Professor Lotika Sarkar, 91, a widely-known pioneer in the fields of law, women’s studies and human rights, passed away in New Delhi on February 23, 2013. She taught criminal law and conflict of laws at the Faculty of Law, University of Delhi and was an active member of the Indian Law Institute. She was a member of the Government of India‘s Committee on the Status of Women in India and had been a founding member of several institutions—the Indian Association for Women Studies and the Centre for Women‘s Development Studies. Her husband, veteran journalist Chanchal Sarkar, predeceased her more than seven years ago. While remembering her we are publishing a tribute by one of her distinguished studets, who is now herself a Professor  of La , mourning her demise.

She Lives in Our Hearts—Our Most Beloved Teacher: Lotika Sarkar

Ma’am has left us. After living a full life which had its share of joys and sorrows, successes and failures, she has moved on. Lotika Sarkar made singular contributions to the cause of gender justice be it as a member of the Committee on the Status of Women; or as one of the signatories of the Open Letter to the Chief Justice in the Mathura Case; or as the co-petitioner in the public interest action on the Agra Protective Home. All these contributions have their material manifestations and hence would be studied, acknowledged and remembered. But her most notable and yet most invisible contribution was her contribution as a teacher and it is that contribution I wish to record and remember here.

We are often told that teachers play a vital role in building the social fabric of any society. They do so by training capacity and building character. They do so by humanising the head and informing the heart. They do so by being givers, givers of their time, their intellect and their emotion. Lotika Sarkar was all this and more. That is because she taught in the best way there is to teach, she taught by example. Ma’am did not ask us to do anything which she did not do herself. If the choice was between withdrawing a public interest action and refusing to be the member of the Law Commission of India; to succumb to the graceless behaviour of a Centre-in-charge or seek a premature retirement, she chose integrity, dignity each time.

When told as a young teacher of criminal law by the then Dean that she need not teach the law of rape and that a male colleague would come and deliver those lectures, she changed the sequence of the course and presented the Dean with a fait accompli. This because she knew that no amount of reason and assertion would have convinced her conservative patriarchal senior that she could instruct on all manifestations of human relations on an equal basis with her male colleagues. She needed to do and show it. Ironically, the Delhi University, where she conducted this quiet revolution in the 1950s, withdrew Ramanujam’s A Thousand Ramayanas from the curriculum on the specious logic that women teachers would be embarrassed to teach it.

Dr Sarkar’s classroom provoked thought. She took positions but did not impose them and was continuously open to learning from her students and making a fair evaluation of their work irrespective of her predilections. I remember in her criminology course she strongly endorsed Bonger’s theory on the economic causes of crime and was rather impatient of Lombroso’s physiological explanations. And yet a student who submitted a research paper strongly advocating Lombroso’s theory of crime topped the class.

Dr Sarkar did not write as many books as she could have written if she had not spent all her time listening to book proposals and commenting on book chapters. She was every-body’s favourite sounding-board—be it friends, colleagues or students. She could well be holding some kind of a record of honourable mentions in intellectual works which she helped nurture with unparalleled generosity of spirit. It was this generosity that her friends, colleagues and students recalled when we brought out Engen-dering Law: A Collection of Essays honouring Lotika Sarkar. As editors, Archana (Parashar) and I were faced with a situation where we had more contributors than we could include. We were continually besieged by her very many admirers who wanted to join us in celebrating her work, her presence, her life.

Prof Amita Dhanda is a Professor of Law, NALSAR University of Law, Hyderabad.

PARENTS of women with intellectual disabilities are going straight for sterilisation procedures rather than ”existing and viable options” to help control menstruation and contraception, a national Senate inquiry has heard.  Associate Professor Sonia Grover, a gynaecologist at the Royal Children’s Hospital, told the hearing she was horrified when she received ”straight-out” requests for hysterectomies. She said increasing access to respite care, helping women manage their periods, and ensuring contraception is in place are options ”so these young women, if they are able, can enjoy a close sexual relationship without risks of pregnancy if they are not able to have a pregnancy and care for a child”.  Under Australian law, parents wishing to sterilise a child or adult children who cannot give consent for non-therapeutic reasons must apply to the Family Court or, in some states, a guardianship board.

However, Dr Grover expressed frustration with the therapeutic test. ”The question really is: Is this a procedure you would do on a non-disabled person?” she said. ”We should not be doing a sterilising procedure if we would not be doing it in somebody who did not have a disability.” The inquiry into the involuntary or coerced sterilisation of people with disabilities in Australia began in September as part of the government’s response to a series of calls from the United Nations for an end to non-therapeutic sterilisation without consent, regardless of disability.  The executive director of Women with Disabilities Australia, Carolyn Frohmader, said options such as family planning and menstrual management were not being explored because the sexuality of young women with disabilities was not widely accepted.

”Parents and other care-givers are not made aware of these or are discouraged from understanding their effectiveness,” Ms Frohmader told a recent hearing in Melbourne.  In one case from Queensland in 2010, an 11-year-old intellectually disabled girl (”Angela”) was sterilised after she began getting her period, which was heavy and irregular, at age nine. Contraceptive pills were ineffective, two gynaecologists reported she would benefit from the removal of her uterus, and a Family Court judge was satisfied less-invasive treatments had been exhausted.  ”I am not a doctor but I am the mother of a nine-year-old child and I found that case very problematic for a whole range of reasons,” Ms Frohmader said.

The inquiry has so far received just five submissions, including one from a parent explaining her wish to have her 27-year-old intellectually disabled daughter sterilised.  ”Her own life is not stable enough to support another life,” the parent wrote. ”Advocates who say she has the ‘right’ to have a child need to factor in her ability to be responsible for that child.”  The author said they had already raised three children, but at 54 did not want to raise their grandchild. ”Sterilisation of my daughter is one thing that I can ensure for her before I die, otherwise who will?”  The inquiry is receiving submissions until February 22 and is due to report on April 24.

http://www.naracoorteherald.com.au/story/1213079/sterilisation-first-option-for-the-disabled/?cs=7

At a time when self-promotion is second nature to many and earning print space often requires desperate efforts, we are surprised to meet 42-year-old Nilesh Singit. The kurta-clad disability rights activist, appearing more like a JJ School of Arts student, flatly refuses to be interviewed, citing ‘typical’ treatment meted out to the disabled in ‘such’ articles. We agree, many stories of differently-abled people are either too sympathetic or overtly glorifying, but assert that we won’t veer in either direction.

“Things are blown out of proportion, a small achievement is written as ‘overcoming all odds..’ he tells us later, having agreed after a mediator’s word. So here are some facts about Singit’s life, with the least usage of superlatives: Nilesh belongs to a large joint family hailing from Karnataka but has grown up in Mumbai. The cerebral palsy (a group of movement disorders caused by damage to the brain before, during or just after birth) he was born with was nearly invisible for his siblings and cousins whom he shared a close-knit childhood with. At his school (special one for persons with disability – PWD, an idea he’s against) and later, his inclusion factor wore off a bit. “Over the years as a PWD and as a rights advocate, I have realised that things come in packages of advantages and disadvantages. I have come to accept it, why rue it? Those who ‘acquire’ disability have difficulty accepting it,” he feels, likening himself to a person ‘who failed the medical test by a whisker and could not pursue his/her dream of being an air force pilot.’ Surely a perspective we haven’t heard before.

It’s this attitude (and the eloquence in conveying it) that we quite relish, despite his career having enough to gush about. Once before getting on to a flight, Singit was asked for his medical certificate, which he didn’t have. A doctor was called, who then proceeded to ask him questions, to which Singit interrupted and stopped short of lambasting him and the crew, before making his way into the flight. Turned out that the doc was asking questions related to Down’s Syndrome. “Where’s your certificate?” Singit asked them back.

His flamboyance may have to be tucked in at various moments though, as he’s working in one of the most challenging sectors of the government – advocacy. As a research officer at the Centre for Disability Studies, Nalsar University (Hyderabad), he writes papers, conducts audits and litigates for the betterment of PWDs in India, and not all people he meets are smooth to deal with. “I’ve been caught up quite a number of times in what is termed as ‘friendly fire’. I always carry a white hanky,” he claims, tongue firmly in cheek.

That said, those who know Singit well don’t really risk not taking him seriously as the man has arrived at this position after much experience in the field. An MA in Literature, he pursued disability studies and went on to play several key roles in the field – trainer, advocate of rights and researcher being some. “There is a dearth of writings on disability; as an access audit consultant I found that even though there are tonnes of data on universal design, there is not much on adaptation and customisation for an individual’s needs,” he informs. Of course, being a PWD himself was a great influence in advocating for the UNCRPD (UN Convention on Rights of Persons with Disabilities), an international instrument that provides PWD with the same human rights as everyone else, which is sanctioned by India. “Disability studies are the way to get the PWD in command of his/her environment and life,” he admits.

