The Myth of the Superwoman with a Special Needs Child
I am the director of an organisation for children with disabilities and their families in Dehradun. Recently, one of our major funders asked us to conduct what they call a “Family Burden Survey.” They wanted to get a sense of the extra difficulties families face when caring for a special needs child.
I sat in on several of the 40 interviews. I was moved by the gentle, patient approach of the clinical psychologist who was conducting the study and impressed with her skill. Her facial expressions remained mild and encouraging regardless of what she heard. There was no judgement, no sense of surprise, no undue concern at anything the young mothers said. All that came across was a calm interest in hearing their stories.
That’s training. Because if anyone had filmed my face as I listened, I’m sure it would have betrayed anguish, anger and amazement. I’m sure anyone would have been able to see I was upset. Because much of what I heard made me horribly sad for the guilt many mothers feel about having given birth to a special needs child. It made me furious to see how isolated and alone these moms feel, as if they are the only ones responsible for that child’s care and development. And what they were still able to accomplish, both for the child in question as well as for the rest of their family, astonished me.
Each one of these moms is like Superwoman. She gets up before dawn and works non-stop, usually with no help in the house. She feeds everyone three hot meals a day. She washes the clothes, does the shopping, helps the other kids with their homework and still gets to our centres with her kid in time for therapy.
And it’s easy to take all that for granted. It’s easy to stand in wonder at the devotion of these women and to remain lost in admiration for their coping skills. It’s easy to say we would never, ever be able to do what they do.
But that would be to miss the point, both for them and for ourselves. Because Superwoman, as much as it may annoy her to point it out, isn’t doing anyone — least of all her special needs child — any favours. Hard as it is to admit, Superwoman, in leaving everyone else off the hook, enables our collective irresponsibility and encourages her child’s dependency. And Superwoman, eventually, falls apart.
And then we’re all in trouble.
Statistics vary, but all agree that couples who have a child with disability are significantly more likely to divorce. Typically, the mom (that’s our Superwoman) is left caring for the disabled child. Parents of children with a disability have a higher rate of depression and moms are significantly more affected than dads. Suicide rates are also higher among parents of children with disability.
These statistics are so worrying that I think we need to talk about them openly. Because all of these statistics have a backstory, and many of those stories center around the mom who believes she has to do it all.
You don’t. You really, really don’t. Not only that: You shouldn’t; you mustn’t. Disability is, in many ways, a gift. It invites us to challenge the popular and ridiculous idea that we can do all of the caring and helping on our own. For women, particularly in India, disability offers us a new take on life. It encourages us to reach out to others, to admit that we need help and to insist that those around us do their part.
And the best thing about this idea is that it’s better for our children. One of the moms interviewed said she was so wrapped up in her special needs child’s care that she didn’t have the chance even to eat her own meals. Her physique bore this out: She was frail and weak.
Yet, when I was introduced to her child, I met a boy who was able and lively and certainly ready to feed himself. Yes, he had a disability — but so what? The last thing he needed was to be coddled and cosseted and prevented from doing what he was capable of doing. And the last thing his mom needed was another chore on her list.
Because eating should be fun. It should be a social event we look forward to, one about sharing good food and meeting a human need. It should never be a battle or a contest or — God forbid — evidence of what good mothers we are. I wanted so much to tell this mom to stop being a martyr and start enjoying her child. To put his food in front of him and hers in front of her and, then, to enjoy lunch together. Yes, he would make a mess. So what?
Disability is messy and human and endlessly demanding. Once we recognise that fact, once we stop thinking of ourselves as pure and perfect and responsible for the universe, we can get on with our own lives.
We do our children no favour by sacrificing everything for them. They want to be independent and self-reliant just as much as we do. They want to develop skills and competence. They know, perhaps better than anyone, that they will outlive us. We aren’t helping them by making them dependent, however much it makes us feel important and needed.
My plea to parents: Let go of your image of yourself as your child’s refuge and strength. Embrace her competence. Acknowledge his independence. Nurture their delight in themselves. In the end, that’s all they really have.
Interesting perspective. Also useful for parents of disabled children. I have a disabled son, and one thing I have done is set shame aside and accept any and all help I have received or have been able to procure. Whenever there is an alternative, I spend time away from my son (usually means another room while maid or my mother look after him). This gives me much needed space to chase my own goals. I have accepted gifts of money as well as things for both of us. I have hired a maid to help with the household work. In short, everything I can delegate, I have without the slightest shame or guilt. This leaves me energy to be mindful and do things others cannot. Our marriage did end, but the resulting separation is an improvement in how our days pass. I am happy to say that by accepting help as much as I can, I can confidently say that we spend most of our days with joy and totally adore each other. For most of the time there is no sense of a burden, though of course the responsibility never truly lifts from my shoulders. It is reading your piece that made me realize how much of our daily joy is because I did not try to do everything to myself, indeed went ahead and got as much help as I could to the point of giving myself all possible breaks. Because as I read this, I realize how much we are conditioned to not just care for our children but also look good and be self-sufficient doing it, which in my view is very difficult to achieve. What I did is a sort of hack. Simply ignored whether I deserved the help or not and accepted it at all opportunity. But I do think this needs to be done more consciously – with the awareness that the mothers are in for the long haul and merely getting through the moment is not enough, they need to ease their lives enough to be able to sustain it year after year with no end in sight and grab all opportunities to get a break, be themselves, nurture themselves. And it helps my son that I am able to play and experiment with new ways of helping him learn to move instead of cooking lunch – because I accepted more money assistance than for just “expenses” and then used it to get a solid 3 hours of help daily around the home. Not just does the darling woman do the work I would have been doing if not for her, she actually pampers me a bit while at it – which makes all the difference, From a harried mom, I am instantly someone with the energy to chase potential and I have at least once a day someone bringing me tea where I sit.
Vidyut, I only JUST saw this wonderful and incredibly helpful response. Wow, thanks so much for taking the time to write it out. You’ve helped me so much (I have a PhD in Guilt!).
Where are you based?