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ADD and Reclaiming Preferred Identities

A letter to young people living with Attention Deficit Disorder

Written by Shelja Sen | New Delhi |
December 27, 2021 6:00:07 am
latter illustrationADD is neurodivergence, not a deficit said Shelja Sen.

Dear You,
I have to admit at the outset that I have a difficult relationship with the label Attention- Deficit-Disorder (ADD). I do not think it is just the problem of attention (or the H for hyperactivity that sits in the middle at times), nor am I comfortable with the deficit lens, and I definitely do not think it can be explained as a disorder. But, for the lack of a better word, I will use ADD.

I might have a difficult relationship with the label, but I have an intimate, long-standing relationship with people with ADD. Having a son and husband who struggle/thrive with it and working with children for more than 30 years has helped me gain lived experience and hard-won knowledges that no degree or books could have ever offered me.

If you have met one person with ADD, you have met one person with ADD. Nevertheless, I would like to share some themes that have really stood out to me while living and working with ADD.

ADD is neurodivergence, not a deficit: Society has built these iron casts expectations that it wants all children to fit into — to sit still, pay attention and do as they are told. In my understanding, struggle with time, attention, and conformity are the biggest challenges that children with ADD face, the very things that are seen as high currency for success in our hustling culture. For example, take Krishna, whose ADD in school had earned him the labels of being “lazy,” “unmotivated,” and his curiosity misinterpreted as “defiance.” But what was being missed out was that Krishna was trying a lot, he was doing all that he could to please his teachers, but the school’s assembly line learning with timetables, classwork, homework, exams, went against his wiring. He liked to question, ponder, discuss, connect dots to make sense of his world in his own time. He was a scuba diver in a herd of jet skiers.

ADD like an X-ray reveals the fault lines: A single story of “has potential but does not try” would follow Krishna through his school life, robbing him of his sense of agency, leading to despair with, “What’s the point anyway?” He would internalise society’s idea of success/failure and shut himself off from the world. He would not be alone in this isolation as we are seeing this trend in millions of children, youth across the world. They stay in their rooms, refusing to go to school/college and spend their time sleeping, numbing their pain with screens, various addictions and other self-harm. The Japanese have also named this phenomenon as Hikikomori. It is so easy to locate the problem in these young people rather than seeing that, maybe, it was the only option for their survival. As Rahil explained to me, “My room is the only place I feel safe.”

ADD highlights issues of social injustice: Children are obviously blamed and judged for ADD or even Hikikomori and intense treatment planned and mapped out to fix them. But are they the problem? To draw a parallel, suppose during the peak of Delhi’s pollution, we only focused on treating children’s lung problems without looking at the polluted air that was inflicting damage. No amount of chest specialists, medication, nebulising would help us get anywhere. Where and what is the problem? Is it residing in the children’s lungs or in the belching industries, crop burning, heavy traffic and negligent governance?

I met Krishna when he was 21 years old and was struggling with depression and suicidal experiences. I learned from his parents that as a little boy Krishna was an extremely curious child who loved to read, learn about space, marine life. But over time, his stories were not seen as newsworthy enough and did not make headlines. They are lost in the fine print of society’s definition of a good student until he became invisible and withdrew to his room.

We explored, together, how it was not ADD as such but the stringent and oppressive ideas of success that had robbed him of a sense of agency and meaning. In our discussion, we talked about what he called the “i3” work:

Internalisation of the problem — “I am the problem.”

Invisibilising the issues of social injustice — “I am to blame.”

Isolating themselves — “I am unworthy, unlikeable, and I do not belong.”

Reclaiming preferred identities and future

Collective: Feminist, LGBTQ, civil rights movements have taught us that nothing can be achieved at an individual level. We have to come together to raise our collective voices through protest campaigns, spoken poetry, dance, writing, podcasts. Various forms of acts of resistance to our cultural standards of “normality” and “worthiness.” I asked my husband what had helped him, and he said, “Doing what I love doing, choosing to be with people who have faith in me and advocating and never apologising for my ADD.” So, for all the parents out there, let’s keep the faith and stand up for our children.

Agency: Think of the recent time when you did something, no matter how small, that you entered with a sense of curiosity, joy, and which aligned with what you value. What made you decide to do this? What intention or purpose did you have? Do you remember a time in the recent past, maybe two to three years ago, when you did something like that? Or maybe even as a little child? What are the common threads you see in all of them? It has been fascinating for me to see how many young people with ADD find a sense of agency with work that is connected to nature or requires hands-on skills for e.g. deep-sea diving, sports, mountain trekking, wildlife photography, conservation. The very activities that are diminishing in our school curriculum.

Value and hopes: As you went through the questions and reflected, did they throw light on what matters to you? Do they tell you something about what sustains you and what is important for you? If you continue taking these steps forward, what possibilities might open up? And, as you answer these questions, there might be a voice that might dismiss these steps you are taking, or even your hopes as “worthless,” “will make no difference.” Observe it, give it a name and watch out for it. In our conversation, Krishna shared with me, “I had let my worth be decided by some random social expectations. The steps that I am taking might seem trivial to the world but they matter to me.”

So, grow your tribe, hold on to what is most precious to you and do what it takes to reclaim your preferred life. One micro-step at a time.

In solidarity,
Shelja

(Shelja Sen is a narrative therapist, writer and cofounder, Children First. In this column, she curates the know-how of the children and the youth she works with. She can be reached at shelja.sen@childrenfirstindia.com)

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