicaps are still citizens with rights. Their efforts allowed many who had been incarcerated to leave. Where the governments provided funds, there have been many success stories.

            Unfortunately, in Russia today, Klepikova says, there is still little pressure on the government to change and spend more for those who need it most.  Her novel is obviously an effort to generate a constituency ready and able to make such demands. 

            She describes many of the horrors of existing institutions, including a lack of privacy and inadequate diet and supervision. But perhaps the worst aspect is that administrators who try to ensure that what money they have is spent on patients are frequently dismissed because others see such funds as a source of money they can siphon off for themselves.

            After all, they apparently reason, who will object to money not going to the handicapped?

            Klepikova says that she hopes attitudes about the physically and mentally handicapped are finally beginning to change. According to her, this process is accelerated when people have contact with those who have special needs. Such contact destroys the stereotypes, negative and romantic too, that many Russians have.

            Consequently, the anthropologist and novelist concludes,  “the more people interact with such children and adults, the fewer stereotypes and fears they will have. We always fear the other and the alien, and when he or she becomes part of our lives, it turns out that there is nothing to fear.”