“Some people avoid them, ignore them, or pretend they don’t exist. Ìt makes them feel uncomfortable and they have an ‘animal instinct’ to avoid people with such problems.”
I am having a sobering conversation with ‘A’ about the plight of people living with disabilities in Russia. She should know, for she has challenges of her own that have caused such medieval responses from outsiders – and insiders too.
Officially, the system has caught up with the problem and has dedicated premises, workers, budget, and facilities to provide much needed care. It’s all “on paper” as ‘A’ puts it, though in her experience, the transference of these wonders into living reality leaves much to be desired.
“In law there are a lot of possibilities and care opportunities. In reality it’s so difficult to get the most needed help. Request help and nothing happens.
The organisations take money from the state budget but give very little help. They are not as productive or helpful as they should be.”
Naturally, I am curious to hear an explanation as to why such a situation exists. I run through a list of possible defects within a given system, and ‘A’ confirms them all.
The intertwining litany covers glacial bureaucracy, ineffective assessment, lack of funds and low wages, extended waiting times, unproductive, or unmotivated staff, unprofessionalism and more.
“It’s very rare that someone is helped,” she tells me. “It’s more exceptional than normal. They are badly organised, with too many people (to assist) and a limited budget. They are not equipped to deal with the problem.”
Angloinfo is more succinct in describing the prevailing situation, but it amounts to much the same:-
“Provision for the disabled in Russia is poor and dated compared to most advanced countries … this is… starting to be addressed by the government …attitudes of people in general are still far from supportive or helpful, and it will take some time before access and acceptance are on a par with Western countries.”
After reading account after account, purportedly from Russians living with disabilities; the news is largely grim and often appalling. There are a few positive accounts of achievement in the face of adversity, but not nearly enough.
I have to translate the unfamiliar Russian word that ‘A’ uses to describe the way those with disabilities are often regarded by the public at large.
With some degree of disgust I see “defective” and “incomplete” staring back at me from the translator screen, as if a person with difficulties is somehow less than a full person, and is to be dismissed as a result. ‘A’ has found that such an attitude can be present even within a family group: a reason for relatives to remain distant when closer bonding and extra assistance would logically be called for.
I have to ask if such a mindset is a Communist left-over, from when everyone was expected to work with the state to build the promised Soviet Utopia. Those that wouldn’t were a liability to be removed or “re-educated”, and those that couldn’t were an unwelcome burden. ‘A’ agrees that there is some truth to this hypothesis but, frankly; it’s complicated. “It was also there before,” she tells me.
For a start, the “access” infrastructure that we in the West take for granted just isn’t implemented to the same degree within Russia, bizarrely it’s still “early days” for such programs. Such an omission is still felt at all stations of life, from the (mainstream) work place down to colleges and schools.
As a result the default policy, official or not- amounts to exclusion, or segregation by default. Disabled individuals may often be excluded from the “normal” life/education/work that others take for granted, thereby widening the gap between them and the able bodied. How can a society understand, accept or care about those whom it does not know?
For many with problems the default situation is a life spent largely at home with varying degrees of dependency upon family and state provisions. Contrary to what many would assume in the west; there are “pensions” and domestic help available in Russia, but such provisions are relatively modest; falling short in comparison to those that we take for granted.
Disability -and therefore assistance- is graded according to category: 1 to 3, with 1 being the most severe. Even with the worst limitations (deserving of the most help), personal care still falls short, with washing, dressing and toilet needs falling to family members, friends, and even charitable neighbours. Official assistance from social workers is useful when obtained, but usually limited to errands, shopping, cleaning when something more drastic is called for.
There is even financial provision to allow the hiring of external help, paid for by the government. Again though, the reality of the situation is at odds with the stated intention. The monthly wage is low and beneficiaries often decline the practice – fearing the calibre of individual that such meagre rewards may attract.