Celebrating diversity, understanding disability

Lior Liebling

So you have your Bar Mitzvah coming up, Lior?”

“Yeah.”

So what happens with the Bar Mitzvah?”

“With the Bar Mitzvah, I’ll grow up.”

“So, what will you do then? Drive a car?”

“No, drink beer.”

In the darkened screening room, the audience chuckles as the 12-year-old Lior Liebling delivers the last line with a naughty smile and a twinkle in his eye. Lior, which means “my light” in Hebrew, is the protagonist of an award-winning film by Illana Trachman, Praying with Lior. This documentary film is about Lior, a special child, a child with Down’s Syndrome, and a child who loves davening (traditional Jewish prayer) and singing, and who every one thinks has a special relationship with God. His faith and belief in Hashem (Hebrew for God) is simple: when asked if God has a smell, a taste or a form, Lior says, “No, no, no. God is God.”

Praying with Lior is not just a film on a child with Down’s Syndrome; it is also a film on the people who surround him, his environment. It is a film on the people whose lives have been affected by his disability—his father, who struggles to get Lior included in as many “normal activities” as possible so that he does not feel alienated; his younger sister, Anna, who resents the fact that she does not receive the attention and love that she feels is her due as the youngest child in the family; his older siblings Reema and Yoni, who are resigned to playing the burdensome role of surrogate parents… It is a film that hints at tension in the family due to complex family dynamics. It is also a film about Lior, his faith and his struggle to lead a life like his peers and his inability to understand why he can never be like them.

I saw this film and 20 others as part of the “We Care Film Fest: Celebrating Diversity on Disability Issues” held on 2–3 March 2012 at the Tata Institute of Social Sciences. According to the Film Fest’s website:

We Care Film Fest is an annual international travelling festival of documentary films on disability issues. It is organized by Brotherhood in association with the United Nations Information Centre for India and Bhutan (UNIC), the United Nations Educational, Scientific and Cultural Organization (UNESCO), the National Trust and the Asian Academy of Film and Television (AAFT). This unique Festival began in 2003 and is now in its ninth year.

This 2-day Film Fest had documentary films from India and abroad, short and long films, as well as films made by professionals, amateurs and students. Though the efforts to showcase such a wide range of films are commendable, not all of them were good — some of them were self-indulgent, some of them were abstract, and a couple of them actually gave me a headache due to the jerky camerawork. Presenting my observations on the films that I liked.

  • There were 2 other films on persons affected by Down’s Syndrome: Down’s Way Up and Believe Me. Though both the films were about different people — Rishi Shahani in the case of the former, and Ajay Chuttar in the case of the latter— there were more similarities than differences between the films: the roles that their mothers played in their upbringing; the worry that the parents faced about their future after they were gone; and both Rishi’s and Ajay’s wish to get married.
  • Esi Kanghi (Manipuri) about Isheihanbi, an embroiderer who stitches with her feet. I have seen foot-and-mouth artists, but never something like this. I watched open- mouthed as the needle flew in and out of the cloth and her embroidery came to life on-screen.
  • A differently-abled person, as the narrator, asks some uncomfortable questions in Advitya (Hindi). The narrator is employed in a workshop run by an NGO, which only employs people like him. He wonders why people who come on field visits to his workshop claim to like it, but never keep in touch or come back once they leave.
  • Bulandiyan (English and Hindi) is a film about Manish, a person with severe physical disabilities. It captures his joy and pride when he is placed with Wipro through a campus interview for graduating MCA students of his University. It is  celebration time for family, friends, neighbours and hope for similarly disabled people like him.
  • Taste of Berry (English) explored care and treatment options for people with schizophrenia. The film is made by a doctor based on his experiences and exploration of the humane aspect of this mental illness and its treatment at the Athma Shakti Vidyalaya at Bangalore.

But the film that wowed and moved me was Children of Stars (Chinese and English, with English sub-titles). A documentary film on autism, and produced by Alexander Haase and directed by Rob Aspey, this 50 minutes 2007 film has sensitively depicted the struggle, fears, confusion and desperation of the parents of autistic children.

A scene from “Children of Stars”

The documentary was filmed on location at the Stars and Rain Academy, Beijing, an örganisation that works with parents of children  with autism. This organisation conducts an 11-week programme for the parents where they are taught behavioural techniques that will enable them to manage their children.

The film begins with the newest batch of parents arriving at the Academy with their autistic children. Some children are accompanied by both parents, most are with their mothers, and the remaining few with their fathers. The entire batch is divided into parent groups based on the severity of the autism with the children. The film chronicles the journey of the Feng Jia Wei family, whose 5-year-old boy is severely autistic. The Feng boy cannot speak, can barely recognise his parents and is often very violent. Due to this, the family has to face a lot of abuse, even from their own family. In one scene the father recounts how his mother had said that “At least a beggar can ask for food. Your son can’t even do that and he steals food instead !” With their careers destroyed and a bleak future, and thoughts of a family suicide looking very attractive, the Fengs arrive at the Academy, their last hope.

