PANEL DISCUSSION
HOW I AM: CHALLENGING PERCEPTIONS
As part of the tribute How I Am: Challenging Perceptions, the 13th Thessaloniki Documentary Festival held a panel discussion on Tuesday, March 15, at the John Cassavetes Theater. The panel discussion was funded by the European Union – European Regional Development Fund, part of Region of Central Macedonia Intermediary Managing Authority 2007-2013. Participating were directors Marianne Kaplan (The Boy Inside), and Dan Habib (Including Samuel), both parents of problems with developmental disabilities, Yanna Kalogeraki, mother of a developmentally challenged child (What’s Eating Dimitri) as well as the Chairwoman of the Association of Greek Autistic, Asperger and HFA Adults, Perla Messina, an adult with Asperger’s.
Some of the issues discussed by the panel were: the struggle for the rights of people with developmental and intellectual problems, social integration, dealing with prejudice, genetic research, the coming together of parents and people with disabilities in order to exert pressure in demanding human rights, and the major importance of education in the smooth integration of people with disabilities in society.
Dimitri Eipides, Director of the Thessaloniki Documentary Festival, initiated the discussion by stressing that this event is the most important of this year’s Festival, as it provides the public with the chance to learn about a part of society that isn’t often addressed. Also, people whose lives are affected by such disabilities have the opportunity to exchange experiences and opinions. As Mr. Eipides said, on the occasion of the upcoming Special Olympics the program of the 13th Thessaloniki Documentary Festival includes a tribute with thirty films on the subject.
Marianne Kaplan, speaking in turn, confided that her son, who was diagnosed with autism at the age of 2, faced many difficulties when he went to school, coming both from his classmates and teachers, who “were not very helpful in integrating him. In grade school, Adam experienced exclusion, bullying and ridicule from the other children. He wanted to make friends, but they didn’t want to have anything to do with him, so he reacted badly”. Later, as she explained, during adolescence and after Adam tried various forms of therapy – some of which helped – he managed to make friends and create his own circle. She decided to turn the film camera on her family, thinking that their experience would interest other families having similar experiences, as well as the general public. The film also strengthened Adam’s self-confidence. At the Vancouver Festival he introduced the film and answered questions from the audience; he thus discovered that he was an excellent public speaker. “The film gave Adam the feeling that he has his own voice. It also had a great effect on Canadian society, as the Ministry of Education promoted it in about 600 schools. Parents of children with some form of developmental or intellectual problem felt that they were not alone. And others, who had nothing to do with the issue, learned a great deal. For example, a classmate of Adam’s who used to tease him at school sent Adam an email after having seen the film, and asked for forgiveness, saying that until that moment he hadn’t understood what exactly was going on, and that if anyone else bothers him at his new school, he would beat him up”, Marianne Kaplan said. Today Adam is going to college part-time and is into rap music. “It is a constant struggle; we try to support and guide him, but also give him the space he needs to create a life for himself”, she stressed.
Dan Habib (Including Samuel), decided to make his film based on an idea by a doctor who was treating his son when he was in intensive care. Samuel was born with cerebral palsy. The director said: “Before Samuel, I thought disabled people were less intelligent, with fewer abilities. I felt the need to start my film from this point, in order to tell the audience that I don’t judge them if they believe this, because that’s exactly how I felt. I was prejudiced and did not even know it”. He called his motives for the film selfish. “I wanted to introduce Samuel to people, because how else could we tear down prejudices? These films question the low expectations we have from disabled people. That’s the worst curse. When I speak with groups of parents I urge them to let their children dream, because dreams are part of childhood. Samuel, for example, wants to be a formula 1 racer. Things are developing so rapidly that we don’t know what will happen in the next 4 – 5 years. It is a shame to deprive them of the chance to dream”, noted Dan Habib.
Yanna Kalogeraki, who is featured along with her son Dimitri in the film What’s Eating Dimitri, shared her own experiences with the audience: “Until the age of two, Dimitri didn’t seem to have any particular problem. At the time we were fighting for our daughter, who had been diagnosed with cancer. When we won that battle, the fight for our son began. But we found closed doors, there was no information. I had to resort to the Greek parliament in order to get him accepted in a special school. In the end, the school was really a form of purgatory, with pathetic infrastructures, without a play yard or cafeteria, with rooms that held the danger of causing serious injuries”. As she further explained, the real difficulty was not her son’s problem, but the lack of services to help her deal with it. “I felt I was living in a third world country, where you are judged for giving birth to two children with health problems. Our society doesn’t respect people who are different. We don’t defend them, we don’t care, and we don’t realize that this could happen to anyone. There are good efforts made, but they amount to nothing. Children with developmental disabilities are physically abused, are more prone to accidents, alcoholism and drugs. They are easy to victimize and no one is willing to speak about it”. Ms Kalogeraki expressed her anger at the fact that even today there are institutions in Greece where children are “tied up in the name of their own protection. The children are not dangerous, if we approach them with respect they will let us enter their world”, she said in closing.
