Wednesday, December 3, 2014

Inclusion and disbility

                               Recently , I attended the India inclusion summit, and was accompanied by two mothers  enroute to the venue, and whose kids were in the age group 7-8 years. The conversation soon veered to  discussing kids. One mother said "I was worried my son should wake up before I leave, and I had prepared him yesterday that I would be going . I was so relieved when he woke up before I left and told him I will be back in the evening." Immediately the other mother asked her  " Does he understand the concept of Evening?" And I thought how weird, how challenging is  the problem of autism. I was for the the most a mute spectator and most of the time I tuned out. As parents we know the level of preparation that goes into every event, or change in routine. They were discussing medicines, therapies....... And one mother said ,"My son wanted a different chapati, and kept shooing away the chappati I offered him. I knew fully well what he wanted but waited for him to come up with the expression , different". In between one mother butted in and said " He is aware of many things, he knows all the latest versions of cars in the market, but...... he has to stim, he cannot sleep in the nights. The list is endless.
                               Sadly to speak with so many so called "virtues" our kids are marginalised to the sidelines of the society. There was hardly any representation of autism in the summit. To be fair, the summit itself was superbly organised , well presented. There were many truly inspiring stories, thought provoking speeches. The morning half especially was emotional.
                                        One of the speakers mentioned all of us have disability somebody cannot sing , somebody cannot swim, somebody has no money. yet we all live. I understood the spirit  with which he said and applaud him for his viewpoint, but then I also wanted to tell him that is hardly a disability. For autistic adults, to be accepted in society , having themselves heard, is a huge huge challenge and cannot be trivialized. An adult with cerebral palsy. an adult who is blind , handicapped all of them can advocate for themselves, but not an adult with autism. I hate it when people use euphemisms and call this population as being differently able, gifted, because it involves not just hardships for their families but to them as well. When there is one person with autism in the family, the whole family lives, eats , and breathes autism. Simply because it cannot be any other way.
                                                 I liked this particular speaker an ex army officer who is a paraplegic , and said how he was asked to be on some disability committee. And he asked why disability committee, I can serve on other committees as well that address different issues. I don't consider myself disabled. Another lady said she feels wheel chair "liberated " and not wheel chair "bound". So much for the indomitable fighting spirit.
                                       Having said good outcomes do come out from such events. I got to hear a lot of progressive thoughts, corp orates trying to include more  disabled people in their work force. Arnab Goswami has pledged to take it up as a cause and give it a lot of media coverage.The following year a  mother  whom I hold in very high regard has promised to put her son on stage  and represent the ASD community. And I am so much looking forward to it.  
                         
                             This is  a song very close to my heart from the movie Chak de. I can do a bad translation of it.It says  do something, hold on to some values and do whatever it takes to achieve it.
 Kuchh kariye, kuchh kariye, nas nas meree khole hay kuchh kariye
 jid hai toh jid hai jee
Koyee toh chal jidd phadiye, too bedarayiye ya mariye .

                                     
                               

3 comments:

Anonymous said...

Hi., this is to inform all the parents of special children who are looking for regular school and special educators in Bangalore to be aware of people who loot parents for their benefits. We have experienced such people and would like to share there is one special educaor in Kasturi Nagar and her name is Meena. She is a money minting person and only bothered about her income. she do not have remorse about developing a child. She plays mind game with parents and created panic in parents about autism. She would tell that she will integrate in regular school. The regular schoo is in Babusapalya. Both the school and Meena are joined hands to make money. There is no use of joing that school for special kids. Kids are taken care like animals. Meena does not know anything about special education or ABA. Her trainees also doe snot have any clues about autism. They are only 10th passed. Meena takes inputs from google and teaches. If the child does not have any behaviour, Meena will induce the behaviour in the child and the child will become restless through out and anciety develops for the child. Parents please do a through survey about special educators and take a decision.

viji said...

Thanks for the info. Hope you have pulled your child out from the school.

Anonymous said...

Any info on good inclusive schools in Bangalore. We live in the US and planning to move back to India next month. I love your blog and you both are such amazing parents Ramam is a very blessed child with such great parents. We have a 5.5 year old boy with autism . Any info you give will be very helpful thanks

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