‘Being Stigmatized’ Journal Entry 01:
Scenario: I am reading through the cognitive test results of an 11-year-old autistic boy who is currently attending class V in a mainstream school. His results clarify that he is working with a grade 1 level for English, grammatical reasoning and math. He does not understand statement problems or to analyze and organize the parts of speech in functional sentence exercises. With science concepts, he stood sort of in-between pre-school and grade one depending on the concept tested. It did not look good!
Here was an 11-year-old boy with the comprehension level of a 5 or 6-year-old. I immediately visualized a gaping dark void which was spreading across his brain thus paralyzing the development of the entire brain. As usual, I could not understand why he was in that classroom? Most importantly, what was the reason for the parent to not understand the grave errors made to cause his cognitive development to stagnate?
Well, though I do not like stating this, the fact remains that this is a classic case, something I have seen many times in India. The comprehension is sitting at age 6 while in reality, the child is 11 or 12 and for some reason, this is OK in India. This essentially means that the cerebral cortex which makes human beings unique through the development of distinct human traits like higher thought, language, and human consciousness, as well as the ability to think, reason and imagine, was not being engaged with.
I always cringe in my soul each time I see this happening. According to me, it is an eternal and unforgivable sin — a blasphemy! Here, your choices have ensured that a human being cannot be a human, your choices have taken his ability to survive away from him and he is left at the mercy of others. And when such a thing happens through the hands of a parent, I think it is possibly the worst form of betrayal and all this because we were simply ignorant or too arrogant or trapped in the clutches of a stigma. Either way, a precious life is wasted!
As a professional, I have met adults with autism who have succumbed to mental illnesses and exhibited the worst forms of reactive behaviors that have simply left them devastated. And please stop calling them ‘aggressive’ — they are not violent and aggressive, they are reactive and it is the decisions taken by their environments that have led them to be so. It is time that we all started to take responsibility for these things as opposed to branding a helpless individual as violent and locking him down. It breaks my heart each time I see a beautiful mind wasted and I have sworn not to, at the very least silently watch these kinds of activities going on.
While I was reading the report and feeling hugely devastated from within, I heard the mother tell me — “My child really enjoys being in school, so I do not want to take that away from him. Will you be able to help by working with the school and telling them what and how to do things to help my child achieve cognitive development?”
I refused and said that I cannot do anything like that as the model I have designed requires things to be done in a particular manner and a mainstream school will not be able to manage all the requirements. Plus, since I am training and working full-time trying to test the model, I need to focus on closing the model which limits me in ways I can collaborate. I made it clear that I would not be able to help unless she considered moving him full-time to my school.
It was an honest reply as I am certain that if I can enable this process then we will be changing policy, leaving behind a legacy and eventually doing something meaningful to save the precious minds and lives of those with autism in this country.
But going back to that phrase — “My child really enjoys being in school, so I do not want to take that away from him.”
Firstly, I want to know which child (whether normal or special) does not like being around other children? Yes, of course, I have seen children having transition problems and many who battle with sensory processing in over or under stimulating classrooms. But, my base point is that every child loves to be around other children and that has got nothing to do with his or her disability but, more to do with the kind of environment you are involving the child in. But, one thing that is most evident is that children like to be amongst other children. And if as a parent or professional, that is not obvious then I would worry.
Another important point I would like to make is when the educational environment is not suited to the needs of the child, it is then that, we will start to see delays, aggression, lack of communication, anti-social behaviors, regression and lags in cognitive development. So, why is this even a point of debate? What I am concerned about is, if that environment is really a conducive learning environment for that child or not?
And, if you want your child to be around other children you can take them to a children’s park, or a children’s play area, or a children’s theatre show or a children’s summer workshop, etc. A school is not a park or a workshop, the intention of sending a child to a school is so that the child is given the necessary support to develop cognitively and hopefully one day be independent and survive effectively like all neuro-typicals.
So, has the criteria of assessing if a school is conducive for the child’s development or not, become obsolete? And if it is obsolete, then is that reserved only for those with autism because we suspect that there is no point in educating them effectively or maybe the investment is not worthed as their abilities do not assure the necessary ROI? And the sad thing is that if we are not completely invested which means not by just paying a fee, but also investing ourselves emotionally and intellectually then all we do is keep stacking a pile of money in a bank, make the sibling or someone else a managing trustee and set up a trust to help that individual. Is that really helpful?
This proverb was made for a reason “Give a Man a Fish, and You Feed Him for a Day. Teach a Man To Fish, and You Feed Him for a Lifetime.” We all seem to forget that just by keeping the money in a bank, entrusting your responsibilities to another will never solve the problem. I have met many people in such positions who silently resented their parents for this and many who had to sacrifice their own lives to make it all happen which left them unstable too. The reason communities are built is so such things do not happen and Merry did exactly that with AFA which is proof that the solution to this problem is a community and not individuals.
It is simply too much for anyone to expect such a huge thing out of an individual. So, instead of a poor decision ruining the life of one child, it ruins the lives of many. How can anyone justify this?
And the reason educational systems need to keep improving is so that we are able to help individuals achieve their best potential so they can thrive independently. And only stigmas stop development.
But what was the fault of the children, why did we ruin them because we could not let go of our egos or we could not fight a demon? Is this even a justification? If we do not do that, then are we really doing our job as responsible parents? Or are we giving in to the social stigma and then trying to make ourselves believe that this is the best thing for the child because otherwise, I believe it would not be possible to consciously do something wrong for one’s own child.
Nobody must make decisions based on fear and shame and if you do that then there will be a price to pay for it as well. The question remains — Are we all willing to pay that price by sacrificing our children’s lives? Or must we fight systems that do not help our children and start to build better systems to provide the customized and structured effort that is needed to help our children thrive intellectually, emotionally and socially? Talking about inclusion is useless if we are not willing to re-design our systems to help our children more effectively.
I always tell my teachers, “Don’t you think that we are the monkeys who have been given the job of training these superior minds. Their minds are being designed by a flawless evolutionary process and we like fools are trying to make them like us, which means we are actually telling a sophisticated machine to function like an obsolete one.” Now tell me — who is the bigger fool? Our jobs are to be humble and let these minds lead us and work selflessly to design programs to suit them, not to ask them to go back to the caves!