Rare Disease Social Research Center (RDSRC) at the Institute of Philosophy and Sociology in the Polish Academy of Sciences (IFiS PAN) announces the second “Society and Technologies on Health and Illness” seminar in the academic year 2020/2021:
Dr Anna Klepikova and Anna Altukhova (European University at St. Petersburg)
Trust and Belief: Parents of Children with Disabilities in the Therapeutic Landscape of Contemporary Ulan-Ude (Republic of Buryatia, Russia)
Ulan-Ude is the capital of Buryatia, a Russian region in East Siberia that borders with Mongolia. It has the population of around 500 000 people, at least 30% identifying themselves as buryats and Buddhists. This presentation is mostly based on the materials of a month-long pilot fieldwork conducted by my colleague Anna Altukhova and me in Ulan-Ude September 2020.
Speaking about Buryatia, however, I would like first to cite some of the results of our previous research, conducted in three largest and predominantly Orthodox Russian cities: Moscow, St.Petersburg and Novosibirsk in 2016-2017. It focused on the biographies of parents of children with disabilities and discussed parental choices of treatment and rehabilitation strategies. The study has shown that parents have to deal with numerous difficulties and uncertainties on their way: when receiving an appropriated diagnosis, selecting an effective therapeutic model, placing the child into schooling, organizing her adult life, and so on. Many parents soon become disappointed at the organization of healthcare system, medical communication and rehabilitation in the framework of the official medicine. As they fail to receive sufficient answers to their questions or find a satisfactory level of support, many of them turn for help to various alternative methods of therapy. On the one hand, these methods may include various pedagogical systems, ABA-therapy among them, and on the other, they include numerous therapeutic techniques like naturopathy, chelation, diets, dolphin therapy, “bioacoustic brain correction”, and so on. One of the ideas that guide some of them through their therapeutic route, and one of their strategies of stigma resistance, at least as formulated at the discursive level, is the hope that their child could be reset back to the “norm”, and alternative therapies seem to raise more trust here than official medicine or pedagogics.
Our research in Buryatia, partly focusing on the same subject, has unsurprisingly shown quite a similar, but still culturally rather specific picture. Local official medicine, neurology, psychiatry and paedopsychiatry in particular, trigger even more distrust in parents of children with disabilities, than in case of the cities I described above. They prefer to turn for medical consultations to the physicians and psychiatrists in the neighboring regions.
At the same time, modern Buryatia represents a complicated “therapeutic landscape” – term used by scholars to define a place where different forms of experience, materialities, cosmologies of therapeutic action meet and collide, and where various methods of treatment are differentiated, arranged and coordinated, see [Chudakova 2015, Craig 2012, Langwick 2008]. Modern Buryatia is characterized by recent revitalization of Buddhism and shamanism, the upsurge of various magical services in the post-Soviet period, see [Lindquist 2005]. The recent legalization of folk healers there is accompanied by a very low level of trust towards biomedical services, see [Chudakova 2013, Chudakova 2015, Quijada 2019: 130]. As a result, the Buryatian therapeutic landscape is densely populated with the specialists belonging to a whole variety of symbolic healing systems, and it provides opportunities for parents to find help within Ulan-Ude or Buryatia region, what biomedicine paedopsychiatry, and paedopsychology fail to do there.
Our materials have shown, that parents of children with disabilities tend to turn to shamans, lamas, who fall into “emchi” (healers), chiropractors, and astrologists, Tibetan doctors, folk healers, magicians, spirit mediums, fortune-tellers, numerologists, and so on. In their search for effective help a parent might try different therapeutic systems: lamas’ prayers, shamans’ rites, directions from a fortune-teller, Tibetan herbs and acupuncture, magic spells, affirmations, removal of “speech closure” or “fright” in a child, and so on, while at the same time they might as well continue with treating their child with anti-psychotic or anti-spastic drugs, or taking ABA classes.
In the presentation I would like to discuss what systems finally find more trust among parents, and what specialists are endued with more authority. I will also highlight some peculiarities in the expected results of treatment and healing among parents in Buryatia in comparison with the outcomes of my previous research. One of the seeming differences is the fact that in Buryatia the need of full normification of a child with disabilities is not that acute: even tiny positive changes in the child’s condition are enough to satisfy her parents and prove that the specialist or the procedure were effective.
Please join us via Zoom. Everybody is welcome!
ID spotkania: 819 0135 0698