identity revelation.

Every two years, I have the worst year. 

I had this revelation not too long ago. My bad luck comes every second year, and it's rough. 2013 and 2015 were especially difficult, but 2017 has brought a whole series of challenges that I was totally unprepared for.

This year, I discovered the social model of disability. It seems unfathomable to me now that I was completely unaware of its existence before then, because it makes so much sense, but I had spent so much of my life thinking that the medical model was the only real definition as that's all I'd been exposed to. But discovering this model that reinforced my right to live and access the world as I should meant a new, uncomfortable terrain to navigate. How do I begin to take back my right to hold space and exist? How do I begin to demand these rights and how do I do it respectfully, but with the authority I should have as the owner of the body I inhabit?

I've been tripping up a lot this year, because I have absolutely no idea how to communicate this newfound sense of pride. I have spent almost 22 years being a pushover to the politics of an abled society, so to be told that there's nothing wrong with me, but that it's society that hasn't been built to include me... well. That just changed everything

Your early twenties is a difficult period of self-discovery for pretty much anyone. That's why shows such as Friends and How I Met Your Mother gained so much momentum. A bunch of twenty-something pals trying to work out what the hell they're doing. Relatable, right? Well then imagine one of those characters discovering that everything they had been told about their identity was a farce, and they are entitled to a lot more than what they'd been offered in the past. 

I'd watch that season. What a mess.

There's an unrealistic expectation that disabled people will automatically be agreeable when the bare minimum is offered. That we'll somehow be grateful that we have been offered a teaspoon of icecream when the kids at the 'normal' table get a full bowl of it to themselves. But no, fuck that. I want the bowl, and we should all be sitting at the same table. 

I'm a millenial, and we're constantly fighting the notion that we're all entitled trust-fund brats with no real concept of how the world works. This gets even trickier when disability is thrown into the mix, because a disabled person demanding respect is different to a disabled millenial demanding respect. I'm immediately more difficult to deal with, more entitled, more cynical, more... whatever. That's upsetting. These judgements are hurtful and they couldn't be farther from the truth. I'm overworked 98% of the time because that's what's expected of me as a millenial. I can't keep doing that, and I've been trying to find ways to cut it down. But I don't know how, and I've been getting it very wrong in the process.

When we mess up and we have to face the consequences, it can be rough. Really rough. But not all consequences have to be negative. They can be learning experiences on both sides. I'm going to try to advocate for myself as best as I can and if I mess up and hurt someone in the process, I'm going to deal with those consequences, apologise, make amends, and learn from that experience. But that has to go both ways. I'll get it wrong. I'll often be problematic. I'm not infallible. I'm also not always the problem, and I'm learning that now. It's not okay to be oppressed, and it's okay for me to speak up about it.

When you're young, you're taught to respect your elders. School taught me not to talk back. It also taught me that I was less than everyone else. I know that that's false, now. But do you know how difficult it is to unlearn all of that?

I DESERVE (1).png

I deserve to take up space. I deserve to be heard. I deserve to have authority over my body, its actions, its representation, its movements. I deserve to hold the same rights, privileges, and be afforded the same respect that abled people are afforded.

And I didn't truly believe that until this year. 

I do now. 

So bare with me, because I'm going to mess up, and I'm going to get it wrong until I start getting it right. It's been a truly awful year trying to come to terms with this new identity, one of ownership, respect, and agency... Many people have disappeared in this process and I'm sure others have struggled with it, too. I know I haven't done it well, or done it right. I'm learning a new language, find a new identity, building a new life, and trying to find my feet.

But I can't keep giving into the medical model of disability anymore. I won't keep conforming to the standards of a society designed to keep me down. We deserve better than that. We deserve to take up space. 

So thanks, 2017. You've been horrendous to me this year, for a number of reasons. But you also brought me this revelation of sorts... Your thank you card is in the mail.

not your story to tell.

With the rise of mummy bloggers and social media influencers comes a troubling trend of parents using their social media accounts to document and exploit their child's disability and its symptoms.


I call this a troubling trend because the more I find myself scrolling through Instagram's 'Explore' tab, the more photos I see accompanied by parental anecdotes posted under the guise of 'raising awareness'.

It makes me feel physically ill to see these posts, for a few reasons:

  1. The rise of profit-gain posts exploiting disabled children for the purposes of spruiking a product or brand and benefitting from it.
  2. The complete disregard for the privacy of the disabled child, who should be given the right to choose when, why, how to share their story, and how they identify* - if they want to.
  3. The subconscious ableism prevalent in the mindsets of these social media users and their followers, who often sympathise with the parent - 'I'm so sorry you have to go through this, you're such a strong mom, I don't know how you do it!' - whilst (possibly inadvertently) supporting the idea that disabled people are 'less than'. 

Now, I'm not at all suggesting that parents of children with disabilities should hide their kids from social media, because that's just gross and discriminatory. Instead, I'm urging these parents to ask themselves: is this my story to tell?

Carly Findlay wrote an excellent piece on this issue in 2015, and I'd like to share her insights with you here:

"There are parts of my condition that are so private: how my face looks first thing in the morning, the piles of skin on my floor and in the bed, and the smell of my legs when they’re severely infected. I don’t let others see this side of my condition, because I guess it’s like letting people see me go to the toilet. I want my privacy (and I am so thankful for my parents respecting this as I grew up). I hope to always put the best side of me online..."

