Человек Дождя

My conversations in Russia have often, for one reason or another, turned to the question of disability, partly because many of the other EVS volunteers are working in organisations that deal with physical or learning disabilities, and partly because my own brother is autistic with learning disabilities, and when people find this out, they are usually very curious as to what it means.

I always knew that disability would be perceived very differently in Russia from how it is in the UK, but I wasn’t prepared for the extent to which I feel personally affected by this difference. The fact that the everyday Russian word for disabled – инвалид – literally translates as “invalid” somehow encapsulates the Russian attitude towards disability.

I have spent a fair bit of time visiting Desnitsa, an organisation who provide support, activities and legal advice for people with physical disabilities. On my first visit there, we started the day’s activities with a video about discrimination. The video was made and filmed in the UK, and dubbed into Russian, so it provided a great jumping-off point for comparing the two. (If you’re interested, you can watch it here)

The film explores (albeit rather heavy-handedly) the subtle instances of discrimination that occur in everyday life: lack of facilities in the workplace; lack of understanding as to what different disabilities entail; a general patronising attitude; and so on.

As  Brit, I was part of the films intended target audience and so it had its desired effect on me – I identified with the situations and accepted that our so-called progressive society still has a lot to answer for.

The Russians who saw the film, however, saw it in a completely different light. Where I saw discrimination against the disabled in the workplace, they saw light in the fact that disabled people were even present in the workplace. They explained to me that in Russia, it is almost unthinkable that a disabled person would find a job – there are simply too many barriers. Lifts and escalators are scarce; doorways are narrow; public transport is not equipped with ramps; and, most importantly, there is a lack of understanding as to what disability – physical or learning – really means and of the huge variety in different forms it can take.

They challenged me to look for physically disabled people in public places, and I accepted the challenge. At the time of writing, I have been in Russia for  just over two months, and outside of Desnitsa I have only seen a single wheelchair, for example. Whether this is a problem that spans all of Russia or is only the case in Samara, I don’t know. In Moscow or St Petersburg, for instance, the situation might be entirely different – I don’t hold any particular authority on the matter, and am only speaking from my personal experience.

If physical disability is little understood here, then learning disability and autism are even less so. When I tell people that my brother is “аутист и необучаемый” (autistic with learning disabilities) their usual reaction is “то есть, он болеет?” (“so, he’s ill?”). (I think that the very fact that, as I type this, my Russian spellchecker is highlighting the words “аутист” and “необучаемый” as incorrect is rather telling…)

Two conversations struck me in particular. The first of these was with D, the head of the organisation I’m currently working in. She is a highly intelligent, well-travelled and open-minded person, and in particular, quite well-informed about autism. She told me that she has been to forums on autism, for instance. However, when I spoke to her, it was clear that there was a fundamental difference between the way autism is understood in the UK and the way it’s understood in Russia. Everything I’ve ever read or heard in the UK treats autism as an inherent part of a person – like having blue eyes or brown hair – it is present from birth, and cannot be developed later in life, although it can become more visible as a person grows older. Crucially, it is not an illness.

From what D told me, however, it seems autism is treated in Russia as an illness that can be brought on as late as teenagehood by emotional trauma, much in the same way that schizophrenia can sometimes be triggered by trauma. This article would seem to confirm that. The comparison of autism – a lifelong condition – with schizophrenia – a mental illness – seems to me as logical as comparing lukaemia with a pencil. The two are fundamentally different, and therefore incomparable. But I had trouble explaining this with my broken Russian.*

The second conversation was with the mother of the host family I’m living with, K. In order to help explain to her what autism is, I referred to the film Rain Man (or Человек Дождя, as it’s known in Russian). Of course, the depiction of autism in Rain Man is highly fictionalised and what’s more, the film depicts an autistic person with “Savant’s syndrome,” which is very rare; but nonetheless, it provides a good base for understanding. K had seen the film before, but, she said, it had never even occurred to her that such people might really exist. For her, it was simply a pretty fairy-tale.

With all the above, it might be tempting to think that Russia is a country living in the dark ages, where discrimination and ignorance are rife. This is not the case. For all the lack of understanding that I have encountered since my arrival here, I have also met some incredibly intelligent, well-informed, and open minded people.

On my “on-arrival training” session for new volunteers in Russia, I met some fantastic people volunteering in various organisations for children with autism, learning disabilities and physical disabilites in Nizhny Novgorod and St Petersburg. These volunteers described their organisations to me, and they seem like a beacon of hope: although facilities for the disabled in Russia are lacking in many places, there really are some excellent places run by excellent people. I hope they continue to grow.

*I have since had it explained to me that autism and schizophrenia are not necessarily as far from each other as I had at first thought. Both are classed by the WHO as “mental and behavioural disorders”; furthermore, I am told that there is a case to be made for viewing schizophrenia as a delayed onset neurodevelopmental disorder. Nonetheless, autism is not a mental illness and cannot be brought on by environmental factors.

Advertisements