Exiled in Spinalonga

The book “The Island” by Victoria Hislop is a story about 4 generations of a family from Plaka (Crete, Greece), marked by love, betrayal and leprosy. It is also about the world of Spinalonga, where persons with leprosy in Greece were exiled for about five decades during the first half of the 20th century.

Isolation of Persons with Leprosy

From prehistoric times, communities across the world had banished persons with leprosy to the outskirts. In early 20th century, developments in microbiology had convinced the doctors that isolation of persons with leprosy was necessary to prevent the passage of infection to others.

Islands were a natural choice for their isolation. Countries had made laws that asked for compulsory shifting of persons diagnosed with leprosy to the designated isolated areas. Thus, children were taken away from their parents, mothers and fathers were taken away from their children, and forced to live in such isolated places. If women in these places became pregnant, they were forced to undergo abortions and if they had babies, these were taken away and given for adoption. These laws were scrapped only around 1960-70s, as new medicines to treat leprosy had become available.

Last year, I had visited the Nagashima island in Japan (image below), which was also used for the isolation of persons with leprosy. There I had heard about Spinalonga island in Greece, for the first time.

The Island by Victoria Hislop

During the three decades of my work with AIFO, I had heard many stories from persons with leprosy about their lost families. Thus, when I had started reading “The Island”, I already had some ideas about what I was going to find in the book.

"The Island" is the story of Eleni, a primary school teacher, her husband, Giorgis, a boatman and their two daughters Anna and Maria, who live in Plaka on the island of Crete. Giorgis supplements his income by carrying supplies to the leprosy-island of Spinalonga.

In 1939, Eleni and one of her students, Dimitri, are diagnosed with leprosy, and are forced to leave their families and shift to Spinalonga. After a few years, Eleni dies. Her daughters grow up with Giorgis. Anna marries Andreas, son of a rich land-owner. Maria is planning to get married to Andreas’ cousin when she is diagnosed with leprosy and forced to shift to Spinalonga.

It is the time of discovering new medicines for treating leprosy and a few years later, the persons are no longer forced to live in Spinalonga because the disease can be cured. Maria returns home and marries a doctor whom she had met in Spinalonga. Anna has a baby girl, Sofia, but has problems in her marriage, and a tragedy waiting for her.

The story is told in flashback with Alexis, Sofia’s daughter who has come to Plaka to learn about her mother’s family.

Comments

The Island is a well-written family saga with strong women characters. For me, its most interesting parts were the descriptions of the life in Spinalonga, including the stories about testing of new medicines for curing leprosy.

Clearly the author had done a huge amount of research to present a well-balanced picture about the situation of leprosy in the early 20th century Greece. Its strong point is that the book is never didactic, and the aspects about leprosy are well woven in the story. While talking about loss and exile, it also tells about love, friendship and solidarity.

Conclusions

The Island was a very successful book. It was converted into a 26 parts Greek-TV serial. Since then Hislop has written a few other books, which have also been successful. At the same time, she has become an ambassador for LEPRA, the British association working for the fight against leprosy.

This book brought the attention of Greek authorities about the unique history of Spinalonga, which is trying to become a UNESCO World Site of Humanity’s Heritage.

I have heard many heart-breaking stories of lost families and lost children during my travels in the old leprosy sites, though there were also some stories of hope and reunions. Though in most countries, the laws regarding forced isolation were changed during the 1970-80s, persons who had lived away from their families for decades, had often continued to live in their old leprosy centres, because those prisons had become their homes where they had forged new bonds of kinship with their fellow companions.

Earlier this year, while travelling in India, I had met Chait Singh who had been forced to leave his village and live an ashram, because he had leprosy. While telling me about his village, his eyes had filled with tears. This post is dedicated to him and to all those persons who continue to be exiled because of continuing prejudices and stigma against leprosy.

*****

#leprosy #spinalonga #historyofleprosy #historyofmedicine #bookreview #victoriahislop 

Loving the child you didn't expect

When we dream of love and a family, we dream of children like ourselves - bright and happy, who will conquer the world and who will bring joy to our lives. What happens when the child you had dreamed about, comes out very different from your expectations?

This is the premise of Andrew Solomon's wonderful book "Far from the tree: Parents, children and the search for identity" that touches with great empathy on the journeys of a group of "different" children and their parents to reach a surprising conclusion - difficult and unexpected journeys have their own joys.

