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: http://www.downssideup.com/2012/12/dear-mr-geoffry-clark.html
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. http://www.downssideup.com/2013/01/downs-side-up-uncovered.html
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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