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 .