Saturday, October 15, 2011

“Visual impairment has nothing to do with fulfilling one’s dreams,” says Esther Sylvester

Independent filmmaking is a great challenge, especially when it is on a subject like disability! Recreating two different worlds real and virtual of a person with visual impairment and giving life to his story on screen is definitely a brainstorming task. In an interview with freelance journalist Anika Sharma, Esther Sylvester, an independent filmmaker from Allahabad, talks about her uncompromising passion for cinema and music, her recent project Blind Vision and what disability means to her.

Anika Sharma: How did you get interested in filmmaking?

Esther Sylvester: “Destiny is no matter of chance. It is a matter of choice: It is not a thing to be waited for, it's a thing to be achieved.” - William Jennings Bryan.

This is one of my favourite quotes and one I live by. If you want something really badly in life, you will get it as long as you don’t give up and follow that road which leads to it. Filmmaking is one of the best ways to establish a connect with a lot of people as the medium is audio-visual and the language of cinema is universal. As long as I can remember, I loved cinema. All I needed to be happy was a bunch of films and that was my world. I grew up on the classics, old black and white films like Casablanca, Ben Hur, Lawrence of Arabia, Sound of Music, The Great Escape to name a few, which may have been heavy for a child of nine or ten, but for me they created a new world. At that age, I never knew who is a director or producer, all I knew was I want to grow up and create a new world on screen and tell stories that have never been told before.

Anika Sharma: How did the idea for your film Blind Vision originate?

Esther Sylvester: Blind Vision is a film which came about when I met and learnt about the life of Manish, our case study in the film. I always use to think what role can sound and touch play in someone’s life, who could once see dreams and understand his dreaming patterns. Manish took me on a journey into his world of dreams and through dreams and reality his life’s story is pieced together in Blind Vision.

Anika Sharma: Was it difficult to direct a film on the story of a person with visual impairment?

Esther Sylvester: The job of a good director and a good film team is to recreate anything on screen and a person’s visual impairment does not make it difficult. On the contrary, it gives an opportunity to think and work out of the box, increasing the level of creativity. A good story is everything. The challenge of every independent filmmaker is to move away from convention and tell a story that’s unique. A good budget opens endless possibilities in enhancing the recreation of the story, of which we did not have liberty to. This was the only difficulty we faced, but nevertheless, achieved a positive outcome. Moreover, I wanted to tell a story that could bring meaning to someone’s life. I wanted to make Blind Vision to share something – to let other people see what a blind person sees and most importantly, feel what a person with disability feels.

Anika Sharma: Can you share a behind-the-scenes anecdote from its filming?

Esther Sylvester: This was a tragedy averted but it now is an anecdote for the entire team of the film and something that we look back and laugh upon. On the Greater Noida Highway, there were two cars, one in which the Director of Photography (D.O.P.) was filming and the other in which the sound guys were following. All of a sudden while filming, the D.O.P. felt a change in the level of light and an intense heat. The light burst inside the car and almost set his hair on fire. All of us rushed outside the car. It was a horrifying experience but these things happen at times in filming. Thank God, we were saved and the scene was shot because we were no way going to try it again, at least for that night.

Anika Sharma: What was it about Manish’s story that attracted you the most?

Esther Sylvester: Manish’s story is enduring and it is a story which needed to be told. I hope to raise enough funds one day to tell his entire life story to the world. Here is a boy who lost everything in his life including his eye sight. He is an ordinary person like you and me, no different. But the only difference between Manish and someone like me would be that he has extraordinary courage to move on in life, rise above the obstacles which life has thrown at him and move on to fulfill his dreams. Yes, he goes through times of depression and loneliness but still rises above all that and follows the ray of light in his dark world, something that we are unable to see with everything we have.

Anika Sharma: Your film shows a pattern of dreams of a person with visual impairment. How difficult was it to understand those dream patterns, sequencing two (virtual and real) different worlds, in case of a blind person?

Esther Sylvester: It was not difficult for me to understand his dreaming patterns. The main challenge was to make a film that could be understood on screen by someone who is visually impaired and someone who is not. The narration and dialogues of the film have been written keeping its relationship to both in mind.

Anika Sharma: What distinguishes Blind Vision from other short films or documentaries? What message are you intending to spread through your film?

Esther Sylvester: Blind Vision is a short film about the story of a real man and his real dreams. The story has been recreated in fiction yet everything about it is factual. The film pieces together Manish’s dreams which lead to his ultimate dream in life. The message of the film is simple: “visual impairment has nothing to do with fulfilling one’s dreams”.

Anika Sharma: How did you choose your actors, cast and crew?