Introduction

Diversity is an indivisible part of our lives - each of us is unique, even the similar-looking twins. Yet that diversity is within some undefined limits - the seed of each plant, would come up a unique and a different tree, but it would be still like its parent plant - the seed will not fall too "far from the tree." But what happens when the seed does fall too far and the extent of diversity is too big to be ignored?

With about 650 pages of stories exploring this theme of parents and their unexpectedly diverse children (and an equal number of pages with notes and references), Solomon's book did seem a daunting tome when I began reading it. However, soon I was lost in it, often thinking of events and people from my own life and my extended family, in a new way. The book tells mainly American stories, with only a few persons from Britain or Rwanda. Yet, I could feel and share the emotional journeys of the people described in it, because even though there are social and cultural differences from the persons in other countries, the essential human emotions are still the same.

Themes of the book

The book starts and ends with two personal chapters - "Son" and "Father" - these explore the relationships between "diverse" children and their parents with a special reference to Solomon's own life, as a gay person who suffered through depression and his decision to have children while he was writing this book. These two chapters are the emotional anchoring of the book.

In between those two chapters, there are six chapters dealing with disabilities - deaf, dwarfs, down syndrome, autism, schizophrenia and other disabilities. All these chapters are about conditions that the society and the parents usually look at as "negatives". The next, chapter VIII, is about a diversity that most of us would imagine as "positive" - the child prodigies.

Then there are three more areas of "negativity" - children born of rape of their mothers, children who end up in the world of crime and children who feel imprisoned in wrong bodies - the transgender persons.

On each theme, the book tells stories - each story is told from different point of views of the persons involved in it - persons themselves, their parents, their siblings, their friends, etc. In between the stories are scattered some reflections and information about some of the key issues regarding the different dilemmas that those people face.

For example in the chapter on dwarfs, there are stories of "little people" and in between the stories, you can understand about organisations of little people, the different names they prefer to be called, their dilemmas about having children like themselves or "normal" children, how looking at them individually we tend to focus on their shortness while when they are together as a group, we can see them as individuals, the different kinds of dwarfing conditions, the long suffering for getting "elongation operations", etc.

This way of telling stories is like building a story-pyramid, where each stone shows a different facet. In the end you realize that each diversity is made of countless diversities, each is similar to others and yet unique, and that you can't take for granted anything because as human beings, we continue to surprise ourselves and others, not just with prejudice and ignorance, but also with generosity and dedication.

Comments

It was a long time since I had read a book that touched me so deeply and I would like to thank Solomon for that. Diversity surrounded me since childhood and probably that is true of everyone else as well.

Diversity raises barriers around you, I had experienced it as an immigrant in Italy - you are different from others, and in many different and subtle ways, people react differently to you. I had had long discussions about the nature of those barriers with a friend who uses a wheel chair and negotiates different kinds of barriers all the time. As a child, I had grown up with two of my aunts being "diverse" - one because she was born with a few fingers missing in a hand, and another who had small pox as a baby and carried the signs of that infection on her face. Growing up, I had seen how we all behaved differently with the deaf brother of a close friend. A few years later, first one of my school friends and then another aunt, both had had children with Down's syndrome.

I chose to work in the area of disability and community-based rehabilitation. Often I have also interviewed persons with disabilities and their families. Many of the issues about which Solomon has written in the book, were not new to me. Yet, I found the book illuminating because it went much deeper and had a more profound connection with people it talks about. I must have read countless books, articles and journals on the issue of disability, but still Solomon's book gave me new understandings.

So if you work with development issues or in a community programme, even if not specifically in a disability related programme, read this book. If you are a health professional, don't miss it. Even as human beings, I think that everyone should read it. I hope that it will be translated into other languages.

Among all the different kinds of diversities Solomon writes about, for me the most difficult part was reading about the severely autistic persons. Not to be acknowledged, not to receive even a tiny smile or a flicker of recognition in the eyes - I think that I will find that the toughest thing to bear. However, there are different stories in the book that show that when we become familiar with a person and his/her condition, we can deal with it. It is the unknown, the "other" that makes us afraid.

Solomon writes very well, his empathy makes you understand people's feelings, fears and pains, but it is only in the chapter on Prodigy, that I could appreciate the poetic beauty of his words.