“Do you know how many matches the poster for the 13th Festival has? 61 vertical matches and one horizontal. My parents always wanted me to be one of these vertical matches, while I wanted to be the different one, because that’s who I am. Respect me”. With these words, the Chairwoman of the Association of Greek Autistic, Asperger and HFA Adults, Perla Messina introduced herself, expressing the voice of individuals who demand the right to be different. “All people are different, but they are afraid to show it and prefer to feel that they belong to a group. And the parents of these children should think outside the small box set by society, because being different should not carry a stigma. Children that are different are not children that are broken. They can do a lot if they are given the opportunity”. She then noted that there are serious deficiencies in training and institutions, but what is needed most of all is love, acceptance and understanding, because no one knows if some day his son will have an autistic classmate, if he will have an autistic co-worker or if his daughter will fall in love with a person with Asperger’s.
The speakers then accepted questions from the audience, representatives from various associations, parents and people with developmental and intellectual problems.
Fotini Zafiropoulou, vice president of the Northern Greece chapter of the Greek Autistics Association, stressed that “parents are forced to go out in the streets to demand what is self-evident. If our country doesn’t create a national policy recognizing the rights of disabled people to education, work, entertainment and social life, and if society doesn’t respect disabled people, they will always be considered second- and third-class citizens”.
“In Greece we are one hundred years behind. Special schools are a mess; a borderline child can be in the same class as one with a very serious disability”, Ms Kalogeraki commented, noting that in reality no child has the education it deserves. Ms Messina agreed, and noted that at the few special schools there are classes with 10–25 children, with more serious diagnoses or with greater abilities, and they don’t receive any meaningful training. And she added: “A borderline child going to a normal school not only has no support, but has to deal with the parents of the other children who organize in order to remove him or her, a principal who probably doesn’t want the child in his school, a teacher who doesn’t want to spend more time than necessary helping the child”.
An educator asked Ms Messina why she considers herself lucky to have been diagnosed with Asperger’s as an adult. She answered that her parents set the same high goals for her as they did for her brother, and this made her use all of her abilities to the fullest. As she said, the stigma and prejudice hinder many autistic people who don’t reveal their condition to those around them. “The word causes fear. If someone is diagnosed as an adult and tells people, what are his chances of finding work? Even if his abilities are very high, no one will go to the trouble of getting involved. There are autistic people who don’t dare tell their employers, because they are afraid they will be fired”. Referring to a recent event, she said that when an interview was requested from a female member of the association, she gave it under a pseudonym, because she was afraid of losing her job as a speech therapist. “There are many associations of parents and friends, but autistic people usually hide, because of the stigma. Our association is the only one in Greece, by and for autistic adults”, Ms Messina explained.
The conversation turned to the subject of genetic research carried out in order to discover the gene that causes autism. Marianne Kaplan told the audience of having taken part in a conference on genetics, and a young woman told her that with the help of genetics, tests could be developed in the future and if the gene that causes autism is found the pregnancy could be terminated. “I was shocked. Is this how we approach the edges of eugenics? We must be careful in funding such research. We want the world to embrace differences”.
Director George Ingmire, who grew up with a person with Down syndrome, spoke of the strength of disabled people and their families and the possibility of pressing for change. Dan Habib, on the same subject, said: “There was a strong movement that developed in the USA when disabled people parked their cars outside the White House. Influence your neighbor, the school, society, because this is what can change policies. The main idea is to challenge prejudices about what is normal and what isn’t. The biggest problem in relation to integration is the attitude of other people, and this doesn’t depend on available financial resources. It is a matter of taking a position regarding civil rights”, he said, comparing the discrimination faced by disabled people to the racial discrimination of previous decades.
“In every form of disability everything began with angry parents who decided to work together and exert pressure for programs”, noted Marianne Kaplan.
“In Greece, efforts are made but they come to nothing. Parents aren’t ready to take to the streets and make their demands with one voice, because they are worn out by the daily struggle to support their child”, Ms Kalogeraki explained.
Interjecting, Ms Sophia Bonanou, representative of the Greek Association for the Protection of Autistic People, noted that “actions really were started by the parents. For example, the word autism did not appear in laws on health and special education ten years ago. Perhaps today there are laws, but they are not being enforced”.
Finally, the speakers were asked to give one final word about their experience. “My son taught me the value of patience. It was the biggest lesson of my life. I believe that familiarity with someone different helps in the integration of the individual and his acceptance by those around him. The key in this process is education”, Dan Habib noted. “I urge parents to continue to fight for the rights their children deserve”, stressed Marianne Kaplan. “Let us not forget these children”, Yanna Kalogeraki repeated. “And the adults”, added Perla Messina.
Tribute and panel coordinator Elena Christopoulou noted that this tribute by the 13th Festival is comprised of a wide range of different films which creates a sum of images and experiences that help the audience hear the voice of disabled people and learn to coexist with them.