The film makes the viewer live the family’s emotions, their training, their hopes, their plans for a future as a family, their aspirations, but most of all acceptance. It is a beautifully made film and I felt their heartbreak, confusion, despair, and difficulty in accepting that life can never be “normal” for the children or their families as we know it. But along with all this I also felt their hope.

Do allow me to digress here to share this story, which was narrated to me by my friend Deepa. One of her friends has a son with autism. The child was 2 years old when this was diagoned. While pronouncing the diagnosis, the doctor had said that the child would be no better than a human dog. When Deepa had shared this with me a few months back, I was horrified and had railed at the doctor’s insensitivity and attitude. But as I watched this documentary, I understood what the doctor meant. At the Stars and Rain Academy, the parents are taught how to train their children to obey simple commands and reward them with simple treats when they are obeyed. Exactly like dogs, human dogs.

The Film Fest was an eye-opener for me in many ways—most of all in understanding the diversity that exists in the field of disability. Diversity is a not a word that I normally associate with disability; it’s a word that I associate with different cultures, experiences, people, behaviours, race, caste, class, etc. When I said as much to Jayess, a friend who works in the field of disability studies, this is what she had to say,

“Why would you think so? There are types and types of disability, just as there are types and types of people. And they cannot be clubbed in one group. Each type of disability comes with its own set of prejudices and problems and issues, and each one of them has to be understood differently. Disability is not homogeneous. Yes, there is diversity in disability. You’ll know what I mean when you see the films.”

We had this conversation, before I had saw the films at the Fest. And yes, my friend was right. In spite of the rather average fare that the Film Fest dished out, it was an eye-opener for me on the issue of diversity in disability. For instance:

  • Cerebral palsy is still grouped under mental retardation by the government when it is actually a physical disability.
  • Dwarfism is considered as a disability, though there is no official recognition by the government.
  • There is huge variation in the degree with which Down’s syndrome manifests itself—from severe retardation to those who can manage their day-to-day activities fairly independently.
  • Similarly, there is variation in the degree of autism as well.

However, the Film Fest was not without its share of problems. In addition to the average quality of some of the films and poor sound recording in others, some films could have done with sub-titling. There was no background given on any of the films screened. In fact, when I asked the organiser’s representative to send me the list of films screened as well as the creative details, he promised to mail them to me. I am still waiting.

But my biggest grouse has to be the audience, which comprised either persons with disability or students of disability studies—there were just one or two laypersons like me. Since it was assumed that everybody in the audience knew everything about disability, there were no introductions or orientations for the audience. And in the absence of handouts, it was really frustrating.

What also puzzled me was the poor numbers attending the Film Fest, with the maximum number never exceeding 50 ! In fact when screening began on day 2, there were just 3 people in the room—two with them were part of the organising team and the third one was me ! A little asking around revealed that little or minimal publicity had been done and poor coördination between the organisers and the hosts had led to many people not knowing about this festival at all !

I wish more people could have attended, people who are interested in knowing more about this topic, people who need to be educated and sensitised to this issue. If not for anything else just to get a different perspective on life, a life that most of us take for granted. I leave you with some scenes that moved me from the films that I saw at the Film Fest:

  • Lior saying, “I don’t have Down Syndrome. I have Up Syndrome.”
  • When Lior hugs his mother’s tombstone and says “I miss you”, he breaks into a keening wail, and I felt my own cheeks become damp.
  • When Feng, the child with autism, hugs his father and says “Papa” for the first time, and then says “Mama” again for the first time. The expressions on his parents’ faces had me reaching for a handkerchief.
  • Ajay Chuttar, a person affected with Down’s Syndrome saying that he wants to marry a girl who will look after his family. My heart just about broke then.

If you do get a chance to see the films mentioned here, don’t miss out on them. Otherwise, there is always a chance to see them when this Film Fest comes back next year 🙂

31 thoughts on “Celebrating diversity, understanding disability

  1. By the time I came to the end of the review of all those beautiful films on disabilities, I was speechless. You have captured entire lifetimes of fortitude in those four closing sentences; Lior’s claim that he has an up syndrome, Lior’s lament at his mother’s grave, Feng’s first sounds of ‘papa’ and ‘mama’, Ajay’s search for a bride who will look after his family. I am grateful for being able to read all this in your remarkable style.

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  2. Hmm I have only one problem that such movies dont get as much publicity and they get shown only in some festivals or something like that. I wish more people get to see all theae and knpw of problems faced by others.

    When I was in india I knew nothing of this all its only now with yearly training and all getting to know of such ..

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    1. Yes, Bikram, you are so right. These films are showcased only in a particular circuit and then fade away due to lack of publicity. I got to know about it by chance and that is how watched these films. I wish these films are shown in theatres (at least the short ones) and on prime time television.

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    1. Thank you, Sumitra, for stopping by and commenting. “Taste of Berry” is available on Google video, and you can get the link from the post itself. Good luck in getting the others.

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  3. Thanks Sudha for this soul stirring account. It as if we watched it together. I loved Playing with Lior and it showed the role of spirituality as the ‘reason to hope’. While most of the films capture strengths of persons with disability, they leave us humbled as human beings are bound by a common energy! Thanks for sharing your thoughts in such a poignant way.

