Daily Archives: December 3, 2015

Breaking Barriers: Disability & Sexuality


Breaking Barriers: Disability & Sexuality | Leher NGO in India | Child Rights Organization

Shweta Ghosh is the director of AccSex, a pioneering film exploring disability and sexuality. She talks to Leher about her film at length.

#1 How did the idea of exploring disability and sexuality come to you given that it is quite a difficult subject?

It started as idea for my diploma film in college but for some reason other members of my group were not sure about it so I couldn’t make it then. It is my debut film and in fact the idea was always in my head because I have been exposed to these issues in my family itself. My father has a disability related to his arm. And so it was not a new issue for me in that sense. And my mother is non-disabled, I have grown up with most people patting my back and saying, ‘’oh it must be so tough”, “you are so brave”, ‘’beta we are proud of you’’ etc.… Fortunately, my parents raised me and my sibling in a sensitive and informed way. They both work in the social sector so we had a lot of open conversations, and just growing up with such great parents sensitised me to this subject much more than a child with say ‘normal’ parents. It was in fact my mother who suggested that I should explore issues around disability and then I thought of looking into how people with disabilities treat the subject of sexuality.

#2 How big a taboo is sex and sexuality among people with disabilities and how do normal people perceive it?

To begin with it was a revelation even for me. During the making of the film I realised that I was looking at sex in isolation when it clearly isn’t the case. Sex means different thing for different people. I realised that non-disabled people like you and me have many avenues, places to seek partners. Disabled people on the other hand have very few options to seek partners or even interact with people outside their immediate circle of friends and family. You go to malls, coffee shops, college, parks, movies and many other places, you meet people and then you may or may not find a partner but is it the same with people with disabilities? What are ways of finding a partner for them?

As a child, one wonders how do people with disabilities have relationships, is it just like ‘normal’ people or is it different, how do they have intercourse, and during the making of the film I realised that sex and sexuality is as much a taboo for disabled people as it is for non-disabled people. The difference is that with a lot of disabled people sex is often about violence and not desire. A lot of normal people hold the view that, how can they even desire for something like sex? It’s a misconception because disability is a spectrum and not all disabilities are debilitating when it comes to reproductive rights. We need to understand that and encourage and support reproductive rights for people with disabilities.

#3 Coming back to your film, do you think it has been received well?

What I like the most is that small organisations and groups are doing screenings of the film with not so large groups, the film is there to be shared and I think it is happening in an organic way which makes me really happy. Besides, it has been to many festivals and was also made a special mention of in the National Film awards in 2014.

# 4 Anything during the making of the film that has stayed with you?

There are many things but I remember this one incident as a learning. Even though I am sensitive to disabilities and I was making a film on it, I realised that’s easy to overlook the nuances related to disabilities. So, one of the people featured in the film has a disability that doesn’t let her take the stairs, and we were shooting a sequence which I thought could be shot at my place. So, invited all the people who were needed for that shoot to my place which in a multi-storey building. What I didn’t realise was that my building didn’t have an elevator, I felt really stupid because it caused a lot of inconvenience and I felt I should have remembered that fact.

Another incident was during the shooting the last sequence of the film. It involved the main characters interpreting the word ‘sexy’. And it was quite remarkable that all of them interpreted that word in different ways just like the so called normal people. Basically as a filmmaker I realised that your assumptions are often challenged and you should be open to accept them.

# 5 Do you plan to remain engaged with this subject as a filmmaker?

I am working on my 3rd film now and I am also applying for a PHD. My subject is on disability and engaging with people with disabilities in order to finally work towards creating a facilitating atmosphere for filmmakers with disabilities. I hope to get both disabled and non-disabled filmmakers to collaborate to make films.

# 6 Finally, do you think attitudes towards people with disabilities are changing very slowly?

See, no change happens overnight or in a short time. As people striving for positive social transformation we have to continue our efforts and believe that change is happening, and it happening according to me. Gradually but it is happening. Today what is needed is more, much more communication between disabled and non-disabled people. There is often this mysterious silence between disabled and non-disabled people. Somehow it doesn’t go beyond pity, sympathy or apathy.

