Glamour model Katie Price has done it again. And by again, I mean risen again in my estimations. I call her a glamour model because that is what she is known for. But, for me, she is more important as someone who talks openly about raising her disabled son. There is very little conversation that is real, honest and true about raising a disabled child.
This week she was in the news again in reference to a remark she made on national television about how, if she'd known about her son's disabilities, she probably would have aborted him. I wrote about it in the Guardian:
The context – that she didn’t know anything about raising a disabled child and would have assumed that she couldn’t cope – was ignored. And the sentence that directly followed her admission, “But now … if I got pregnant again and they said your child has disabilities I would definitely keep it,” disappeared down a well of self-righteousness where no baby born to any decent parent would ever be aborted because of a disability.
But, the truth is, when parents discover their child will have a disability, almost every baby is aborted. Over 90% of women who receive a prenatal diagnosis of Down’s syndrome have an abortion. Katie Price only said what most women feel, along with expressing the regret that pregnant mothers have these fears at all.
I appreciate Katie Price's frank words on this subject and other things she has said and done concerning disabled children. In contrast to her, the language generally used regarding these children is empty, pitiful and misrepresentative.
Our skewed conversation all too often places the word "disability" alongside "suffering" or "abused", or simply replaces it with "scrounger". A conversation in which the government's idea of supporting disabled children is to cut their support.
The language that surrounds disabled minors is unhelpful too. These kids are described as “angels” when they should be called what they are: children. Children – the mischievous, annoying and delightful curiosities that they are. Parents are held up as martyrs “blessed” with special children or deviants who deserve what they brought into the world. We are just parents. We are fallible, and we bake cookies.
Until the conversation changes, until the attitude of the government changes, we will be left here: a place where the pregnant mother of a disabled baby is ushered into that ominous, quiet room in the hospital and told in hushed tones the bad news.
Because this is the real issue. It shouldn't shock us that women are choosing abortion over raising a disabled child, when the real issue is that they have no language, no context in which to imagine a life with them.
I do not begrudge a woman's choice. I am pro-choice. I would never judge a woman who made that decision because they felt they could not handle it. In many ways, I agree having lived with the challenges of raising a disabled child for over six years. And, admittedly, six years ago I was in the exact same place, knowing nothing, having no context and zero understanding.
Or, as Katherine Kowalski, mum to a disabled boy who I have had the honour of campaigning alongside, said in her moving post on the subject, "Perhaps Katie’s point could have been articulated better, but when I heard what she had said I knew exactly what she meant. She meant that she would have been afraid."
Is it possible to make a reasoned choice of this magnitude when all you feel is fear of the unknown? It's not possible to make this choice outside of the context by which we present these children's stories and the assumptions that society makes about what our lives are like.
And so, having been given the opportunity, I am glad to add my voice to that cacophony of bluster and self-righteousness that amounts to debate about this, and simply say: I love May. I love my daughter and I can't imagine my life without her.
You can read the full article here in the Guardian: Like Katie Price, I wanted to run from my disabled child -- then love trumped fear.