World News from India

"A society where everyone, regardless of background or disability, feels welcome, included and supported"

Hired despite disability, and fired for same

(By Manasi Paresh Kumar, 11.01.12) His story is both evidence and indictment of Indian society's continuing callousness towards the differently-abled, the patina of urban modernity notwithstanding.

Twentyeight-year-old K M Kempesh holds a first-class diploma (with distinction) in computer science. His struggle to get to this level is inspiring, considering that he was born with retinitis pigmentosa, a genetic condition that renders the sufferer almost blind.

When he was picked by a software company, he was understandably thrilled. Yet, in less than six months, he has been handed his termination letter because of his medical condition. "I don't want any special favours because of this condition. All I wanted was a chance to prove myself and now I don't know where to begin again," a down-in-the-dumps Kempesh told Bangalore Mirror.

Kempesh was born to a farming couple in a village near Bellary, the only son among four children. He was born with the debilitating condition. Education is a distinguishing trait of the family — two of his sisters are engineers while another is a doctor. "I attended regular schools as a child, despite my problem, because there were no special schools in my village. Later, I moved to Mysore where I studied computer science at the JSS Polytechnic for the Differently Abled. It is a special-needs college, and every student suffers from some form of disability," he said.

Kempesh knew it would be an uphill task when it came to finding a job, and that made him work even harder. He passed out a topper with an aggregate of 87 per cent. Then, when Integra Micro Software Services came for campus recruitment and hired him on the basis of his scores, he was thrilled. "I was actually considering studying further. But when this offer came along, I figured work experience would help me in the long run, so I took it," he said. He shifted to Hebbal in Bangalore, close to his office, and his sister Ambika also relocated to look after him. "It was such a proud moment for my parents when 'anna' got a job. This termination letter has hit them hard," she told this paper.

Kempesh joined Integra in July 2011 as a diploma trainee with a six-month training period, to be followed by another six months of probation. He went through the mandatory medical exam. "It is not that I am completely blind. I can make out figures, but the details are fuzzy," he explained.

But even before his training period had ended, the company terminated his employment citing his medical condition. "When I joined the company, I used my own laptop because they did not give me a system. I needed a screen-reading software called JAWS. They tried me out in a couple of tasks in the testing sector, which I completed and was even appreciated for. But then I was just thrust aside. My team leader told me he had no confidence in my ability to work and complete the tasks. For three months, I was given nothing to work on. I sat the whole day reading up on JAVA, which is the platform I want to specialise in. We have to fill out weekly Excel sheets on what we have completed during the week. I had nothing to write because I was given nothing to work on. Everytime I asked them for work, they only told me that because of my blindness, I could not be given any work. It is the sheer insensitivity that got to me. Nobody spoke to me, I was left to fend for myself. It was very hard," he said.

Ambika said, "Everyday he would come back dejected, having wasted precious time practically learning nothing. But he refused to give up and continued to attend office hoping that some day he would be given a chance to prove himself. It was heart-breaking for me to see him go through this."

But whatever hopes Kempesh may have clung to were dashed when the company served him a termination letter in December last year, less than six months after he joined them. In a diplomatically worded note, the company said that because he could not move around the office, and since it was difficult to find a position for him, given his medical condition, in the limited roles that they had, they no longer required his services. It also said that as a special case it had extended his last working day by 15 days. "Your relieving is not because of your performance, but your medical condition and its constraints... But we will help you find another job," the letter concluded.

Needless to say, Kempesh is heart-broken. "I did not apply for a job with them. They were the ones who recruited me from a college for disabled people, and knew about my problem. If they did not have the facilities to accommodate me, then why offer me a job at all? Or come to our college to recruit anybody? Along with the hard work, hope is the only thing that keeps people like me going and fighting for a life of dignity. I know of many people who prefer to depend on charity, citing their disability. But all I wanted was a chance to prove myself. I was not even given that. All I needed was a little help to complete my tasks. They dangled hope before me and then took it away, throwing my disability in my face. What kind of a message does that send out?" he said.