For example in the story of Zhenya (Evgeny Kissin) Solomon gives a vivid understanding about his early life in a state-controlled country with his words, "The Kissins lived the life of the Soviet Jewish intelligentsia: physically uncomfortable, constantly frustrating, the pleasures of the mind partially filling in for ordinary discomforts of the flesh and ideology’s constant intrusions on the spirit."

Or, this description of Zhenya that brings him alive so beautifully, "Zhenya is too tall and too thin, with a strangely large head, enormous brown eyes, pale skin, and a mop of crazy brown hair in which you could mislay something. The overall effect is slightly gangly, and his bearing combines the tense and the beatific. Watching Zhenya sit down at the piano is like seeing a lamp plugged in: decorative though it may have seemed, only then does its real use become apparent. You feel less that he is pouring energy into the instrument than that he is receiving energy from it. “I don’t know if I would be able to live if I suddenly became unable to play,” he said. Zhenya plays as though it were a moral act that could redeem the world."

Limits of the book

In terms of the stories that Solomon presents, I think that there is an inherent bias - people who did not want to care for their "problematic" children, for whatever reason, are under-represented in this book. I think that at one level our societies ignore or actively discriminate against "different" families, but at another level, people who feel that they can't take care of their children and give them up to institutions or to foster care, are also seen negatively. We expect people to "look after whatever God has given them, even if it is a difficult task!" And, thus I think that for such people, it is very hard to overcome feelings of being judged and probably feelings of guilt, so they do not share their stories in this book.

In the Indian context (and in other developing countries), often there are no institutions or foster care where you can "give up" such children. I am sure that communities have ways of "dealing" with this issue. Thus in my work, often I did meet persons who have chosen to take care of their "different" children, but there was no way for me to meet those had made other choices. I am saying this without any intention of judging others - for poor families that struggle to survive, there are not many choices and none may be easy.

The book explains that internet has given new opportunities for "diverse" people to find others like them and to create "communities". I wonder if through internet there are groups of parents who had chosen to give away their disabled children and can find solace and understanding with each other. Their stories remain largely unknown.

I also felt not completely convinced about the chapter on the prodigies in this book. I could understand the sense of alienation of these persons and their families and the sense of their diversity, and yet, this chapter is very different from all other chapters in the book. Solomon focuses on musical prodigies and the chapter is almost halfway in the book - it comes as a relief because, for once he is not talking just about pains and difficulties, but also about common joy, success and pleasure.

Conclusions

I think that if there is only one book from 2013 that you can read, then it should be Andrew Solomon's "Far from the tree". Not just because it talks of people who face enormous challenges and find joy in those challenges. But because it makes you appreciate and understand the emotional anchors of your life and how important are the love and affection of people in our lives.

You can read more about this book and get a glimpse of many of its stories on the book's webpage. The two images used for this post are from this same webpage.

***

A different teenage love story

Brazilian director Daniel Ribeiro's film "Eu Não Quero Voltar Sozinho" (I don't want to go back alone) is a Karan Johar's  "Kuch kuch hota hai" kind of film (with similar storyline) but with a difference. It is a cloyingly sweet short film, that left me a little irritated but may be that only means that I am no longer a teenager!

Introduction

The teenage love stories like Karan Johar's early films like "Kuch kuch hota hai" and "Dilwale dulhaniya le jayenge" (there were no real teenagers there, but that is only nitpicking) and hundreds of such romantic films and books all over the world tell stories of beautiful people, who meet, fall in love, face some heartbreaks and then in the end all the misunderstandings are resolved, the guy and his lady love kiss against the sunset and live happily ever after.

However, the teenage romantic worlds are make-believe worlds with make-believe people - everybody is beautiful and perfect with designer clothes - the billionaire handsome guy and lovely virgin princess. If you are fat, short, ugly or worse, if you are disabled or gay, you have no place in this make-believe world, not even as hero's sidekick or heroine's best friend.

Gay and lesbians face a lot of discrimination and barriers, and it is not easy for young gay or lesbian persons to express their sexuality. If they also have a disability then expression of their sexuality becomes even more difficult.

Ribeiro's film is different because his hero is disabled and he is also gay.

The film

Leonardo (Ghilherme Lobo) is a high school student. He is blind. His best friend is Giovana (Tess Amorim), who secretly loves him but for him she is only a friend. She accompanies him to his home every afternoon when the school finishes. Then arrives a new boy in their class - Gabriel (Fabio Audi).

