At one with the world

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Points to ponder

In times when one has to push others to get ahead, we leave the wounded behind because they will only slow us down. Conditions that disable others are also those that we carry in our hearts — our attitudes and preconceived notions. But, isn’t it time we ensured that no one’s left behind, wonders Shefali Tripathi Mehta

A friend who adopted a baby was told by every well-wisher to ‘exchange’ the child when she was discovered to have a hearing disability. A medical team conducting a survey of children in a village stopped at a home with several kids. “How many children?” they asked. “One,” the man of the house replied. “And the rest?” “They are girls.”

Girls — unaccounted for. People with disability — unaccounted for. And like them, other disadvantaged sections of our society that we seem to have turned away from — the aged, the poor, the victims of our tardy justice system or of horrific violence, and their families.

In times when one has to shout to be heard, push others to get ahead, we leave the wounded behind because they will only slow us down. There are barriers in their participation and contribution to the family, community and society. Because they are also more dependent on others, they are susceptible to neglect, abuse and violation of their rights. Rights and laws can only provide safeguards, but the reality of being of little or no consequence is heartbreaking. These people, often referred to as ‘second-class citizens’, are considered less valuable for the society. This reflects in our thinking and our attitude towards them.

Imagine walking a few steps on a pavement blindfolded? This is how difficult life is for people with disabilities, and the graying population, in our country. But we cannot take on their battles. These people are too far gone in the periphery of our reality for us to bother. We are a country where the right of way belongs to big cars and not pedestrians; where ambulances blare their sirens to unhearing, uncaring motorists; where women of less means die giving birth to children outside hospitals that close their doors on them; where we shamelessly park in disabled parking bays, and sit while the aged stand for their turns in doctors’ waiting rooms.

Conditions that disable others are also those that we carry in our hearts — our attitudes, preconceived notions about physical disability and mental illnesses, our total neglect of old age and poverty. We disable them with archaic laws, rigid education system, partisan employment policies, disparate judicial system, apathetic infrastructure and town planning.

We grew up immune to the tragedies of the ‘lesser-ones’ — made fun of those with mental illnesses; in school, children with polio sat in class during games; the blind came home to weave chairs; the house-help ate leftovers; our films and television introduced people with mental illnesses for comedy, and those with physical disability made extraordinary sacrifices — nothing came close to reality. Nothing in later life taught us better, and we continue to fail in sensitising our children.

Family matters

Eight-year-old Anita is visually-impaired and from a family with limited means. Her parents demonstrated extraordinary support and positive attitude by travelling daily to the nearest town for her rehabilitation. Anita was only five and travelled four hours daily to learn Braille, Abacus and Taylor Frame (used by people with visual impairment to do Math). She is now studying in class three in an inclusive school. Her mother has learnt Braille so that she can support and help her daughter.

The family system that is our boon is our bane too. Often, the first barrier a person with disability encounters is his own family which lives in denial of the disability. They cannot accept that their child has a special need and early intervention may enable the child to live a less-dependent, fuller life.

Many families discriminate among their children too — spending more on the normal child’s education and not finding the same ‘investment’ worthwhile for the child with disability. These are attitudes born out of age-old traditions and culture that we have not been able to shake off with awareness in a much advanced world. The families of those with mental illnesses and physical disabilities on the one hand struggle to cope with the person’s special needs — the stress of providing care, treatment, emotional support; disruption of daily schedules, family routines, work and leisure; and on the other, also face social ostracism. It is not they, but we, who are unfortunate for our blinkered thinking and regressive attitudes.

A study by Help Age India, conducted across 20 cities, has found that almost one in three of our elderly face abuse, most often by their own children. Urban, middle-class, working couples who have parents keeping their house and kids, begin to resent their presence once they have outlived their usefulness and are themselves in need of care.

Crippling culture

Disabled children are buried up to their necks during solar eclipses; wailing infants are tossed from temple tops to be caught in blankets to bring health and luck; the belief in karma leads to the superstition that disability is a result of the sins in past life. Societal attitudes towards disability, old age or differences of any kind range from neglect and overprotection to sympathy.

A chartered bus with everyone seated had one last passenger — an elderly man. Passengers squirmed in their seats, but offering seat to others in chartered buses is not a norm. Then, a woman got up and offered her seat to him. It took her some courage to get over the awkwardness, but she said she thought of her own father and hoped in return someone would do the same for him. 

Even the educated and good-hearted are awkward and uncomfortable around someone with a disability because we have not been sensitised to understand their needs and appreciate their abilities. We have a culture of helping that only makes the less-abled dependent. “You can’t do this”, “You won’t be able to go there” are barriers we create for them. People often address the attendant of a person with disability instead of talking to them directly; they talk louder to a blind person; and often begin to lead someone or push a wheelchair without first asking. Well-meaning though we may be, why does regard for human dignity seem less significant in such situations?

It is unfortunate that the barriers in inclusive education are not just the schools that refuse admission to children with disability citing lack of facilities and trained staff, but also parents of ‘normal’ kids. We may cry rivers watching a Tare Zameen Par, but the same empathy does not move us in real life.

Superstition sanctions families to abandon their elderly women and widows at the Kumbh melas. The belief that those who die in holy cities go straight to heaven cloaks their dark intent, and is responsible for the abandonment of an estimated 10,000 women on the streets of Benares. Many women admitted to hospitals for treatment of TB, leprosy, depression or other mental illnesses are never accepted back into their families. Many well-off families brazenly deny their women treatment for cancer and other life-threatening illnesses. 