Integra officials remained inaccessible, despite this paper's repeated attempts to contact the company's HR chief T K Ramesh. At one point, a staffer (who gave his name but which we are withholding in case he is targeted) gave us the email address of T K Ramesh. But our email to Ramesh did not receive any response.
Kempesh himself signed off with, "All I want them to know is that I can work just as hard as anybody and deliver on par with them. I needed a chance and a little bit of help. They need to know disability does not mean you cannot perform."

Impaired But Just As Good

When The Light Fades

Understanding cerebral palsy as disability

(By Snehlata Shrivastav, 01.10.11, Nagpur) Though not completely attainable, prevention still remains the best solution in tackling the increasing incidence of cerebral palsy (CP), a disability that is fast affecting almost 3% of the population. Identifying only the preventable reasons of the disease and thus eliminating them can reduce the agony of parents of CP children and the affected individuals.

The best step in this direction, experts feel, is women empowerment and a completely stress-free pregnancy. Stress and societal pressure of having a male child has emerged as one of the major causes of the disease in recent times. But this is a long drawn process which would be possible with attitudinal change in society in general and parents in particular. "Anti-natal care, stress free pregnancy and change in society's line of thinking, all put together can act as tools for a positive transformation that can minimize CP prevalence," opined Dr G Shashikala, the national general secretary of Indian Academy of Cerebral Palsy from city and a mother of a CP son who proved to be a successful person in life. The academy is organizing a three-day event for CP children beginning on Saturday. The event will conclude on CP day on October 3.

Dr Shashikala said, "Stress is the biggest damaging factor to the brain of an unborn child. Parents as well the in-laws need to look after their daughters well. But this care goes much beyond the medical solutions. Issues like forced pregnancies, unwanted pregnancies and insistence of having a male child by mothers themselves and society at large are some factors which too need to be addressed. Most women today are under huge stress thanks to the competitive environment at work place, peer pressure, social pressure which increases the risk of a baby suffering from CP."

However, Dr Shashikala looks at disability with a different angle. "Disability is as much a fact of life as ability. So why not take disability in its stride. Parents should not assume that right to education and job guarantee could solve all problems associated with this disability. Parents need to understand the limited ability of such individuals and help them cope up with it. Every parent has a right to dream best for the ward. But they need to differentiate between disability and disease."

Demanding optimality and not normality by parents also can reduce the physical and mental trauma that comes with the CP disability, Dr Shashikala insisted. Falling in line, Modern School, Koradi branch, principal Neeru Kapai said, "Schools do have a role to play in supporting such individuals. But it requires expert medical guidance and training to teachers. The abilities of CP children vary widely from child to child depending on their comprehension and adaptability levels. But they definitely require attention and care."

Source: www.indiatimes.com

Disability act draft backs right to retain fertility

(Chennai, R. Vasundara, TNN 12.07.11) The final draft of the new Disability Act, 2011, includes a first-of-its-kind proposal that upholds the right of the disabled to retain their fertility. Forced sterilization of disabled people, both physical and mental, will be a punishable offence with imprisonment up to 10 years and fine. The proposal, however, evoked mixed reactions. While state officials expressed their unease about the law and how to implement it, activists and NGOs welcomed it.

Forced sterilization is traditionally practised on mentally-challenged women susceptible to sexual abuse. To prevent unwanted pregnancy and the hassles of a regular menstrual cycle, mentally-challenged women are sterilized without their consent. In some cases, physically-disabled women are also sterilized as they are perceived to be incapable of taking care of children. By banning sterilization without the consent of the disabled person, the new law proposes to recognize the legal capacity of disabled people.

State officials are uncertain about its implementation. "How does one take the consent of a mentally-challenged person who does not understand the concept of fertility?" asked an official. "Also, how does one monitor such a rule? Sterilization still cannot prevent sexual abuse," said another official.

