Law and behold, a blind lawyer!

Henna Achhpal

“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

Avelino de Sa: Supporting Others Step Out of the Shadow

Sheela Jaywant

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

Call him RJ Wordsworth

James Roy

“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

Language that leaves you speechless

by Malay Desai

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

Keen and able

Malay Desai

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

Visually challenged boy pens novel

Inspired by author J.K. Rowling’s Harry Potter series, a visually challenged 18-year-old from a farmer’s family in Gokavaram of East Godavari district, has spent seven years of his life writing Pharaoh and the King, a story based on Indian and Egyptian mythology.

Viswanath Venkat Dasari, a second year student of the Rajiv Gandhi University of Knowledge Technologies, Nuziveedu, suffers from Nystagmus and Photophobia — his eyes cannot focus clearly on any object for more than a second.

INSPIRED

Ever since Ms. Rowling’s 5 edition of Harry Potter and the Order of the Phoenix hit the stores, Venkat began to weave a tale around the mythological stories he had heard during his childhood from his mother Satya, father Radhakrishna and grandfather, J. Harinath Babu.

As Telugu had been his medium of instruction, he took the help of his English teacher, K.V. Buchibapanna, and others, for proof-reading and corrections. He initially wrote by hand, and later, started using MAGIc, a screen-enlargement software, given to him by the L.V. Prasad Eye Institute in Hyderabad, and began keying the story of Pharoah and the King.

MULTIPLE THEMES

The 276-page book, set in the backdrop of Delhi, London, Cairo and Giza, tells the story of a man who saves the world from evil. It takes the reader back in time to an ancient civilisation full of mystery, adventure, menace, righteousness, the supernatural and occult culture. The story revolves around a mystical being, Vivékadeva, who is set up against a villain who robs ancient treasures from around the world and wants to misuse Cosmic energy drawn from the Pyramids.

VICTORIOUS HERO

The hero has been an atheist ever since he lost his beloved ones. But his experiences take him on the path of self-realisation. The bad guy tries to deceive the hero, giving him the hope that he can find his beloved ones if he will help him in his quest for spiritual riches. But, with the help of a younger brother, the villain is defied and Vivékadeva saves the world.

Venkat took help from his younger sister, Sija, in writing the script.

The book was published by AuthorHouse, U.K. Priced at $19.95, the book was released in the United States and the United Kingdom.

The Hindu

What Women Want: The ability debates

DEEPA ALEXANDER

The triumphs and disasters of the differently-abled in India are two ends of the spectrum. Among the 70 million disabled in our country are those who have conquered peaks, won gold at the Paralympics, and raced in Himalayan and desert car rallies. But, millions more struggle to meet daily challenges in a society that tends to portray the disabled  as either heroes or victims with little or no access to their rightful resources. The proposed amendments to the Copyright Act (1957) are seen as restrictive and discriminatory, as the copyright exception, which aims at allowing persons with disability easy access to copyrighted material, applies only to certain types of disability. We spoke to activists who address these issues, not as charity or welfare but as matters of development and dignity.

Change in attitude

National Trust’s programmes work on building capacity, changing patronising attitudes, building trust in the abilities of people with developmental disability and creating an equal playing field. Unfortunately, deeply entrenched attitudes  continue to exclude people with disabilities. Even if an opportunity is given, it is given only once; if a person with  disability fails, incapacity is assumed. But, in the recent case of a young woman with intellectual disability who had been raped in a women’s home, the Supreme Court upheld her right to ‘choose’ to keep her baby, and she has proved to be a competent mother. However, the disapproval of the intelligentsia in the media is an indicator of the social prejudices people with disabilities have to live with.

Implement their rights

Ability Foundation’s thrust is on creating an equitable society. Through our magazine Success & Ability, we spread this message at a time when service to the disabled was seen only at the physical, and not at the emotional level. Persons with disabilities need access to inclusive education, employment and public places. Being ‘accounted’ in the Census 2011 will open up a plethora of possibilities. Accurate data will enable Government intervention at various levels, leading to proactive action. We need ramps for wheelchair users, audio announcements in bus / train stations for the visually-impaired, and video announcements for the hearing-impaired. Floor numbers in Braille for lifts, sign language interpreters in every hospital, police station and court of law, slip-proof flooring in malls, and large-print books in public libraries for those with low vision are the other needs. The implementation of the rights of persons with disabilities as per the United Nations convention and the Persons with Disabilities Act (PWD), in letter and spirit, is also essential.

