It’s my birthday and it’s also International Day of People with Disabilities.
#IDPWD2019 a day to acknowledge our struggles, be at one in pride & commit further to acting together to remove systemic inequality. Whether you like international days or not – that’s my intention today. Plus it’s my birthday, so for me it’s a celebration of survival.
There’s been a lot of talk about invisible disability and I’ve been recovering lately from some experiences I would rather not repeat, but that sadly have experienced a lot during my lifetime.
Recovery means doing what you have to do. That might mean talking or not talking, writing, resting, rehab. It also means dealing with the stigma (your own internalised and other people’s) associated with recovery.
Don’t let the “today tonighter’s” get under your skin. These are the people who cry “fake” when they don’t understand disability issues like; semi-ambulant use of a wheelchair or that screen readers help low vision people use a mobile phone or people who think disabled people are broken. The people who say “it can’t be that bad” to criticise people taking care of themselves. This is the ableist shit we cop from people who buy into the burden arguments of the old medical models (whether inadvertently or not) and this blog entry is not for them, it’s for PWD.
So here are my tips for dealing with ableist S.H.I.T.
S – is for Shame. Shame and stigma are weapons and it’s something we are learning to resist (internal and external shame). Try to work with kindness to yourself when you feel you are self-shaming. For example, mental health issues are experienced by 85% of the population and probably everyone at some point in their life, if we are honest. If you’ve had someone tell you to hide a non-visible disability because you can – gently remind them reasonable adjustment is a right and shaming you is harassment and hurtful. Remind people (or get an advocate to remind them) that disability is not to be ashamed of and that shame can be a form of abuse.
H – is for Hate. As an Autistic person I struggle with people’s hatred. I just don’t get how people can hate with passion. How it translates into thinking that because a disabled person rights are somehow special treatment – or that we are a burden. This is hatred and it covers a view that disabled people are less than them. I call it out and have tried to learn to call it out with compassion, but none the less call it out. Hate is hate – even when sheathed in politico speak like “merit based” arguments used to diminish what a disabled person might need to contribute. The whole rotting pearl of “we can’t change everything for one person” crapola when people merely ask for a reasonable adjustment. Same with poor taste jokes and casual use of disability slurs. Call out people who slag off someone else because they are different and if you can’t safely call it out – allow yourself to get space away from them or get an advocate and get to safety. You do not have to put up with hate.
I – is for I. Allow yourself to be an I. Hold space, take up space. You are enough.
T – is for Time. Things are getting better over time. Take employment, for example. In 3 out of the last 4 jobs I have disclosed disability safely. Compared to before that when you couldn’t even talk about it. Things are getting better, it may not be quick enough for many of us sadly, but together we are making change.
Keep on keeping on. We can do it. #disabilitypride
On the 18th July 2018 I drove into Melbourne from Alice Springs to do a season of Melbourne Fringe (via Sydney Fringe) and to settle here after an assault in my day job left me depressed and unhappy. This decision came after being in remote or overseas locations since 2005. That’s not unusual for my profession. I am an anthropologist by day. In my 40’s I pursued what I had been afraid to all my life – being a comedian/writer/performer at every opportunity I can find.
I’m a variety type of human. Some would say that’s because I am Autistic. I think that’s accurate, I need novel ideas (and also more structure to pursue them than other humans, which a common contradiction in the Autistic experience). But also, I am just easily bored. But living back in Melbourne (last time I was four years old) has been more than transformative – opening up opportunities to be fully authentic on stage that is allowing me to be the same in life.
Art just doesn’t imitate life, it is life. It makes you feel and do and change. I am one of those people who still thinks comedy can be an artform. I do skits, character and musical comedy with storytelling/narrative observation comedy woven in amongst it all.
I don’t perform as often as I would like. I have some big sensory and social challenges to work around to get on stage, but once up there I love it. Venue and performance accessibility is and always will be an issue for me, but I have carving my way regardless.
The last 12 months have been personally transformative, or rather, revelatory. I hold comedy 80% responsible for that.
I knew I would have to deal with culture shock. The shock of coming from the remote Northern Territory to a city was one aspect. But I had lived in a large Chinese city too, so that wasn’t the most of it.
What I found was that I wasn’t prepared for the changes it would prompt in me – that would allow me to be me. You may recall a post where I had been diagnosed with depression just before I arrived in Melbourne.
I am happy to say I was not depressed, I was oppressing my true self. That caused sporadic depression as not being authentic invariably does. That’s not actually any rocket science really – but something so many people struggle with.
A kind of period of chaotic and complicated personal change took place in the last 12 months. This wasn’t a learning curve. This was a learning mountain epic filmography, complete with crevices and dodgy theme music.
