Solar Plexus

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I’m expanding my splines in relation to language use at the moment. I embrace the idea that people should get to call themselves what they want. I believe that people should refrain from using language that other groups commonly say are offensive to them. I’m a latecomer to the gender neutral pronoun but I’m already onboard. It took me about a week of typing ‘they’ in place of ‘her’ to do so without having to think about it anymore.

Ableist terms have been harder. I got really stuck on the whole ‘well, when I use that word, I don’t intend it that way’. And also, ‘yeah, but the word doesn’t mean that anymore’. And ok, a while back, in my head I thought ‘words are just words really, what’s all the fuss?’.

I’ve been ruminating on it though. I’ve been seeing how these words are flung about in the media. I’ve noticed how these words are being used negatively about autistic people – about autistic children. And I’ve been watching what happens in online spaces when someone drops one of these words, gets told please don’t do that, and defends their use. Others rally to their side and before you know it, we are back at ‘words are just words’.

And as the time goes by from my own realization that I am autistic, I’ve watched and asked and read and something has shifted.

When I hear those words they don’t sound the same to me now as they did 6 months ago. They don’t seem so harmless when I’ve read so many first person accounts of what is done to neurodivergent people, to disabled people. When I’ve seen how these words are used against my friends and I to invalidate our opinions. When I’ve seen how they’ve served as excuses for those that abuse us.

Now when I hear ableist words, there’s an aversion that I feel. It’s accompanied by a tiny shudder that originates from my solar plexus. You wouldn’t see it from the outside but it pings and it’s unpleasant and it makes images appear in my brain that are frightening and abhorrent. Images that take a while to go away.

So please, don’t use those words. It doesn’t matter if you didn’t mean them that way. It doesn’t matter if you think it’s all a bit too much and words are just words.

Just don’t use those words that hurt us.

Mothership

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My mind and body don’t work well together. My mind is like the mothership; its need to think sucks all the energy out of the other systems. It has priority. It shuts down every other signal so it has total power.

When it has taken all the power, the mind devours information. It has light lasers that scan text and turn it into a thousand million signals that fire messages out to the perimeter. It’s pretty.

It’s not aware of the fact that there is hunger in the system. It doesn’t care that somewhere a signal is being sent that the body needs to urinate. It feels the fact that it is overheated but it doesn’t stop to examine why. It doesn’t want to pay attention to moving the mouth and making words come out.

Stop bothering it. Stop boring it. It doesn’t want to be pinged by those needs. It’s THINKING.

There is no breaking its control. There is just waiting.

When the window comes and there is the reminder that muscles are needing attention, that physical health matters, it is hard work to put pressure on the mothership to steer some attention over here.

Look, there’s a body.

Feel, it’s your body.

It takes time. And patience. And habituation.

But here is the body. And to keep the focus here, I will have to find a way to feel the body HARD so I can spend some time attending to it.

I will have to lift HEAVY weight. I will need to run LONG distances. I will need to do more and go harder so it’s not as easy to ignore the sensations in the body.

It feels good to feel the quads at capacity. It feels good for sweat to drip from the arms.

But it’s not sustainable.

Because the mothership grows restless.

 

 

It goes like this

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I am screaming on the inside.

Bruises in the shape of finger marks.

Headlocks.

Cages.

What is happening in Australian schools to our autistic children?

11 cases of abuse of autistic children at school in 15 weeks reported in the media. Just one of those stories was about 40 separate cases of abuse perpetrated by teachers. And that’s just the reported cases. This is widespread abuse. Our schools are not safe for autistic children.

I am filled with an anger that ripples around inside my body and ricochets off my internal organs.

Autistic advocates fight hard to be heard. But the media doesn’t listen to us. They listen to the fat money organisations that grow rich from their ‘early intervention’ programs.

It goes like this.

Media reports child locked in cage at school.

Media gets comment from fat money organisations, who state that we need more behaviour programs for autistic kids in schools.

Which is just swell, because hey, fat money orgs provide a range of these programs and look, there’s their website conveniently displayed so you can get on it and ‘fix’ the children now.

And pretty people with pretty words are invited onto flashy morning TV to peddle their wares and make money off trying to ‘normalise’ our children.

I am hurting in the left hand side of my chest cavity. It’s tight in there.