A development issue

My daughter Tamana was born with cerebral palsy. It pushed me to found an organisation in 1984 to fulfil the dreams of children with special needs and those of their parents. Therapy and counselling for children and their families is essential for optimum adult rehabilitation. Since Independence, the disabled have been categorised along with sections such as women, Scheduled Castes and Scheduled Tribes. While these have had powerful political lobbies, there has been no spokesperson for the disabled. The dichotomies between the Ministries of Education and Social Justice further worsen the exclusion. Most policy-makers look at disability as a welfare, not a development issue. Disability should be jointly addressed by the Ministries of Health, Women and Child Development, HRD, Social Justice and Empowerment. The definition of disability in the PWD Act does not include autism, which leaves out nearly two million autistic persons in India. Admitting disabled children in normal schools is not enough — you need to have professionally trained staff, who are sensitised. I also hope for a different curriculum for special children, even as they are being integrated in the mainstream. Better pay scales will also bring in more jobs in the disability sector.

Public-private partnership

NGO-run establishments provide free schooling for disabled children. The Government has provided legislative intent  through the Inclusive Education Act, which makes it mandatory to include all kinds of impaired children. However,  Government schools that cater to the poor are generally marked by grossly inadequate infrastructure and teaching  aids, so imagine the predicament of the disabled. I would like a public-private partnership for day-care and residential  institutions which provide educational and recreational service on a long-term basis. This needs to be supported by   research institutions which focus on technology, communication and teaching aids. We need to benefit from global  expertise, and customise them to local needs. As Childline’s primary mandate is child protection, I feel that the  Government must compulsorily provide for a child protection policy in any institution that deals with disabled children, as, such children are more vulnerable to abuse.

The copyright angle

The Centre for Internet and Society is associated with the copyright amendment movement for persons with  disabilities, and is one of the founding organisations for the Indian Right to Read campaign. At present, the proposed copyright amendment is detrimental to the disability sector’s needs. The exception extends only to ‘specially designed’ formats such as Braille and sign language, and does not benefit the millions who have cerebral palsy, dyslexia and low vision, and the visually-impaired persons who do not know Braille. Such persons require audio, reading material with large fonts and electronic texts, which are not ‘specially designed’ formats. For conversion to non-specialised formats, the amendment proposes a licensing system, which will permit only organisations working for the benefit of the disabled to undertake conversion and distribution. This will prevent educational institutions, SHGs, other NGOs and print-disabled individuals from undertaking conversion. The licensing system will also require approaching the Copyright Board for each work, which will be extremely time-consuming. The waiting period for obtaining permissions and subsequent conversion will result in students losing academic years, a violation of their right to education. The  proposed amendment violates the Constitutional guarantee of equality under Article 14 since it discriminates between  those visually-impaired persons who know Braille and those print-disabled persons who do not. It is important for the  nation as a whole to take the concern of persons with disabilities as a mainstream concern.

The Hindu

Telework firm urges federal training on hiring disabled workers

By Ed O’Keefe

Almost half of human resources officials responsible for hiring and retaining federal workers say they have not received adequate training on how to manage and retain employees with severe disabilities, according to the results of a survey by the Telework Exchange and the Federal Managers Association set for release Monday. Many are also unfamiliar with mandates designed to promote the hiring of disabled applicants and hiring rules that allow for the noncompetitive hiring of disabled people. Though 71 percent of the respondents said their agencies are committed to hiring disabled workers, 40 percent said they have not received adequate training to effectively manage disabled employees, according to the survey. The Telework Exchange, continuing its push for advancing teleworking, and the Federal Managers Association partnered on the study in advance of a conference set for next week that will press the Obama administration on the teleworking option for federal workers. “Telework is certainly one way that would allow many people with disabilities to utilize their talents on behalf of the government, while overcoming barriers that may keep them out of the workplace,” said Todd Wells, executive director of the Federal Managers Association.

The survey also noted that 45 percent of federal hiring managers surveyed said they have not received adequate training on retaining disabled employees. The voluntary online survey of 513 federal hiring officers from across the government was taken between Jan. 25 and Feb. 5, roughly a month before the Office of Personnel Management held a training session for more than 600 federal hiring managers about hiring and retaining disabled workers. During the session OPM unveiled a new online training tool for hiring officials that instructs them on how to use Schedule A, a noncompetitive hiring waiver that permits agencies to hire severely disabled individuals, an OPM spokesman said. The agency is developing a similar training tool for disabled applicants wishing to be hired under the waiver. “We are working diligently to attract and hire individuals with disabilities,” OPM spokesman Edmund Byrnes said in a statement.

