Voices

Why self-determination is important

An illustration of a young woman sitting on a stool, with her eyes closed. She is surrounded by several people, depicted in different shades of grey, who are reaching out their hands to caress her.

People with disabilities are infantilised throughout their lives, and the worst offenders are often their own parents.

A funny thing happens on the journey from childhood to adulthood. Breasts emerge. Voices change. Hair appears in new places.

And many, many parents are amazed. Even though they travelled that very same road themselves and even though they’ve seen it happen – without fail – to absolutely everybody, it still comes as a surprise when it happens to their own children.

Especially if those children have a disability.

People with disability are infantilised throughout their lives. Even when fully adult, with bodies that are obviously sexually mature and even later, when their hair has turned grey, they are consistently referred to as children and ignored, sidelined and trivialised when decisions are being made. Few take them seriously, and their own parents are often the worst offenders.

This is a major mistake on many levels. Quite apart from the insult and the injustice of treating adults like children, such attitudes also serve to jeopardise their safety and their independence. Deprived of meaningful choice-making in childhood and denied the experience of decision-making as teens, they arrive in their sexual prime as lambs to the slaughter.

What can be done? It is difficult (yet not impossible) to undo the damage of a lifetime of learned helplessness, but those of us who work with children can surely learn from past mistakes by not repeating them in the next generation.

Self-realisation, independence and personal safety all begin – believe it or not – in infancy. How we treat a tiny baby, right from birth, determines in large part how that child develops a sense of self. Do we treat her with respect, as a being in her own right with likes and dislikes, preferences and aversions? As a person with a unique body which she has the right to control?

Or do we take over, feeding her on a strict schedule, whether she is hungry or not? Forcing her to pee and poop when we say she should, sleep when it’s convenient to us and perform for the relatives (‘Beta, Jai kar do!’) on command?

Every time we do these things, we are teaching her, inadvertently perhaps but authoritatively nonetheless, that we know her body better than she does, that we know who she likes and who she doesn’t. We are teaching her that she shouldn’t trust her own instincts, feelings or preferences, and that all decisions will be made by us.

For non-disabled children, this phase ends mercifully early. Some damage is still done, but it is impossible for parents to go on controlling kids entirely once they start school. For children with disabilities, however, it may go on forever and never be questioned simply because the person with a disability has so much more difficulty asserting herself and has a harder time escaping parental control.

It is no surprise, then, that such children grow up with little if any idea about sexuality or how to find fulfilment as a sexually mature adult. This can lead to inappropriate sexual behaviour among teenagers and adults with cognitive impairment. For many adults with disability of any kind, loneliness and frustration are common.

It is also no surprise that children with disability are statistically more likely to be sexually abused. Non-disabled children often (though not always) find ways to communicate to their parents that they don’t like that Uncle who insists on holding them too close or demands kisses they don’t want to give; for children with disability, this is much harder.

Yet even knowing that most sexual abuse of children happens at home and by people whom the child knows, we continue to allow such people access to them. ‘Log kya kahenge?’, we justify it to ourselves. ‘Chacha hi to hai.

The breakthrough comes when we recognise that our children are separate individuals with their own destinies, regardless of their abilities. When this belief finds its way into all our interactions with them, we begin to help them to develop the confidence they need to make good decisions, have fulfilling, nurturing relationships, and avoid people and situations which may be harmful.

There are many practical, simple ways to do this – some as easy as habitually offering very young children choices about what they want to eat or what clothes they want to wear. In my next post, I will be sharing ideas for raising confident, resilient, independent kids who grow up to become happy, secure, sexually fulfilled adults. Oddly enough, the same rules apply whether the child has a disability or not. Because ultimately, it’s all about respect.

Featured image credit: Alia Sinha

About the author

Jo Chopra

Jo Chopra McGowan is an American, living in India since 1981 with her Indian husband. A writer and former criminal (peace movement/anti-abortion/anti-nuke organizer jailed in America on a dozen occasions) she has three children. She is co-founder and director of the Latika Roy Foundation, a voluntary organization for children with disability in India. She has written five books on cardiac health and hundreds of articles for Indian and international newspapers and journals. She trained as a lay midwife, is amusingly fluent in Hindi, and loves public speaking, opera, photography, reading, cooking and wine.

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