Esther Sylvester: Making an independent film is an incredibly challenging undertaking. The actors and crew of Blind Vision were friends and family who came together to make the film. People with the same vision working together is what made it possible to bring to life.

Anika Sharma: Tell us about your experience making Blind Vision.

Esther Sylvester: As I said earlier, a good budget opens endless possibilities in enhancing the recreation of the story of which we did not have liberty to and that was the only challenge we faced. But we overcame that with the help of a dedicated crew and have made a film which we are proud of. The experience was a valuable one for people both behind and in front of the camera.

Anika Sharma: What about your film’s distribution? How are you planning to promote it?

Esther Sylvester: The film will be taken to the festival circuit in India and abroad. Hopefully then, we would try finding a buyer in the U.S., to pick it up and then distribute it or do a commercial screening abroad, because this sensibility and format of a docu-feature isn't what India and Indian cinema industry is used to. So, it’s fruitless to even think of that route here. However, people in Hollywood who I am connected with have shown interest and they shall be instrumental in this film being shown to the right audience and spaces too. More information on my film Blind Vision, its release and a short promo can be accessed at http://blindvisionthefilm.blogspot.com/.

Anika Sharma: What is your idea of 'inclusive cinema'? Any message for the disability sector?

Esther Sylvester: For me, inclusive cinema means making films that are 'inclusive' in every sense. That is, films that can be seen and understood by both a person with disability and without disability. Cinema is a great medium of communication. For those with a disability of sight the sounds and description help create and weave a story, which would give them an escape from their normal life too. For those with sound impairment the tool of subtitles and the motion picture on screen helps transport and keep the person engaged and the meaning of the film intact. So, all in all, cinema incorporates life, sound, colour, people, stories, music et all… and above all, has no boundaries or limitations. However, I can never fully understand what a person with disability goes through, but I would like to thank Manish for trusting me with his story and allowing me to recreate it on screen. I hope that I would be successful in doing justice to a story of a person with visual impairment and make many more films like ‘Blind Vision’ to share a message that – disability is not an obstacle for anyone and one must pursue one’s dreams by moving ahead with courage.

Links:

http://www.youtube.com/watch?v=SBotwo3L8BM


Interview

‘Persons with Down’s syndrome not getting proper treatment as human beings’

A well-known face in the Indian medical and disability fraternity, winner of the ‘Bajaj Discover – Positive Health Medical Excellence Award 2010’, the 43-year-old ‘geneticist with a social cause’ and Founder President of the Down’s syndrome Care Association, Dr Dnyandeo Kisan Chopade says: “There is tremendous ignorance and lack of awareness about Down’s syndrome not only in general society, but in doctors’ society too.” In an exclusive interview with Anika Sharma of D.N.I.S., the Nashik-based doctor talks about various issues and challenges concerning persons with Down’s syndrome, laws for their protection and rehabilitation.

D.N.I.S.: Please tell us in brief about yourself.

Dr. Chopade: I am a medical doctor. I have my genetic centre in the name ‘Genetic Health & Research Centre’ at Nashik, started in the year 2003, where I am providing counseling and testing for patients of genetic disorders. My main area of work is Genetic Health Assessment, Genetic Counseling and Chromosomal Analysis. I started ‘Down’s syndrome Care Association’ (D.S.C.A.) as its Founder President in 2006, with a few parents of Down’s syndrome children and doctors from relevant specialities.

D.N.I.S.: What is Down’s syndrome? Where did the idea of establishing D.S.C.A. come from?

Dr. Chopade: Down’s syndrome (D.S.) is the most commonly occurring chromosomal disorder in newborns, causing multiple disabilities with an incidence of 1 in 800. D.S. is caused by an extra chromosome 21 in the child. Normally, everyone of us has two copies of chromosome 21, whereas in D.S. there are three copies, and this extra copy of the chromosome is responsible for number of disabilities in the child. Often D.S. is associated with some impairment of cognitive ability, physical growth and physical appearance. Most individuals with D.S. have intellectual disability in the mild (I.Q. 50–70) to moderate (I.Q. 35–50) range. As a result, they may have some health problems but not necessarily in all the cases. They can become fairly self reliant in everyday life if proper education and training is given to them both at home and school. Emotional and behavioral problems that are often reported by family or others, results only when their emotional needs are not taken care of.

I had been actively working in the area of medical genetics for the last 18 years and have been observing Down’s syndrome as the most common genetic disease. What I also observed is that due to lack of knowledge, ignorance about the condition on part of the clinicians, general apathy at all concerned levels and unavailability of a support system, parents of D.S. children literally experience guilt, anger, indifference towards the child, hatred, inferiority complex and a lot of suffering. Not only the child suffers because of this, but the whole family’s happiness is at stake. This made me think of having an association of the parents and all the likely supporters. D.S.C.A. is a charitable registered trust, working towards the betterment of individuals and families of Down’s syndrome. It is one of the very few N.G.O.s in India involved in creating general public awareness about D.S. and providing assistance to affected families.

