There has been a call to action recently in the disabled community. One that initially made my head spin and my heart weep. One that I thought was dangerous and would do the opposite of what it set out to achieve.
You probably haven’t heard of it, but it’s been rumbling on all over the festive period (ho ho ho). It’s called #CrippingTheMighty
The Mighty is a huge disability and chronic illness story-sharing website that recently got blasted for publishing a blog post called Meltdown Bingo written by an autistic parent about her autistic son that many deemed to make light of the quite serious issue of autistic meltdowns. One author compared it making fun of someone having a grand mal seizure. Not cool really.
It was the tipping point for many disability bloggers who for a while have been getting tired of inspirational porn, where a disabled person is portrayed as being ‘amazing’ simply for doing something normal. The movement also, quite justly, called out The Mighty for also publishing too many stories about instances where able-bodied people were ‘nice’ to disabled people. Imagine that. What a beautiful world.
But then they turned their attention to the parent bloggers of disabled children and this is when the debate stuck in my craw a bit. There were two posts that seemed to be getting the most attention and applause from large parts of the disability community. The first was entitled The Inspiration Porn Resolution, which claimed to be a set of guidelines for better reporting and writing about the disability community. It said that a common inspirational porn theme was the super parent, but it stated “a parent cannot be a hero without the burden or challenge a child may present.”
The other was a rather heated post with the inflammatory ‘click bait’ title of Privacy of Disabled Children versus Popularity of Parents of Disabled Children where the author says that: “attention seeker parents will say that they write “with honesty”, that they tell everything “the way it is”, even using the child’s real name, since they can’t “read or understand anything”, because other parents are “thanking them” all the time.” She adds: “you need to stop talking publicly about your child’s disability and do some real parenting…your attitude only shows that you don’t believe in your child.”
At first, I was all annoyed AGAIN – because I’ve been here before when another disability activist said parents where bridging a fine line between raising awareness and shaming.
I was about to write a post along the lines of: listen you cheeky, arrogant so and so, you can tell me how to parent my disabled child when you’ve:
- Watched them hold on to life by their finger tips in a resuscitation room, saved only by a swift insertion of a ventilator.
- Spent every night for almost three years mopping up vomit to a backdrop of pained wails as their stomach rejects another 20mls of tube fed milk.
- Worked until 2am to meet work deadlines as you’ve spent the day traipsing from hospital appointment to hospital appointment getting only bad news.
- Fought to get a place at the best specialist setting so they can flourish under the care of the best professionals.
- Pushed an ill child through physio and speech and language exercises when all you really wanted to do is cuddle them on the couch.
- Cuddled them on the couch and lain awake all night feeling like crap because you didn’t do enough physio and speech therapy.
- Experienced years of sleep deprivation because they are in pain and need comfort or sometimes they are just awake and need company.
- Felt like you’d won the lottery (and the moon) when they rolled for the first time, played with a toy or uttered their first word.
- Noticed the positive impact their disability was having on their siblings and how “it” was shaping their world in a good way.
- Known the sheer relief when you get to a point of acceptance – and life cracked on in splendid version of normality.
But then I got off my high horse, started to read some of other blog posts behind the hashtag and took five with a KitKat.
I read the wonderful article by Carrie Ann Lucas and both marvellous posts by the Crippledscholar. I lost a few hours reading through Disability Thinking by the remarkable Andrew D. Pulrang (who has already rightly called me out about a negative post about my boy’s first wheelchair. A wheelchair I don’t even see anymore). Then mentally high-fived the splendid Carly Findlay who said:
We aren’t the enemy. We aren’t spouting hate or silencing you. I am listening to you, seeing your struggles and admire the great job you’re doing.
I understand how uplifting stories inspire you and often give you hope for your children. But please consume the stories about ableism, discrimination and why we don’t want to be a teaching moment, too. Not all stories about disability are positive and uplifting, because life with a disability isn’t always great.
Consider the impact your stories will have on the wider disability community, on your child even. Be mindful of public grief.
I read post after post and then I got it. The message that was also there in the first two pieces of writing, but perhaps was lost in the parent baiting. So this is what I am taking away from #CrippingTheMighty
- If I truly want to blog (campaign/raise awareness/share experiences) about my son, then these disability bloggers are the ones that I need to listen to. It isn’t about making my life easier here and now (although that would be nice), but more about understanding the world he will grow up in.
- His dignity has to be central. Always. If I wouldn’t share it about me or my other two children, why share it about him.
- Think more about empowerment – less ableism (by the way I didn’t know the meaning of that word really until this month; we can all be guilty of preconceived ideas of disability – even parents of disabled children).
- Don’t ever speak about his disability as a negative thing “that happened to us”.
- Stop using the phrase ‘special needs parent’ – even if it fits nicer into a blog title (it does). I agree – it’s misleading.
- Realise I am not ever going to be his voice. I am my voice about this experience. And I have every right to use it. Same as everyone else. One day he’ll use his own voice and hopefully I can help him.
The #crippingthemighty posts have been enlightening. But I don’t see why parents and disabled adults can’t work together. Please do educate us, show us the way ahead. Of course, we can’t truly know but we’d like to understand.
Can you do me a favour though and tone down the parent bashing as it isn’t helping. Let’s stop with the mummy martyr attacks. We are just trying our best and whether you like it or not, these are our babies and we want nothing but the best for them and if that makes us warriors and pests – so be it.
Lots of us parents do access private community groups where we can share tips, let off steam and sometimes get nuggets of advice that vastly improve our children’s quality of life. Lots of us also like reading an eclectic mixture of experiences via the medium of blog posts and articles – including yours – so we can parent better.
Last time I checked we all wanted the same things. We want this world where disabled adults currently reside and that our children are growing up in to be fairer and more inclusive. We don’t want them to face additional challenges because of people’s influenced notions of what a disabled person can achieve. We want them to feel respected. That they have a rightful place in society. We agree with you when you say: “Disabled lives have value and we need to start remembering that and believing that.”
For some of us though, the immediate battle is keeping them alive. Right now our attention may be all took up with feeding them (slow spoonful by spoonful), making sure their medications are correct, keeping them pain free, managing the environment when they overload, researching the best therapies, keeping on top of school to make sure they are getting all they need. That’s our job. We do it willingly, lovingly.
We also need to take care of ourselves so we can take better care of them.
We are not martyrs, warriors, super mums. Just people trying to do our best.
It is a learning curve – how about meeting us half way.
P.S. Mum, sorry about the profanity.