I knew I had to leave an mask behind when I came here, that Melbourne would have a much more accepting culture. I had already started to drop the mask when I started doing comedy in 2016. I fully accepted that the diagnosis of autism I had been grappling with (first mentioned to me in 2006, partial diagnosis for years until recently) and started to get my head around the fact it made me who I am – it didn’t make me less.
In my first ever comedy writing workshop, before my very first performance in Darwin I had a lightbulb moment. I was confronted with an exercise often done in comedy classes. Two truths and a lie. I did it well, but mainly because all of my stories about my life are weird.
My answers were:
I nearly married a Tunisian olive farmer during the second wave of the Arab spring revolution in 2011
I have just come back from living and working in China
I’ve been married three times
No one picked that I have only been married once. The other two are true. My life and it’s funny stories made other people laugh and I love making people laugh.
I refuse to lie on stage. I choose to embellish stories to get bigger laughs, but not lie. In the process of finding material it has all come from my experience and research and knowledge combined. Experiences such as being a late diagnosed autistic person, a late coming out queer (I actually outed myself on Channel 31 BentTV) as an ENBY-femme and gray asexual (I can hear some of you opening a Google tab…).
It’s not catharsis either, as some cynics have said to me. It’s about me OWNING who I am and poking fun at world that dictates to us who we should be. Plus I think the performance world is changing. We are challenging non-disabled actors playing disabled parts. We want real. That’s a good thing, not something to be cynically given a clinical label to.
There is part education though. A fellow comedian once said “your comedy is like a TED talk, only funnier”. I will take that. That’s fine with me.
Performing out and proud for “Wear it Purple” event at Hares and Hyenas – Produced by Teddy Darling. Photo by Margot Fink. Image description: Jacci standing on stage, arms raised, mid parody song, dressed in black with pride striped rainbow socks.
But putting my foot on stage for the first time prompted a wave of personal change for the better, but often through tumultuous times, like I never expected.
The mask has broken. I am me on stage and increasingly more so than ever – off stage.
The comedy journey has been harsh and hilarious and helpful. Sorry about the alliterations, it’s one of my autie quirks.
I refuse to do the low hanging fruit of comedy. I aim to “punch up not punch down”, critiquing systems and the language of bigotry and prejudice. If some think attacking bigotry and prejudice is punching down – then Google “false equivalence”.
So through four years or so of dabbling in comedy and several large-ish productions that I have written, produced and performed in (including the recent Melbourne Fringe opening night variety showcase “Tickets on Myself“).
A couple of thoughts why performance has set me free:
Somewhat paradoxically, the opportunity to lie on stage (which I chose not to take) freed me of expectations to be other than myself. Yep, you read that right. Whilst I have never been described as fake, suddenly I was presented with something that I realised I had been doing all my life – and no longer wanted to do. To stop lying to myself about who I was (we call this masking as a survival technique for Autistic people, but it’s nearly always harmful to us) and be myself.
The influence of some amazing performers I have met along with way who are completely comfortable with who they are. Some of these people are big names, some are not. But none of them subscribe to “fake it until you make it”. They ascribe to developing confidence, self-belief and bravery, which is something quite different, in my humble opinion.
Up until six months ago I was scared. Recently I have found that holding the stage made me brave. So I went all out and revealed my true self. And it feels fucking marvellous.
I need to give the incredible Nelly Thomas a huge shout out. You may remember my post about her new book about neurodiversity, Some Brains. I was very privileged to have her as my Melbourne Fringe Navigate Program mentor.
The weekend before Tickets on Myself, she reminded and encouraged that me I only had one job – to bring joy.
And I did. I hope I made you proud Nelly. Thank you – you believing in me still makes me tear up (in a good way).
Finally, I remember being in this massive t-shirt market in Guiyang in China in 2014. There was a wall covered in hundreds of the one t-shirt slogan, “Be Yourself”. I remember it made me laugh heartily out loud.
The irony was here were mass produced t-shirt proclamations were telling us something the world least expects of us.
Because if the world did give us permission to fully be ourselves, the t-shirt industry would go broke.
After the world stripped me of the safety to be me, the comedy stage gave me myself back. There is no going back now and that’s a beautiful thing.
I hope everyone puts down the t-shirt slogan and finds their own personal comedy stage, figuratively and literally, to be who they are, not what the world expects them to be.
Whilst it’s not currently present in my life it sure has been in the past. Something I don’t wish to repeat. Aspie women are especially susceptible to “gaslighting” as I’m sure some men also are.
Gaslighting is a common form of manipulation (that anyone can experience), particularly when someone wants sexual access to someone but has no intention of that being respectful.