Soon, Gabriel becomes friends with Giovana and Leonardo. He also walks with them after school. Leonardo feels attracted towards Gabriel but does not know how to tell it to him and decides to talk about it to Giovana.

Comments

It is a nice film to watch, simple and uncomplicated. However, there were different reasons why it irritated me a little bit:

(1) The film is based in Brazil but it is the world of rich and white Brazil. The whole class and the teacher are all white and rich looking. I know that Brazil has a lot of multi-colour families, which means that in the same families, some persons may be white, some dark and some in-between. Still, I would have liked the film more if at least some persons in the film were also not-whites.

(2) Everyone in the film is good-looking, perfect and a little artificial. Even Leonardo, who is blind, looks perfect with beautiful eyes.

(3) Everyone is accepting towards Leonardo's disability, no one makes comments about him. Even his being a gay is not an issue. The only dilemmas in the film are the romantic dilemmas - Giovana's heart break and the difficulty of Leonardo to express his feelings. Thus, the film is in an idyllic world.

However, I do recognise that as someone who is no longer young, and who focuses (too much??) on the problems and barriers faced by disabled persons and by non-heterosexual persons, probably I am looking at this film through a distorted lens. The film is a make-believe world to present alternate dreams to people who have a disability and are gay - like all teenagers they also have a need for uncomplicated romantic dreams and the film answers that need.

It is a short film (about 17 minutes) and though it is in Portuguese, you can watch it on Youtube with English subtitles. If you like sweet and romantic films with good-looking actors, watch it and tell me what did you think about it!

***
After I finished watching it, I was re-imagining "Kuch kuch hota hai" - suppose, Rahul (Shahrukh Khan) was secretly in love with Anjali (Kajol) but felt shy of expressing himself, and then Tina (Rani Mukherjee) came to the school and one day Anjali confessed to Rahul that she was in love with Tina ...

***

The abusers and the lynching mobs

When Tahehlka's Think Fest had started, we were getting ready to start our research on "Violence and Abuse" in north Karnataka. Reading the list of the speakers at the Think Fest, I had briefly fantasized about somehow flying to Goa to listen to some of them. About two weeks later, as the first news about Tarun Tejpal's sexual abuse of a journalist had come out, we had just started to discuss the preliminary research results. We were trying to make some sense out of the terrible situation that had come out of our research.

Our research was on "violence and abuse, including sexual abuse, towards persons with disabilities in the Bidar district of Karnataka". The research was conducted jointly with local associations of disabled persons and persons working in a community programme.

A group of disabled persons and community workers from Bidar district, both women and men, were trained to conduct the research. The aims of our research were two - (i) to gain an understanding about factors influencing violence and abuse towards disabled persons and (ii) to initiate a dialogue on how can violence and abuse be prevented.

During the initial training of the researchers, it had come out that this issue directly concerned both disabled persons and community workers. In the past 12 months, many of them had also been through personal experiences of emotional, physical and sexual violence.

Our daily feedback sessions during the research, when we discussed the information collected during the day, brought out sharing of peoples' stories and invariably had some of us crying.

In the next few weeks, I will be working at the analysis of the information collected during this research. However, the preliminary analysis of our data shows a terrible situation -

• More than 80% of the disabled persons interviewed had at least one experience of significant violence and abuse in the past 12 months. For most of them the experiences were more frequent, some times even daily.
• More than one third of the women interviewed had had at least one episode of sexual violence in the last 12 months.  Married women suffered more violence and abuse compared to unmarried women.
• Disabled men were also victims - more frequently of emotional and physical violence, but about 9% of them had had at least one episode of sexual violence in the last 12 months.

Our research shows that violence and abuse are common in our homes, in our families and in our communities. Few persons had the courage to talk about the abuse they had suffered. Often, those who were supposed to protect them, including police and authorities, were themselves complices and even perpetrators.

While reading about Tarun Tejpal and the journalist, everyday I am listening to the shrill debates, to the cries for jail and stringent punishment, to those who ask for castration and death. And I think of our research.

They shout - kill the rapist, hound anyone connected with them, make examples out of them, better if they are well known persons. The shrill noise means we are exempted from looking inside ourselves, to recognize and understand our societies. We do not need to look at what we do every day in our homes and our communities.