Broken bridges

A few years ago, pedestrian crossings at busy junctions in Mumbai were installed with audible signals designed for the visually impaired, but had to be silenced because residents complained of the noise. Independent, dignified life for a person with disability in India is still a dream. Our cities are flooded by rains, our public transport has to be availed of by running, climbing and finding a foothold, commuters hang on foot boards of buses and local trains, our disappearing pavements are broken, blocked with stumps of trees, debris and filth, and public disabled toilets are nonexistent.

Hotels, restaurants, parks, historical sites, banks, post offices, railway stations and libraries are not barrier-free spaces for people with disabilities or the aged. How easy is it for a blind person to eat at a restaurant? For a wheelchair user to go to the bank? For an aged person to get a lower berth on the train?

A survey last year revealed that in the country’s capital, 37 per cent government schools did not have clean toilets, leaving students with no option but to urinate in the open. Parents are reluctant to send their children, particularly girls, to schools where basic toilet facilities are not available. Lack of basic facilities in schools is a violation of the right to free and compulsory education guaranteed in the Indian Constitution.

Laws that violate

The Right to Education and the midday meal are legal entitlements in our country where reportedly lower caste children are still made to sit away from the rest, scolded, beaten, made to do menial chores by teachers, and not allowed to drink water from the same tap as the rest. The rigid systems of admissions, curriculum, and evaluation; and the lack of awareness among the school authorities, teachers, students and parents of non-disabled or privileged children make integration very difficult.

The Mahatma Gandhi National Rural Employment Guarantee Act (MNREGA), the Right to Education (RTE), the National Food Security Act, the Disability Discrimination Act are all steps to bring to the mainstream those who have been left out, but the problems are those of implementation, of the absence of punishment for those that deprive others of their rightful benefits. The State that is steeped in blatant corruption at every level can offer redress only by creating honest channels of execution of these schemes and ensuring that the greedy middlemen do not siphon off taxpayers’ money and deprive the genuine beneficiaries.

Jeeja Ghosh, Head of Advocacy and Disability Studies at the Indian Institute of Cerebral Palsy (IICP), and a frequent flier, was made to get off a plane by the pilot because she has cerebral palsy. Not a stray occurrence of discrimination, these incidents happen because there are no deterrents, no exemplary punishment for the perpetrators.

These disadvantaged groups are considered low on the hierarchy of concerns of the policy makers and votebank politicians. It is imperative for the disadvantaged groups to be included in the census and the election processes so that they are accounted for in future policies, action plans and allocation of resources.

Recently in Bangalore, 5,000 residents of the Economically Weaker Sections (EWS) had their homes demolished overnight, and were rendered homeless, when the government entered into a public-private partnership to develop the land occupied by them. With corruption so rampant in public departments, there is no certainty that when the homes are ready, any of these original dwellers will be resettled there. Development at the cost of the weaker sections of society is pointless as it only serves to widen social disparity. So while it may be argued that the proposed business establishment, namely a mall, that will come up in the area will create more jobs for these evictees, we also know of the poor working conditions and exploitation that takes place at these low-level, private enterprise jobs. If, on the other hand, the government were to undertake the development project, while it may have been able to safeguard people’s rights to some extent, the problems would be different — poor services, corruption, loss and wastage of public money.

Corruption annuls every effort towards development. We pay taxes for motorable roads, walkable pavements, public transport, safety and security of life and property, but the poor services and facilities the government provides are of little use to its physically and economically vulnerable citizens.

Islands of hope

“I am what I am because of who we all are” — this is the Ubuntu philosophy of the South Africans, the ‘essence of being human’, that no one exists in isolation. So, for every incident of government-run hospitals refusing admission to pregnant women, critically sick or injured, there are people like the autorickshaw driver in Bangalore who provides free transport for pregnant women to hospital.

For every child with disability who is denied admission into mainstream schools, there is one Mrs Mittal, a housewife and volunteer at an NGO who, when she could not spend the number of hours the student with visual disability she was reading for, needed, invited him to her home to help him study while she did her chores. She also encouraged her neighbours to read to him. This helped the student to complete his post-graduation and qualify for the Public Service Commission examination. For every one who thinks their life is hopeless, there is a Swapna, a young widow in a hamlet near Bangalore, who learned and passed on English and computer skills to underprivileged children. Working at the One Billion Literates Foundation, she turned her tragedy into inspiration for several others.

When we see these people with limited means doing their bit, we must know that it is not time or resources we are short of, just the intent. Life demands a lot from each one of us, a little more from some others. Everyone has their own struggles, their own challenges to overcome, which is reason enough for us to be kind to each other; to teach our kids to not laugh at people with mental illnesses, or bully the slow learner in class; to give the lower berth on the train to the elderly; to read out and write an exam for those with physical disabilities. 

Government can make policies, pass laws, but the shortfalls can only be filled by us. The government is us, the corrupt babus, the middlemen, the profit-making, self-serving public contractors are us. It is for us to reach out to our fellow human beings and create an inclusive society. It is time to move the focus from charity to rights, from sympathy to equality.

Those that have been left out too have to stand up to be counted, claim their place in the family, society and world. There is no dearth of positive examples of people who have displayed extraordinary grit and determination in overcoming their disability, their economic challenges, to become a part of the mainstream, to be of value to society. Those who realise their potential, merit social respect. Each one can contribute in some way. Technology continues to provide new aids to simplify life for the disabled, the aged, the poor. It will eventually reach and impact all. But for human love and care to stay in short supply would be our collective shame.