I believe it is incumbent on both non-disabled as well as disabled people to make each other comfortable. The government needs to create spaces where disabled and non-disabled can mingle with each other. And yes, of course everybody should have some basic sensitivity towards people with disabilities. And then when you ask honest questions, people with disabilities would be able to interact as ‘normally’ as possible.

# 7 What according to you are some steps that will ensure this attitudinal change starts with children?

Education! Of course that is the one way we can ensure that future generations are better sensitised and understanding. Today, in schools, either disabled children don’t get admission or they are thoroughly misunderstood, discriminated and made to feel inadequate. If we start with a more disabled-friendly curriculum, sensitive teachers and appropriate infrastructure there is no reason why we won’t see a more disabled-inclusive and friendly India.

A day in the life of Saurabh

Meet Saurabh. A history buff, idli-dosa addict, and the acclaimed student of the year. When you meet Saurabh you might be fooled by his introverted and polite disposition, but rumour has it that in the company of Mohammed and Santosh, he is a humour junkie. Devyani Ma’am has many a complaint about Saurabh’s changing attitude as he grows into a fine young man, doused in pride as she nurtures him into the next year at school. Here’s what Saurabh’s day looks like at his school:


A Day in the Life of Saurabh | Leher NGO in India | Child Rights Organization

6 AM

His day starts when the sun rises. 30 minutes of Suryanamakskar, followed by pull ups and yoga aasana’s taught by his teacher. Saurabh is punctual and particular about his exercise routine, always watchful of his health. He then goes on to assist Akit, his 14 year old friend, who needs help in taking a shower. Saurabh helps by ‘prompting’ him, to take care of himself, yet, patiently hand holding him through daily morning activities.

8.00 AM

Right after his exercise routine, Saurabh heads for a shower. He loves a full bodied soap with a strong scent.

8.30 AM

As a senior student, Saurabh has responsibilities towards his younger hostel mates. Helping Rohit with his breakfast is part of his hostel duty. The system is such that children learn and respond more to peers than teachers, therefore, helping the younger children is what he does dutifully. Additionally, he assists the hostel staff in their tasks too.

Saurabh usually joins Sanyog and Durgesh for breakfast, once the the younger students are done with breakfast. His vegetarian diet includes Idli, bata vada, sheera or poha every morning—- which he loves!

9.15 AM

All the students trickle into the foyer from the breakfast hall. The school day begins with singing ‘Jana gana mana’ and ‘Tum hi ho mata pita tumhi ho’. Saurabh sings with the same enthusiam everyday!


9.30 AM

Class begins. The day is packed with back to back classes—Social Science, Math, History, Geography, Marathi, Computers, Type writing, Yoga, Art & Craft, Home Science amongst others. In Home Science lab, Saurabh experiments with different salads and sandwiches. He also tries his hand at his mom’s recipes of dal and rice. The timetable changes everyday.

History is Saurabh’s favourite subject. He loves discussions around the story of India’s independence. Freedom fighters like Gandhiji, Lokmanya Tilak, Nehru, Babasaheb Ambedkar inspire him.

A Day in the Life of Saurabh | Leher NGO in India | Child Rights Organization
A Day in the Life of Saurabh | Leher NGO in India | Child Rights Organization

1.00 PM

The bell rings. Lunch is finally here after a morning packed with classes. Saurabh, along with his friends goes to the Dining Hall, a short walk from class. Fresh veggies, dal, roti and salad make for his staple diet. Occasionally, noodles are served for lunch- his favourite! And you will seldom catch him eating anything extra.


2.00 PM

Post-lunch class for the day is Marathi. Mohammed is his class partner for this subject. Mohammed and Saurabh have been good friends ever since they joined school 7 years back. They sit and chatter, laugh and gossip in class with their friend Sanyog.


