This word “Defective”#2: Laws and lawbreakers
Last week we took a cursory glance at the subject of disability within modern Russia. It soon became apparent that people dealing with such issues have more than the nature of their infirmity to deal with.
The uninformed, uncaring (or simply ‘unequipped’) reaction of outsiders – both of bystanders and those ostensibly offering help – may provide additional layers of difficulty where none need to be. Is the ‘core’ hardship itself not enough to deal with?
“There are no invalids in the U.S.S.R.!” These words were spoken in 1980 by a Soviet official… The U.S.S.R. had stigmatized persons with disabilities and largely excluded them from society. Physically challenged Russians were cast aside and rarely seen in public prior to the 1991 dissolution of the Soviet Union.” John Morris @ wheelchair travel.com
Signed and semi-delivered
Russian Foreign Minister Sergey Lavrov signed the United Nations Convention on the Rights of Persons with Disabilities in September 2008, but 12 years later, a revolution in the plight of those experiencing such problems has yet to occur.
With measures for disabled access still in their infancy in major population centres, it becomes clear that a chain is indeed only as good as its weakest link.
Even if a modern bank or post office is equipped with an access ramp (for example). What good is this when the step up onto the bus or train into town is too high to climb?
The agreement is in place, the law is established, but prosaic reality still lags behind.
Absent from work
According to Human Rights Watch, only 1 in 5 Russians with a disability is currently employed. Although the government creates some ‘special’ work opportunities for those with disabling conditions, the desire to work as normal, along with everyone else is not being fully addressed.
Open, blatant and unapologetic discrimination was sited as a factor, with employers maintaining obstacles (physical or otherwise) to deter current or future disabled employees. Those with some form of disablement have been told to leave their positions, others are paid less, or automatically assumed to be less productive. Others are plainly told that they are not required, simply because of their condition -seemingly with no further elaboration needed!
Nevermind the busses
HRW also highlighted fundamental areas of concern even before the issue of inaccessible public transport arises. How about inaccessible home dwellings? The organisation highlighted such problems as domestic buildings with no (or non-functioning) elevators, narrow corridors that prove difficult to traverse, -as well as ill conceived steps towards “assistance” such as the installation of disabled access ramps that are dangerously too steep to facilitate the use of a wheelchair.
People with issues of mobility are a rarity on Russia’s streets often because they are not physically able to get there without major assistance, or simply, shockingly: they are rendered prisoners in their own homes, trapped by the conditions they suffer and by the lack of external amenities.
In one appalling instance, HRW described the plight of an individual unable to leave her flat for 4 months due to a broken lift.
States of mind
The inability to venture out of your own front door has immediate implications for education, work, medical treatment, socialising, personal enrichment, and development of life skills. No wonder then that many sufferers also feel abandoned, imprisoned, ignored and excluded. The mental cost of such a combined burden is often immense.
Reading through quotes from Russian case studies, the pariah-like status that they experience is almost medieval in its discrimination. Such statements include: “I know I am defective, ugly”, “I always felt disabled …bad, embarrassed… defective”, “I hated myself… I was accused of being mentally defective.” This word of self-condemnation; “defective,” over and over again.
Cursed by kindness
Various accounts also present another factor: the unwitting ignorance of those trying to assist others with some form of impediment. “She was afraid of hurting me and didn’t know what to do!” – quoted one individual experiencing someone’s belated help when alighting from public transport.
Others speak sadly of forcibly sheltered formative years – even extending into early adulthood. This is often the result of over-caring family members seeking to protect their children or siblings, whilst mistakenly assuming that their charges were incapable of participation, or of performing everyday tasks that are well within their abilities.
The institution system -a hangover from the Communist era- is still extant today, complete with it’s own horror stories of abuse, confinement and segregation from mainstream society. In some instances ‘patients’ find themselves abandoned or orphaned in childhood, only to then be coerced into adult institutions at the age of 18, when (unknowingly) a life in the outside world is well within their rights.
Separation
With every account that I read, the common theme that arises is one of segregation; sometimes out of fear and hostility, but also out of embarrassment, ignorance, or paradoxically over-protectiveness and even “care” itself.
There are 13 million disabled people living in Russia today, a veritable silent and largely excluded army of which I have the privilege of knowing one member.
We can hope their needs will ultimately be heard and that they will find their place alongside the rest of the population. Hope alone is not enough, of course.