Who will protect our children when the dominant rhetoric is shaped by non-autistic voices who jump to the defence of over burdened teachers and oh-those-poor-parents?

Who will protect our children when no one wants to consider their trauma, but instead wants to defend their abusers?

I will.

My autistic friends will.

The autistic community will.

We will take our rage and hurt and disappointment and exhaustion and fear and internal SCREAMS and we will keep fighting for autistic children everywhere.

You who abuse autistic children, you should know that we will not stop fighting you. We have taken you on and we will not let go until you leave our children alone.

 

 

 

 

 

 

 

 

 

Mis-educated

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I had no idea how badly disabled people were treated in our society.

I thought the course I did on disability and my social work degree meant I knew something. I learnt about ‘people with a disability’. I knew that buildings needed to be accessible for wheel chairs and that you needed to use ‘person first language’ so as not to offend. I knew it was wrong to park in a disabled person’s car spot and that they needed to be afforded the same rights as able-bodied people. I read some journal articles from prestigious academic journals and could summarise a sketchy account of the Disability Rights Movement.

I thought I had been educated about disability.

I had been Mis-educated.

Now that I am on the inside of disability, I realise I knew nothing IMPORTANT about it at all.

I didn’t know the shit that disabled people have to endure every day from a world that sees us as broken and burdensome.

I didn’t know that every day brings some moment of rubbing up against abelism and that this is grinding and disturbing and shocking every time.

I didn’t know that not a day would go by where a news story wasn’t published somewhere in the world about the mistreatment, torture or death of disabled people. And I didn’t know that in response to this, our abusers were afforded sympathy and let off.

I didn’t know that our opinions are valued less than non-disabled peoples, especially in matters relating to disability.

I didn’t know that a special kind of fear and hate was reserved for autistic people, whose disability is often hidden. I didn’t know that this was especially the case for autistic children.

I didn’t know that people so tragically misunderstand what autism is and that they are invested in keeping it that way.

I feel like I’m entering a rabbit hole that has forever changed what I thought I knew about people. What I thought I knew about me.

In your world, I am disabled.

Not broken. Not faulty. Not hypersensitive. Not fragile. Not weird. Not less than. Not strange. Not weak. Not a failure.

I think we are very, very afraid of disability. And I think that is an ugly, ugly fact.

 

 

Losing….speak….loud

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I am losing my will to speak out loud.

I talked in my head as a child and I talked out loud.
I talked in my head as a teenager and when the words made it out, I made sure to sound like the other girls.
I talked in my head in my 20s and I talked at my partners and I never shut up.

I used all the words. All the time. I monologued my rage and my sadness and my despair.

I put people to sleep with the sound of my endless angst and I woke them up again to keep on speaking it.

20 years later and I have so few words to speak out loud.

Maybe I used them all. As if I only had a limited lifetime number and I overdid it with walls of words in my youth so that now, in my 40s, the words from my mouth have dried up.

I am losing my will to speak out loud.

I can say ‘soy flat white please’.
I can say ‘thank you’.

Anything more than that and it takes too much practice to imagine the words over and over before they get to my mouth.

Anything more than that and my throat closes off like there’s a mean lump in it that won’t let the words past.

I push through so no one knows that I am in pain and I kick on my overdrive to make it to the end of the conversation. And when I am safe again in my own space, I fold into a small thing and wait it out until it doesn’t hurt anymore.

Inside my house, I have words for my children, but mostly I listen. I have words for my partner, who has fewer words than me. We grow more silent and it feels right.

At work, on the rare occasions left where I am called upon to speak out loud, I am pretending.

I want to type to talk at work because typing doesn’t hurt and I can think and communicate both at the same time. I don’t say ‘yes’ when I type as a default. I don’t type ‘I understand’, when I don’t. I don’t retreat regretting what came out of my mouth and I don’t spend hours trying to figure out how to undo what I said. Typing gives me much needed pause time, to get it right, to say what I want to say.

If you want to know what I’m thinking, then it’s best that I type it.

I google AAC and special interest on it hard, and make plans and bookmark pages….and then I turn away scared.

How do you find the courage to change the rules of communication when everyone has seen you be one way, and now you want to be another?

I have lost my will to speak out loud.