2.30 PM

Deyani Ma’am stomps into class, an unusual behaviour for the generally cheerful teacher.. She reprimands Saurabh, furious at being alerted by the hostel staff that Saurabh had been bitten by a rat 2 days back! As per protocol he was to inform her about the same. However, he chose to ignore the incident as somewhat trivial and got the hostel staff to get him medicines. Devyani Ma’am is upset that Saurabh hadn’t shared this with her. Lately she has been feeling that Saurabh is developing ‘an attitude’, refusing to confer, confident in his own decisions . Perhaps, it is an adolescent thing she comforts herself… Saurabh cries – angry & hurt at being scolded. 5 minutes later, he went about his regular things.



3.00 PM

Under ideal circumstances, Saurabh would go to the pool and take a few laps. But in the last year, due to his ear problem, the doctor has advised him not to do so. Instead, he spends quality time working out at the gym.


4.00 PM

Saurabh goes back to class and finishes off last minute class work, before he neatly arranges his desk and gets ready to leave. Chitter chatter is heard in the corridors of the hallway as all the children step out of class and walk towards their dorm rooms.


6.00 PM

Evenings make for chill time. It’s when all students and staff get together- like late evening family time. Sometimes, Saurabh steps out of school too. Or, he watches TV- mostly when Sachin Tendulkar is playing.

7.00 PM

Early dinner is the norm at school and Saurabh loves the routine. It ensures he eats early and stays fit.

9.00 PM

The day ends with finishing pending homework. Saurabh loves reading and spends some alone time with his books.



10.00 PM Lights off.

Saurabh comes from the rural district of Sangli in Maharashtra. He was born deaf and over the years his vision started deteriorating too. 7 years ago, his parents heard of the Helen Kellar institute for the Deaf and Deafblind and were instantly convinced to send him to a place that would nurture him, mould him and equip him to have an equal standing in the world.


The transition from being Deaf to Deafblind wasn’t easy. It came with the need to understand, learn and adapt new skills. Today, after years of living amongst loving teachers, having access to a customised curriculum and living in an enabling environment, Saurabh has come a long way. He communicates fluently through tactile sign language, uses braille to write letters to his family, understands familiar words, recognises people by their silhouette and smell, travels across Mumbai himself and most importantly he dreams of what he shall grow up to be.

Saurabh aspires to take his HSC exam within the next 4 years, return home, open a grocery shop in his village, support his family, marry and live life to the fullest …his face towards the sunshine and shadows behind him.

A Day in the Life of Saurabh | Leher NGO in India | Child Rights Organization
A Day in the Life of Saurabh | Leher NGO in India | Child Rights Organization


Kalpana – Child Protection against Diseases | Leher NGO in India | Child Rights Organization

Till about 15 years ago, Devagram village was known for its delicious apples. The famous Kalpeshwar temple is a 30 minute trek from there. Here in the notoriously remote Urgam valley, nature has not left much for imagination, the place is, as they say ‘picture perfect’, with a gushing river, stepped valley, low hanging clouds and not so distant snow- capped mountains. People in this valley depend on agriculture and the prized Keedajadi for making a living. The place makes you feel serene, and hopeful. It infuses you with extraordinary joy.

Urgam valley is idyllic and amidst this paradise we met Kalpana, a gritty and intelligent 11-year-old girl. Kalpana Singh Negi didn’t see the fury of the Uttarakhand tsunami with her own eyes. She couldn’t because she is permanently blind. I met her at her home in Devgram village after it took me and my colleagues nearly 2 hours of driving on dangerous kutcha roads and another 45 minutes of walking on a narrow foot-trail to reach her home. Devagram is located in the picturesque but notoriously remote Urgam valley.