His strong opinions and voices for and against all things perfect and imperfect come out unfiltered through his writings on the web. His blog, ‘Disability News Worldwide’ is replete with informative, transformative, even evocative posts. Another blog carries his rant against the Lokpal and an old ‘open letter’ to Shah Rukh Khan, while his social network profiles bear pointers to the range of work he’s accomplished and waiting to do. But it is only after hearing his plans do we judge him as a passionate writer: “I regret not having written as much as I ought to have. I think I have in me a book or two I’d like to begin writing sooner than later.”

“I would rather write than be written about,” he says of his above mentioned reluctance, explaining that the very act of overcoming the stereotype sometimes reinforces the stereotype. We don’t know if this article would make the cut with him, but we sure have returned more insightful after having met him.

(An initiative of Trinayani, a nonprofit NGO founded by Ritika Sahni, the THIS ABILITY articles celebrates the intriguing lives of persons with disabilities. Trinayani works towards Disability Awareness and Support, communicating through workshops/seminars, print, radio, films and other electronic media.  Visit www.trinayani.org or write to us at trinayani.contact@gmail.com)

The Articles in the Series “This-Ability” are copyrighted material of Trinayani.  This Blog is carrying the series on the request of Ritika Sahni, Founder Trinayani.  Any queries or request to publish these articles please contact Ritika Sahni. The owner of this Blog is not responsible for any copyright infringement

Nilesh Singit

“I start my day at around six and spend time reading on my net book — for work or leisure — before getting ready for work. Breakfast is my most important meal of the day because I sometimes tend to miss my lunch due to work load. There’s no fixed time to reach work, it’s my own office! No two days are the same – on some I may have a client visiting me, on others I may be at court all day. I don’t like to go out on a work day but sometimes end up going for a movie with friends. I also enjoy theatre and travelling.” Sounds like the life of just another urban person? It is, the only bit we’d like to add here that 46-year-old Kanchan Pamnani is visually impaired.

Living with her mother in Malabar Hill, Mumbai, Kanchan was born with low vision which resulted in complete loss of vision over time. She has been visually impaired for over ten years but seems to take this with complete nonchalance, describing her day as if it’s a piece of cake to get through. “It isn’t,” she counters us, “but I didn’t study so much and work so hard to sit at home and cry just because I lost my eyesight.” We note her eloquence and safely guess that it helps her immensely in her profession.

Our search for fascination in this ‘simple’ life Kanchan claims to lead, brings us to her office in the Colaba area. It’s just the week day morning she’s told us about, and she’s making her way from the cab into the building. With a little help, she finds her way to the gate and then takes it on her own. Once in the lift, she tells the liftman, “Eighth floor.” The liftman shuts the door and starts counting, “1…2…3…” Once we reach the first floor, he says, “Here you are, eighth floor!” As she exits, she wishes him a good day and tells us, “It’s our daily joke!”

On her phone while walking toward her office, we can hear her saying, “I dialed your number by mistake but I’m glad to know that your number hasn’t changed in years!” As she catches up with the friend, she shuffles her keys for a few seconds and opens the door. Going around the disorderly room, typical of old law firms in Mumbai, she switches on the lights, air conditioner and settles in her chair ending the chat with a promise to call back soon. We are nearly astounded at this routine, imagining what this multi-tasking would be like blindfolded.

“The whole world takes care of me, you saw for yourself, as soon as I got out of the cab, two men on the street helped me, cabbies are usually friendly too.” But doesn’t it get difficult to trust people, we ask. “It’s simple,” she exclaims, “the world works on trust. You put your hand out there and someone will reach out to help you. If you’re going to constantly doubt and fear getting deceived, you won’t reach anywhere. You must trust the environment around you and have faith in God.”

We’re intrigued at her constant insistence that hers is a ‘simple’ story, and quiz her about the big bad world of law. Surely she doesn’t expect special treatment from her co-councils, judges and clients. “Law is the best profession; after all Lady Justice is blind — the court is one place where blindness is understood!” On a serious note, she adds, “As long as you’re ready and prepared with your work, no one can say anything to you.”

Kanchan wasn’t born blind, and her successful career despite the gradual loss of vision is a story of grit. “I was never able to see clearly. Even when I had low vision, I would just make out if you’re fair or dark, not tell your features. Losing vision wasn’t a sudden, overnight change that I had to adjust to.” She continues, “To me you’re a ghost.. just a voice coming at me! You could be sitting nude for all I care. I tell my colleagues that they can wear whatever they want, I wouldn’t know! Though the day we have to meet a client or go to court — they better come dressed formally.”

Much has been written about the ‘heroics’ of this blind advocate and solicitor at M/S Pamnani and Pamnani, but not many have described her wit and humour first hand. Also, it’s not like her determined multitasking doesn’t have its low points. “There are times when I feel down, when work is not done on time, when I lose a case or when a client is yelling, but I’m never low because of my inability to see. I sometimes get irritated because everything is slower. The speed that I had as a sighted person, it’s not the same anymore. Otherwise, the special softwares on my phone and computer help me tremendously. (Kanchan uses ‘Talks’ on her smart phone and ‘JAWS’ – Job Applications with Speech, on her PC besides audio books to read.) I try not to depend on anyone else as much as I can. If I wanted that, I would get married!”

(An initiative of Trinayani, a nonprofit NGO founded by Ritika Sahni, the THIS ABILITY articles celebrates the intriguing lives of persons with disabilities. Trinayani works towards Disability Awareness and Support, communicating through workshops/seminars, print, radio, films and other electronic media.  Visit www.trinayani.org or write to us at trinayani.contact@gmail.com)

The Articles in the Series “This-Ability” are copyrighted material of Trinayani.  This Blog is carrying the series on the request of Ritika Sahni, Founder Trinayani.  Any queries or request to publish these articles please contact Ritika Sahni. The owner of this Blog is not responsible for any copyright infringement

Nilesh Singit

Nothing gave away the fact that Avelino de Sa was born with cerebral palsy as he sat behind the desk in his first floor office opposite Panaji Head Post Office.

A certified investment consultant, Avelino de Sa has been self-employed for the last 12 years and has over 100 clients. In 2003 he started the Disability Rights Association of Goa (DRAG; www.disabilitygoa.com) He explains what DRAG is: “It’s a collective of disabled persons. We include all types of disabilities. There are people who are doing various things – working in the government, private sector, self-employed and unemployed.

“An individual finds it difficult to take up and resolve problems. An Association makes an impact. When we approach a department to implement the rights mandated by the State Government, it does something about it. Our Association has received a lot of help from Cidade de Goa, Syngenta Ltd., The International Centre Goa, Travel & Tourism Association of Goa and the Goa Chamber of Commerce and Industry. The media has also been very helpful in highlighting our issues.”

“DRAG gets cases where qualified people have been denied promotions or employment because of a disability. Goa has a State Disability Commissioner whom disabled people can approach in case of injustice yet people are not aware about it.”

“DRAG was instrumental in Kadamba Transport Corporation buying two wheelchair accessible buses. It informs builders, colleges, schools about wheelchair friendly architecture. However many temples, churches and mosques are still not accessible to the disabled thereby denying them the fundamental right to worship”.

Avelino is a member of the Local Level (North Goa) Committee of the National Trust of Persons with Autism, Cerebral Palsy, Mental Retardation and Multiple Disabilities.

“My parents didn’t think about any special school or different education for me as in those days there was no choice,” Avelino tells me. “I had to be educated, hence was sent to the nearby school, like my siblings or like any other child. My mother regularly took me to the Spastics Society in Mumbai so that I got the correct kind of physiotherapy and other treatments at the right time. Today parents send their disabled children to special schools and I think these children lose out on many things as they do not get to interact with regular children.

“At the Red Rosary High School, Mirama, I was expected to do my homework and take tests and exams like anyone else. It wasn’t considered a big deal that I had a physical problem with movement. After my tenth, I did my HSC from the People’s High School, Panjim and my graduation from S. S. Dempo College of Commerce and Economics, Panjim.”

As we talk, Avelino takes notes: “I keep writing whatever comes to my mind, so that later I can tackle the points.” A cupboard shelf is full of trophies that he hasn’t told me about, from the Rotary Club of Panjim Riveira(for Vocational Service to the Disabled, 2009) and other institutions (for exceeding targets!! for Mutual Funds and other investments). On prodding, he tells me a charming story: “In 1994, I was in the third year of my graduation, in SS Dempo College. My classroom was on the first floor. I requested Principal Bhende to shift me to a ground floor class as I had difficulty in climbing stairs. He shifted the entire division to a room on the ground floor so that I had the familiar faces around me also.”

After a hectic but well-chalked out daily schedule, Avelino, the second youngest of five siblings, surfs the net and listens to gospel and Konkani songs. “I’m not fond of reading; with friends I keep in touch via the mobile phone.” “I’m involved in Church activities.” I am also a member of the Crusaders for Jesus with Mary and the YMCA Panjim

What about the future? “Parents still don’t know where to take their disabled children and flounder in desperate confusion from place to place. Which means that the doctors, too need to be educated about what’s available in Goa, so that they can guide their patients correctly. I leave his office with his assurance that DRAG is working on that.”