One Nirbhaya every now and then, is fine for breaking news, prime time debates and candle light vigils, so that abuse of hundreds of silent unknown Nirbhayas in our homes, families and communities can go on.

***

The Hurt Syndrome

The news came from a Japanese friend. She had forwarded a message from a common friend in the US and the message said:

... I am asking that each of you send an email to Nick Park and Aardman Annimations to object to the manner in which persons affected by leprosy are being portrayed in the soon to be released movie titled, "The Pirates! Band of Misfits." In the event you have not seen the trailer, the characters board a "pirate leper ship" and a body part falls off one of the sailors. This is a cruel portrait of the millions of persons affected by leprosy and negatively creates a lasting image on the minds of the young viewers from throughout the world who will see this movie ...

For past couple of decades I have been working in the field of leprosy. One of the key issues that continues to trouble the finding of new cases with leprosy and then ensuring their treatment and rehabilitation is the common image of this disease in public perceptions all over the world. Afraid of the social stigma and virtual social banishment that the disease can cause, people with leprosy often try to hide as long as possible.

However, over the past three decades, the actual situation of leprosy has changed drammatically. Today it is possible to get free treatment all over the world and the persons can get cured easily and completely. Therefore, it should no longer be seen as a disease that causes fear and is seen as "curse of the God".

I can understand the anguish of my friends because when we talk of this disease today, it is about thousands of persons who still get it today and have to face the social consequences of having a "dreaded disease" that are unjustified. Though most persons feel that leprosy is a kind of relic of the past, the reality is that every year there are about 250,000 new cases of leprosy every year. India and Brazil are the two most important countries in terms of number of new cases of leprosy today.

However, I do not believe in banning of films or insisting that they cut the scenes that are wrong in our view. This is what all the groups seem to be asking for when they feel that their depiction in the media is inappropriate. They make protests and ask for changes.

Here are a few examples of fights of other "misrepresented" groups from recent past asking for censorship or banning:

(1) In India, such protests are common place with persons of different religious, caste and social groups getting angry is a person of their community is shown in a negative way or in humour. The protestors frequently threaten violence and often end up destroying public property. Most the the time Indian Government gives in easily to such demands refusing to protect the writers, actors, directors and producers, and hides behind the bogey of "law and order situations".

Similar protests in relation to Islamic symbols/ideas in other parts of the world also has had many violent episodes.

(2) Persons with mental illnesses and persons with disabilities in many parts of the world have been fighting for not using their sterotypes in the different media including TV and films all over the world.

(3) Using caricatures of jews as being nasty moneylenders, and of arabs or Muslims as being terrorists are some other common examples from Hollywood.

I believe that if we go on like this, artists, writers and film makers will always be forced to express their ideas in narrower spaces and the world will be a poorer place for all of us.

I do not believe that banning films or censoring them to cut certain scenes is correct, whatever their provocation unless it is explicity asking for violence or expressing hate about some group.

We all have a right to criticise and if we find depictions in a film to be wrong or derogatory or stereotypes, we have the right to express our opinions, to debate and to discuss, to write about it on our blogs, to organise forums and if we feel very strongly, to promote calls for boycotting. If you don't agree with something don't go to see it, don't watch it, don't read it, and tell all your friends to do the same.

If you feel that it may not be understood by children, ask that it should be only for those above a certain age.

But I believe that no one should be asking for banning of people or their books, art or films or websites just because you feel that it gives a negative view of your religion/caste/community/gods. And no government should give in to such demands.

The only exception  to this, in my opinion, is those expressions that ask for killing, violence and hate against specific group of persons.

***
PS 6 February 2012: I have heard that producers of the film "Pirates the band of misfits", following the protests, have decided to review and modify the parts related to persons affected with leprosy.

Mindscapes of sexuality

"Why don't you make a film on the issue of disability and sexuality?", I had asked Arun while we were out on a walk. After so many years, Arun has finally answered my question with his new film - "Mindscapes of love and longing".

I had done my thesis on this subject and felt really passionate about it. I think that disability is a tabù area, something to be hidden and forgotten, pretending that it is not there. Sexuality is another tabù area. Though it is one of the most fundamental part of our lives, we hardly ever talk about it. Joining together the two tabù issues, disability and sexuality, means even greater tabù. Some thing to be hidden behind closed doors and closed minds. Acting as if the issue does not exist.