When Kalpana was 9 years old she complained of severe headache which didn’t abate even after 6 days. Her father who had then recently remarried took her to Srinagar for treatment in a private hospital. Arvind Negi, Kalpaná’s uncle told me that, “Doctors in Srinagar could not diagnose her illness properly and we wasted crucial time there. By the time we took her to Dehradun, Kalpana could not see and was in excruciating pain.She would cry all the time. We decided to take her to the Himalayan Institute of Medical Science in Dehradun, the doctors there diagnosed her with Tuberculous meningitis and declared her permanently blind”. This was in 2012. Since then, little Kalpana has become used to living without eyesight. When I ask her questions like, “Do you feel bad that you cannot read and write anymore?”, she grits her teeth in irritation and tersely says, “Jee, I feel bad”. I ask her another insensitive and avoidable question.“Which grade were you in when you stopped going to school?” She ignores me completely this time, and starts playing with her cousin Kanishka whom she adores a lot. Her silence wakes me out of my nonchalance.

Cradling Kanishka in her arms, she starts walking away from us. I call her and introduce myself as Daku Singh (Daku means dacoit in Hindi) –with a big beard, she smiles and stops. I am encouraged. I ask her if she would like to listen to some songs on my phone. Upbeat already, she tells me to play a recent Bollywood number- “Tu ne maari entry yaar, dil mein baji ghantiyaan”- this time, it’s me who can’t stop grinning. The ice is broken. I tell her I don’t have that song but there are several others. I feel humbled by how little Kalpana is trying to make me feel more comfortable.

Kanishka loves that ‘entry’ song”, she tells me and carries off the phone and her baby cousin towards the little garden in front of their house.

Kalpana – Child Protection against Diseases | Leher NGO in India | Child Rights Organization

Tuberculous meningitis starts with nonspecific symptoms and is often only diagnosed when brain damage has already occurred. But if diagnosed in time the damage to the body and sensory organs can be mitigated if not prevented. In Kalpana’s case, the diagnosis was both wrong and delayed for which she paid with her eyesight. Save the Children, an NGO working for children met Kalpana in the
aftermath of the 2013 Himalayan Tsunami. The NGO helped her grandfather take Kalpana to All India Institute of Medical Sciences in Delhi. The doctors in AIIMS also confirmed that Kalpana cannot see ever again. Kalpana had tried attending her village school which she had stopped going to because of her illness. She found it easy to navigate the broken and steep foot trails to reach the school with other children but once in school, she faced many difficulties. Like in most schools in India, the infrastructure to cater to the needs of children with special needs is abysmal in Uttarakhand as well.

In Uttarakhand, this situation is worsened by the difficult terrain as most villages are on mountains and accessible only on foot. When Kalpana had strived to continue studying with her friends despite complete loss of vision she had displayed immense will to study, but within a few months, she herself stopped going to school because the teachers were not trained to help children like her, there was sympathy but no special materials like Braille-aids to help her continue her education.

It is ironic and indescribably sad that Kalpana has been out-of-school despite being a bright kid who craves to go to school and study. The 2012-13 NCERT study on children with disabilities had revealed that while 99 per cent of these children liked attending regular schools but 57 per cent of teachers were not trained to understand their special needs.

Last June’s floods caused extensive damage to houses and washed away many fertile fields leaving the people who live in this valley cut-off from the rest of the world for almost a year. Although indirectly, since Kalpana was already declared permanently blind by doctors, poor access to already abysmal health services, did have an adverse impact on her medical treatment.

Road connectivity to Urgam valley has been restored only two months ago and it remains at the mercy of good weather. Till May this year, the only way to reach Kalpana’s village was to trek for 14 kms on a narrow mud trail. In the last one year the government has managed to build new patches of roads and clear the massive boulders that came tumbling down mountains slopes. But life remains a weary challenge for the people of her village and other communities living in Urgam valley.

For little Kalpana, life has thrown a challenge much bigger than floods. But she tells me as I say goodbye, “I am okay, don’t worry about me”. I shake her hand, mumble something half-funny and leave thinking I can’t even imagine what she goes through and yet shows so much strength and resolve. “I am sure you will be more than okay Kalpana”. (Kalpana means imagination in Hindi).

Kalpana – Child Protection against Diseases | Leher NGO in India | Child Rights Organization