Disability
on REM Zoe Lara (in India) (India), 21/Jun/2011 09:42, 34 days ago
I’m less than a month away from finishing my contract in Delhi and it strikes me that I have written very little about the main reason I am here. In many ways, it is the hardest post to write.My job through VSO was made possible because India has ratified the UN Convention on the Rights of Persons with Disabilities. The UNCRPD was celebrated by disability rights activists world over because it marks a shift in thinking about disability. Rather than seeing disabled people as objects or victims towards which the non-disabled in society are charitable, it recognises quite rightly that society is a cause of disability. A person may have a mobility impairment; but they are not prevented from accessing public spaces unless society specifically disables them by designing buildings for the majority who use steps, rather than the minority who need ramps. A person may be blind– but they are not prevented from accessing an education unless society specifically disables them by supplying classroom materials for the majority who learn by sight, rather than the minority who read through Braille. By identifying ways in which we have designed social structures and services to include the majority and exclude disabled people, the convention locates the foundation of the rights of people with disabilities in the necessity of correcting discrimination, rather than charity. To say that people who have disabilities are a drain on social resources is not only to perpetuate acommon myth: it is to deny the fundamental principle of equality between human beings.Some horrible atrocities have happened in India against disabled people, particularly those who have been institutionalised in under-resourced places. In 1997, the National Human Rights Commission visited 33 of 37 state-run institutions in India aimed at providing comprehensive mental health care. They found that most practiced archaic diagnosis and treatment methods, with some facilities modelled after prisons– high walls, watchtowers, fenced wards and locked cells. Violent patients were controlled by a combination of drug therapy, physical restraint, and seclusion; and hygiene and sanitation services were poor. In 2001, twenty-six people receiving treatment for mental illness burned to death in an institution near to Chennai because they were chained and therefore unable to escape the fire that broke out there. AARTH, the NGO I work with, campaigned to draw public attention to the number of deaths – more than a hundred – that had occurred in the overcrowded Asha Kiran Observation Home in Delhi, where many children with disabilities were neglected, or abused. It was only in 1987 that the federal government did away with a law instructing persons with mental illness to be imprisoned in jails in India for the safety of society.It is also not unusual to attend a grassroots workshop here and find that the parents of children with disabilities are keeping their child locked away in their bedrooms, rarely or never to have been outside. Sometimes it is because of shame– beliefs influenced by Hinduism in rural areas lead to a perception of disability as punishment by god for wrongdoing in a past life. Where there is not enough food, it is common for children with disabilities to be fed last. Where education is too expensive, the child with a disability is kept out of school – only 8% of children with disabilities receive an education, against a national enrolment rate of 60%. We also know of cases of sexual or violent abuse of children with disabilities – but those working for my NGO have their hands tied because there is no legal right or service in India to take a child away from an abusive family.However, it is very often poverty rather than discrimination that drives parents to keep children with disabilities locked away. Even the most loving parents are faced with a horrible choice– to stay home and care for their disabled child or to work so that the rest of their children will be able to eat. Our helpline frequently receives calls from parents who plead to know an institution where their children can be taken on – and we cannot blame them or even start to understand thekind of stresses that drives a family to make that decision. Unemployment for disabled people is estimated at over 75%, against the national average of 8%. People with disabilities are over-represented among the four in ten Indian citizens who live under the international poverty line of $1.25 perday – yet discrimination in access to education and work quite often locks them in a cycle of poverty that it is almost impossible to break free from. This – and the number of people with disabilities in India is estimated at 70 million, roughly the size of the UK population.Communication is also a problem here. There are around ten million deaf people in India and only 100 trained interpreters in the whole country. The government, in fact, does not recognise interpreting as a profession. The constitution of India identifies 22 official languages but sign language is not one of them; and Braille is not recognised as an official script along the same lines as Devanagari. It is virtually impossible to take part in any public institution or event if there is no accessible way of communicating with those around you.Some schemes have been worked out to try to correct some of the worst manifestation of discrimination. In 1995, parliament finally recognised that people with disabilities do not want charity– they want to participate on an equal basis with others – by passing a series of positive rights for persons in some disability categories, including reservations in government jobs and in educational institutions. Another law was created three years later for the welfare of persons with cerebral palsy, autism and what is still referred to here as ‘mental retardation’. It has an inadequate scheme for designating legal guardians to persons with these disabilities and often results unnecessarily in the removal of their autonomy and their legal rights – but it is broadly a positive development.As with many government schemes in India, however, implementation is a big problem. NGOs like my own frequently struggle with assisting people in slums in accessing their entitlements because documentation is required and many people living in slums in citiess do not have birth certificates or any other identification. A group at my work have been involved in organising jan sunwais, public hearings for people to have their voices heard by government officials. They are accountability forums, used by marginalised groups to ask for answers when programs are not being implemented and their needs aren’t being met. I have once before cited this exemplary submission to the hearing:My child is a child with Disability. At the time of her birth, I was admitted to hospital and was told that blood was required. My husband deposited blood at 9:00 a.m. They kept saying that blood had not been deposited. Our names were repeatedly announced in the labour room and I was told that my baby would not be