Source: http://articles.timesofindia.indiatimes.com/

Why can't I be a doctor, asks this Tamil Nadu girl

(Chennai, NDTV, 02.07.11) Vanithi was born with no fingers on her left hand but that has never scuttled her quest for excellence.

She always wanted to be a doctor and has the required marks to get a medical seat under the disability quota.

But authorities have rejected her application as rules bar those with disabled upper arm from admission to medical courses while those with disabled lower limbs can be admitted.

"The upper limb disabled students also have the ability to examine patients and treat them. So they should examine each student and then take a decision," says Vanithi.

The Persons with Disability Act promises equal opportunities for the physically challenged. The Tamil Nadu government says it is helpless as the Medical Council of India still follows archaic admission guidelines.

"According to present government norms, students seeking medical admission should have normal hands as otherwise they can't examine patients well. Otherwise we have to change the rules," says Dr Vijay, Tamil Nadu Health minister.

Vanithi's father, a junior engineer with the state agriculture department has moved Madras High Court.

"Even if my daughter doesn't benefit, it should help other disabled children like her in future," says S Muniappan, Vanithi's father.

The court has directed the Tamil Nadu government to reserve a seat for Vanithi till the case is settled. It has also sought a response from the Medical Council of India.

Source: http://www.ndtv.com/

Parents, docs welcome disability screening

(By Snehlata Shrivastav, TNN, 06.04.11) NAGPUR: City paediatricians have welcomed the recent proposal of state government on mandatory screening of every new born for disabilities in all private as well as government hospitals. The doctors, parents, social workers and activists, however, feel that making the screening process viable would require a lot of conscious effort and political will.

Dr G Shashikala, general secretary of Indian Academy of Cerebral Palsy (IACP), who also happens to be a mother of a cerebral palsy son now working with ICICI Bank, was the first one to react both as a parent and a doctor. "It is a long awaited decision. Though the Maharashtra advocate general Ravi Kadam has promised to make screening mandatory for all hospitals, it would be long before every child is tested compulsorily. It requires a lot of integrated effort on the part of doctors and parents," she said. She felt that the issue was vast and required proper and comprehensive training to the doctors too.

In India, developmental paediatrics is still a new field. "At present, 15% of population has some or other disability but there is no comprehensive course in developmental neurology for paediatricians or neurologists as yet. Most doctors working in the field are self-trained. The society needs a well planned detection and follow up programme from birth to adulthood," said Dr Shashikala thanking the judiciary for the proactive approach for making testing mandatory.

Leading paediatricians in city believed that though it might not be possible to test every baby for every disability, all new borns should be tested for at least five major disabilities and metabolic disorders that are treatable. A leading paediatrician and secretary general of Commonwealth Association for Mental Handicap and Developmental Disability Dr Uday Bodhankar said that ideally every child should be tested for all the inherent disabilities. This would be possible only with big political will.

"Doctors have long been demanding this but unless the policy makers take health as a priority and make neonatal testing free at all government medical college and hospitals not much can be achieved," he said. It is possible to conduct many tests without even pricking a child through cord blood test. "Picking up treatable defects through early intervention can reduce trauma of the parents to a large extent," said Dr Bodhankar.

Dr Satish Deopujari, chairman of Society for East Asian Countries for Neonatal Screening, too agreed to mandatory testing but he said it would be commercially feasible only if taken at mass scale. Small countries like Sri Lanka have reduced incidence of such disabilities through screening. "In India Goa has shown the way. It has already made five tests mandatory. Thyroid is one test that can prevent mental retardation completely if detected at birth. In US, 1000 tests are conducted at birth. Going by the cost benefit ratio, we cannot afford that but we can surely conduct tests for five treatable disorders," said Dr Deopujari.

Dr Dipty Jain, a paediatrics professor at the Government Medical College and Hospital, said that testing every child in the high risk group like premature babies could definitely be done in government set up. "One has to plan the testing in a cost-effective manner," she said. Indian Council for Medical Research, along with union department of biotechnology, is already conducting a project of neonatal screening in five medical colleges.

