Is Downs Side Up a Mummy Activist?

When I was asked recently to write a piece on Mummy Activists I have to admit it wasn’t a phrase I’ve heard that often. I guess I had never considered myself as such, although I had met self confessed warrior mummies.

You see the word Mummy to me is gentleness, firm guidance, a hug and a kiss after a bumped knee, pacing worriedly during illnesses or surgeries,  reassurance on a windy night, homework helper, finding clever ways to hide vegetables in food.

The last time I was a rather wishy washy activist was during my uni years, when I might have marched in fair weather to save the rainforest, turned veggie because my friend who was a good cook was, or sat in a library all night protesting about Poll Tax whilst drinking coffee with some rugby player I rather fancied. I’ve never been a particularly political animal. That’s what activists are isn’t it?

Well, this got me thinking, because the fact I've been asked me to write on this subject means you think I am an activist, and a Mummy Activist to boot.

The strap line of my blog Downs Side Up is “Gently changing perceptions of Down’s Syndrome from within hearts.” And there you have my definition: A Mummy Activist will change the world subtly without you even realising she’s done it.

While you are clicking Like on a quirky picture of our family with a catchy slogan on Facebook, you are internalising and normalising Down’s Syndrome. It’s becoming part of your daily life.

When you read a funny blog post about a badly timed fart or friends being held hostage when Natty hid their keys you probably think of how relevant they are for your own family, whether your children have DS or not, and so you realise that our families have more in common than you at first thought.

You may have seen our daughter Natty modeling for Frugi, Jojo Maman Bebe or Eden Project. Again a subtle inclusive message, a role model for other children with disabilities and a shining light for new parents. We’ve just returned from a fabulous group photo shoot where we gathered 8 of the UKs models with Down’s Syndrome together in the historic house of John Langdon Down who first described the Syndrome. Such a beautiful setting and so many mixed emotion standing there remembering the past for individuals like Natty. But we have been pioneers pushing barriers gently out of our children’s paths. The world is so much more their oyster these days as a result.

Perhaps you have heard me speak at a conference or training day, and watched me pour my emotions into doing that, even seen me cry at a podium. I know many say they will never forget that experience and I know I have cracked a few hard professionals’ hearts that way. My heart, is on my sleeve, and there is no better activist’s weapon.

For you see, in my opinion, getting cross and beating people over the head with my mantra is a sure fire way to get them to switch off, stop listening and box me up in their minds in a section marked ‘boring/angry disability mum’. I don't like reading non stop angry rants, and neither will you.
That said everyone'sblog is their own personal space. If you are feeling angry and need to work through your feelings by writing then blogging is a wonderful way to do it. It is cathartic and you can share remotely with family and friends your deepest fears. And that is fine, because a blog's success is not about statistics after all.

Just before Christmas, Geoffery Clark UKiP candidate called for the compulsory abortion of babies with Spina Bifida and Down’s Syndrome amongst many other nonsenses. It took me 3 days to calm down, channel my anger and write him an open letter, fuelled with love for our children and pity for him. I’m glad I waited and resisted the knee-jerk reaction letter that came into my head first. You can read the letter here:

I have just returned from London where I was asked to give evidence in Parliament on the Disability Abortion Law to a multi-party commission. I decided to employ the same technique there, despite my horror at the legality of abortions ‘up to and including during birth’ for babies with disabilities. The only way to win this one was with photos, anecdotes and buckets of passion. I think it had the desired impact. Read Downs Side Up Gives Evidence in Parliament here:

Then a few weeks ago I found myself persuaded by Kateonthinice to join her in a Naked Mum programme, designed to boost Mums confidences, and celebrate our bodies that created our beautiful children.  More to the point, we must not blame our bodies, our children are not mistakes.
A good friend volunteered her photography skills and a date was set for the shoot. Can taking your clothes off create change? Does it define you as an activist? Well the photos haven’t been released yet and already nearly £800 has been raised, but more surprisingly many Mums have written thanking me for being so brave and highlighting that Mums of children with disabilities are just like any other.

Proud, protective, and a bit squidgy round the edges.

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