(An initiative of Trinayani, a nonprofit NGO founded by Ritika Sahni, the THIS ABILITY articles celebrates the intriguing lives of persons with disabilities. Trinayani works towards Disability Awareness and Support, communicating through workshops/seminars, print, radio, films and other electronic media.  Visit www.trinayani.org or write to us at trinayani.contact@gmail.com)

The Articles in the Series “This-Ability” are copyrighted material of Trinayani.  This Blog is carrying the series on the request of Ritika Sahni, Founder Trinayani.  Any queries or request to publish these articles please contact Ritika Sahni. The owner of this Blog is not responsible for any copyright infringement

Nilesh Singit

At the ground floor hall of an organization in Mumbai one dreary evening, a conference on disability is winding up. Many of its participants, flown in from all over India, are celebrated survivors of disabilities and advocate themselves. They’re hobbling away, giving goodbyes with feeble but mirthful handshakes. One of the lasts to leave her seat is Jeeja Ghosh, her small frame clad in a dull orange salwar; after having scribbled something. One glance at her, and we disbelieve that this face of cerebral palsy in India is 42 years old. Must Google, we make a note.

“I was born with it, I don’t know how it feels living without it… but I’m happy!” Jeeja begins, her speech halting and eye-contact wavering. (We’d been asked if we’ll need assistance in understanding her, but going by just the first minute, we’re totally in-sync with her.) Jeeja has been living with cerebral palsy, an umbrella term for a group of movement disorders caused by damage to the brain before, during or just after birth. It is characterised by weak joints, speech/vision/hearing problems and loss of co-ordination among other things. Though it affects roughly 2-2.5 children per 1,000 in India, we are already home to 25 lakh people with it, most of them ‘bearing with it’ rather than ‘living despite it’. Jeeja belongs to the latter minority.

While she begins telling us of her schooling and Masters in Social Work from Delhi University, we get our first surprise – the woman is a Leeds University degree holder. “Educational qualification was only a superficial reason. I wanted to take up the challenge of seeing new places and living by my own in a foreign country,” she tells us. And even though the West’s ‘highly individualistic’ culture irked her, she returned home freer and more confident. As she’s fidgeting with her cellphone, she’s told not to leave for her flight back to Kolkata, as it has been delayed. We’re only happy.

A few weeks ago, just as she’d got on a flight from Kolkata, she had been told the opposite – to leave. The SpiceJet pilot, perhaps judging only by her physical state, deplaned her, leading to a furore in the media. Incidentally, Jeeja had approached the Supreme Court for compensation and its reaction was expected the day we met her. “I had a torrid few hours but in a way, this brought the issue of ‘attitudes’ towards the disabled on the front page. After the episode, I see more people coming forward and taking an initiative to change the system or hit back at insensitivity,” she admits. We later learnt that SC had served a notice to the erring carrier.

Having worked with the Indian Institute of Cerebral Palsy for more than a decade, Jeeja recalls that teaching and advocacy naturally happened to her. “I did not resist it, nor do I enjoy it. it’s just a part of my life.” That said, she has been striving to better the lives of scores of disabled people in India, a country biased towards just the visually and orthopedically challenged. Ask her if this annoys her and she agrees, “But this (the lack of attention to disabilities such as cerebral palsy) gives an impetus to our advocacy efforts.” Her institute, The Indian Institute of Cerebral Palsy Kolkata, every day, strives for infrastructural, social and most importantly attitudinal changes in society to make the disabled feel included among the majority.

To assume that Jeeja leads a mundane work-dominated life would be a folly. Albeit many of her friends are married, she does catch up with a few (and their children) every now and then, besides going for walks to the beach and shopping, ‘not in malls’ though, she points out. The unnecessary sympathy and untoward attitude of those around her, especially in her Kolkata locality, isn’t likeable but she has evolved enough to stop caring. Just an attentive, warm greeting or a silly joke or chat about her favourite actor Hrithik Roshan can be enough to make her happy, we figure. Sure this would be the case with most differently-abled persons, who strive for inclusion.

As Jeeja shuffles measuredly, we figure it’s time for her to pack. But we don’t miss shooting a curiosity toward her: what flight is she taking? “I’m never flying SpiceJet again!” she exclaims, adding the name of another carrier. What’s more, the episode has added one more thing to her to-pack lists every time she travels, a printout of travel and other laws as regards the disabled laid down in the constitution. “It’s false armour. But it gives me a sense of confidence,” she tells us.

We return and Google her name, to confirm if her age matches her 20-something looks, but instead hit upon lots of stories on her bravado for others’ cause. Jeeja can’t be one of us, after all, simply because she’s way more motivated than most of us!

(An initiative of Trinayani, a
nonprofit NGO founded by Ritika Sahni, the THIS ABILITY articles celebrates the
intriguing lives of persons with disabilities. Trinayani works towards
Disability Awareness and Support, communicating through workshops/seminars,
print, radio, films and other electronic media.  Visit www.trinayani.org or write to us at
trinayani.contact@gmail.com)

The
Articles in the Series “This-Ability” are copyrighted material of
Trinayani.  This Blog is carrying the series on the request of Ritika
Sahni, Founder Trinayani.  Any queries or request to publish these
articles please contact Ritika
Sahni. The
owner of this Blog is not responsible for any copyright
infringement

Nilesh Singit

Nilesh Singit

TRINAYANI is a notprofit NGO working with a vision towards creating mass awareness about Disability Issues, hoping to alter perspectives on the strengths, problems and issues faced by persons with disability. We believe that neglecting the cause of including disabled people in the mainstream of social life, happens more out of ignorance, misinformation and exposure to appropriate visibility of people with disabilities. OUR aim thus is to communicate APPROPRIATE INFORMATION on disability issues, to portray messages which convey the fact that Diversity is Good, Diversity is Needed and Diversity adds Value to our lives.

Our recent Trinayani initiative titled This-Ability are a series of articles which that explores the intriguing lives of persons with disabilities beautifully written. We all need to be saved from having a single story of what persons with disabilities are because the consequence of a single story is that it robs people of their dignity and it makes the recognition of our equal humanity difficult and it also emphasizes how we are different than how we are similar. The single story of disability in our minds is what leads to prejudices and stereotypes. So, through these articles we are trying to weave many stories about persons with disabilities. Hope you will enjoy reading them.

Warm regards

Ritika Sahni
Founder-Trustee

Hollywood film The Avengers reiterated our notions of superheroes being incredibly bulky, wielding extraordinary powers and looking every bit smashing. This would make it difficult for us to draw a picture of Charudatta Jadhav as one. The 43-year-old boss of a CTO organization of TCS in Mumbai after all has roving, sightless eyes, wears mundane formals and can’t even walk too far without an assisting hand. But listen to his story and you might begin undermining Captain America or the Hulk.

Jadhav has till now represented India in six World Chess Championships and two Blind Olympiads, compiled 32 books on chess, developed the world’s only talking software for chess, led the All India Chess Federation for the Blind (AICFB) from 15 years and scaled a 17,220 ft high Himalayan peak… among other things. A story goes that once a reporter who’d interviewed him presented three facets of his life to his editor as three different people’s stories, and all of them were approved. As we meet him in a large room at his office during his lunch break, the reason comes across. The man has achieved so much already that even if he lists facts, it sounds like he’s boasting.

Charu, as he is called by those who befriend him, lost his eyesight when he was 13, thereby adding one more number to India’s most visible disabled population. At over 1.5 crore, blind persons may enjoy an advantage over other disabled people at some levels, but chat with one to know how uphill a life it can be.

“Chess is the only game where blind persons are at a level-playing field with the sighted,” he explains, talking of his early acquaintance with the game. “The time after my blindness was torrid, my father lost his job soon after.” He could easily have gone down the twisted vicious cycle of self-pity followed by unproductiveness but he credits chess to have uplifted him. “At 16, in a district-level tournament, my first as professional, I defeated all sighted players to become champion,” he reminisces. It was to be the turning point, the birth of India’s contemporary blind chess legend. At a personal level, however, the game began driving him forward, to perform professionally, to challenge social norms, to study and innovate and eventually pushing him to create more success stories like himself. Who thought of chess as a ‘boring’ board game with black and white squares?

As Charu’s showcase began filling with trophies, his career began finding an echo in India’s little talked about world of chess. The AICFB, of which he has been the General Secretary, was formed after a lack of a national organisation for chess for the blind was felt. “We created a structure that encouraged blind persons to come forward and hone their talents,” he tells us. His august recognitions abroad too inspired many. Among these included being the first blind Indian to procure an international rating in Commonwealth Chess and the first VP of the International Braille Chess Association that controls much of the game today. For a blind son of a mill-worker from Kurla who loved playing chess, this ascent is an astounding story.