A mother not willing to be identified because of the social stigma still associated with disabled children was more than pleased with the initiative. Early intervention, she felt, could help parents handle children better. "Though parents love their child in any case, such tests will pave way for minimizing treatable disorders," she said.

Gokhale, another affected parent, in principle believed that every child born with a defect should be accepted but agreed that detecting treatable problems at birth would prepare parents for proper action at proper time.

Drawbacks of not testing at birth:

• Child could grow up with disability that could be treated on detection
• Child as well as parents undergo a lot of physical and mental trauma
• Simple metabolic disorders can cause untreatable conditions
• Visual, hearing and motor disabilities can add to the disease burden

Advantages of screening:

• Disabilities like hypothyroidism that causes mental retardation could be treated
• Disabilities that are better handled by paediatricians could be detected
• Parents could be sensitized and better prepared to handle the child
• Mass screening can reduce expenditure and minimize incidence of disabilities

Source: http://timesofindia.indiatimes.com/

Court reprieve for 2 polio-stricken doctors

(Shibu Thomas, TNN, 02.04.11) The Bombay high court on Friday came to the rescue of two doctors who were shown the door when they applied for admission to the postgraduate medical/dental courses because of their physical disability.

Dr Abhijeet Bhavsar, who passed his MBBS exams from Grant Medical College, and Dr Sanjit Makne, a dentist from Government Dental College, were affected with polio when they were kids

A division bench of Chief Justice Mohit Shah and Justice D Y Chandrachud in an interim order has directed the authorities to consider the two eligible for admission to the PG medical/dental courses on the basis of their performance in the common entrance test (CET).

While Makne secured first rank, Bhavsar was placed seventh at the PG CET in the physically handicapped category. Under the Persons With Disabilities Act, 3% of the seats in admissions to academic courses are for disabled persons.

The doctors, who were represented by advocates V M Thorat and Pooja Thorat, have also challenged the constitutional validity of the Medical Council of India rules, which say that persons with disability of more than 70% are not eligible. "The rule is discriminatory and violates the fundamental right of equality," said advocate Thorat. The lawyer pointed out that with prosthetic limbs, even a doctor who has lost both his legs can practise.

He argued that the 70% rule did not take into consideration non-clinical/para clinical branches which are part of the syllabus of the medical and dental courses. "There are specializations like microbiology, biochemistry, pathology, radiology or community dentistry where a doctor can operate the equipment sitting in a chair," said Thorat.

Interestingly, when the duo were granted admission to the MBBS and BDS courses, the medical reports had certified that their disability was less than 70% and non-progressive. However, in a recent medical test conducted by the All-India Institute of Physical Medicine and Rehabilitation, both were shown as having disability of more than 90% in their lower limbs.

Advocates Rui Rodrigues and Geeta Shastri, who represented the authorities, opposed any interim relief. The court, however, said that considering the fact that they had cleared their MBBS and BDS exams and were seeking admissions to non-clinical/para clinical courses, their cases should be considered.

The HC has admitted the petitions, and will decide on the larger issue of the legality of the 70% rule at the time of the final hearing of the case

Source: http://articles.timesofindia.indiatimes.com/

A journey of a different kind in Ladakh

(By Kunzang Dolma, Leh, 21.02.11) It has been a long journey for me, growing up in Ladakh and having all the aspirations of any ordinary girl who wants a happy life. Not for a moment did I imagine that I would find this happiness amongst the disabled people in Ladakh, those who struggle not only with the hard life in this icy desert terrain but with their own compromised abilities seeking a life of dignity which so many of us take for granted.

The turning point as I can now see was my participation in a training programme by a disability organisation around 10 years ago. It was essentially an exposure and sharing of information about the disability sector of which I had knowledge. As I watched, the hall where it was being held filled slowly; many of them on wheel chairs and some of them walking with the support of crutches. As I observed them, I gradually realized that many amongst them were unable to speak; some who could spoke in a garbled way.