While Arun was making it, I knew that he was working on a film about disability and sexuality, but I had no other information about it. Thus when I finally had the opportunity to watch the film, I was not sure about what to expect.

After seeing it, I think that it is beautiful film and should be seen widely. That is because I feel that the film is not just about issues related to persons with disabilities. It also has so much for all of us, as human beings, as men, as women, as mothers and fathers, as siblings and as friends, to think about and to reflect upon.

The film - Mindscapes of love and longing

The film has five stories, starting with that of an adolescent girl Trisha. Like all adolescents, Trisha has crushes, she has started to dream of intimacy and become grown-up. She likes dressing up and giggling with her friends. Her mother Sangeeta Khandelwal can see her daughter growing up and like all mothers, tries to find a balance between her own desire to protect her daughter and yet support her in her growing up.

The second story is about a young man Alok Sikka. Alok also has his crushes and dreams. He would like a girl friend and a loving wife. And like all young men, he tries to weigh the pros and cons of getting married. "Can I really look after a wife? What would it mean for me and my life to have this responsibility?" And what about the desires he feels in his body?

The third story is of Sujata Goenka. She would like you to think that she has resolved her dilemmas. "I never wanted marriage", she says. Even if she grew up in a traditional family, she has fought for her own spaces. I can party, I can drink and I have had sex, she says defiantly. Intimacy? Companionship? Some questions are left unanswered.

The fourth story is of Sam and Meenu. Their's is an inter-religious marriage. She was his junior in school and it was love at first sight for him. It took him some time to convince her that they could think of love and marriage. They are not sure if they can have a child, but they would like to try.

The last story is of Vipul, Sangeeta, their son and their dog. It is like any other family with its share of ups and downs. "I liked his honesty, he didn't try to hide anything", she says. "In school and in college, I tried not to show but inside me, I knew that I was different and with time it would have become worse", he says.

The five stories are connected by a dance by Jyoti Gupta. She dances to the words of a poem that expresses the desire of love and longing. All the five stories are also connected by the different disabilities and the different barriers, inside themselves and outside in the world surrounding them, that all of them must grapple with constantly as part of their daily lives.

Comments

I liked the rich details of everyday ordinary events of people's lives in the film. There are no "experts" trying to explain anything. I think that our sexuality is not just about having sex, it is about relationships - our relationship with our own bodies, with our families, with our friends and with those whom we love. The film touches all those different parts of our sexuality.

Thus, I appreciated that the film does not try to categorize or explain anything, rather it gently touches on the complexities of all these relationships, weaving a tapestery of emotions that are not always easy to express in words.

I felt that this film is like a storm, where we experience different emotions briefly and at the end, we may not really understand all those emotions. Yet they can set a deeper process of reflection in our minds, not just about sexuality in the lives of persons shown in the film, but also in our own lives, about our own fears and insecurities, about our own desires and needs, about our fragility and complexity as human beings.

Some of the issues that I was thinking about after watching the film were:

(1) How much of our lives are linked to and influenced by different media - magazines, films and TV: Almost all stories have some references to films and TV. Trisha had a crush on Vivek Oberoi, Alok had a crush on Amisha Patel, all of them watch the mushy dramas on the TV. Watching these scenes, I was asking myself, what kind of images and desires, these films and TV provoke in us?

During my research on disability and sexuality in Italy, many of the persons had said that TV and films present ideals of beauty and perfection, that make us feel ugly, inadequate and unattractive.

I think that this area of relationship between our real lives and the stories of the lives projected in films and TV, is an interesting and complex area of research. Except for a rare "Guzarish" or "Koshish", films do not talk about persons with disabilities, and even less frequently as heroes and heroines.

(2) Issues of intimacy and privacy: Even though issues of intimacy and privacy have their own challenges in traditional joint families, yet most of us now associate love and sexuality as a relationship between two persons. What would it mean if you need a third or fourth person to assist you during your intimacy?

Watching the two couples, I felt complex and confused emotions about this issue. Like when Sam, one of the guys in the film, talks about his honeymoon in Mumbai, where they were always accompanied by their two assistants and there was no privacy.

(3) Setting of the film: The film is about urban India, about persons who can afford to have personal assistants and access to services. In this sense, the film is more universal, it touches on issues that other persons in US or Europe or another part of the world face in similar ways.