I hope it also highlights that gaslighting is sometimes seen as socially acceptable as part of “courtship” or flirtation (“treat em mean to keep em keen” rubbish) and thus harder to identify/deal with. However it is also a well recognised form of psychological abuse. I hope this poem helps describe that experience:
Start with a Queen of hearts and dry ingredients of care,
Make sure you prepare her when her emotion is laid bare,
Add compliments which she might be in of thorough need,
Combine her insecurities with sentiments, she’ll heed.
Then slowly tip her back into the objectification pot,
Gradually turn up the sexual commentary to “hot”,
Flip over her hesitations, say “But I like you for your brain”,
Withholding your feelings until she simmers in confused pain.
When you’ve tasted her sweetness but turned her bitter,
Turn up the gaslight again, pretend you’re not hitting on her,
If to expectation she does not quite seem to want to rise,
Add a good splash of ghosting and well picked lies.
Add salt to wounds and slowly reduce her down,
Slowly separate her from her previously held crown,
Pretend to listen and give her an occasional gentle stir,
Recite over the pot “But I’m not really sexualizing her”.
You’ve got her to boiling emotion but you’ve not listened,
Now her anger, like shining glaze, is starting to glisten,
Now you can say her crazy recipe is starting to go off,
Add a pinch of blame to her feelings, use lies to top.
Serve her broken heart up as proof of your skill,
Move to the next vulnerable woman at your will,
Season her with tales of how her before was madness complete,
Butter her wisely, the recipe takes best if you keep it to reheat.
There have been a lot of you lately. In the press. On social media.
I hear how you demean other women for speaking up about harassment and abuse. I hear your internalised misogyny.
Here is what I hear you say:
“Don’t waste police resources for a small thing like harassment”.
“Get over it”.
“You need to deal with your past”.
I hear you. I love you.
If you are ever harassed, abused or assaulted I hope you report it. But I know it’s not easy.
But I will gladly stand beside you.
Believe you. Hear you. Love you.
I’ll hear you and believe you if you are harassed and need support. I’ll choose to love you.
I reported violence to the police and they told me he loved me. For a headlock.
No one heard me. Not even the police.
Since then I’ve seen huge changes with police culture and I’m happy to report now – but many voices once told me not to. I nearly died. But I’m here and I’m not letting fear get the better of me.
I hear you. I love you.
That’s just one example of horrors I have recovered from. Talking about them doesn’t mean I haven’t healed. It means I can hold peace with my past and be strong enough to carve a better way forward – with honesty.
I love me now. So I won’t hesitate to stand up to harassment and abuse – even when it’s you, another woman, trying to strip me of my right to be heard. I hear you extending the reach of the patriarchy with your compliance, your collusion. I love you.
I feel fear too – but I face it. I’m hopeful that you can one day too.
But I’ll love you too. I’ll call you out on your hatred and condoning of harassment when you diminish its impact. That’s how I’ll love you.
I’ll process the hurt you inflict on me and I’ll choose to love you after you’ve shown how much you hate your own sex. But I won’t buy into the narratives that say women like me are man haters for speaking up.
I hear you. I hear how when you minimise other women’s experience of harassment and abuse, how much you dislike your own sex. I love you.
I love you. I hope you can learn to love your own sex and face that internalised misogyny head on.
Dogs. Some are dangerous. Some are not. But you don’t go up and attempt to cuddle them all without making a thorough assessment, do you? Do they look like they might bite? Showing whites of eyes? Ears back? Growling? Please note they may still wag their tail when feeling aggressive and can still be dangerous – so stay away when they exhibit all or many of these behaviours.
People. Some are dangerous. Some are not. But you don’t go up and attempt to cuddle them all without making a thorough assessment, do you? Do they persistently breach your boundaries even when you make them clear? Do they insist on behaviours you have asked them to stop? Do they get angry with you for asserting your personal right to feel comfortable and safe? Please note people can smile and look presentable and still be assholes I want nothing to fucking do with and I will exercise that right…and I’ll be happier for it (true story – you don’t end up lonely – you end up loved!).
Well I am 75% packed for my next adventure in life. I was heading to Brisbane, but the call of Melbourne and comedy and writing and arts was too strong.
So, it’s 2200 km instead of 3000km! That’s a bit better. I am nearly all packed up, my car is filled but I can still see out the back window.
I haven’t had much time to think today. Which might be a good thing. I do love Alice Springs, but it’s time to go and expand my horizons.
So, tomorrow night staying at the friends and Sunday – off to Port Augusta (1200km). So I may not get a blog post every day, but I’ll try.
Let the adventure begin.