Perhaps it is the way blind persons are treated at chess that helps their passion. “All professional tournaments have the same rules for the sighted and the blind. It gives us a sense of equality,” Charu gestures. And needless to say, just like him, several blind players have beaten sighted ones square at landmark moments in history.

The only difference in a game of chess for blind persons is that the moves are announced (‘E4, A6’ etc), the black squares are raised by 2 mm, every black piece has a dot on top and every piece has a tiny rod under it which goes into holes in each square. All that said, doesn’t a sighted player enjoy the advantage of looking at game position all the while, we ask. “Everyone asks me this!” Charu smiles, before retorting, “Look, all my initial moves are mapped in my mind, and so are the moves to counter my opponent’s moves. It doesn’t matter whether he sees what I can’t. I already have my input in mind!” Besides, blind persons are allowed to touch the pieces to know of their positions.

At perhaps the peak of his career, in 2004, Charu quit playing professionally to assume a leader’s role in honing young talent and organising tournaments besides taking up social work to give back to the community. The results of this difficult decision are apparent now, with 6000+ active players of AICFB, one of whom has recently beat Charu’s all-time high rating, 2053. “I’m only glad,” he admits, “I quit only to do more for players like him!”

As his smartphone rings, we realise he has business to cater to. It has a 5MP camera and has talking functions for every word on its screen. But this speech is superfast and confusing, we allege. To which Charu replies, “For you maybe, but I understand. I have to keep up with my sighted friends and outdo them, right?” Superheroes are always in a hurry, after all.

(An initiative of Trinayani, a nonprofit NGO founded by Ritika Sahni, the THIS ABILITY articles celebrates the intriguing lives of persons with disabilities. Trinayani works towards Disability Awareness and Support, communicating through workshops/seminars, print, radio, films and other electronic media.  Visit www.trinayani.org or write to us at trinayani.contact@gmail.com)

The Articles in the Series “This-Ability” are copyrighted material of Trinayani.  This Blog is carrying the series on the request of Ritika Sahni, Founder Trinayani.  Any queries or request to publish these articles please contact Ritika Sahni. The owner of this Blog is not responsible for any copyright infringement

Nilesh Singit

‘Chhoone se phailta hai toh sirf pyar’, actor Shabana Azmi had told us ignorant Indians in an AIDS awareness TV spot in the 90s. So radical was that line that we couldn’t help recalling it as we entered a small room with a loft on the ground floor of a municipal school in south Mumbai. Frankly, we’d expected the Helen Keller Institute for Deaf and Deaf blind (HKIDB), a pioneering body in Asia for its work for deaf blindness to be grander. But minutes into a ‘conversation’ with one of its students Pradip Sinha, we realised its grandeur. After all, we were using both our hands to clasp his in various ways to communicate and unravel an outstanding life story.

‘Deafblind’ is one word, a term used to describe the deaf who lost sight or vice versa. Most of us won’t first recall the name of this institute’s namesake as a revolutionary deaf blind person, but would get perspective at the mention of Rani Mukherjee’s character in the film Black. We spot a forlorn postcard of the film too, while ‘talking’ to Pradip. He is using the American Sign Language (ASL) to talk and feeling his teacher and interpreter Devyani Hadkar’s palms to ‘listen’. Their hand movements are too swift for us, and often end prematurely as one understands the other beforehand, and we only reason this sync to years of their time spent in this room.

“As a child, I was confused and scared,” Pradip is haphazard as he tells us of his past, but his face is ever-beaming. The only brother to five sisters in a middle class Kolkata family, he was born deaf with Rubella Syndrome (group of abnormalities that occur to a developing foetus) but lost vision only at age 10. “His protective parents wouldn’t let him out too much until his sisters discovered our centre in 1991 and sent him to Mumbai,” Devyani tells us. She doesn’t need to refer to him on many things we ask – his past, present, even about his feelings. Devyani is the doting figure that has anchored Pradip to this city.

This also means that Pradip’s sisters, who’re incidentally visiting him when we’re there, don’t know him as much as Devyani does. “Mujhe itna nahi aata,” one of them admits of the ASL. Pradip was brought here when he was nine, and like in cases of many deaf blinds, this created some distance with his blood relatives. Even though he goes home every year like any other out-of-towner in Mumbai, the overall lack of communication has created a perplexed wall between them. “In fact, he just didn’t go last year because he ‘didn’t feel like’,” Devyani adds. She is therefore, playing the bridge between him and his family.

Another element that has held Pradip together in his different youth so far has been religion, and we discover this only when he tells us his email id, which has ‘Philip’ in it. “My priest gave it to me,” he says. “Why did you convert?” we ask. Devyani is curious too. Pradip makes random signs till we figure he’s just mumbling and suddenly the smile we thought was perennial turns into a nervous, straight face. “My family did not trust me in many things. So I decided for myself in 1996 to be happy,” he opens up on email later. Devyani, however believes that witnessing the Hindu-Muslim riots of 1993 may be the reason. The ‘Philip’ within ‘Pradip’ is still a mystery to us, especially when Devyani tells us of his staunch ways of not even having ‘prasad’.

That said, Pradip is still just another man in the big city, living on rent with a roomie Akhtar (also deafblind), travelling 90 minutes by train every day, chasing dreams of becoming a businessman. The time that he flies out of his nest is near, he knows it; Devyani knows it. “I’m ready to stay wherever my work takes me. I might need to be with my mother as I’m the only son!” he asserts. After he finishes his Diploma for Computer Education for the Deafblind, he’d become a trainer for other deaf blind persons, and utilise his proficiency with special computers. The woman interpreting his thoughts to us now is a key player, and has in fact called the sisters here to give them a subtle ‘it-is-time-he-must-go’ message.

The question of long-term companionship is lurking too. Pradip is 33 and though he doesn’t reveal much on the subject, Devyani reports that along with his roommate and friends, he’s been excitedly talking on this and scouting for matches – disabled or otherwise. “Some of them have been hitched to sighted partners… their optimism is high!” she smiles.

An hour or so of this warm, three-way talk later, Pradip takes our palm and doodles an invisible ‘Nice to meet you’ with his index finger. As we envelope his hand in both ours and pat him, we realise Shabana Azmi was indeed right.

(An initiative of Trinayani, a
nonprofit NGO founded by Ritika Sahni, the THIS ABILITY articles celebrates the
intriguing lives of persons with disabilities. Trinayani works towards
Disability Awareness and Support, communicating through  workshops/seminars,
print, radio, films and other electronic media.  Visit www.trinayani.org or write to us at
trinayani.contact@gmail.com)

The Articles in the Series
“This-Ability” are copyrighted material of Trinayani.  This Blog is
carrying the series on the request of Ritika Sahni, Founder Trinayani.  Any queries or request to publish these articles please contact Ritika Sahni. The owner of this Blog is not
responsible for any copyright infringement

Nilesh
Singit

“Sofia!” the bed-ridden magician yelled, keeping at it until his nurse appeared. “Throw this vase, destroy it,” he ordered, fuming at Sofia’s hesitance. That moment in the 2010 film Guzaarish touched many, making us wonder how it must be living, laughing, getting furious when one’s limbs don’t move at will. ‘Qwa-dri-ple-jya’, we even read about the disorder; after all it had affected none less than Hrithik Roshan’s character in a big banner film. What we didn’t read was a name among its credits, a Divya Arora, who’d assisted the director and the actor, and is quadriplegic herself. This is her story.

To arrive in Mumbai chasing dreams of making it big in the show business requires grit, but to do it when one is on a wheelchair, is asthmatic and has difficulty in sensory, motor and speech skills requires pure conviction, or insanity. When we meet Arora at her suburban flat one humid night, we unravel more of her qualities, not one of them uninspiring. Her room is a typical writer’s den featuring a messy desk, ashtrays (belonging to her brother Dinesh, also a writer) and an open Word document where worlds are created with words.

“I had to come to Bombay, I was meant for better things,” she tells us, after we talk about her opting out of activism for the persons with disabilities in India which she found disheartening. “Infrastructure gets sorted only if you are Atal Behari Vajpayee” she tells us of the incident when an airline got an elevator installed just for the former PM after his knee surgery. “Besides, I’ve been an actor from age five, and with all my writing and performing experience, how could I have stayed in Delhi? I hate that city!” she speaks of her hometown she left three years ago.

Arora’s struggle hasn’t been as much about demanding producers and opportunist middlemen than with internal battles. “She’s loves being independent, but needs help at simple functions such as getting off her chair to head to bed,” Dinesh explains, adding, “Also, some people not understanding her speech frustrates her most!” Arora having grown up in Paris and travelled the world also means she has a slight accent, he claims, but we don’t spot it.

Already having an experience in a cross-section of creative disciplines – copywriting, modeling, acting, theatre, production to name a few, Arora hasn’t taken long to make a name for herself in Mumbai and has an enviable resume featuring top producers, big projects and a national award. But it is her personal life that we find more riveting, and wonder at her throwing back her head and smiling as she unravels various sub-plots of it. “I am a very romantic girl,” she says, “and Bombay has given me love, made my dreams come true!” She keeps mentioning ‘someone’ special throughout, with an unmistakable twinkle. And though she misses home food, nothing can beat the thrill of roaming about this city’s roads, in her motorised chair.