Stomp

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First published on the Walk in Our Shoes Flashblog

My relationship with shoes has been complex. As a child, I favoured no shoes and this was fine because back then, most kids didn’t wear shoes. Confusion first hit during adolescence, when the other girls started experimenting with high heels. I felt like high heels were part of the entry permit to mid teens. Which was a problem because they just didn’t make any logical sense to me. Why would you walk around with your foot at that ridiculous angle? I did try though. But it never felt right. To start with, I just couldn’t walk in the things. I would teeter around and despite my older sister’s encouragement that I just needed to practice, practice did not make perfect. So I put them aside.

I tried again many times. Mostly when some kind of formal occasion beckoned and I knew that the required uniform involved fancy shoes. Flats weren’t a thing in the 80s, so it was high heels or stick out. I wore them on occasion, but I still stuck out, because how do people actually walk in these things? No matter how much I tried, I couldn’t pass as a high heel wearing regular late teens/early 20s female member of Team Neurotypical.

So I found a detour that took me away from high heels. I became Inner City Doc Martin Don’t Mess With Me Because I STOMP Womyn. This mostly helped me be invisible as I surrounded myself with members of this same tribe. But my shoe problems weren’t over.

Because passing still mattered to me. Job interviews. Weddings. Occasions where my Docs would not buy me acceptance. Inside I didn’t know why I couldn’t just wear the fancy girl shoes and fit the fuck in. Or why I couldn’t just wear what I wanted and not care about the fact that I didn’t fit in. I didn’t know why I was different. Why pretending to be like the other girls hurt so much.

Somewhere around my early 30s, I had an epiphany. I decided that I would no longer attend any events that required me to wear shoes I didn’t want to wear. So I stopped going to the fancy occasions, threw out the boxes of worn only once high heels and said never again. It was Docs and Converse and that was it.

My wedding was my shoe coming out. I had a pretty dress. I had fancy curls. And I had my vegan docs, complete with pretty laces. I stood solid and grounded and anchored in myself. This was my day. And I made the rules.

Image is of a pair of legs in black Docs with bright blue shoelaces and the bottom of a pretty blue dress
In my early 40s I had a deeper epiphany. I discovered I was autistic. Being autistic doesn’t explain why I don’t like high heels, but it does explain why I always felt different and why trying to pass as a fancy shoe wearer hurt so much. It helped explain why the comfort of shoes on my body matters a lot and why I can’t NOT be aware of my feet if they are uncomfortable or wrapped in something fraudulent.

Walking in my shoes means ignoring the looks people give me, the rude comments they sometimes make, the assumptions about who I am and what I represent. To walk in my shoes is to filter out the neurotypical world enough that it doesn’t chip away at me. And to look for others that walk in their own shoes in their own ways so that I am not alone.

I wish I had known earlier that I was autistic. I like to imagine that I would have walked comfortably in my own shoes a little earlier.

Sidelined

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I’ve got some significant disappointment going on. I’m one of the lucky ones that has managed to find a job that mostly works well for my autistic neurology. It took until my 40s to get there, but I am privileged to be paid well and for my employers to be open to supporting my needs as a disabled woman.

I think that’s the first time I’ve called myself that. Disabled woman. That I ‘said’ it first in print makes sense, because these days, I try to limit the amount I have to speak out loud outside of my house.

Which is where the disappointment bit comes in. It’s dawning on me that despite the very best wishes to accommodate me, my disability will impact on my ability to thrive in my job. And it needn’t. But it does.

Because it’s one thing to understand that being present for large meetings, participating in staff functions and meeting over coffee with a group of colleagues to discuss some aspect of work is not something I can do without causing myself harm. But it’s another thing to understand the ways that NOT participating in these things holds me back.

Because it’s one thing to say that I don’t need to do these things to do my job (which I definitely don’t), and it’s another to watch as others advance their careers by being able to do just these things.

The default setting in our workplaces, in our society, is set by neurotypical, non-disabled people. They set the bar. They make the rules. They may attempt to alter the rules to make it possible for those of us that can’t reach the bar to keep playing. But there is a cost of doing this and the cost is watching ourselves become side lined.

This is disappointing. Because despite doing my job really well, I will struggle to move forward without the ability to do the ‘corridor’ talk, to do the coffee ‘catch ups’, to do the endless rounds of  meetings.

I wish our society and our workplaces could see this. I wish they could understand that by sidelining us they are missing out on our contributions.

And I am one of the lucky ones.