I recently read a blog post by Carly Findlay at http://carlyfindlay.blogspot.com.au/.
If you’ve never read her stuff, do yourself a favour and get on over there.
Carly is a journalist and blogger with a flair for writing relatable pieces about living with a disability.
I’m a big fan of her blog and her writing and highly recommend them to all of my Firefly Friends.
On 29th July, Carly wrote a blog entitled “Parents blogging about their children with disabilities: it’s a fine line between awareness raising and shaming”.
Being a parent-carer and blogger myself, I read it with interest.
Carly had recently taken part in a Twitter chat about the power of sharing disability stories, and during the course of the conversation she was asked about how disability should be represented in mainstream and social media.
In the subsequent blog, she summarised her response:
“I said I’d like to see fewer stories about people with disabilities told by others. I want to see fewer stories of disability as a burden. I also said I want to see less of parents showing their child’s disability on social media until their child can give permission.”
She went on to add:
“Blog posts about children with disabilities being burdens or inspirations, or full of detailed information about the child’s condition, make me uncomfortable. I say this as someone's (adult) child with a disability.”
I couldn’t get her post out of my head for days.
In some ways, I completely understand what she means.
I certainly wouldn’t appreciate my private business being aired on social media without my consent.
Having said that, if there’s one thing social media has been really good for, it’s making isolation less… isolating.
Most of us live in a place where the local parent-carer community is sparse, and I’m quite sure none of us would wish it were bigger.
Social media gives us a community where we can share our stories, empathise with and provide advice to one another, and raise awareness for ourselves and our children.
Of course it’s important that our children’s privacy and dignity are protected, but does this mean we can’t talk about the reality of our lives at all?
Of course not! To her credit, Carly’s postscript does say something to that effect as well, but I still feel I want to say something in response.
I won’t paraphrase Carly’s blog here because I think it’s important that you read it in the context in which it was intended, but here are some of my thoughts about it:
I think there’s one fundamental thing that Carly might have missed.
Our ‘disability blogs’ aren’t about disability.
They’re about parenting, but with a specific twist.
There are soooooo many parenting blogs and websites out there.
You can read parenting blogs about everything from the pain of infertility, through pregnancy and childbirth, surviving the newborn and ‘terrible twos’ phases, schooling issues - children with autism/anxiety issues/gifted and talented kids/bullying/sex education – right through to navigating the teen years and your fledgling adults leaving the nest (whether you’re sad that they did or sorry that they won’t).
Our blogs are the same – parenting blogs, not disability blogs.
Oversharing about our children – or saying things that might later hurt or embarrass them – is not limited to our community!
It’s not even limited to blogging.
I have facebook friends who say hair-raising things about their (neurotypical) children sometimes, and I know they’re just venting, but is it wrong?
Is it somehow worse when we talk about our children with disabilities?
This brings me to another thought:
I don’t mean to be insulting, and I know it’s a bit tongue-in-cheek, but it’s absolutely true.
You only have to read any parenting-related blog/article/advertisement/website to see that most people think so.
Parenting (done well) is relentless, glorious, tiring, joyful, problematic, stirring, worrying, stimulating, boring, motivating, inconvenient, wonderful, draining... and yes, both inspirational and burdensome.
Love is like that.
This one might be tricky for those of us whose children may never be able to read – or comprehend – the things we share with our community.
My daughter is in this boat, although I dream of that one day changing.
If I can fantasise about conversations and walks in the park with my daughter, I can certainly imagine her reading my blogs.
Would I worry that they might hurt or embarrass her?
I truly don’t think so.
I’m very protective of Charlie’s dignity and privacy, and I don’t think I’ve ever overstepped that line.
BUT… that brings me to my next point:
They’re not absolute concepts.
One person might be mortified by even the most innocuous nudity, whereas another happily shares a photo of herself breastfeeding her toddler while sitting on the toilet (we’ve all seen that pic).
Are we worried about the future embarrassment of that child?
Well, that all depends on your personal position, doesn’t it?
Personally, I think it’s a funny and realistic day-in-the-life shot, and that all parents embarrass their children at times, but that’s just me. Still…
Social media presents opportunities for oversharing about absolutely anything.
We all want to protect our children from exploitation, whether that’s about sharing too much medical information, posting naked pictures of our chubby toddlers, accidental geo-location data attached to photos, or actually posting personal security details like school names and home addresses.
We have a responsibility to our children, both in real life and in the digital arena.
There should be more disability stories written by people with disabilities themselves.
I have a number of friends with disabilities – some I’ve met in person, and others I only know online – and their stories pack a lot of punch.
I’d love to read stories written by older children or adults with my Charlie’s condition.
I think that would teach me a lot and fill me with hope for the future, not to mention how hugely influential it could be for Charlie’s own sense of self and community as she gets older.
But – to play the devil’s advocate one more time – if all other voices are shouted down in favour of ‘self-disability-blogging’, does this mean that ‘silent’ disabilities don’t get a voice?
It’s no less important to raise awareness for these complex disorders, and who better to do that than those of us whose lives are so impacted by them?
Most importantly, I think we need to remember that parenting blogs are written from the perspective of the parents.
My blogs are not ‘disability blogs’ – they’re parenting blogs with a twist.
I don’t presume to speak for my daughter, but I do think there’s value in speaking for myself.
I love reading the other carer blogs and realising that their stories so closely echo our own as to make me feel less alone.
IF I were ever to write for a disability blog, I would presume to speak as an ‘expert’ (because I think that’s what we parents are), not as a proxy for my child.
Similarly, as a carer I blog about my caring experiences, and as long I remember that delineation, I think it’s okay.
Does your child take ADHD medication?