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    1. Thank you, Jayess. I am very happy that you were able to connect with this post. Each film was humbling in its own way—if Lior shows the simplicity of faith in God, then Children of Stars was about faith in ourselves and our abilities. Both these films have moved me beyond measure and in a way life can never be the same again.

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  4. I think the primary objective of such film festivals is to increase awareness of the issues they are trying to promote. I wonder then, why the lack of publicity? The organizers should be put in touch with PR firms that could publicize the event pro bono and add to their philanthropic chops. I wonder why something so simple is difficult to achieve. If there’s anything people like us can do to get the word out, please let me know. I’d be more than happy to do some work for such a cause.

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    1. Thanks for your suggestion, Meera. This post will be read by the organisers and they will surely read your comments. It is extremely important that there should be increased awareness on this issue, and for that we need more and more of the general public to be present at such events, and not just persons with disability.

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    1. Thank you very much. 😀 And Children of Stars is such a beautiful movie that it will change your very perspective on life, and I mean that in a positive way. Do watch it if you get the chance.

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  5. You have as usual done a wonderful job of capturing the soul of what you are writing about. I have seen the channel True Movies while I was in the UK and the stories were all after my heart. I would have loved to watch these, but as Bikram says, they are not screened in regular theatres. Is there some way one can get to see them, I mean in digital form or on You tube?

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    1. Thank you, Zephyr. Some of the movies are available in institutional libraries. One can also tap into the collection of film maker friends like I do.:-) Only trailers are available online. For example, this is the link to Children of Stars: http://www.youtube.com/watch?v=VmXnwyuPqfw and this is the link to Praying with Lior: http://www.youtube.com/watch?v=B14tlmbE4TE
      The entire film of Taste of Berry is available on Google video and the link is available on my post.

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  6. Each one a little shining star
    on the sky that seems so far
    and always a little out of reach
    stoic, dark, silent and deep..

    This world of dreams,
    of plots unknown
    when silence stays
    spilled on the floor,

    The limits of courage
    redefine,
    on the canvas
    of the mind..

    The future and the past
    melt into the crevasse
    of the somber
    present path..

    A gentle reminder
    to those who stay
    on the borders
    of the play

    which has become
    the story of the life
    of those who inspire
    as they deal with strife…

    Thank you, Sudha, for the moving pictures of your sensitive mind. Your kindness shows through the delicate prose.

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    1. Thank YOU, Deepa for sharing the story of the human dog with me. I didn’t understand the context and perspective behind the statement till I saw Children of the Stars.

      And thank you for your beautiful comment in verse.

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  7. Sudha, what a delightful collection of movies. I must remember and keep note of them…thanks for sharing this! I remember a Film Festival I saw last year in Pune and there was a film about Down’s Syndrome. Very sensitively handled, very taut too. I do not remember the name offhand but will tell you know…

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  8. Thank you for this post. I will surely watch out for any chance to see the movies you have mentioned. Yes, they do need more publicity so more of us can watch them.

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    1. Publicity is only one part of it, and a major one at that. What is important that such Film Fests do not become a event only for those with disability as this one was. It can be a perfect place to give out information of=n disability issues, pitch ideas for advocacy, get support for campaigns… The opportunities are endless. Sadly, this was an event that wasted it all.

      Do watch the movies, if you can. I’d love to know what you think of them.

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  9. I would have loved to be there, since disability is part of my work and I think that films are wonderful medium to raise issues. Thanks for such well written and heart felt post.

    Recently Indian Government has given the national award for social issues film to “Mindscapes of Love and Longing”, a film that liked very much. From your writeup I think that it was not part of the festival.

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    1. Thank you for your comments, Sunil. “Mindscapes of Love and Longing” was not part of the Festival. But then I did not see all the films and there was no list circulated either.

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  10. Thanks for this post! If not for this, most of us would not be aware of such films. It is nice to read about all such interesting events through your blog, I discover parts and sides of Mumbai that would’ve remained hidden to me otherwise. Likewise, loved your post about your Sunday walk through Ballard Estate….saw the city with different eyes.

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    1. Thanks for stopping by and commenting, Nima. Not only do I like documentary films, I feel that films like this deserve all the publicity they need and then some more.

      I’m very happy that you liked the Ballard Estate blog. Now why don’t you do that walk and let me know what you think of it 🙂

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  11. Hi. Thank you so much for your kind review of the film “The Children of the Stars”. Your feedback is very much appreciated especially as I am embarking on a new project that should be done later this year. Also, I intend to make “Children of the Stars” available to the public online in May or sooner as the rights will pass back to me shortly. Thanks again and all the best. Rob Aspey

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    1. Hi Rob, thank you so much for taking the time off to read and comment here. “Children of the Stars” moved me deeply as I’m sure it does many other viewers as well. I work in a university that offers a masters’ programme on disability studies and action and they would be very happy to know this. Looking forward to knowing more about your new project as well. Good luck 🙂

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