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Wednesday, January 20, 2021

What is neurodiversity and where does it figure in the spectrum of social justice and human rights

Working towards a just world, one that honours all kinds of minds, requires us to be and do better

Written by Shelja Sen | New Delhi | December 20, 2020 6:50:51 am
social justice, human rights, children, understanding children, parenting blogs, eye 2020, sunday eye, indian express newsChildren live in a world that fails them in so many ways. We need to be better, do better and ensure we’re working towards a more just world which honours all kinds of minds. (Photo: Getty Images)

Tahira, a single mother of a child with autism, shared with me that the society’s obsession with normality had convinced her that her four-year-old child was “damaged” and she, as a mother, was a “failure”. Her words made me reflect on our compulsive need to compare, categorise and label children. The further the child is from that benchmark of “normality”, the more they are ranked as deficient and measures taken to fix them.

Here, I present some ideas in an attempt to unpack the dominant discourses on normality and the countermovement:

Neurodivergence: Each child is wired and inspired differently. Some might struggle with the acquisition of skills like reading, writing, sustaining effort, awareness and responding to their social environment. These might pose difficulties for some children as they don’t meet society’s expectations, leading to typical diagnoses psychiatrists or psychologists might assign to them: dyslexia, attention-deficit hyperactivity disorder (ADHD), autism, etc. It’s important to highlight that in spite of the struggles, neurodivergence is not a problem, as long as there is no accompanying stigma and underlined conclusion of the child being “disordered”, “deficient”, with restricted possibilities or hopes for the future.

Neuronormativity: It perpetuates the problematic notion of a neurohomogenous world where all the neurodivergent children are seen as not “normal” and have to be “fixed” and treated to fit in, be compliant and obedient. Their parents, typically mothers, feel blamed and shamed for not doing enough or being at fault for having children who have flawed neural circuitry. Tahira said, “The pandemic has been a blessing, as I don’t have to take my child out and face society’s harsh judgements for having a damaged child.”

Neurodumping: I have come up with this word in exasperation at the one-size-fits-all approach. A typical example is “special children” which many schools use for neurodivergent children. Many times, when I’ve asked teachers, how many children do they have in their class, they’d reply with something like, “25 +3!” Three being the “special children”, of course! I wonder if anybody has asked these children how they feel about being called “special”? A 10-year-old girl once told me vehemently, “I hate being special. I’m teased in my school and carpool for being special. How do I become non-special?”

Neuroconceal: It is a concept introduced by narrative practitioner David Denborough to throw light on how, by locating the “deficits” in the child, we invisibilise and obscure issues of social justice. Of how it robs them of simple experiences of life that we take for granted — getting admission in schools, being invited to birthday parties, getting acknowledged for their skills and achievements (and not in the “special” section category), being respected by their teachers and other adults and not sniggered at, bullied, ridiculed for minor lapses and ostracised as being “weird”. What strikes me constantly is the day-to-day injustice that neurodivergent children and their families have to face, which becomes a larger problem than their atypical wiring.

Neurodiversity: The term was introduced by activist Judy Singer, who’d said, “I was interested in the liberatory, activist aspects of it — to do for neurologically different people what feminism and gay rights had done for their constituencies.” Neurodiversity culture has a huge global following now, and their basic belief is that being neurodivergent is not a disorder or an illness but a way of being.

Human rights on the spectrum

The biggest problem with the notions of neuronormativity and neurodumping is that it propagates one “normal” kind of mind, thereby stigmatising anything which is atypical. Like the LGBTQ+ movement, we need to question this — who does it serve, benefit and privilege? Who gets invisibilised, obscured and rejected?

The person is not the problem; the problem is the problem and the problem is mostly social: This narrative practice mantra locates the problem where it belongs — not in the child but in the sociocultural context where these normalising judgements decide a child’s worthiness of being valued, respected, included, or to be discarded. In our organisation, we work with children where it’s not the neurodivergence which poses a problem but the consequent struggles with depression, anxiety, addictions, trauma, abuse resulting from a society that robs them of their dignity, safety and basic human rights.

People are multistoried: We have to move away from neurodumping and single-story accounts, whether in terms of labels or in the way we describe children in rigid binaries of good or bad, smart or dumb, obedient or rebellious with not much room for anything in between. A child might prefer to play on her own, building castles with boxes; another might like to fiddle with his fingers as he jumps merrily and recites complex math formulae; and yet another may awe you with her in-depth knowledge of marine life but be completely confused by societal complexities.

People are people through other people: Desmond Tutu’s words remind me, the way we talk to our children becomes their inner voice, and the way we talk about them become their life stories. Children build their sense of self or identity on what stories are being circulated about them at home, in schools. A sobbing child once told me, “I’m a human being, not a disorder”. We need to build communities of concern for our children where they are valued and welcomed for who they are and not stigmatised for who they are not.

Personal commitment: I always have a sense of wonder at the parents’ commitment to do whatever it takes to do the best for their children. But is this just their responsibility? Don’t we all need to play a role in ensuring that our children are not being deprived of their basic human rights? We need to stop apologising for our neurodivergent children and instead practice advocacy — for and with them. Temple Grandin, herself on the spectrum and an advocate for people with autism, had remarked, ‘I am different, not less’. So, the next time, a relative rolls his/her eyes at your “badly-behaved child” or a teacher tells you your child isn’t capable of learning, take a deep breath, smile and tell them, “He experiences life differently. Let me know if you want to learn more about it.”

Children live in a world that fails them in so many ways. We need to be better, do better and ensure we’re working towards a more just world which honours all kinds of minds.

(Dr Shelja Sen is a narrative therapist, co-founder, Children First, writer, and, in this column, she curates the know-how of the children and young people she works with. Write to her shelja.sen@childrenfirstindia.com)

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