Disabled or Not?

by | Dec 9, 2023 | Uncategorized | 11 comments

This is not a blog to spread awareness, share information, thoughts or opinions. It isn’t even a sensitization attempt. This is more of a thinking aloud monologue so kindly bear with me.

Just to give context to this talking to the walls blog, I am an Ayurveda practitioner and Therapeutic Yoga trainer. I have been working with parents of neurodiverse kids for two years now. Most of the neurodiverse kids are on the Spectrum (ASD- Autism Spectrum Disorder) , have ADHD – Attention Deficit Hyperactivity Disorder and a few with Down syndrome. Instead of trying to define what Autism /ADHD is, I will rather cite various behavioral patterns that kids display related to these conditions.

Gaurav is a 7 year old kid who plays good badminton, is very good at academics at a regular school , walks on toes most of the times, screams suddenly for no reason or rhyme anywhere , might start laughing for long time with no breaks and therefore unable to play with his classmates or any other kids in the society.

Nishi is a 5-year-old girl with sensorial and textural issues so she doesn’t eat anything apart from Dosa, cries a lot on wearing any kid of footwear at all, keeps moving in the classroom or house incessantly, is brilliant with maths and is homeschooled for the same reasons.

Advik is 4 years old boy who sits and learns at school and home, plays with other kids calmly, listens and follow instructions, does whatever kids of his age can do with motor and other skills. He eats everything, is healthy but doesn’t communicate (talk) with anyone despite of no medical condition related to speech.

Kabir is a tall, big built, brilliant boy of 11 years of age. He interacts coherently, top percentile of academics, social interactions are good, participates in all activities at home and at school, but cannot recognize the difference between hunger and satiation. He just doesn’t know when to stop eating and is perpetually hungry and keeps asking for food all the time.

I can fill pages with such case studies and the examples of spectrum will still won’t cease to astonish and perplex.

Is Autism a disability? If disability is defined by the inability to perform some life essential tasks or the need of assistance to perform such tasks, then it is not.

If disability is defined by discrimination, non-inclusion and biased behaviour, then it is.

In the Government guidelines Autism certification issuance has become functional since 2016 but the methodology to get certified is very long and tedious. Also, the disability benefits issuance is still under construction and there are a lot of grey areas yet to be interpreted.

But more than the official recognition of the condition, parents are weary of even attempting to define this condition as a disability and rightfully so. Parents are bending over backwards trying to take help of as many therapies as possible so that they can get their kids to behave “normally”. Occupational therapy, speech therapy, remedial therapy, physiotherapy, anything suffixed with therapy is their messiah.

Like the cause, the remedy is also unknown for ASD but the parents try very hard to fit in with their kids by minimizing the anomalies as much as possible.

Do kids on the spectrum get equal opportunities? Well, they get admission in normal schools, colleges because a lot of them do well on the academic front. But do they get social acceptance? As shared by the parents, most of them do not. They find it difficult to make friends, retain friends and with growing years most of them become loners and introverts, not always by personal choice though.

I don’t know what should be the approach of the people around such families with neurodiverse kids. I don’t know how should anyone help when you see a mother struggling with a kid in a restaurant because he keeps on roaming around other people’s tables. I have seen helpless parents who don’t know how to explain what’s different in their kids who is seemingly normal and not yet, to other curious people around them.

As a person who is trying to support the kid’s health on the physiological front, I am myself baffled when it comes to helping the parents especially mothers with their worries and fears.

I have only questions which aren’t even fully formed to express in my otherwise verbose mind. I can’t even hope to begin to gather answers about any of these issues.

Interesting fact that I recently learnt is that two decades back, 4 in 100 kids were diagnosed to be on the spectrum, it is now 19 out of 100. Apart from better diagnosis and accessibility of resources, the changed environmental factors, stresses during pregnancy, vaccinations and their safety standards are the most commonly known contributing reasons for the enhanced statistics.

Leaving the post here, with all the unformed sentences in my head, muddled up feelings and the persistent nagging “Why” in all of this medley.

This post is a part of “International Day of Disabled Persons” blog hop hosted by Sakshi Varma – Tripleamommy. #IDPD2023Bloghop. Access all posts of this bloghop at https://tripleamommy.com/2023/11/30/championing-diversity-uniting-voices-commemorating-idpd-together/. Please also visit www.tripleamommy.com