Arora’s take on films as a disabled person and a critic is refined. “People don’t love disabled characters on screen, they love the actors – Vidya Balan in Guru, Rani Mukherjee in Black, Hrithik in Guzaarish.. it only means that they’re disconnected when they meet people with such disabilities in real life,” she explains. She’d love mainstream cinema that would weave in disability and not separate it. “Have you watched Vicky Donor for example?” she asks. Her opinion on the Guzaarish director Sanjay Leela Bhansali isn’t too glorious though: “He was all ‘Divya-Divya-Divya’ while making the movie, where is he now?” she asks of his disconnect. “I’m not surprised that his film flopped!” she gestures, but admits she’d work with him if an opportunity arises.

There isn’t a dearth of opportunities now though, Arora is currently ideating, writing and acting in a big banner film she tells us little about. At our obvious question about her first love, she doesn’t hesitate to say ‘theatre’. “It’s more interactive, more impactful,” she reasons, although not having taken to it in a while now. Also, not that we didn’t guess it, she loves watching and writing romantic comedies (she’d be good at it too, we feel, given all the romance in her life). “I loved Jaane Tu, and Jab We Met!” she exclaims. And like that of many wielders of the pen in Bombay, Arora’s five-year-plan too is of producing her own film.

We are not surprised that unlike the quadriplegic magician’s character she helped portray two years back, she loves happy endings and are convinced she’ll have a more dramatic one herself. “I want to win a dozen Filmfares, six Oscars, live a love life feeling complete and eventually die in his arms, in Bombay!” she grins. If only she could script this story too.

(An initiative of Trinayani, a nonprofit NGO founded by Ritika Sahni, the THIS ABILITY articles celebrates the intriguing lives of persons with disabilities. Trinayani works towards Disability Awareness and Support, communicating through workshops/seminars, print, radio, films and other electronic media.  Visit www.trinayani.org or write to us at trinayani.contact@gmail.com)

The Articles in the Series “This-Ability” are copyrighted material of Trinayani.  This Blog is carrying the series on the request of Ritika Sahni, Founder Trinayani.  Any queries or request to publish these articles please contact Ritika Sahni. The owner of this Blog is not responsible for any copyright infringement

Nilesh Singit

“Welcome to Haal Chhero Na Bondhu! This is your favourite channel and I… am RJ Den!”

So begins Sayomdeb Mukherjee every morning from his wheelchair, talking into the microphone at Kolkata’s Friends FM studio, his voice as crisp as his shirt. Mukherjee, or ‘Den’ as he’s called by listeners and friends, hosts a show which can now be dubbed ‘interesting’ after actor Aamir Khan has made social causes cool. But unlike Khan, 31-year-old RJ Den is not a celebrity, at least not in the conventional sense of the word. In fact, his mundane hairdo and bespectacled, pencil-mustached face almost give you a ‘village simpleton’ vibe. However, this RJ is nothing short of a hero, for he spoke his first words only after turning 25.

‘Haal Chhero Na Bondhu’, which translates to ‘Never give up, friend’, is a slot when listeners call, text or write in with their problems, keen to seek RJ Den’s solutions or simply his keen ear. Den hadn’t dreamt of having this work profile through his childhood, growing up with what was believed to be ‘neuromuscular dystrophy’, a disorder that impairs the functioning of muscle groups. “I was very ambitious when I was young too; I couldn’t attend school as the teachers wouldn’t get my speech, so I started watching cartoons to learn English,” he tells us. He wasn’t totally mute in expression though, as the AAC, the Augmentative Alternative Communication method (spell boards that help silent people communicate, the type that Stephen Hawking uses) would help him ‘talk’. “Unlike other users of AAC who point at alphabets, I could just use my eyes,” he adds. The only person in his world who would not require even the AAC to know what he was feeling was his mother.

Den’s life before he began speaking wasn’t any less intriguing, as his thirst for knowledge led him learn History, Geography and Politics. On one hand as he withdrew himself from local socialising, on the other he began travelling – to conferences on AAC and other disability issues in Washington, Denmark and Brazil. He presented papers and met advocates, which lay the foundation of Ankur, a disability awareness and advocacy group he established in 2003. “We try to instill in the disabled some confidence and in the society some awareness! I’ve also been fighting for infrastructural rights – so while the Metro’s wheelchair-friendliness has happened, much work with the bus and taxi syndicates is remaining” he informs.

It won’t be sensationalist to see Den’s life in two parts, and a miraculous moment in between; that’s how he sees it too. On November 17, 2005, a dreary morning after his doctor father had given him dopamine-boosting medicine, he felt uneasy. After nervously tossing around for a while and seeking the concern of his parents, he uttered the first words of his life: “Baba, oshudhita click kore gache!” (‘Dad, the medicine has clicked!’). As tears rolled down all their eyes and Den began to utter more and more words akin to a two-and-a-half year old, he found himself in a new world of speech. “It was a miracle,” is all he says of that moment, but we’d like to give credit to medicine too.

“My condition was discovered to be dopa-responsive dystonia (lack of the neuro enzyme dopamine), whose symptoms were similar to neuromuscular dystrophy,” he explains. Did the frustration of ignorance ever hit him? Surely this ‘accident’ could’ve happened earlier, we say. “No, I don’t believe in ifs and buts. That was the only available diagnosis then, this is a new phenomenon,” he reacts, “I’m grateful that I can speak now.” Den, who’s still wheelchair bound, now has to live with taking four dopamine pills a day for his entire life, small cover charge for entering a new world.

In life’s version 2.0, the little man eagerly delved into education, at age 25. A 10^th and 12^th standard certificate later, he is now pursuing English majors, the exams of which are round the corner. His accidental fall into the ocean of speech was not as overwhelming for him as we assume it would’ve been, as he was perfectly ‘communicative’ with his AAC. He was excited, yes, and still is, while sharing slices of his life with strangers on Friends FM.

But the radio channel’s most special jockey will soon have to choose between learning further plus furthering Ankur’s activities and doling out words over the microphone. “I cannot choose. That day will come, but I’d rather not think about it,” he admits. Even if he opts out of his radio job, Sayomdeb ‘Den’ Mukherjee would be happy he shared the biggest lesson of his life with the world every morning at six, ‘Haal Chhero na Bondhu!’

(An initiative of Trinayani, a nonprofit NGO founded by Ritika Sahni, the THIS ABILITY articles celebrates the intriguing lives of persons with disabilities. Trinayani works towards Disability Awareness and Support, communicating through workshops/seminars, print, radio, films and other electronic media.  Visit www.trinayani.org or write to us at trinayani.contact@gmail.com)

The Articles in the Series “This-Ability” are copyrighted material of Trinayani.  This Blog is carrying the series on the request of Ritika Sahni, Founder Trinayani.  Any queries or request to publish these articles please contact Ritika Sahni. The owner of this Blog is not responsible for any copyright infringement

Nilesh Singit

Sunil Sahasrabudhe is a teacher, living like millions of others in a bourgeois apartment in suburban Mumbai. On routine evenings, his wife Shweta is found chatting away with neighbours while he works on his laptop inside, the sole room lit up by their sprightly daughter Kimaya’s presence. The trio’s tightrope walk in maximum city isn’t any different than that of other one-child families, their disagreements being around preferences, behaviors, inflation… the usual. Why are we talking about them here, then? Here’s why: Sunil is deaf. So is his wife. Their daughter is not.

On a warm evening last week, we visit the trio. We could’ve emailed Sunil our questions – stuff like ‘How has the communication system evolved at home?’ and ‘What challenges did he overcome to complete his MA abroad and resume his career as a special trainer?’ But that would’ve meant not noticing things such as his door-bell connecting to a light bulb; stickers of a recent ‘No TV Day’ campaign on a cupboard, a tiny validation of them not having a TV at all… and most importantly, that Sunil and Shweta can have nearly perfect, smooth conversations with anyone, thanks to their extraordinary lip-reading skills.

Sunil has been deaf from birth, just like his parents and younger brother Sujit. The Indian Sign Language (ISL), a world where there is a gesture for every alphabet and action, is an intrinsic part of him but unlike many other deaf people (around 1 in 12 in India) who use it, he is proficient enough to train its teachers. As Project Coordinator (Technical) @ Indian Sign Language Cell of AYJNIHH Mumbai he ends up not only teaching the language, but also instilling valuable self-worth among students.

It was during his early teaching stints in 2000 that one demure student came by and subsequently fell in love with him. Shweta blushes while reminiscing those days. “I was confused about my identity before that,” she admits, after telling us that nobody in her immediate family is deaf. “But his ways gave me confidence and I began to like him. It wasn’t strange liking my teacher… we connected as he was deaf too!” she smiles.