delivered till blood was received. When my condition worsened, I was told that there was no place in the operation theatre. My child was delivered without help. The doctor spoke very rudely saying your child is dead. My child only shown to me after 9 days. After I was discharged, I refused to go back to the hospital for check up because of the bad experience and also because of the distance from home (12 kms) and transport costs. Later when we had a card to go to another hospital, I was told the child is disabled and nothing can be done. An NGO advised me to get a Disability Certificate for my daughter. They require a ration card or an identity card. I have neither.What we have been doing at work is to support persons with disabilities in breaking the cycle of poverty and becoming self-advocates in accessing their legal entitlements on an equal basis with others; and in leading independent lives. Its spirit is that of the slogan of movement of disabled people involved in UNCRPD negotiations– ‘nothing about us without us’. My role is focused on the implementation of the UN convention in India. Since 2010, the government has been putting together a new statute to bring Indian law in line with the UNCRPD, so I have been looking for gaps in the draft and have attended some of the strategy meetings around it. I sent in some submissions about the rights of prisoners with disabilities that are being considered by the committee at the moment. I’ve also spent lots of time researching issues of access to justice, legal capacity and the right to food in India. This month, we haverun workshops with grassroots disability rights activists in Delhi and Orissa around these issues. In a country where awareness of the law is so low, it means a lot to be able to explain to people what their legal entitlements are and to learn from them about issues that can be translated into advocacy priorities.In the course of my work, there have been lots of days in books– but also others meeting and interviewing people, running workshops and learning from activists – and I have been given tingles more than once. In negotiations over the new law, there were high emotions and threatened walkouts, as well as a candlelight vigil in December to mark disappointment at the state of the first draft. The drafters of the bill relented in January and agreed to state-wide consultations in December, so that those subject to the new law could be consulted on it. (Most of the country live in rural areas, a world away from the high corridors of Delhi law-makers). I meet people who humble me: a man in rural rajasthan, who had put himself through university when his own family did not recognise his right to education and food; my colleague Renuka, who is blind and somehow navigates the anarchic, horn-honking, scissory delhi roads that I am afraid myself to cross! Javed Abidi, an activist and wheelchair user who has forced airlines to become accessible and the government to secure the right to vote for people with disabilities in India – through grit and determination and through taking his cases of discrimination right up to the Supreme Court.I also get tingles when I read about inequality issues here and it has been the saddest days that have motivated some of my other blog posts here about poverty, hunger and the caste system. Encounters on the road with people who are quite visibly ill or dying often burn in my brain for lots longer than the seconds that I meet them, and I dream about them. Grappling with statistics to try to put things into perspective hasn’t always helped. I heard that last month, India lastpledged $5bn– an amount almost equivalent to its own annual healthcare budget – on aid to Africa , even though India has more persons living in poverty than Africa’s 26 poorest nationscombined. The country’s GDP per capita is about a third of the UK’s but it has 52 dollar billionaires and spends $600 million per year on a space exploration program and a number of other free services for the middle classes rather than on poverty alleviation schemes and the realising the rights of people with disabilities. I go to a lot of free concerts and public events in Delhi, with slums set just outside their revolving double-doors. I don’t want to project the stereotype of people living in these slums as victims – but at the same time, I leave the events and go home knowing that I am implicated intheir continued poverty.I have found living in Delhi very hard. I am quite happy with dirty feet and doing my washing in a bucket– but I miss open spaces and my country-girl heart thumps whenever I get away from the pollution and into a park. Riding in the back of an autorickshaw sometimes feels simultaneously like living and dying; and still thrills me. The heat has been really hard, and on days when it has been too hot togo outside, I have looked at the peeling paint on the walls of our apartment and felt like a prisoner. The pollution and heat choke me at times when I am jogging. On the other hand, when I swallow back my self-indulgent wallowing, I like to sit on rooftops and watch the children in my street playing and skipping around the traffic without a care in the world. At one stage, it was so hot that I slept only by standing under a cold shower in all my clothes before bed time. Now I actually miss going to bed dripping – and this week in Orissa (which is cooler than Delhi), climbing under a sheet again has felt very strange!A last little word: As I have been learning about human rights and poverty issues here in India, I have also been following alarming news about what is happening to the rights of people with disabilities in the UK at the moment. My flatmate Katie– who spent years campaigning on disability rights issues in Britain before leaving for Delhi – has said more than once a key difference between the UK in India is that here in India, people lead their lives in the open, whereas in the UK, people with disabilities neglected or abused behind closed doors. I saw footage of the march this year when disabled people came out to protest at beihttp://www.blogger.com/img/blank.gifng thehardest hitby government cuts. A Mencap study this month found that the police werenot properly investigating hate crimes against people with learning disabilities, or treating them as credible witnesses. People with disabilities are discriminated against all the world over; and while some of the issues I have been involved in here are unquestionably atrocities, it is sickening to hear that a slow erosion of rights is also taking place back home. All this, while the most-read newspaper in the UK, the Daily Mail, perpetuates its myths of benefit scroungers, using case studies about a tiny minority to perpetuate malicious myths that marginalise the vast majority of disabled people– who need, use and have a right to support.How you can helpIf you’d like to donate to my NGO, Aarth Astha, they’d be very happy to use it to further the cause of disability rights in India.Hereis the link to their website .If you’re concerned about disability rights issues in the UK,Leonard Cheshireis a really good place to start.