D.N.I.S.: What is D.S.C.A.'s primary area of work? What are the challenges you seem to be facing?

Dr. Chopade: With a mission to create an opportunity for D.S. individuals to live life powerfully and the life they love, we have set certain goals for D.S.C.A. These goals are to create a national platform for D.S. individuals and families, to create appropriate opportunities for them, to make necessary literature available through books, website and C.D. R.O.M.s, to do research at national level and disseminate the knowledge and to arrange conferences at various levels.

There are many challenges that we are facing. We do not have any source of income, manpower, place or land of our own and do not have any corpus of money for various activities. Only those involved with us voluntarily are doing the work selflessly. For some of the activities like the World Down’s syndrome Day, we could procure meagre funds. But then, we are finding it very difficult to continue with the work without financial and manpower support.

D.N.I.S.: What are the issues concerning people with Down’s syndrome?

Dr. Chopade: There are number of issues concerning persons with Down’s syndrome. They are not attended properly at all the possible levels like at home, schools, hospitals, society or workplace. They are not getting proper education and support. They are discriminated and hardly get their share of public resources. It will not be an overstatement if I say that they are not getting proper treatment as human beings. Apart from many health problems, there are other concerns like social acceptance, behavioral problems, financial problems, etc. There is no cure available for D.S. However, with early intervention strategies, proper support system, suitable education, public awareness, parents’ education for dealing with the situation and rehabilitation, D.S. individuals can live a reasonably good quality of life.

D.N.I.S.: What are the laws in India to protect the rights of persons with Down’s syndrome?

Dr. Chopade: In my knowledge, there is no special law dealing with the problems of Down’s syndrome exclusively. However, all the laws applicable for disabled persons are applicable to persons with Down’s syndrome also.

D.N.I.S.: Is the Persons with Disabilities Act (1995) being used by persons with Down’s syndrome to avail the various provisions listed under it?

Dr. Chopade: We have around 115 registrations of D.S. families from and around Nashik. Parents are not aware of any laws for the benefit of their child. However, we have recently started studying the laws and finding out the possibilities of support from the government and other agencies for these D.S. individuals and families. We have procured disability certificates of most of the registered D.S. children and now we have applied for the ‘Niramay Scheme’ for health insurance of some of the kids.

D.N.I.S.: Do you think there is a lack of awareness about Down’s syndrome in society?

Dr. Chopade: Yes. There is tremendous ignorance and lack of awareness about Down’s syndrome not only in general society, but in doctors’ society too.

D.N.I.S.: How many people are affected in India with Down’s syndrome?

Dr. Chopade: There is no data showing the exact number of people with D.S. born in India, but there are estimates showing that every day approximately 60-70 D.S. babies are born, making it around 20,000 to 25,000 D.S. babies a year.

D.N.I.S.: According to some reports in the media, almost 98% of children with Down’s syndrome have no access to education. What is your take on this? Should they be integrated into mainstream education?

Dr. Chopade: I cannot comment on the percentage as I do not have exact research data available. However, in my opinion, most of the D.S. children do not get the facility of education, especially from the rural areas. The western world has shown through research that children with D.S. should be integrated into mainstream schools for better inclusion. In India, this is not giving results for a number of reasons. One and the most important reason that I have studied is the negligent attitude of teaching institutions towards D.S. children. There are number of other reasons like unavailability of special staff, inadequate care providers, inadequate requisite facilities, mismatching syllabi for D.S. children and so on. My study also says that D.S. children do not receive proper education even in the existing special schools.

D.N.I.S.: What can be done to rehabilitate persons with Down’s syndrome?

Dr. Chopade: There are many things that can be done to rehabilitate persons with Down’s syndrome. First and most important is to create opportunities for suitable education, acceptable environment, awareness about the condition in society, special skill training based on individual capabilities, creating specific job profiles for the individuals and so on.

Link:
Interview

India should ratify 'Optional Protocol': Shuaib Chalklen

He is a prominent leader who has made extensive contributions to the advancement of disabled persons within both regional and global frameworks. He has assumed numerous positions in the fields of disability, governance and administration at the national and global levels. Shuaib Chalklen, U.N. Special Rapporteur on Disability of the Commission for Social Development, says “international cooperation and exchange of information is a critical factor”. In an exclusive interview with Anika Sharma of D.N.I.S., Chalklen says that he looks at disability as a cause and is still trying to make a revolution. He talks about various disability movements in Africa, issues faced by disabled persons vis-à-vis access and shares his views on the new Disability Law in India. Excerpts:

D.N.I.S.: When did you first become aware of the disability issues? What influence this has had on your way of thinking and on your life?

