Being a feminist parent of a disabled child

// 21 April 2016

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I’ve only ever taken one pregnancy test – it was positive and we were overjoyed. This excitement lasted until the 12 week scan, when the nurse asked us to take a seat. There began a pregnancy journey of measurements, scans and invasive procedures that were neither conclusive nor particularly indicative of what was to come. At 38 weeks, our daughter was born – a tiny 5lb heap of joy and terror. Since that day, we’ve been slowly submerged into the unknown waters of being special needs parents.

Early on people tried to be reassuring – “don’t listen to the health visitor,” they’d say, “listen to your gut”. Except my gut was screaming “Something’s different!” It became really hard to watch other people’s children speed on ahead of her, hitting milestones on time and keeping pace with each other. Our life became filled with appointments, more tests and no way of knowing what her future would hold.

She’s three now. She’s funny, sensitive, kind, determined and adorable. There isn’t a single minute of any day that I would want to be without her.

Development is still unchartered territory. Communicating not talking, walking but wobbly. We’re having bewildering conversations about disability benefits and special schools. We’ve learned to sign and are very slowly getting some signs back from her. Our house is filled with play-plans and the frequent realisation at bedtime that you’ve done none of the mandated activities, again. All parenting is relentless, but our experience often feels like parenting-plus. Plus worry, plus professionals, plus missed milestones, plus lots of explaining her to new people.

It was easy at times to get locked into the depression of how unfair it all is. Why us? Why her? But something much more profound struck me – what if I hadn’t wanted to be a parent at all?

The one thing I’d never questioned for a second was that I genuinely wanted to be a mum. Regardless of how astonishingly difficult it is to be the parent of a child with additional needs, I knew that I’d wanted to be a parent in the first place.

I began to really think about this. What if I had been a teenager, pregnant before I’d managed to do any of the things I’d planned out? Or someone who felt their family was already complete? Or a woman who had been purposefully child-free? Or someone whose situation was so abusive, vulnerable or uncertain that a baby had been unthinkable? What if those women had no choice but to become parents to children with special needs? What then?

I’ve always been an unapologetically pro-choice feminist, but until I became a parent I had no idea what the opposite of that actually means. The likely impact of the absence of choice feels more tangible, more comprehensible. To force an unwilling woman to become a mum is cruel, taking no account of that woman as a valuable individual in her own right.

Becoming a parent is a gamble – you have no idea what’s going to happen, or the kind of person you’re going to make. You do, though, at least have a vague idea that nothing’s ever going to be the same once they arrive. And you’re up for that, it is part of the deal. Being a parent to a child with additional needs, and everything that brings with it, has reinforced how vital that old vision is – every mother willing, every child wanted. Anything else is unthinkable.

Jill is a lifelong feminist and reader of books. She works for a charity and lives in the North West

The image used depicts a pregnant woman with the scan of her foetus appearing across her body. It is used under the Creative Commons License.

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