If the world saw what we see

Contributed by Annie Dewhurst

Once upon a time, I was told that I wouldn’t wish that my daughter didn’t have her disabilities, as then “she wouldn’t be Hannah”. This was early along in my SEND parenting journey and that unexpected and unsolicited comment really threw me. I wasn’t quite sure how to respond. Even now I think well really, where do I even start with that one? But now I’d try to reply I think and I’ll try here.

My initial riposte would, I hope, be better now, for a start. I’d query what knowledge they possessed which led them to make that assumption.

Then I’d probably go on to educate and advise that I love my daughter unconditionally, but wouldn’t want her to have all the challenges she has, or for her to be in pain. I wouldn’t want her to have difficulty expressing her wishes and needs. I wouldn’t want her to self-harm or harm me. I wouldn’t want her to be confused and anxious about the world around her and, quite simply, just like many other parents, I wouldn’t want her to experience all the negative things, and people, that she does.

So would I want to change HER?

Absolutely not! Would I want all those challenges not to be there?

ABSOLUTELY, yes!

Would she still be Hannah? Yes, of course, but without all the things she faces day in and day out. Without all the things that hurt my heart every time I see her struggling. More importantly, without all the stuff that hurts her.

There are a select, wonderful few individuals who share a similar adoration of her. There are also a handful of people who share a similar awareness to mine of her strengths and needs. They see her for who she is – a glorious individual in her own right. They see how she grasps life and gives it a good shake.

But there are others who see only what they want to see. I’ve been relieved at times that she’s not been aware of how people have acted around her. For instance:

The man, sniggering along with his wife and daughter (I’m guessing here, they looked related) at Hannah’s verbal stimming whilst we were sat in a motorway café. The man didn’t give me eye contact, so the wife copped for my death stare. I’ve developed a rather magnificent one over the years!

The children pointing and laughing as we walk by loudly declaring ‘Look! That big girl was in a pram’.

The woman who literally (I kid you not!) put her face IN Hannah’s pram just to get a better gawp. I won’t share what Hannah’s father’s response was, just know that it comprised of some rather *coughs* colourful language.

Or the wide-eyed parents, clutching their poppets as we walk by as if we’re contagious. On these occasions I am SO tempted to either;

(a) get within reach and let Hannah touch said family with her deadly diseased hands (probably not deadly actually, but she has a penchant for sticking a finger or two up her nose, so…)

(b) purchase a cowbell, hang it around my neck and loudly declare “UNCLEAN, UNCLEAN. MAKE WAY FOR THE UNCLEAN” as we pass by. (This may actually be apt at times, as I do often venture out without checking my appearance after my child has pawed me at mealtimes, always a messy affair, I must say!)

What do people see? Why can’t they see Hannah the way we can? Instead, we’ve learnt to joke about the silver linings. For example, we are VERY good at clearing a public playground. Every cloud and all that.

Maybe they hear her before they see her and don’t want to see her…because they don’t wish to acknowledge that there are people, equally as entitled to be out and about, who are different to them.

Maybe they’re fearful or uncomfortable. I’ll never know unless I ask them. But to be honest, I’m too long in the tooth these days to be bothered about whether anyone is feeling awkward. Not my circus, not my monkey.

However, there are people who see more. Those special few that we’ve met over the years; wonderful people, who aren’t afraid of looking and giving a genuine smile or striking up a conversation. When they talk TO Hannah, it makes me want to hug them, mostly I’ve refrained as that could get a bit awkward mind you.

Maybe they too walk a similar path. I must admit, when spotting a fellow SEND parent, I am tempted to do some kind of gesture in ‘Team SEND’ solidarity, like that three-fingered salute Jennifer Lawrence does in The Hunger Games or something. I haven’t though.

Perhaps they’ve met disabled people before or worked with them. Perhaps they have people close to them who have additional challenges. Perhaps they have disabilities or faced adversity.

Maybe others just see a kid in a bigger than ‘normal’ (whatever normal is) buggy.

Maybe, they see a young lady, having some help whilst going about her business. What do I wish the world could see? It’s simple really. Our children, our loved ones, for who they are. In an ideal world, it’d be nice if adults were educated about disability so they could then educate their children. Maybe that’s too much of a big ask though. “What breeds will out” as an old colleague of mine used to say.

And then there are the many and varied professionals we’ve come across over the years. Some do genuinely see her, I know that. Others see a diagnosis or something to be fixed. I guess that’s a tale to tell another time.

What I am sure of is that people don’t (can’t) see the challenges she (and I) have faced throughout her life.

They haven’t seen the tears, the utterly crushing blows, the challenges, the sleepless nights, the fear. Perhaps they’d think before sniggering. But, maybe not.

Nor have they had the honour of seeing how she faces life head-on and embraces it; despite what life and her disabilities throw her way. Nor do they know that she accepts people just the way they are. And that’s a shame. Because they could learn a lot from her.

I know I have.

Annie:

Annie writes a brilliant blog on Facebook, which is full of her candid and often humorous insights to their world. You can find her by searching for ‘My kid loves broccoli.’

She has also written, and co-written books, we’ve included the details below:

Cornelia de Lange Syndrome – A Shared Journey:

The (little) Book of Broccoli:

Hannah:

Hannah was diagnosed with Cornelia de Lange Syndrome whilst still a baby. CdLS affects between 1 in 10,000 to 30,000 live births and is present at birth. Individuals may display physical, intellectual and behavioural characteristics. However, it can be widely variable and not all people with the condition will show all of the aspects.

For more information visit www.cdlsworld.org which can signpost to the different Foundations.

If based in the UK you can find out more at www.cdls.org.uk

The first International consensus statementtreatment and diagnosis protocol can be viewed here:

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