Shuaib Chalklen: I became disabled in 1976. As far as I know, the disability movement in South Africa started in the 1980s. However, I became personally aware of that only in 1990 when I met a group of disabled persons in Cape Town. It had started in Johannesburg and was quite a strong movement in most of the Northern part of the country. But it was very weak in Cape Town and its surrounding areas. I formally joined the National Movement in 1991-92 and took up a job as a National Training Officer in the disability movement. It was an eye-opener to look at disability also as a cause. I hadn’t thought of it in this context before. There was only one cause in South Africa at that time and it was fighting the previous regime and the Apartheid system, so that was the main cause for everybody. Therefore, disability was something new for me, but it was also a good thing, personally.

D.N.I.S.: How strong is the disability movement in Africa? Can you give us an insight into its history?

Shuaib Chalklen: In the whole of Africa, in each country, there are at least a few organizations of disabled people. But it depends on how you define a strong movement. In my view, a strong movement is a movement that can challenge the state to achieve something. The objective of the exercise is to change the conditions of disabled people. So, a strong movement must be gauged around that. Does it have an impact? Therefore, if I look at Africa as a whole, there are only a few countries that have changed the conditions of disabled people. And part of the reason is that, in many African countries, the movements are very weak. There is a strong state that doesn’t allow civil society to flourish or grow.

D.N.I.S.: Can you tell us something about the latest developments in terms of new concepts vis-à-vis access in Africa?

Shuaib Chalklen: There are some countries in Africa where access is non-existent. Algeria, Libya and Tunisia are some examples. But, there are some developments related to access in North Africa, Morocco and Egypt. There are wheelchair accessible rooms in hotels, but if you go further than that, then there is no access. In Sub-Saharan Africa, access doesn’t exist. In South Africa, you may find some access. If you go to a beach in South Africa, along a promenade, then you’ll find that public toilets are accessible, there are pedestrian crossings for blind people, and so on.

D.N.I.S.: So, what is the government doing about this?

Shuaib Chalklen: Twenty-two countries in Africa have ratified the Convention, out of 54. I have worked in every single African country in three years and all these governments have told me that they have got wonderful policies on disability. When I meet the Prime Ministers and Ministers and ask them about the Convention, they tell me: “No, we don’t need to ratify it. We have a wonderful policy on disability.” Strangely, they do not implement even one of its provisions. Now, there could be two reasons for that. Either they have got weak movements, so nobody apprises them or they have got a compromised leadership. The leadership of the disability movement is so close to the government that the leader doesn’t challenge them because the government gave him an office, the government gave him a car, so he is not going to complain. There are disabled people, but they have no say.

D.N.I.S.: There is a huge debate in the Indian disability sector regarding a new and comprehensive law based on U.N.C.R.P.D. What are your views on the subject?

Shuaib Chalklen: Well, I am not fully aware of the debate. But, in my view, if we look at all the U.N. documents from the World Program of Action, the Standard Rules up to the Convention now, none of them made a division on the basis of different categories of disability. The Convention on the Rights of Persons with Disabilities (C.R.P.D.) is one document that makes reference to all the rights of all the disabled people. So, we would suggest that, in India or in any other country, there should be one law for all disabled people. And, as I said earlier, the objective of the exercise is to change the conditions of disabled people. But, what we often find is that there are so many committees and so many different organizations that it becomes difficult. So, my own view is that, there should be only one legal instrument because despite the implementation challenges, different ministries and agencies work differently. If you have one law, then it becomes easier for disabled people, legally, to challenge it if it is not implemented.

However, to come back to the C.R.P.D., it is only one Convention that has an “Optional Protocol”. And, I believe, India did not ratify the “Optional Protocol”. I would strongly suggest that they do so. This is something that organizations like N.C.P.E.D.P. should work on and encourage the government to ratify the “Optional Protocol”. Because, I can see no reason why a democracy like India should not ratify the “Optional Protocol”. What’s the motivation for that? I know that some of the countries have ratified the Convention with reservations because they have got problems with Article 12 (Legal Capacity) but I believe that it is the question of how they interpreted it. In my opinion, I would strongly discourage any country from ratifying with reservations.

D.N.I.S.: As a U.N. Special Rapporteur, what are the major challenges that lay ahead in 2011?

