“Congratulations, nothing is wrong with you! You are ‘Normal’…”
By Ritika Gulyani
The past few months have been a whirlwind of an affair for me and my family. This was not unique to us but rather happens to every student completing his/her schooling and planning to enter the mighty and confusing world of college. Filling up forms and discussing prospects for days on end left everyone extra confused, especially for my brother, who was in the centre of this whole rigmarole. He also happens to be autistic, which makes the process a little bit more difficult. His entire school life, my mother has been the primary parent, who has gone dutifully to his class teachers every year in school and told them about his condition and asked the teachers to be patient with him. She has also been aghast, when one year a teacher suggested she would make him sit next to her table everyday so he could be monitored. My mother has never shied away from his condition, neither in front of family nor in conversations at home. But the suggestion that he be pulled out from the class and made to sit separately, especially at the age where he did not understand that he had a condition, made my mother very uneasy. And most importantly, he did not need that special attention; he just needed the teacher to be patient and give him a little extra time, not just with studies, but with everything around.
However, the time came when he questioned what autism was and how he was different. He was duly told what it was. And I’m sure he has googled it many times since then. School years sailed by uneventfully and it was only before the board exams that he was asked to undergo an evaluation, so that he could get extra time. (And in all fairness, he is a slow writer so we were glad he would get this benefit.) The evaluation however was the first time that he had to bother about going through medical evaluations, and to put himself in a medical setting, where he would be treated like a ‘patient’. He was expected to undergo procedures that his other classmates were just not bothering with. He was given a diagnosis of having dyslexia and dysgraphia, with no mention of autism and based on that he proceeded to give his exams with a provision of extra time.
Fast forward a few months and the result came out, where he managed to score decently well in the boards. For college admissions, under various heads that offers reservation for seats, the category of Persons with Disabilities (PWDs) is one of them. To be categorised as a PWD, one needs to undergo a medical evaluation from a government hospital and if it is found that the disability is more than 40% then a certificate is issued. It is on the basis of this government medical certificate that a reservation can be availed. Keeping this in mind and with a hope that a PWD certificate might help him in acquiring a college seat, my parents visited a government hospital in April this year. Upon reaching the hospital, they were first brushed off by being told that the process should have been initiated in the previous year itself. After much coaxing, they agreed to conduct the test, whose result says that he positively does not have dyslexia or dysgraphia, as his 12th class assessment stated, and that his IQ was one point higher than what was considered the benchmark for mild autism.
The reason for this delay from our side to avail the certification was that the new law on disability was passed only in December 2016. While autism, along with other conditions like cerebral palsy and mental retardation, has long been recognized as a disability under the National Trust Act 1999, this legislation was more concerned with the guardianship of such individuals, while the new 2016 Rights for Persons with Disabilities Act recognizes autism as one of the categories of disability against which seats would be reserved in academic institutions.
At the end of the entire process however, we did not get the required documentation for the certificate, which in a way was a good thing. We did not want that he be labeled as having a difficulty, which he did not have. But on the other hand, it would have been good if we could have been issued some documentation specifying the difficulty he did have. We did not want to make a binary choice, but rather wanted an option that stated things as they were.
Additionally, another thing that bothered us was that the doctor who administered the tests told him, while he was leaving, that nothing was wrong with him and congratulated him on being ‘normal’. I have never seen him aware of his condition more than after that day. He was visibly upset when the doctor said that. He even confronted my mother, wanting to know what ‘normal’ meant. That was the day the distinction between ‘normal’ and ‘abnormal’ crept up on him. He was different and he knew that; he was slower, did not get certain puns, sarcasm, could not make small talk, and so on. But that day he was made to realize that he might not have been ‘normal’ all this time.
Making peace with the marks he had got, we admitted him into the first college he got a seat in, but, of course, his admission was not in the subject of his choice. We just did it to secure a seat. Over the next fifteen days, we shuffled between three colleges, applying and filling the forms, submitting certificates and mark sheets, withdrawing those originals; this was repeated several times. He finally got the subject he wanted, incidentally the same one he had scored less in, in the third college. During this process, there was one college where we could not accompany him inside the classroom when the forms were to be filled. I had accompanied him that day and was a little concerned. But then I thought that I was being overprotective and told him to go inside and call if he had any queries. After two hours of being inside, he called saying that there was some problem. I asked him to come outside and explain the problem to me. He told me that they shouted at him for not knowing which subjects he wanted to opt for in his first year. Was that really something he was supposed to know? Was that something that any fresher knows? I know I did not. I told him to keep his cool and go back and just finish the process. He did do that but not before he was once again made to feel that he could not follow instructions quickly enough. He was so petrified of this college that he literally prayed that the next list would give him another college. Thankfully, he did get through another.
He is finally due to start his college in a few days and all of us at home are concerned about how he will manage. No, he has not been a sheltered baby and has been fairly independent in travelling, even to his school and back. He will love his classes, this I am sure of. I am concerned about his environment, and the people around. Will they understand him, and care enough?
What we have given him at home is an environment where he takes his time to do things. It has now become our second nature. But did we really do something so great? Shouldn’t everyone around him do the same? Since he is not on any medication or undergoing therapy, there has never been a time where traditional care needed to be given. Also, he understands what his limitations are and lets us assist him during certain tasks (talking to the bank manager for example). And when I say, he ‘lets us’, I mean exactly that. He is completely aware of his differences and just sees it as me doing it differently rather than him being unable to do it. He is close to my mother and often confides in her, which is partially or rather wholly due to the fact that she is the one who spends the most amount of time with him. Sure, my father is present, but not in the way that my mother is. In that sense, she fits neatly in the mould of the ‘care-giver’. But I think his most important caregiver is himself. Now that he is aware of his condition, he takes steps to not get stressed, and doing so helps him in coping with his anger issues as well as methods to socialization better. What he really needs from the world around is some care mixed with good amounts of empathy and patience. Just a little time, so that he may first understand what is going on in his mind, before he can share it with us.
Photo-credit: Shreyas Gulyani, ‘Leaving the old behind; awaiting the new’
Ritika Gulyani is a PhD scholar at the Centre for the Study of Social Systems, Jawaharlal Nehru University. She is currently working on deaf education, employment, and is interested in mapping out identity issues among D/deaf individuals. She has previously submitted her M.Phil. dissertation titled, “A Comparative Study of Disability Policy in India and China” at Jawaharlal Nehru University.
For more stories, read Café Dissensus Everyday, the blog of Café Dissensus Magazine.