In under a year-and-a-half came Shweta’s turning point, marriage. “It’s not unusual, deaf people marry only deaf people!” she explains. The most interesting, and without doubt most beautiful chapter of their lives opened in the form of their child. “We weren’t really concerned about her being deaf too, we’d love our child anyway,” Sunil tells us. But the first-time mother was more hurt by the behaviors of those around them. “On the day of her delivery, someone came and clapped near her to check if she was hearing,” she recalls her hurt. These ‘clapping’ types didn’t cease to turn up even later, adding to the parents’ frustrations.

Kimaya, perhaps the brightest six-year-old we’ve ever met, loves her abacus, playing online games and going out. Being a CODA (child of deaf adults), she is sharp with ISL and understanding all the non-verbal cues from her parents. Her childhood does have an unusual number of visits to the ENT specialist though, for regular checks. They might not admit, but the parents seem overtly attentive to this and even a slight niggle in her ear ticks off paranoia.

Our most intriguing element about this family is the most routine one for them. They communicate with others vocally, albeit with an occasional mispronunciation or tremor, but sometimes have to request the speaker to write in case of misleading words (we had to do this just thrice, for our chat which lasted an hour). The couple is better off with sign language among themselves, which means that their fiercest arguments are silent. “I do rant when I’m angry though!” Shweta says, admitting to be the more short-tempered one. “When I was abroad, we would fight in sign language over webcam chats!” Sunil laughs.

Technology has changed Sunil’s and several million deaf people’s lives in astounding ways that we can ever imagine. India’s telecom revolution has made it possible for them to have video calls (on 3G networks) and use signs, a big leap from two years ago when mobile conversations only meant texting. Efficient advocacy has improved Mumbai’s infrastructure for the disabled too. “The bigger handicapped coaches in trains are finally giving us the space we deserve,” Sunil raises his eyebrows for emphasis.

As a man of multi-layered communication, what language does he revel in the most we ask, and pat comes the reply, ISL. “I have a problem with deaf kids being forced to learn speech training. They’re never going to be perfect. Even I’m not! Why should they undergo all the trouble just to communicate with the hearing world?” he argues.

Perfect sign language is any day better than imperfect speech, we learn. But more importantly, as we bid the Sahasrabudhes goodbye, we also learn that language is a luxury some can afford, but some others are rich anyway.

(An initiative of Trinayani, a nonprofit NGO founded by Ritika Sahni, the THIS ABILITY articles celebrates the intriguing lives of persons with disabilities. Trinayani works towards Disability Awareness and Support, communicating through workshops/seminars, print, radio, films and other electronic media.  Visit www.trinayani.org or write to us at trinayani.contact@gmail.com)

The Articles in the Series “This-Ability” are copyrighted material of Trinayani.  This Blog is carrying the series on the request of Ritika Sahni, Founder Trinayani.  Any queries or request to publish these articles please contact Ritika Sahni. The owner of this Blog is not responsible for any copyright infringement

Nilesh Singit

This World Disability Day, we looked back at five memorable characters in films on disability… and reflect upon what we can seek from them.

‘The International Day of People with Disability’, ever since United Nations put it on the global calendar, falls on December 3 every year, and unlike its predecessor of two days, the World Aids Day, goes largely unnoticed in our part of the world.

Issues related to disability need not make it to mainstream news and discussions only after cases of discrimination or crimes, for we Indians have good reason to talk about and get sensitized to some facts. Facts such as the 70-100 million disabled citizens of our country.

Without any more statistical details to intimidate you, here we present our favourite picks of film characters; those who’re not necessarily disabled themselves, but have given away a crucial lesson or two through their films. Beware, this list is only indicative and post year 2000, for a fresher recall. For best results, call your local DVD parlour and revisit these masterpieces.

1. Jean Dominique – The Diving Bell and the Butterfly

Lauded as one of the greatest films on disability of all time, this Belgian drama is the true story of the extraordinary life of French magazine editor Jean Dominique, who suffers a stroke and finds himself ‘trapped in’ a completely paralysed body – but for his left eye.

Jean’s character, who is grappling through the film to accomplish and publish a book simply by batting his eyelid to communicate with his people, is one of the most inspiring ones you’ll see on screen. His therapist is an epitome of patience too, for reciting the entire alphabet repeatedly to wait for his ‘blink’.

Jean managed to write, edit and published his book.. and in the process also brought together his ex and current lovers, aged father and children. He died days after publishing it. The lesson: impossible is nothing!

2. Joseph Braganza – Khamoshi

Closer home, we dare not leave out one of Bollywood’s most endearing disabled characters – Nana Patekar’s Goan man of the musical Khamoshi. Credit to his incredible acting or to director Bhansali for etching out an in-depth character, but truth is that Mr Braganza taught many of us how to emote, and that there is no such thing as too much emotion.

Braganza, a deaf father and husband amidst tough domestic relationships, introduced the masses to the charms of the Indian Sign Language. That said, he also let his eyes do the talking… and crying too, bucketfuls of it.

Next time you see your child achieve/lose anything, be sure to let them tears flow like nobody’s watching. It’s a therapy that will win you many friends, and bring you closer to yourself!

3. Driss – The Intouchables

Earlier this year, a French film about a quadriplegic man and his relationship with his caretaker fleeted by our urban theatres, and chances are that you might’ve not heard of it at all.

Driss is a broke black man newly hired by an aristocrat for his personal upkeep as he has quadriplegia. The former, simply by being his brash, unapologetic and casual self, wins over the heart of his boss and others; and embarks upon many self-discovering adventures too. Like the Diving Bell, this one’s a true story too!

The lesson – you need not study protocol or think twice before interacting or forming new equations with disabled persons. A healthy dose of humour, friendship – even if insensitive – is preferable over ignorance.

4. Barfi

So much has been written and talked about Ranbir Kapoor’s portrayal of a deaf character that we thought it won’t be worth featuring it here; but  testing your retention capacities is worth it!

It’s a fact that unlike Barfi, most men with verbal or auditory impairments lack the panache and confidence to begin conversations with strangers or make the mischief he does in the film. But the point to be taken here is – they can be as flirtatious, friendly or conniving as any guy next door. Bring them out of their shell, using sign language is a good hook to do so!

Besides, thanks to some responsible film making, we learnt through Barfi that mockery or sympathy have no place in interactions with disabled persons.

5. Nikumbh sir – Taare Zameen Par

Finally, we must invoke our man Aamir’s character in the 2007 film to wind up this list. Firstly, here was a ‘hero’ of Indian cinema who’s not into daredevilry, but is a simple, passionate teacher. Nikumbh sir, through his sensitive attitude and body language in class (we saw much of that in Aamir Khan himself in Satyamev Jayate this year), won over the hearts of many.

Perhaps the most impact this pretty old-fashioned teacher with new values had was in the scenes when he roars at parents of the autistic child for being regressive. His words were lessons in parenting to many – especially to those who see their children as ‘investments’ – ready to push them into the most ‘lucrative’ fields.

Respecting each child’s uniqueness and abilities, whether he/she’s disabled or not, was Nikumbh sir’s biggest lesson, which is worth re-visiting regularly in India!

(An initiative of Trinayani, a nonprofit NGO founded by Ritika Sahni, the THIS ABILITY articles celebrates the intriguing lives of persons with disabilities. Trinayani works towards Disability Awareness and Support, communicating through workshops/seminars, print, radio, films and other electronic media.  Visit www.trinayani.org or write to us at trinayani.contact@gmail.com)

The Articles in the Series “This-Ability” are copyrighted material of Trinayani.  This Blog is carrying the series on the request of Ritika Sahni, Founder Trinayani.  Any queries or request to publish these articles please contact Ritika Sahni. The owner of this Blog is not responsible for any copyright infringement

Nilesh Singit

No Olympic rings

Goodbye Olympic rings, hello Agitos

It may sound similar, and end in “lympic”, but the Paralympics are not the Olympics. The iconic interlocking rings have no place here.

Instead there is the Agitos, the three swoops in red, green and blue that represent the Paralympic motto “spirit in motion”.

IOC and the IPC as organisations – they are different

The British team at the 1964 Tokyo Paralympic Games

The two Games are separate entities. The first international Paralympic Games took place in Rome, a week after the 1960 Summer Olympic Games were held there. In 1964, they were held in Tokyo, again just after the Olympics. But in 1968, Mexico City, the host city of that year’s Olympics, refused to host the Paralympics. They were instead held in Tel Aviv and from then until 1988, the Paralympics continued to be held in locations completely separate to the Olympics.

Then in 1988, Olympics hosts Seoul took on the Paralympics, and they have been held together ever since. In 2001, it became official, and now host cities have to bid for both. There are rumours that one day the two might merge, but opinions are split on the merits of such a move.

Classifications

Sport is only fun or competitive if you pit like against like.

At the Paralympics, you don’t have a blind runner competing against one with cerebral palsy – but you may have a person with cerebral palsy competing against someone with restricted growth, which is perhaps a less obvious match.

