"At least here she is only abused by one person"
The stigma of having a disability within the British Asian community of South Asian roots cannot merely be defined as stigma alone. With its ferocity and sheer scale of destruction it is immeasurable. A combination of torments, ostracising, treating with disgust, and oppression sweeps unforgivingly like a tsunami. It destroys all in its path washing the very essence of the person’s self-worth away.
The deadly tides are formed as early on as an elated mother with her new-born baby is asked bluntly: “What is wrong with your baby?” This is just a ripple in the tidal wave to come. Comments like: “It’s such a shame, you poor thing” and “How will you cope with this child?” then follow the mother. Subsequently, such children with disabilities are likely to experience further isolation and exclusion.
Exclusions like the case of a very high ranking civil servant and his 18 year old son with Cerebral Palsy. Fearful of the public disgrace to his family, had actually imprisoned his son in a bamboo cage for the first 15 years of his life.
However inhumane, many more similar cases are reported from both men and women of varied ages (International Disability Foundation). Some are comparable to medieval torture.
A victim bruised so badly, unable to walk or sit told: “what did you do this time?” by family (female aged 24).
Women with maternal disabilities such as Fistula are exposed to verbal abuse even from children openly being allowed to use taunts like “mootni” – a person who leaks. The stigma is used as a tool to induce fear like a red hot poker in the eye.
The inability to complete household tasks result in often heard comments like: “you find it difficult to work but not to eat”. Along with the on-going torments from so many is the vast abyss in which one’s self confidence is lost and destroyed within.
Sufferers of leprosy and other visual disfiguring disabilities have said they can tolerate the loss of their limbs far easier than the taunts of others and easier still than being forsaken by their loved ones. Atrocities are committed just to avoid mere association.
South Asian stigma is not just confined to physical disabilities, mental health ranks highly too. Sufferers of Schizophrenia talk of being openly mocked in social gatherings, referred to as the “sick” or “mad” man by those dearest to them.
So overwhelming and crushing are the effects of the stigma that many try to hide it to maintain what little dignity and respect they feel they have left.
“I tell people I have Insomnia. People always ask me, “Are you still not working? Doesn’t your wife mind supporting you? I hear things like….he just wants to live off his children and be lazy” (male aged 42)
“I’m told to go and perform penance, before my children get cursed from God; even my wife says I am an eunuch sitting idly at home wearing bangles” (male aged 29).
Partners, whole families and in-laws are often the instigators of the cruelty and abuse instead of being the protectors for such vulnerable people.
This becomes an ambush, a beastlike attack of a weaker prey. The individual is ripped apart and devoured with nowhere to run.
Daughters are forced to have hysterectomies out of fear that they will be abused and fall pregnant. The pregnancies may get prevented however many times the abuse continues.
In a slum in India, a mother refused to allow her daughter to be taken away to an institution, although her father was abusing her, saying: “At least here she is only abused by one person.”
Such already difficult lives become filled with unbearable traumas when on top of that already wobbling trifle is piled on ever more layers. The glass overflows when fudgy chunks of heavy life changing consequences are thrown in, with dilemmas of marriage and care issues.
Parents fall into the trifle mix making disastrous splattering mess of their children lives. They make desperate efforts to normalise and free them of the deadly metal snare of stigma.
Without the mental capacity to understand or consent, their children’s forced marriages are actually illegal and the unintentional aiding and abetting of abuse follows. After such offensive belittling, remarks like: “Your son is mad and handicapped, do you think we are too that we would agree to marriage?” are thrown back at them.
Parents hope a partner from overseas will accept the role of a carer but also be discreet in preventing the family from further shame. The idea of getting a partner from a village or an orthodox background from the homeland is often seen as an easy way to hide the disability issue. The overseas partner should be lucky to get married is the strange view. So, another life is also put into turmoil.
Faced with their impairments many young people said they were still left with little or no choice in partners.
There are cases of disabled young women falling pregnant after forced sex in the debacle of a marriage and then experiencing further trauma of having a child with no idea of what or why it is happening.
Both men and women with disabilities and or mental health problems are often seen as lacking much masculine or feminine identity and in constant risk of being abused. It seems absurd that in trying to eliminate these risks often they are made worse.
Stigma spreads fast like a cancerous disease and even people you don’t know have negative and exaggerated ideas of your illness.
Many Asian people with disability are treated as second class citizens by their own family. They are hidden away from society as if the family are ashamed of having such a family member, therefore, increasing the stigma endlessly.
This is even as far reaching as health professionals. “The first thing my GP asks when I take my 14 year old daughter with Multiple Sclerosis is was my marriage a first cousin marriage such frequent assumptions makes me so annoyed I only go when I absolutely have to” (female aged 39).
On the other hand, research shows that there are a large numbers of disabilities that are directly as result of first cousin marriages. According to government research 1 in 10 children from these marriages die or develop serious life threatening disabilities.
It is questionable why families would choose such arranged marriages for their children, whereby all the stigma, abuse and trauma will repeat for the next generation of children.
Acquiring a disability or mental health condition later in life is no less a complete destruction of the individual. The stigma, abuse, torments is no different.
After a head injury, paralysed from the neck down. A leaving wife cruelly tells her husband, “When I married you it wasn’t to change your nappies for the rest of my life. What use are you to anyone now.”
Despite events such as the Paralympics, trying to raise awareness, disability is not going to be given a huge hug wrapped in a comforting blanket, and in especially Asian society, it is likely it feel the cold for much much longer.
Seemingly a vicious cycle, what are the parents or the individual themselves with disability and or mental health illness to do? Many sufferers dismay at what the future holds and live a life of rejection and sadness. Do they ever escape their relentless ever encompassing stigma and abuse?