Stereotypes; there must be more to life?

I was recently lifted by the sight of something so simple, natural and not out of the ordinary. Yet it was just what I wanted to see and it challenged that stereotype of a person with Down’s Syndrome that I found so desperately upsetting when Audrey was born.

I saw a young woman with Down’s Syndrome shopping with her dad in a supermarket. She had on colourful clothes and was carrying a blue Michael Kors handbag. I was watching them from afar (Audrey was asleep in the buggy) and as we went through the checkout and I noticed that Vogue was on offer (only £2!), I glanced down the rows of checkouts to see if she was still around… Just in time to see her leaving with a Vogue tucked under one arm.

This ridiculous thing made me feel so happy. I tried to think why… And I decided it’s about inclusion, representation and knowledge. Maybe it wouldn’t seem so amazing to see a fashionista with Down Syndrome if one popped up now and again on TV or in a magazine.

This is what I love about social media when it comes to the DS community. I can explore the diverse world of; people who are like me and people who are different. These two things make me happy in so many ways.

Connecting with people who are like you;

Well it makes you feel… connected. You can have banter about those things that you share in common, like shiny new Nike Airs or a good lemon drizzle cake or getting a fringe cut in.

Seeing people who are different;

What does the mother of a child with special needs look like? Is she mumsy? Old? Plain? Sensible? And what hobbies does she have? Knitting? Volunteering? Does she like music? Probably Cliff Richard? Or Daniel O’Donnell?  Well those preconceptions can be shattered.

Call me crazy, but pre-Audrey I imagined families with children with special needs. I thought: geeky. Respectable. Good. Boring. Worthy. A grey, depressing world. So I love to see families with children with special needs who do not fulfill that grey expectation… tattooed, blue haired, fat, thin, trendy, twee, perfect, messy, tacky, stylish… it’s just fun seeing that there are so many different families out there tied together by having that someone who has an extra chromosome. And we are all “representing” (this needs an American accent, doesn’t quite work in a British voice!). We are showing the spectrum rather than letting people imagine the grey.

Something that helps bind us to these families are the facial characteristics that are common in people with Down’s Syndrome. Imagine seeing another family whose child looks remarkably like yours… Freaky? Yes it can be a bit! But of course we see the beauty in those faces and we feel connected. It’s pretty amazing actually. An extended family.

A couple of months ago, I had my haircut at a new hairdresser. I have had the same home hairdresser for years and she was away and I needed sorting asap. So I had to go through the motions of small talk with a stranger. He was young (28), bearded and tattooed, I worried we’d have nothing to talk about, but he had a 5 week old baby girl and 2 stepsons so that made it easy; we can talk about kids, hurrah! I mentioned at that point we hadn’t really told everyone about our pregnancy as we were waiting for the 20 week scan, feeling a bit nervous after a miscarriage. He understood, he had some friends… They had the “Down’s test…” and I’m thinking “Oh no, don’t go there…” It was an out of body experience as I felt a bit sick and waited for him to finish this sad story of his friends and their scan… The baby had an extremely rare condition, it wouldn’t have survived, so they had a termination. A sad story and at this point I felt the need to say “I should probably mention that my daughter has Down’s Syndrome..”. He was a little embarrassed and rambled a bit about this specific condition not being like Down’s Syndrome and it was a bit uncomfortable for both of us. I felt I had a real opportunity to educate but I didn’t want to sound like I was preaching and I did find the situation difficult. He asked me “Is it tiring?” and I have to admit I wasn’t entirely sure what he was referring to at first! “Having a child with Down’s Syndrome?”, “Oh no! In fact, she’s probably not as tiring as her peers as she can’t run riot and she’s just very gentle and content most of the time”. It was weird discussing Audrey in this way; as a child with DS, rather than just a child – and someone wondering “Your kid has Down’s Syndrome, wow, what’s that like??”.

We bang the drum for inclusion and I guess some people wonder why. My brother actually thought it was funny we were so obsessed with seeing people with Down’s Syndrome on TV – I think to a certain extent he was being cynical in that advertisers and channels can use disability inclusion to ‘score brownie points’. And I get that. Pre-Audrey I may have agreed. “Oh they’ve shoe-horned a character in a wheelchair into this story line, yawn”. But now I view those things oh so differently. I am excited by the representation of minorities in the media now. No, I don’t want to see a Down’s Syndrome character forcefully added to every TV advert, but to see a face from our community every now and again is a nice feeling. Especially when it’s just representing life, not trying to represent disability.

And that’s what I’m trying to do with blogging about Audrey, just represent our life. And maybe (hopefully) we’ll reach someone who needed to see our life in order to change their perception of Down Syndrome for the better.

   
   

Down’s Syndrome Awareness Month approaching…

When Audrey was born I wasted too much time worrying about the most ridiculous superficial nonsense! I thought about things like her not having any fashion sense! That she might be fat! That mother-daughter time would never be how I had once dreamed… I’m so ashamed by these thoughts.

One of the worst/craziest worries was that I would never think she was beautiful. Here we are at 14 months, she’s 100% the most beautiful baby I have ever seen. It should be a given that a mother would feel that way about her child.

I suspect my blog posts will get a bit repetitive, I apologise in advance! But I’ve realised the importance/benefit of “raising awareness”. If people were more aware and if disabilities were a part of everyday life, those of us suddenly thrust into this world might not feel so awful/negative about it.

October is Down’s Syndrome Awareness Month.

In October 2012 I fell pregnant with Audrey. In October 2013 she was 3 months old. Thanks to Instagram I found out about DSAM and found all the DS hashtags that led to me to become part of a community of wonderful people enjoying life and sharing their DS experiences. Seeing happy families from around the word really did make a difference to me. It has given me hope, support and also the confidence to share our story and share Audrey with the world.

Back in October 2013 I had around 80 followers on IG, a year on I (Audrey!) have 720!

I must admit, my first thoughts about Down’s Syndrome awareness was; “I’m aware of it, as are most people, not really sure why we need to increase awareness”. Ha. But gradually I realised what the “awareness” was doing for me and how much strength you can gain from seeing other people go through what you’ve been through and come out the other side.

And then I think about awareness and inclusion and what that can do for the world. If TV and adverts and mainstream media embraced special needs, disabled people, minorities… Maybe we’d all feel more comfortable around people who are “different” to the norm. Maybe we’d all feel less scared by “different”. And maybe a woman somewhere getting told her baby has DS won’t immediately feel the future has been destroyed, but will think “Oh, ok, unexpected, but people with DS lead happy and fulfilled lives, things are going to be ok”.

Audrey in October 2013…

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And now (Sept 2014)…

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