In order to stream the athletes, they have to go through vigorous testing of function and movement from a sporting medical professional who then gives them a classification.

Swimming has 14 classes. S1-S10 are variations on physical impairments with 10 being least disabled – it covers everything from amputees and spinal cord injuries to someone with dwarfism. S11-S13 are allocated to visual impairments and S14 for those with an intellectual disability.

The S-class refers only to freestyle, backstroke and butterfly whereas SB is breast stroke and SM is individual medley.

An athlete classified as a 9 in freestyle could be a 10 in butterfly – you are classified according to the stroke you’re using as swimming on your back could prove more challenging for you depending on your impairment mix. Classifications are also affected depending on whether you have the ability to dive in or start a race from within the pool.

The knock-on effect of having more classifications is that this year’s Paralympic swimming as a whole has 148 gold medals up for grabs compared with 34 at the Olympics.

Classifications can be controversial. “There are some who try to cheat their class,” says former Paralympian Baroness Tanni Grey-Thompson. “When they deliberately cheat it’s the same as taking drugs. But some do just fall one side or other of a line and can move up and down between classes.”

Sports that are the same but different

Although there are sports that only disabled people play, you’ll recognise most of the events at the Paralympics.

Swimming, cycling and athletics will happen in a similar way to their Olympic equivalents, albeit split into many different classifications, and with added prosthetics, wheelchairs and human guides.

Spectators at sports like wheelchair rugby, sitting volleyball and blind football, who are familiar with their able-bodied equivalents, will quickly realise that the Paralympic versions bear little resemblance to the sports they know and love.

The ball used in blind football is less bouncy than a regular one and contains ball bearings to make it audible.

It is played on a hard surface by two teams of five players. The area of play is smaller than in regular football and is surrounded by boards. The boards not only stop the ball from going out, but also reflect sounds from the ball and from footsteps, which helps players to orientate themselves on the pitch.

Outfield players, blind or partially sighted, wear eye covers to level the playing field. The goalkeeper is fully sighted but is not allowed to leave his area. A “guide”, also sighted, directs players from behind the goal.

In the absence of visual communication between players, they use specific terms. Shouts of “voy” – the Spanish word literally meaning “I go” but idiomatically “I’m here” – act as a warning that one player is about to tackle another. Teams rely heavily on numerous audible clues, so spectators must stay silent during play.

Sports unique to the Paralympics

There are two sports which are exclusive to the Paralympics – goalball and boccia.

Goalball is played by two teams of three blind and visually impaired athletes, on an indoor rectangular court with tactile markings.

The object is to throw a heavy ball filled with bells into the opposing team’s net, while defenders try to block its progress with their bodies.

Boccia features some of the most disabled athletes at the Games. Although it is played competitively in more than 50 countries, it is one of the least well-known Paralympic sports.

A bit like bowls, boccia takes place on an indoor court. Playing individually, in pairs or in teams, athletes roll, throw or kick the balls, aiming to land them close to a target.

It was originally introduced as a game for people with cerebral palsy, but over the years, boccia has been extended to include players with a variety of disabilities affecting motor skills.

Boccia has four disability classifications, BC1 to BC4.

The BC3 class players are unable to propel the ball themselves, so a lightweight ramp is put in place to aid its movement towards the target.

“[BC3 players] are allowed to have an assistant on court with them,” says ParalympicsGB boccia team captain Nigel Murray.

“The person who is their assistant has their back to the court so they are unable to see any of the play and they’re totally directed in the movement of the ramp by the athlete”.

Some players communicate with their assistant through blinking or head movements.

Accessibility

It took five days to turn the Olympic Village into the Paralympic Village.

The venues have increased their wheelchair capacity by removing and rearranging the existing seating – the stadium will have 568 spaces compared with 394 during the Olympics. Blind spectators will be supplied with audio guides, while those with hearing impairments will be seated with a direct view of large screens so they can follow the action.

“The village did have to be Paralympified,” says director of Paralympic integration Chris Holmes.

“London is the first year that there has been a joint organising committee, which means it was planned from the start. The bathrooms, the signage, the pavement have been fully accessible from the beginning.”

Tappers

Tappers stand at each end of the pool

One of the most important aids to the blind swimmer is the tapper. Standing at each end of the pool is a person holding a long pole with a soft circular ball on the end. As the swimmer approaches they are tapped on the head.

It is a sign to the swimmer that the end of the pool is approaching, and the confidence gained by the tapper’s presence means the swimmer can move at full pelt without fearing a painful crash at the end.

“The pole looks a bit like a fishing rod,” says Marcelo Sugimori, one of two tappers in the Brazilian Paralympic team. Sugimori used to tap for his sister Fabiana, who won gold in the 50m freestyle in Athens 2004. He now works with the team’s two other blind and partially sighted swimmers.

“We tap the swimmer when they are between two and four metres from the end of the pool,” he adds.

“It takes a lot of training together, and a lot of trust.”

He says that he aims for a single tap, ideally on the head or upper back.

Guide runners for blind athletes

Clegg uses physiotherapy tubing and electrical tape to link her to her guide

Blind and partially sighted runners can compete with a guide. Usually tethered to the athlete by a rope, a guide runs with them, acting as their eyes.

Sprinters Tracy Hinton and Libby Clegg will represent ParalympicsGB in this way.

Clegg, who runs the 200m and 100m, maintains contact with her guide Mikail Huggins, using a loop of physiotherapy tubing, bound in the middle with electrical tape.

She described the process of running with a guide as, “a bit like doing the three-legged race but attached by your hands rather than your feet”.

“To execute the run properly you need to be smooth and in time, with both the pace and the stride length correct.”

Clegg can run 100m in 12.41 seconds.

The guide talks throughout the race, explaining to the athlete where they are on the track, flagging up bends and making a call on whether or not the athlete should accelerate, hold the pace or relax. They are allocated a lane each.

The totally blind runners, T11 class, will always have a guide, but those categorised as T12 – who have some sight – can choose.

Most blind or visually impaired female runners partner with male guides, as the guide must have the ability to go faster than the athlete.

The golden rule of guide running is not to cross the line before the athlete, a crime punishable by disqualification. Both Clegg and Hinton have lost out on past medals when their guide unintentionally pipped them to the post.

But it is not just runners who use a guide.

Blind athletes competing in the long jump and triple jump also use guides, though here they stay stationary, shouting commands, clapping and directing athletes through the jump.

Age

Viewers new to the Paralympics may notice there are a number of athletes who excel in their field despite being a little older than you might expect sportsmen and women to be.

At Wimbledon this year, commentators were questioning how long Roger Federer could continue at champion level being as he was then the ripe old age of 30. At the Paralympics, however, we find that GB’s wheelchair tennis champ Peter Norfolk is 51. Norfolk won gold in Athens and Beijing, is presently ranked third in the world and will be the flag bearer for ParalympicsGB at the opening ceremony.

Much was made of older Olympians as well this year. Hiroshi Hoketsu competed in the dressage at 71. Gymnast Yordan Yovchev, 39, finished seventh in the final of the men’s rings. Yamile Aldama, 40, competed for Team GB in the triple jump. In sports like equestrianism and shooting there are plenty of competitors over the age of 40.

But the effect is more pronounced in the Paralympics. GB blind football captain David Clarke is 41, boccia’s Nigel Murray is 48, archer Kate Murray 63, discus thrower Derek Derenalagi is in his first Paralympics at 38 and the athletics captain and runner Tracey Hinton is 42.

Athletes may have excelled later than their non-disabled counterparts as a result of choosing to use sport as part of their rehabilitation after acquiring a disability, like Afghanistan veteran Derenalagi.

Other reasons are a little more complicated. The pool of disabled athletes is smaller than that of the Olympics due to lack of opportunity – be that about physical access to sporting facilities or lack of imagination from PE teachers or those supporting disabled people in their development. Self-esteem or simple lack of hands-on experience might mean it never really enters the minds of many who could be extremely capable if supported.

Head of the British Paralympic Association Tim Hollingsworth acknowledges the age differences and says: “The routes into the sport for new athletes are more varied and less predictable than those who’ve been doing nothing but their sport until this age.”

Hollingsworth hopes that the Games will inspire disabled people, non-disabled PE teachers and those in charge to appreciate the possibilities out there.

Hollingsworth is keen to point to a general diversity of age in the GB squad. At the other end of the scale we have wheelchair fencer Gabi Down at 14, sitting volleyball’s Julie Rogers at 13 and swimmers Chloe Davies, 13, and Amy Marren, 14.

Drug testing

Paralympic athletes are subject to the same list of banned substances as Olympic athletes. Anyone who requires additional medication for pain or treatment must apply for an exemption.

Each application will be considered on an individual basis by a medical committee. The same goes for Olympic athletes.

“It’s a common misconception that a lot of Paralympians will be on prescription drugs. That’s not the case at all,” says Nicole Sapstead, director of operations at UK Anti-Doping.

“Obviously there are athletes with spinal injuries and they need pain relief. But mostly it is the same as the Olympics – things like asthma and diabetes.”

