Why this fight?

A recent incident made me rather upset so I shall start at the beginning. The school that I co-founded with A is based on a few principles we both believe in. The first is that those with autism have a right to respect. Respect for their ability to create, respect for their ability to cope in a world that is completely against them, respect for how despite every educational and social facility that has failed them, they still come to us innocent and not embittered by their harsh experiences.

There is a clear difference between respect and sympathy. Autism doesn’t need your sympathy and doesn’t benefit from it. It needs your help to make a path towards self-sustenance.

The second is that we would not go down the path a lot of disability schools choose to take. Which is the path of the eyewash. A number of students will be put in a group. None of them can function coherently in the presence of the others. No useful training is or can be imparted. They come to school and they leave. And after five years they are no better off. No one does impact studies. But if you did you would know that without assiduous individual attention, you cannot train autism or any disability that has potential for training. Because training right is hard work.

The last principle we both agreed on at the time of founding of the school is that since I was a parent and she was the expert, we would provide the right balance to create the perfect environment for autism to learn. We were not working for money. After 6 years we spent a lot of our own money. This means that the work we do is a labour of love. We give it our best because we want to. Our vision is not diluted. We need money for the school of course but at no time did we take admissions or put up with parents who felt we shouldn’t advertise the autism side of things just because we needed money. Working with parents who are ashamed of their children or the tag of autism meant working with people who would do the community and their child no good whatsoever.

Having said all this, I shall now move to the point I want to make. The other day a huge company which had almost promised us that we would be the recipients of their CSR fund stopped answering our calls and mails. After a lot of effort, we finally managed to get them on a call where the lead lady sheepishly informed us that we weren’t going to get the money. They said our work was outstanding. That it was revolutionary. But our students weren’t low functioning enough. Our training made an impact. But the numbers were small. And since our parents weren’t poor, the students weren’t marginalized enough.

Ironic. Autism is one of the most marginalized conditions in the world. It is a diagnosis which almost guarantees isolation for the rest of your life. Without support and facilities (think of it as providing a wheelchair for a physically challenged person), there will be no change in their lives. Autism also sees regression so the lack of training makes mid and high functioning children regress to a low functioning state ( the labels are not something I endorse — it’s a way of explaining what you as an outsider should be prepared for in terms of behaviour and skilling levels). The children that can be helped thus fall through the cracks and are reduced to being a fraction of what they can actually be. Taking away funding from a school that benefits ‘mid to high functioning’ children is equivalent to dooming them to dependence their entire lives when a real path to independence was possible.

This is why denying facilities is a crime. In Bangalore where corporates make us run around for months to finally say that helping 18 kids in a meaningful way is not important enough (despite our clear documentation of progress), where autism is seen not being marginalized, where organizations with dubious ethics get away with making the right noises and doing literally nothing, what can one lone school do? Toeing the line, working continuously, making our children earn while they learn, leaving a legacy for others to be trained in this methodology — this is not enough. And on some days I wonder — is it time to give up?

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