Shuaib Chalklen: One of the challenges is international cooperation. We don’t exchange enough information on technical capacity. We don’t do that at all. Secondly, implementation is a challenge. If countries ratify the Convention, they must implement. The other challenge that I work on quite frequently, and also mention in different countries is, the position of women with mental disabilities. I don’t know about India, but that’s a huge challenge in Africa.

D.N.I.S.: You are in a very responsible position as of now, in the United Nations. So, what do you think you can do in terms of meeting these challenges?

Shuaib Chalklen: Well, the only thing that I can do is, when I get into a meeting I talk about these issues. I can only raise awareness. I am not an organization, I am just an individual. So, awareness raising is really the main concern.

D.N.I.S.: What other methods would you use?

Shuaib Chalklen: I am targeting a few countries, like the Nordic countries. We are going to have a Nordic Country Meeting on mainstreaming disability in development. However, on the question of goals on women with mental illnesses, I am working with a world network of users and survivors of psychiatry. Another thing I am trying to do is to get on to the Organisation for Economic Co-operation and Development (O.E.C.D.) meeting in South Korea. It is very difficult since it is a closed club of some of the richest countries of the world.

D.N.I.S.: How many countries are expected at the O.E.C.D. meeting?

Shuaib Chalklen: Well, I don’t know what the exact membership of the O.E.C.D. is. May be, 12 to 15 countries. However, I have got a very ambitious agenda. If you look at all the things I told you about what a single person is trying to do in this world, then in simple words, I am still trying to make a revolution!

Link:
http://dnis.org/interview.php?issue_id=2&volume_id=8&interview_id=159

Sunday, October 09, 2011

Art in the jailhouse

Jail No. 2, Central Prison, Tihar: A place unlike any other. Here, prisoners lead a fairly normal life, learning to paint, bake cookies and bind books. What's more, at this correctional centre, also known as the Jail Factory, creative art is used to reform inmates.

Praveen is one of them. Just 16 when he arrived in prison after being charged with rape, he paints only black and white portraits and landscapes. He studies with professional artists and teaches beginners. Suresh, an undertrial in Tihar, draws inspiration from his life experiences. Painting has imbued him with confidence — he has 300 works to show and participates in inter-jail painting competitions.

Neuro-psychiatrist Dr Sanjay Chugh, says, "Art therapy acts as a vent for the clogged emotions of these inmates. It can help them cope with stress and traumatic past experiences. Very often, they are inexpressive or reluctant to talk about their problems. This therapy allows them to reveal their thoughts in a non-threatening manner."

Art therapy's extraordinary impact has had remarkable results. Recently, the Ramchander Nath Foundation, an NGO that's been working with Tihar inmates for two years, organized an all-jail art competition in collaboration with Ojas Art and Delhi Prisons. The NGO's founder Anubhav Nath now plans an exhibition of prison talent alongside leading contemporary artists.
This is not the only NGO involved. There is Family Vision, which has conducted art sessions for Tihar inmates since 1993. Family Vision's Sonia Pillai says, "Art helps a prisoner to step away from himself and discover a kinder and gentler side to himself. It provides a positive means of self-expression." Pillai claims that nearly 25,000 adolescent prisoners have benefited from this reform initiative over the last 12 years.

Family Vision also conducts theatre workshops, music and drama presentation and embroidery classes. It also offers personal counselling, character education for adolescent inmates and child development programmes. The theatre programme touches on themes that include anger management, responsible citizenship and the dangers of drug abuse. Each programme is for one prison ward at a time; each draws roughly 300 inmates. "The participation of the inmates in these plays gives them a chance to reflect on their own behaviour and change the way they respond and react to real-life situations," says Pillai.

Sixteen-year-old Jaiveer was a skilled tailor before he arrived in prison. To encourage his skill, the prison administration gifted him an embroidery kit. That was all the push he needed; soon enough, he started embroidering clothes in jail. Three years later, he was acquitted. Now, back home, Jaiveer runs a small but successful tailoring business.

There may be many Jaiveers behind bars but social and legal barriers often make it difficult to bring prisoners into the mainstream, says S K Bharadwaj, retired joint director (prosecution), Meerut range. "Effective rehabilitation programmes help convicts improve their social skills, change their mindset and reduce chances of a re-offence," he says. "Art can act as a cathartic booster to help inmates identify their strengths."

Jail authorities agree. Sunil Kumar, spokesman for Tihar Jail, says creative classes have a sobering and positive impact on the psyche of prisoners. "Our basic motive is to reintegrate prisoners as responsible members of society and help them utilize their time in prison properly," he says. Such value-based training has benefited more than 550 prisoners at a time. "It helps them develop positive personality traits," he says.

Source: