Celebrating diversity, understanding disability

“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.

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 🙂