OPM and the Labor Department’s Office of Disability Policy also will hold a hiring fair on April 26 at the Washington Convention Center. More than 70 agencies with job openings have been invited to search a database with more than 4,000 resumes of disabled applicants. Agencies are encouraged to schedule interviews with disabled applicants at the April event, OPM said. A House committee last week approved a bill that would require the federal government to develop plans to expand the policy across the federal workforce. Agencies would be required to hire a telework managing officer, responsible for overseeing implementation of the policy. By the end of fiscal 2011 OPM Director John Berry, a teleworking advocate, hopes to double the number of teleworkers from the 102,900 of fiscal year 2009. The White House said Kareem Dale, President Obama’s special assistant on disability policy, will address the survey’s findings at next week’s conference.

Washington Post Sunday, March 28, 2010; 9:17 PM

Student Forum Reclaims Radical Disability Studies

By Miriam Berger, Assistant Features Editor

At a University where classes such as “Gender in a Transnational Perspective” and “Ethnographic Approaches to Queer Studies” have moved towards the mainstream, Allegra Stout ’12 nevertheless felt that something was missing.  “I’ve been interested in disability studies for a long time,” Stout said. “A lot of classes have disability as a side note, but I wanted a more focused way to look at it.”  Disability studies—an inter-disciplinary field that approaches disability as a key aspect of human experience and identity with important political, social and economic implications—will now be redeemed from its sidebar status in a new student forum led by Stout, as well as Ariel Schwartz ’12, and Meredith Holmes ’10, that meets Thursdays from 1:10 p.m. to 4 p.m.  “We are going to look at disabilities the way that everyone looks at race and gender,” Stout said. “The forum will study people with disabilities as a marginalized oppressed group and seek to create social theories about that experience.”  The Americans with Disabilities Act (ADA) of 1990 defines a disability as a “physical or mental impairment that substantially limits one or more of the major life activities of such individual.”  Under the ADA, Americans with disabilities are afforded similar protections against discrimination as the Civil Rights Acts of 1964.  According to Schwartz, disability studies have developed over the last few decades as a more theoretical approach to embodiment and the experience of having a disability.  “When you volunteer for the special Olympics, it’s not the same as looking at the issue from a social science, oppression based way,” Schwartz said.

The discussion-based forum, which requires about sixty to eighty pages of reading a week, is intentionally flexible to accommodate different learning styles and creative pursuits. Each of the eight participants is required to lead one class, submit several papers, and complete a final project.  One component of the discipline is the social model theory of disability.  “The idea is that instead of the traditional medical view of disability in which there is something internally wrong with a person, the social model locates a person in the interaction between him or herself and a society that isn’t set up for them,” Schwartz said. “It’s not that your leg is broken, but that society is disabling you.”  “Crip theory,” another element of disability studies, was developed in connection with queer theory and addresses the oppressive normalizing forces of society that shape the experience of disabled embodiment.  According to Sheila Mullens, Visiting Instructor in American Sign Language, this forum is part of a wider academic movement.  “There is such a need in advocacy, law, and education for an approach like this,” said Mullens, who incorporates lessons on deaf issues into her second year sign language course. “I think that this is a wonderful beginning. It is an important part of the community.”  Across the country, institutions such as Teachers College of Columbia University, University of California at Berkeley, and Temple University, have all instituted disabilities studies programs on both the undergraduate and graduate level.

Schwartz urged Wesleyan to consider taking a similar path.  “There are a lot of classes that deal with disabilities tangentially,” Schwartz said, noting in particular American Sign Language, Psychotherapy Pathology, Ethics of Embodiment, and the Psychology of Gender. “I easily counted 10 classes that could fit under a disability class course structure.”  Stout has a similar aspiration.  “In the same way that a few decades ago women studies and female, gender, and sexuality studies (FGSS) didn’t exist, disability studies are a new, rapidly growing discipline.” Stout said. “I hope that this student forum will lead to interest in more professors and classes specializing in this field.”  Such was the case for Emily Wenzel ’10, who had no prior exposure to these theories before hearing from Holmes about the forum.  “I think that it’s interesting to look at, or attempt to look at, these experiences through someone else’s perceptive who deals with these considerations everyday,” Wenzel said.  Wenzel, whose brother was disabled in an accident, found the open environment of the forum ideal for discussing topics, such as the appropriate terms to use for identification, often hesitantly approached in other courses. For Crystal Abbott ’10 this forum provided the opportunity to build upon previous activism.