The above quote resonated so strongly with me, because I do the same thing with my own condition. Central Core Disease and scoliosis mean that I stand somewhat awkwardly and I have an awkward gait when I walk. I'll rarely be photographed from the side when I'm standing, and I often won't allow people to look at me when I try to get up from a chair. My selfies are almost from chest-up, because I'm not too proud of how chunky my legs are without the muscle tone to help give them shape. These things probably seem silly to most people, but it's important to me that my first introduction to someone is on my terms.

This isn't limited to social media. When I sit cross-legged on my office chair at work, I'm not going to tell my co-workers that it's because my feet are numb again and my calf muscles won't stop aching. I just get on with it - and I do so in privacy. 

I'm glad that as an adult, I have that right to privacy. And though I'm glad 'mummy-blogging' wasn't really a thing when I was growing up, I'm also glad to have a mother who understands my right to privacy, too. I have not once seen a post of hers that indicated I was unworthy, or 'less-than'. I haven't seen a single degrading post outlining her heartbreak at my 'devastating diagnosis'. She was a powerful advocate when schools didn't understand my right of ownership over my own body and my ability to articulate my own access requirements. 

I was given the right to come to terms with my given circumstances and disclose however I wanted to. 
 

Carly also wrote,

"An adult with a disability may choose not to disclose their condition – the whole condition or certain intricacies of it. But sometimes children’s identities are made public before they’ve given consent. When a disabled child’s parent has already blogged about their disability or shared photos and stories on social media, their condition has already been disclosed. And so this impacts on their friendships, future employers, relationships and esteem."

I see the disclosure of children's disabilities all the time when I'm perusing Instagram's Explore tab. A cute photo of a young girl with her mobility aid and some glittery pink shoes is almost always accompanied by a long caption outlining the intricacies of getting that shot and how taxing it was for the mother to organise. Sometimes, the mother - let's call her Suzie - will talk about how exhausted she is and how she wishes her daughter Sally could just walk 'properly' and be 'normal'. Other times, Suzie will upload a photo of Sally sitting on the toilet and praise her for climbing up all by herself like a 'big girl'. 

It's infantilising, degrading, inspiration porn-enabling, and what's worse is that these are often sponsored posts. That's right - parents are getting paid for exploiting their disabled children.

My heart hurts for these children who are not granted the same dignity I have been afforded. I feel my stomach churn every time I see another post like Suzie's and read the comments of those sympathising with Suzie's plight and completely ignoring Sally's privacy - and how this may adversely affect her future.

Your child should always be given the respect they deserve, the privacy they're owed, and the agency to choose how they identify, how they're portrayed online, and what they feel comfortable revealing.
 

I could write several posts about this, but I'm already fearful that I will be attacked - as many disabled writers are - by parents who disagree with everything I've just said. So instead, I'll just leave you with this infographic (with an image description below), and a final thought:

Lived experience refers to actually living as a disabled person. If you don't have this lived experience,

it's not your story to tell.

Infographic description: 
Grey background with blue universal symbol for disability (a wheelchair) and a microphone logo to the right of the headline that reads, "Blogging About Disability, A guide for parents of disabled children who use social media and publicly post about their children's disability". The by-line attributes the infographic to madeleinelittle.com.

The infographic contains a numbered list.

Number one. Title reads: Identity.
Body text: Every disabled person has the right to choose how they identify. I personally prefer 'person with a disability' but use it almost interchangeably with 'disabled person' nowadays and acknowledge my right to choose how to introduce myself.

So if you're blogging about your child, think about how THEY wish to be identified. Consider how 'special needs', 'diffability', 'differently-abled', and other such terms are degrading to many (if not most) disabled people and the wider disabled community, and educate yourself with disabled-led forums, blogs, and resources. By choosing for your child and publicly enforcing your preference, you are overriding the rights and agency of the disabled person in favour of your own stance. This is extremely harmful.

Number two. Title reads: The internet is forever.
Body text: Every time you tweet, blog, or post about the intimate details of your disabled child's daily life, you are publicising their experiences and limiting their privacy in doing so. These posts will be around for a long time, so if you feel compelled to write about how distraught you were when you received your child's diagnosis because you 'knew they'd never be normal', just imagine your child hearing those words come straight from your mouth. They'd likely be devastated.

Keep your posts factual and relevant to YOUR experiences. Please avoid any posts or images that explicitly reveal your child's symptoms or experiences until they are old enough to consent. 

NOTE: They cannot consent if you pressure them into it, and no, they cannot consent if they haven't received appropriate education via disability-led resources to understand the implications of such public posting.

Number three. Title reads: When it comes to disability issues, disabled people are the experts.

You may be the parent of a child with disability, but you are NOT the expert. 

This may seem harsh, and I don't write this to diminish how important a role you play in your child's growth and upbringing. I write this to explain that you do not get to choose which terminology is or isn't offensive, and you do not have the right to dictate how your child feels about disability rights issues. As such, why is it okay for you to post and blog about these issues and override the opinions and preferences of actual disabled adults in the process? 

Answer: It's not. Always refer to disabled-authored resources.

Number four. Title reads: Your child's disability is not about you.
Body text: I understand how parenting is a difficult job, and parenting a disabled child can be even more difficult. But it's important to distinguish the difference between good ole parental venting and badmouthing disability.

It's totally understandable that you'd want to get some troubles off your chest - just consider the appropriate forum for doing so. Remember that even if your child is too young to notice what you post, your subconscious ableism will translate to their thinking if you're not careful. 

Disability should not be equated to and represented as a burden. 

Your child should never be publicly shamed for their disability or how it manifests. 

Your child will take their cues from you, so it's up to you to ensure that they are loved, respected, and have the agency to choose how their story is told.