Parental pride in not being normal

Parental pride in not being normal

Disabled children should be praised for their difference and not congratulated on their apparent normality, says disabled mother Jane Renton.

Normal has always been a synonym for acceptable, and so it is when your disabled children don’t look disabled. Complete strangers feel entitled to remark that children are lucky to appear normal.

It’s not just ignorant, it’s insulting. Especially when the parent of those children is disabled too.

Yet, the greatest compliment that anyone can seem to pay a disabled child is that they are lucky enough to be able to blend in.

But what if we want to take our place with the creative and the weirdos, for all the best reasons?

It has to start with the media – social, digital and broadcast. Print media is generally agreed to be the province of those in their twilight years, and really, we need to be starting to educate them young.

Channel Four is making a good stab at making the unusual usual with The Undateables, Paralympic coverage and comedies like Cast Offs and the controversial I’m Spazticus. It’s not much, but it’s a start.

Children In Need has a lot to answer for – the late, great Sir Terry Wogan notwithstanding. The descriptor of ‘need’ places those children at an immediate disadvantage. Who would choose to be in need? It immediately suggests that the life being lived is less rich and interesting.

There is so much that we invest in and take from language that we should be genuinely careful how we use it.

Anyone who has worked in the media knows the value of a human interest angle to get the most out of a target audience, but what does it say about us as a society that we have to fundraise for children to be brought up to a level playing field? At least the playing field is level until the funding to keep it level runs out.

So do we want charity or do we want entitlement on a clearly structured, national scale that eradicates a postcode lottery and shares out facilities that currently centre in the South East?

The current system seems to prize achievements in disability. We have to be extraordinary to deserve the basic services that everyone else takes for granted. Instead of being praised for their achievements as people it seems that disabled children are notable only for their condition or their ‘journey’ in overcoming their condition to succeed.

Of course everyone wants to be the next big thing, but objectively most people won’t be. Just because you are disabled, it doesn’t mean you have to be dazzling or inspiring.

Disabled people can be dull too

If we’re honest, the problem starts with us as parents.

There’s no easy way to learn that your child has disabilities. If differences are highlighted early, there is some time to get used to the idea that your child will require extra support.

But more significant is the fact that we need to have the chance to shift any assumptions we may have of our perfect projected child in private.

The importance of this wriggle-room shift from perception to reality shouldn’t be understated. Overwhelmingly, it’s not vanity that fuels some parents’ disappointment with a disabled child; it is really a lack of positive expectations.

There are a lot of metaphors about coming to terms with your child’s disability in support groups for parents. A familiar one describes a plan to take a holiday in Italy and ending up in Holland. Instead of the olive groves, gelato and sunshine, there are tulips and clogs and windmills. Initially, not going to Italy is a disappointment, but gradually you see that tulips are pretty, and clogs are quirky, etc, etc.

I’m not a fan of that metaphor. My children were anything but a disappointment. Society’s response was a disappointment. Why should a disabled child have to be shoehorned into this parochial version of The Italian Job? They were only supposed to be born bloody normal!

On the one hand we advocate for our children’s rights, and on the other we blog and tweet and network in a way that seems to suggest being born disabled should come with a health warning for both parent and child.

It seems that we are snared in the disconnect between the struggle that we face as parents at home, in schools and in society, and our pride in our own and our children’s achievements. This collective cognitive dissonance is creating blurred lines. What we really need is to define terms that say we are entitled to access work and education, with the same expectations as ‘normal’ people. If nobody is losing out, we don’t need to feel regret at a child born differently. Nor do we need to fundraise.

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