Suddenly the world that is inhabited by disabled people became a reality for me, an uncomfortable reality. I was amongst them, yet not part of them. And frankly, in those initial moments, I was terrified. It was if I was confronting an ugly reality not outside but within, a reality that everyone outside me could see. The beginning of the session started with a prayer, which because of all these thoughts churning inside me, I was unable to recite. All I could do was close my eyes and listen and follow the hum of the recitation, which was happening in unison of voices around me.

Then suddenly it stopped and there was absolute silence. In that silence I came to an understanding. In a flash, it came to me, that it is not they who are disabled. It was I who was mentally disabled, clouded by my own prejudices, by an unfounded fear and perhaps a misplaced sense of what constitutes perfection.

It was clear that I had a long way to go in my own evolution, beginning now! That was the day that I, a young girl decided to devote my life to the cause of disability in my region, Ladakh.

Over the last ten years, I have made an attempt to understand the issues related to disability and started working closely with the people. I have realized that the rest of the world has closed their doors and hearts to the disabled people. I started to understand their capabilities and they have the potential to do all the work that the able-bodied people can do. Given an opportunity, they are capable of achieving everything in their lives.

My journey, my search, was greatly enriched by like- minded individuals with great commitment and vision to create a world of equal opportunities, where disabled could live with dignity I was associated with the Namgyal Institute for Research on Ladakhi Art and Culture (NIRLAC) which had a unit to promote disability issues.

But gradually many of those who were concerned with issues of the disabled felt that a rights-based approach needs to be adopted. One that would treat facilities and special provisions for the disabled not as a favour or largesse by the government but by virtue of inalienable rights granted under our Constitution and the rights framework formulated by national and international conventions. Under 'PAGIR', People's Action Group for Advocacy and Rights, we regrouped to begin our work for being treated at par with all others in terms of opportunities.

The work took me to remote villages in Ladakh. It was during this that I realized that the discomfort I had initially felt in that hall surrounded with people of varying disability was an emotion that was widespread. People were hiding their disabled children and I realized it was because of social stigma attached to it.

Disabled people hardly ventured out of their houses, due to prejudices in society. It was in the midst of this that we launched a village to village awareness campaign on disability, talking to people, disabled and abled alike and encouraging them to share their views and discuss. Gradually people opened up, questioning the very social mores that kept the disabled in a shroud of shame and secrecy.

This was the beginning then of not only my own personal transformation but of a social transformation. Since then with time and effort, the disabled started participating in the mainstream activities in the villages. This did not happen overnight. It took more than six to seven years. But it gave us the energy to take the issue to another level, one that could effect change in the ground situation.

After all, there are a whole slew of issues that need to be addressed by those in authority to enable a life of self-reliance, of equal opportunities and dignity for the disabled. We began to do advocacy with the government authorities on education, health and employment issues related to disabled in Ladakh.

We approached the LAHDC or the Ladakh Hill Development Council which is the 'Executive' looking into all matters of governance and policy at the local level. At the State level, we made advocacy efforts at the Jammu and Kashmir State government in Srinagar. Gradually, a momentum has been built up and people have begun to recognize the movement.

Still the road ahead is a difficult one. Public buildings in Ladakh are not built with access structures to facilitate movement of wheelchairs. Many laws only remain on paper. I have over time realized that the problem is basically in the mind-set. It is something that I too had and struggled to overcome.

If society or at least some people begin to view the disabled differently and not with a bias, then it will naturally follow that they will be treated with dignity and at par. So something fundamental needs to change in the hearts and minds of the Ladakhi people.

The Charkha Development Communications feels that if we create space there, then in the same way we take care of our children and old people in our families, the world will open out to accept disabled people and ensure their full participation in society.

Source: http://www.dailyindia.com/