STIGMA DIARIES OF AUTISM IN INDIA


Artwork Courtesy: ATIF FAISAL, an Outsider Artist and a dear student of Akshayee.

As a professional working with intellectual disability and co-morbid conditions, one of the most important tasks is to sense stigmas and help caretakers and the wider communities battle them effectively by initiating them on to the magical path of ‘ACCEPTANCE’. ‘Being stigmatized’ mostly leads the primary caretaker to make incorrect decisions that directly affect the development of the child. Hence, it is imperative to identify it, challenge it and uproot it, as that would be critical to the levels of success one could achieve with the child.


In Scotland, acceptance of ‘WHAT IS’ comes organically and that is why it was such a different world. It is in India that I really understood the depth of damage ‘being stigmatized’ caused. Stigma is the largest and toughest demon we fight on a daily basis. Most times, it is better to share these demons and leave them loose in the open. Deepika Padukone did that with the ‘depression stigma’ and we, at SK do it with the ‘autism stigma’. Unfortunately, unlike Deepika and many battling depressions, most with autism do not have a voice and are not able to express because of the condition itself. So, it becomes possible for others to then assume and say or do as they please.


Unfortunately, many forget that people with autism, may not be able to express but they are definitely able to understand a lot more than one would like to think and also, they absorb much more than most neuro-typical humans. They are closer to plants and animals, more universal in character which is why they have many other in-built mechanisms that help them understand what is happening in their environment and how their own are treating them or even viewing them. We all forget this!


In our arrogance of knowing it all, we assume that they are in some way beneath us and that is where the stigma essentially lies. It does not matter what we say or how, how many times we stop people from attaching the label, the truth is that the label is simply a scientific way to help everyone understand how to treat that person and ensure further healing. And if we did not care about science then I do not believe we would have even gotten beyond the time of plagues ever. For what it is worth, science is a necessary evil at sometimes and most times an ever-accessible blessing too. Again, taking something like this too for granted is characteristic of a stigmatized society.


Stigma in India wears many masks and I am not surprised because a culture like ours is capable of creating a monster with multiple heads. The most dangerous thing, however, is when these stigmas are cloaked in concepts of inclusion, equal rights, open access and social/life development. I write about and against it and hopefully will in process target to help many ‘become unstigmatized’ in the true sense of the term.


Taking the moral high ground is easy but working pragmatically and providing the best solutions despite all odds stacked against one whilst ensuring the best interests of the PWD is where my focus has always been. And there is no way I can do my job effectively while stigmas are being confused with concepts that actually were built to foster an ‘unstigmatized space’ for the development of those who are marginalized. We must never mistake one for the other and unfortunately, that is exactly what we are doing in India.


The core of a stigmatized society is the fact that it chooses to be biased, to pass judgment without caring for facts and to build barriers based on ability/disability, educated/uneducated, neurotypical/special, success/failures, etc. Not very far from the demons of caste, creed, gender, religion, wealth and profession-based biases we have fostered for so many years in this country. So, we are simply following tradition I guess, by being truthful to the stigmas and only promoting their existence by feeding them further.


But have we forgotten that hiding demons keep them strong and safe, they feed off our fears and anxieties and we never realize that? Letting them out in broad daylight will fill you with courage and will magically diminish the demon too — you will see, one day, hopefully. Here is an attempt to do just that. This thread will share stories in the hope that one day we will all together vanquish this demon and allow autism to live, laugh and love freely too.


‘Becoming unstigmatized’ is a very trying and a very rigorous process, it will require one to let go of their egos, do much unlearning and become accustomed to the idea of submission to the eternal truth and like Buddha be able to process the truth just ‘AS IT IS’. Believe it or not, this is a challenge for many of us, but the journey is necessary because by ‘being stigmatized’ all we achieve is the failure of many who are dependent on us to make the best decisions for their survival.


And, if we are incapable of ‘being unstigmatized’ then we really need to re-evaluate ourselves as parents, professionals and the larger community and accept that we are still stuck in the rut of stigmas and hence, our children are not able to achieve their true potential. All we have to blame is us, not the autism or the disability! All we have to blame is our egos that did not allow us to make the right decisions for our children and all the blame lies with us when all we are surrounded with are totally dependent individuals on their siblings who also then sacrifice a lot of their lives paying a price for the decisions that we made ‘being stigmatized’.


I will be writing a series based on ‘being stigmatized’ in the hope of making the symptoms clear for those of you who really want to see the light and are actively looking to be helped. Like they say, one can only take the horse to the water, one cannot make the horse drink it. If you are stigmatized and being ruled by this demon then the first step is to recognize the symptoms post which you will need to actively work to disintegrate and devalue it. It is not very different from learning to accept loss, but it is only after we have accepted loss that we will also learn to start building defenses and creating solutions to battle losses with courage.


Remember, you are designed with only two mechanisms — ‘the fight and flight syndrome’, now what matters is which one you choose and when you make those choices. Nothing is black or white in this world — what matters is if you are making the right choice at the right time for the right reasons. This is the true mantra. Running away or denial is good but only if it is done for the right reasons and prudence is key here. Also, let’s not forget, we have many permutations and combinations too. What matters, is if you are ready to rid yourself of this demon and see the truth as it is, so you can make decisions for the one you love without any biases, any fears or any anxieties. The best decisions are driven by courage, confidence and conviction — that is why positivity is key.


Do follow my stigma dairies to understand the subtle signs and start to analyze your patterns and most importantly break them and lead yourself towards freedom. I wish you a fulfilling and truly revolutionary journey!

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