After watching the film I was thinking if persons with disabilities living in a poor area or a rural area of India, with uneducated or less educated parents, would face these issues differently and in which ways?

(4) Model of sexuality: The film is only about heterosexual relationships and does not touch on more complex areas of alternate sexualities. That can be another big area of research and reflection.

Conclusions

I think that it is brave film that touches on uncharted areas in a sensitive way. It is true that the film is about a subject about which I am passionate, and thus my opinion is biased. However, I do hope that the full film can be subtitled so that it is accessible to deaf persons and to persons from other countries.

I also hope that it can be subtitled in other Indian languages and used for promoting reflection among organisations and federations of persons with disabilities. Government of India has signed the international convention on rights of persons with disabilities and is working on a new national law on disability. Thus it would be worthwhile for many more persons to watch this film, since sexuality is an integral part of human rights.

I would like to conclude with a few lines of the poem that Jyoti Gupta expresses with her dance in the film:

I wish, I could
slide down the eyelashes
and turning into a drop dwell
in your eyes
or through your eyes
to your aching heart I go
in its recesses, as relief to reside
I wish
that you, as you shiver in the winter
of your solitary life
like a warm quilt, drape me over yourself
and, in giving your body my warmth, I melt.

***

Credits: Director: Arun Chadha, Script: Vineeta Deepak, Poems: Anshu Gupta and Manglesh Dabral, Translation: Ranjana Srivastava and Shobha Menon, Production assistant: Ankit Sharma and Ramesh Ram, Editing assistant: Ganesh Prasad, Camera: Joshua Prabhu, Sound: Sunder, Anurag Gupta and Shiv Das, Editing K. Manish, Music: Arvinder Singh, Producer: Rajiv Mehrotra, Executive producer: Tulika Srivastava and Ridhima Mehra, Subject consultant: Dr Anita Ghai; A Cine Pulse production, PSBT presentation supported by Films Division of India.

The film is available from PSBT (India).

***

Exploring madness

Recently I saw the "Exploring Madness", a series of short films by Dr. Parvez Imam. He is a doctor and a documentary film maker. The films are very brief, each lasting 3-4 minutes only.

The one I liked most was where he tells about women who are brought to a mental health hospital and left there by the family. Often, the families give a wrong address to the hospital, so that they can not be traced. After a few months, when the women are cured or are better, they want to go back to their homes, but the law does not allow persons treated for mental health problems to go out alone. Their only way to go out of the hospital is if some family member comes to accompany them. For many of them, no one ever comes to take them back so they are doomed to wait in the mental hospitals for ever. It was heart rending in the film to listen to the women who kept on saying, she had two children and she wanted to go back to her family.

I appreciated that the film respects the privacy of persons it interviews. And I liked the briefness of films. Even in their briefness, they make a clear point and touch the heart. I think that it requires a deep understanding of the theme and a strong empathy, to come up with something like this.

In the film, a lawyer tells about the Indian laws relating to mental illness. In India, if you are declared mentally ill, you lose all your civil rights, including the right to vote or to marry. For the law, it is justifiable reason for asking for a divorce. So like those women doomed to eternal wait for the families to come back and take them, there are many other areas of human rights violations of persons with mental health problems.

However, you can be cured of mental illness. Often mental illnesses are cyclical in nature, so there are periods when you are better. Doesn't the law allow you to regain your civil rights once the doctor treating you has certified that you are better? That sounds very cruel and unfair!

While watching the film I remembered some episodes from a period of life, that I had almost forgotten. It was the time when I was a PG student in anaesthesia at Willingdon hospital (or the Dr Ram Manohar Lohia hospital) in Delhi. Some times there were calls from the mental health unit accross the Tal Katora road and sometimes, I did go there to provide anaesthesia for persons receiving electric shocks (ECT). As shocks also produce convulsions in the body, through anaesthesia, you can relax the muscles so that they don't get hurt or pains afterwards.

I was thinking that in those days, I had never stopped on the way to look around in the mental health unit. It was only rushing to the ECT room and back. Perhaps, just the sight of ECT scared me so much that I didn't want to think about it?

At that time, I did not know that many organisations of "survivors of psychiatric services" are fighting against ECT, they feel that it is inhuman treatment and not useful. However, the textbooks of medicines continue to teach students about usefulness of ECT in certain conditions.

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