Therapeutic Use Exemptions are granted with a defined dosage for a specific period of time.

The banned substances are the same in both the Paralympics and the Olympics, and athletes on prescription medication must prove that there is no suitable alternative that they could take instead.

Reporting by Damon Rose, Emma Tracey and Lucy Townsend

BBC UK

St. Petersburg (Russia) and Budapest (Hungary). In a case initiated by MDAC, the Russian Constitutional Court yesterday quashed as unconstitutional the lack of alternatives to plenary guardianship. An estimated 300,000 people are currently under guardianship, all stripped of their personhood and of their legal rights. The Court ordered the parliament to enact a new law which better respects people’s decision-making capacity.

Since 1982, Irina Delova has lived in “Social Care Institution No. 3” in St. Petersburg. With almost 1,100 it is one of the largest institutions in Russia. Until 2010 she had managed her own money, but the institution wanted to control it. They applied to a district court which deprived Ms Delova of her legal capacity. The institution became her guardian and she was not allowed to access her own money. At the district court hearing, psychiatrists testified that Ms Delova was able to manage her money for every-day purposes, but she needed some support for more complex transactions.

“The Constitutional Court has taken an important step in recognising the obvious: that the law should provide alternatives to Irina Delova, as it should to everyone else: stripping personhood and dignity should never be lawful,” said Oliver Lewis, MDAC Executive Director. “We call on the Federal Government and members of the Duma to abolish plenary guardianship altogether, and introduce supported decision-making, in accordance with the UN Convention on the Rights of Persons with Disabilities.”

Full deprivation of legal capacity is the only measure available in Russian law to enable people with disabilities to make decisions. MDAC has been campaigning for reform of the law since launching a report on guardianship and human rights in Russia in 2007. In 2010 the European Court of Human Rights started to chip away at the system in the case of Shtukaturov v. Russia. In a separate case brought on Mr. Shtukaturov’s behalf, the Constitutional Court struck down numerous procedural aspects of Russian guardianship law which were implemented through legislative amendments in 2011. However, until now, the substantive guardianship law had not been judicially criticised.

Ms Delova was represented by Dmitri Bartenev, an attorney practicing in St. Petersburg who is MDAC’s contracted Russian attorney. The case was supported by MDAC as well as the St. Petersburg NGO “Perspektivy” and the Independent Psychiatric Association of Russia.

Commenting on the decision, Dmitri Bartenev said, “This is a historic moment for Russia in combatting the social exclusion of hundreds of thousands of people with disabilities. Depriving someone of their legal capacity is routinely used by family members and local government to then to lock people up in an institution for the rest of their lives.”

MDAC will make the full text of the decision in Russian available on its website as soon as it is available and will post an English translation shortly. MDAC’s litigation in Russia has been supported financially by the Open Society Foundations. MDAC is the only international NGO that challenges these violations, which would otherwise remain hidden. We need your help to continue taking cases such as Ms Delova’s to court, creating a legal deterrent to prevent future abuses of this kind. The change MDAC creates is long-lasting and will ultimately improve the lives of many future generations of people. Your support is needed because, in all cases, the clients who we help have no funds, and legal aid is not available to pay lawyers.

MDAC

The UN Convention on the Rights of Persons with Disabilities (CRPD) was adopted by the UN General Assembly on December 13, 2006, and entered into force on May 3, 2008, after it received its 20th ratification. The Optional Protocol to the Convention went into force on the same day after it received its 10th ratification. The CRPD was signed by President Obama on July 30, 2009. Since it has been sent to the U.S. Senate for ratification by President Obama, the U.S. Senate could vote to ratify this treaty at any time.

CRPD calls for numerous protections for people with disabilities. Many of these protections are included in U.S. law as part of the Americans with Disabilities Act (ADA). However, CRPD also includes numerous provisions drafted by the United Nations which would concern many U.S. citizens. Like the Convention on the Rights of the Child (CRC) and Convention on the Elimination of All Forms of Discrimination Against Women (CEDAW), if ratified, the Convention on the Rights of Persons with Disabilities would become the supreme law of the land under the U.S. Constitution’s Supremacy Clause in Article VI, would trump state laws, and would be used as binding precedent by state and federal judges. Since it is a treaty, the U.S. Constitution requires that it must be ratified by two-thirds of the U.S. senators present at the time of the vote, or 67 senators if all 100 U.S. senators were present.

Here are 10 specific problems I see with the CRPD as written.

1. Any remaining state sovereignty on the issue of disability law will be entirely eliminated by the ratification of this treaty. The rule of international law is that the nation-state that ratifies the treaty has the obligation to ensure compliance. This gives Congress total authority to legislate on all matters regarding disability law—a power that is substantially limited today. Article 4(5) makes this explicit.

2. Article 4(1)(a) demands that all American law on this subject be conformed to the standards of the UN.

3. Article 4(1)(e) remands that “every person, organization, or private enterprise” must eliminate discrimination on the basis of disability. On its face, this means that every home owner would have to make their own home fully accessible to those with disabilities. If the UN wants to make exceptions, perhaps they could. But, on its face this is the meaning of the treaty.

4. Article 4(1)(e) also means that the legal standard for the number of handicapped spaces required for parking at your church will be established by the UN—not your local government or your church.

5. Article 4(2) requires the United States to use its maximum resources for compliance with these standards. The UN has interpreted similar provisions in the UN Convention on the Rights of the Child to criticize nations who spend too much on military issues and not enough on social programs. There is every reason to believe that the UN would interpret these provisions in a similar fashion. The UN believes that it has the power to determine the legitimacy and lawfulness of the budget of the United States to assess compliance with such treaties.

6. Article 6(2) is a backdoor method of requiring the United States to comply with the general provisions of the UN Convention on the Elimination of All Forms of Discrimination against Women. This treaty enshrines abortion rights, homosexual rights, and demands the complete disarmament of all people.

7. Article 7(2) advances the identical standard for the control of children with disabilities as is contained in the UN Convention on the Rights of the Child. This means that the government—acting under UN directives—gets to determine for all children with disabilities what the government thinks is best.

Additionally, under current American law, federal law requires public schools to offer special assistance to children with disabilities. However, no parent is required to accept such assistance. Under this section the government—and not the parent—would have the ultimate authority to determine if a child with special needs will be homeschooled, attend a private school, or be required to accept the program offered by the public school.

8. The United States, as a wealthy nation, would be obligated to fund disability programs in nations that could not afford their own programs under the dictates of Article 4(2). This is what “the framework of international cooperation” means.

9. Article 15’s call for a ban on “inhuman or degrading treatment or punishment” is the exact same language used in the UN CRC which has been authoritatively interpreted to ban any spanking by parents. It should be noted that Article 15 is not limited to persons with disabilities. It says “no one shall be subjected to … inhuman or degrading treatment.” This means that spanking will be banned entirely in the United States.

10. Article 25 on Education does not repeat the parental rights rules of earlier human rights treaties such as the International Covenant on Civil and Political Rights or the International Covenant on Economic, Social, and Cultural Rights. This is an important omission. Coupling this omission with the direct declaration of “the best interest of the child” standard in Article 7(2), this convention is nothing less than the complete eradication of parental rights for the education of children with disabilities.

Michael Farris is the Founder and Chairman of the Home School Legal Defense Association

Editor’s Note – The U.S. Senate Committee on Foreign Relations is scheduled to hold a hearing on the CRPD on July 12, 2012.

Caffeinated Thoughts

The earliest, the 1987 Mental Health Act, predates the discourse on affirmative action for the disabled in India and, to that extent, the status of mental illness as a disability remains ambiguous. Then, there is a separate law that deals with the creation of qualified and trained personnel for the provision of rehabilitation and education services for this segment of the population. The third, the PWD Act of 1995, is underpinned by an emphasis on anti-discrimination and guarantees of equal opportunities. Although the latter was envisaged as a comprehensive law, it did not address fully the conditions of persons with other equally severe disabling conditions. Hence the 1999 Act for people with autism, cerebral palsy, mental retardation and multiple disabilities.

It is hardly surprising that these four laws in themselves have not mitigated the sense of apathy and bureaucratic red tape that hamper the creation of an enabling environment. The mechanisms and procedures involved are riddled with duplication and inconsistencies, as evidenced by the evolving case law over questions of jurisdiction and interpretation of different laws. More than a billion people around the world experience one or another form of disability, according to the World Health Organisation and World Bank 2011 report. On other estimates, about 10 per cent of the population in developing countries is disabled. By any reckoning, India’s numbers would be much larger than what governments are prepared to acknowledge, given the detrimental influences of poverty, illiteracy and poor health on disability. It follows that stepping up investments in health and education is one of the important ways of preventing disabilities and mitigating their impact over the long term.

Requiring service providers to furnish a declaration of conformity with the relevant laws is the other means to ensure accountability and effective enforcement. An umbrella legislation will go a long way in altering the present state of affairs.

The Hindu