In general, raising awareness days piss me off. I wish people would remember those affected the other 364 days a year. I wonder at any lasting legacy from these days. So many days making it almost impossible to support them all.
Does the sheer number of awareness days actually minimize their overall effectiveness?
How can raising awareness be of value and actually cultivate positive change?
Let's have a think. How do we raise awareness? The simplest way is through social media. But is it through sharing stuff like this on Facebook?
Click 'like' to send a prayer because if not you don't care!
Share this horrific photo of a disfigured and neglected child to show you care!
The bullies at school don't think I'm pretty click "like" if you disagree" ( usually child with an obvious additional need using a big sign).
Look here's a photo of disabled child crying. Quick! Click "like" and "share" to show you care people. Raise awareness of disability. CLICK LIKE AND SHARE OR YOU ARE ALL GOING TO HELL!
Here's a child on life support all tubey "share" to show you care, "like" to send an amen.
Now please don't misunderstand me. I know when people click on these things and share them it's usually because they do care. Or want to look like they care. Or are scared of going to hell... Err one of those anyway.
But I think what pisses me off about all of the above is that people think they are making a difference, that they are helping, and I'm not too sure that it does. But then I'm not a fan of shock tactics for awareness anyway. There are too many questions to be asked about how it maintains the dignity of those involved. Or if they could consent. Or is it actually a photo of what it claims to be?
Then there's life stories. I suppose my blog fits into this category, and so do those belonging to many of my friends. However families opening up about their constant battles, heartache, or family life can end up somehow twisted into inspiration porn. People "hold their children closer", "appreciate what they have", assume we are "amazing" and "strong", and err "inspiring". They don't know how we do it. God only gives special children to special parents after all...
Meh.
But maybe these things do raise awareness? Even just briefly. Even just a little bit. Maybe that's good enough? For some people I don't doubt these likes and shares are a token gesture, for others it's a genuine concern and a recognition of need.
I do think many people fail to grasp the difference between sympathy and empathy, and the significance of this difference. It's all very well balling your eyes out at Children in Need, hugging your kids then telling everyone on Facebook how upset and heartbroken you are for these families. But how does that help anyone? Can you put yourself in their shoes and think about how you would feel? What you would need or want for your family? Yes your donations are nothing to be sniffed at but surely a societal shift towards helping and supporting vulnerable communities would actually be more practical use in the long term.
Maybe stand up against hate crime.
Maybe support the NHS.
Maybe encourage your children to accept difference as nothing scary, and nurture their accepting nature to grow and develop.
Maybe don't nod and agree as you hear people down the pub criticize ill and/ or disabled people with accusations of being cheats and work shy.
Maybe object to cuts to community based care and services.
Maybe don't assume that if you haven't heard of a syndrome before, or if someone is still undiagnosed, that their issues aren't significant and life affecting.
Maybe start to appreciate that the rarer something is, the less information and support there is for everyone involved. That research into the rare stuff doesn't happen much. The money isn't there and quite often the motivation isn't there either. Rare can mean tricky. Rare can be shitty. Rare or undiagnosed can mean services, resources and equipment can be even harder to access. Disappointingly the little box you get to tick now you have a diagnosis doesn't help as much as you thought it would. The treatment or therapy options you thought you would receive don't even exist.
In the ATRX group we often talk over the issues our boys have and there aren't any clear answers. So we struggle on.
Ah that's why the awareness day is important.
*toddles off to share some shit on facebook*
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