Self‑Advocacy

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Dec 22, 2015

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The latest buzzword in the world of special needs is Self-Advocacy, the idea that young adults with cognitive impairments (like Autism, Down Syndrome or other intellectual disabilities) can and should speak for themselves. I’ve heard self-advocates speak in conferences to audiences of 500 people. I’ve seen them give TEDx Talks. I’ve watched them argue their points in meetings and in classrooms.

But when I hear the concept of self-advocacy discussed in India, all I can think of is: Cognitive Dissonance. Just yesterday, I was standing in a shoe store in Dehradun, where I live. While my daughter and I waited for her purchase to be wrapped up, I watched another clerk assisting a woman and her teenage son. The boy tried on the shoe that the clerk had selected but he wasn’t able to fit his foot into.

“It’s too tight,” he said.

“No, it’s not,” his mother insisted.

“It’s fine,” said the clerk. “It will stretch.”

We left before I could find out who won, but I was pretty sure it would not be the boy. What did he know? It was only his foot. His mother and the clerk knew what size a boy his age should wear and his self-reported discomfort with the size they chose was unlikely to be taken seriously.

Because what Indian teen is a genuine “self-advocate”?

Parents make the decisions here. We don’t even let our kids decide what they will wear, what they like to eat, or whether the shoes we are buying them hurt their feet. So of course they have no say in what subjects they want to study or the person they want to marry. We choose their careers. We decide who their life partner should be. We know what they should do with their lives.

My husband wanted to study history and had dreams of a career in the IAS. His parents wanted him to be an engineer. So it was IIT for Ravi, though he had no interest in Metallurgy. A Bachelor’s degree and then a Master’s and then an engineering PhD in the U.S. before finally, at the age of 33, he became a self-advocate and said no to his parents’ decisions for him.

This is not a culture which believes in self-advocacy for anybody, let alone young adults, let alone young adults with disability.

So I think it’s THRILLING that this topic is even coming up. And I love that it’s children with disability who are inspiring the conversation.

But let’s not kid ourselves.

Self-advocacy is not some stand alone that happens at 18 or 21, suddenly, out of the blue. It’s not something we can thrust upon children who have been coddled and protected; teens who have never been given a single opportunity to make a choice or a mistake and who don’t really know what it means to fail because they’ve never been given a chance to make their own decisions.

Self-advocacy is a responsibility. It’s something we practice. It’s something we build up to. It’s something we have to get good at over time.

Here in India, we don’t give our children this kind of experience, this kind of practice. And I mean all of our children, not only those with a disability.

I’m not going to dwell here on what’s not happening. That’s a negative, non-helpful way of proceeding. I prefer to focus on what can be done to move toward a time when our young adults really can be effective self-advocates.

The first thing to understand is that it takes a generation. When you are building a house, you don’t start with the second story or the windows or the shape of the roof. You begin with the foundation. This is where we make the case for early intervention.

Starting at the earliest possible age, we have to build a sense of self into our children’s understanding of their identity. We have to help them understand that they are unique individuals with their own take on life, their own ideas, their own versions of reality. This happens in a variety of ways:

We can ask our kids to choose what colour socks they want to wear or whether they want to put their shoes on now or after they brush their teeth. We can ask them what story they want to hear or whether they want to eat their roti with chutney or with sabzi. We can ask them to tell their own stories; we can ask them what they like; or ask them what they don’t like.

In all these seemingly simple, matter-of-fact activities, we are slowly but surely teaching our kids that their opinions and feelings and ideas exist and that they are important. And the natural corollary to this realization is that they have rights. Because there isn’t much point in having an opinion if no one respects it. It’s no fun having an idea if no one is interested in hearing about it.

And then we move on from there. When children fight (and of course they will), we don’t just say shame-shame or gundi baat. We get them to think about how the other child is feeling. We get them to start realising that if I have feelings and rights, so does she. Paradoxically, this builds a stronger sense of self and a stronger sense of the power of advocacy.

In my organization for kids with special needs in Dehradun, we have recently introduced something we call “Knowing Me Better” booklets. These are little compendiums which we fill out with a child and her family on admission to any one of our centres. They detail a child’s likes and dislikes; her opinions and preferences, her special skills and her special needs. They say loud and clear that this child is a person.

Because this is how it happens. Building strong young adult self-advocates begins from the very beginning and must be part of each and every activity we engage in at home, at school and at our early intervention centres. It does not happen on its own or out of nowhere. It’s an organic process and it is a part of a very long journey.

As parents and as teachers, we owe it to our children to make it happen. Tomorrow, and maybe even today.

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Written By Jo Chopra

Jo Chopra McGowan is an American by birth and a writer by profession. She is a former criminal (peace movement/anti-abortion activist jailed in America on a dozen occasions), a mother of three, and has lived in India for the past 33 years with her Indian husband, saas, masiji and assorted other joint family-wallas.

She is a co-founder and director of the Latika Roy Foundation, a voluntary organization in Dehradun for children with disability. She also trained as a lay midwife, is amusingly fluent in Hindi, and loves public speaking, opera, photography, reading, cooking and wine.

See all articles by Jo

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