“I’ve been involved in the autistic community for some time,” said Abbott, who is autistic. “Disability activism is something that I intend to be involved with all of my life. I see this forum as a resource for me to get a deeper academic knowledge about disability activism and history.”  Stout originally presented the idea for the forum during a meeting of Wesleyan Students for Disabilities Rights, a group that she founded last fall as a freshman. Stout, Schwartz, and Holmes all attributed their interest in this field to personal influences, such as the experience of a family member with a disability or positive volunteer encounters.  Stout, however, stressed that disability studies is not an all-encompassing term.  “Disability studies does not include everything that deals with disabilities,” Stout said. “It is opposed to some approaches to disabilities, such as organizations, medical practices, and charities that evoke pity.”  She echoed Schwartz’s sentiments that volunteering should not merely be about the volunteer helping the person with disabilities, but rather should accentuate the strengths of both parties in order for each individual to gain from the perspective of the other.

While the forum’s facilitators lauded the University’s attempts to increase the accessibility of campus, such as the recent wheel chair ramp installed at 200 Church, they noted that a wider campus awareness of these issues is still needed.  “Accessibility isn’t just about ramps,” Schwartz said. “It’s about lighting, about the way people teach, and a million other everyday things.”

Wesleyan Students for Disability Rights meets on Mondays at 8:30 p.m. in Usdan 114. Students can contact Allegra Stout (astout@wesleyan.edu) for more information on the forum or about the group’s campus work.

U.S. issues positive statement at W.I.P.O.

D.N.I.S. News Network, India: Inan interview with D.N.I.S.in one of its previous issues, Dr. Francis Gurry, Director General,World International Property Organization (W.I.P.O.) had said, “UnitedStates is not opposed to the idea (The Treaty for the Blind, VisuallyImpaired and Other Reading Disabled Persons, as proposed by the WorldBlind Union) but needs more time to get comfortable with it.”

Close on this comment, and in what canbe seen as a significantshift from its past position, the United States has expressed itswillingness to consider a treaty on limitations and exceptions tocopyright for the benefit of visually impaired people and other readingdisabled persons. Even though it has not supported the treaty outright,nevertheless, their statement can be seen as a major and positiveadvance in its policy position.

Visually impaired persons world overface an acute shortage ofprinted material. Presently the copyright law of many countriesrestricts them from accessing works under copyright. Only 5 percent ofall printed material is available in accessible formats to blindpersons. This percentage too is for developed countries. The situationgets worse in developing countries. The percentage in India forinstance is a miniscule 0.5 percent!

DNIS

User Interface is the theme for Techshare 2010

D.N.I.S. News Network, India: If electronic accessibility isa concept that is new to India, user interface is a concept which isunheard of. The scenario looks likely to change with Techshare 2010deciding to keep the theme centred on ‘User Interface’. The two-dayconference cum exhibition will be held on February 15 and 16, 2010 inNew Delhi and will have international delegates speaking on userinterface of different technologies such as websites, mobiles, kiosks,A.T.M.s. etc.

User interface varies from one person to another depending upon thedisability of the person. For example, the user interface of an A.T.M.for a visually impaired person should give a sound output. For ahearing impaired person, if there is an error and the A.T.M. machinegives a beep, it should also be written on the screen as ‘errorencountered’.

The conference cum exhibition will display international work,products and research from the digital assistive technology industry.The ‘Experience Zone’ at Techshare India 2010 will provide anopportunity to not only see but experience different assistive devicesand technologies that will be demonstrated by people with disabilities.

Techshare India is an international conference aiming to provide anopportunity to the government, corporates, N.G.O.s., educators anddisabled people to bridge barriers with an inclusive perspective. Themain objectives of the conference are to accelerate consciousness aboutaccessibility, offering a platform for knowledge sharing and to extendthe use of assistive technology.

To register for Techshare India 2010 and for further details, pleaseclick on the logo below:

DNIS

Right to Read

NDTV Hindu was on top of every related development in Chennai and in our primetime show Night Vision.  The anchors Jennifer Arul and Saptarshi Bhattacharya also spoke to Nirmita Narsimhan, Programme Head, Right to Read, and Rahul Cherian, Copyrights Lawyer, on their campaign to amend Copyrights laws to make available reading material for the visually challenged.