Love Reminders

Since coming to live in Melbourne I’ve been blessed with awesome people who’ve supported me. The “love reminders”.

You know that some things have been challenging lately – but my art, my comedy and my home life are just…well the only word I can muster…magic.  Got to open Melbourne Fringe festival with a variety showcase about identity, diversity and pride with a bunch of local  heroes, Sally Goldner, James Williams, Kath Duncan, Naomi Chainey, Larissa MacFarlane and Yvonne Fein.  I was very lucky to be mentored by the awesome Nelly Thomas as part of the Melbourne Fringe Navigate mentorship.  A big thank you the Fringe team (and special thanks to Carly Findlay, Patrick Hayes and Laura Milke) – you are legends.

ticketsonmyself
Image description: Jacci standing on stage dressed as burlesque x circus x queer zombie Marie Antionette with James Williams on guitar with a look of concentration on his face. Behind them in a screen with the words “I’ve filled in your forms, you’ve already got the information. Photo by Nelly Thomas.

I’ve had one amazing workplace where I was privileged to work with some of Australia’s biggest brains and expertise in the violence prevention field.  Since early October it’s been bumpy with change (some of it quite nasty).

BUT! While the daily challenges still exists I’ve been lifted up and reminded of my value by fellow artists, scholars, comedians and friends (new and old).  I’m shouting out to a few here, but there are lots of you and I love you all.

I was faced with a no fault eviction the day after the show (September 13) and for a while it felt like everything I had done was for nothing.  The house move was hard – but made so much easier by wonderful people. Together we did it and have a new home I love.  A special thank you to Nelly Thomas for her support during this period.

These challenges are made harder by the world around us as Autistic people.  It’s really important we don’t have people around us who are ableist, but who believe we can get through.

*A reminder of some of this challenge is this article by Terra Vance sums up how a lot of us spectrum folk feel about the challenges of the neurotypical world present us – https://blogs.psychcentral.com/aspie/2019/05/308/

I am very fortunate people have banded around me and lifted me up.

People reminded me that speaking up when you need help is healthy. That is doesn’t mean you are weak or that you “have problems” – it means you are strong. This blog is intended as a testimony to that.

The bad old days of letting feelings fester and not being honest about situations should be over.

We know that approach – of pretending everything is okay when they are not causes mental health to decline.

I am resilient because I’m honest about my feelings.

I am resilient because I walk away from toxic people and situations.  No, actually I run now.

I’m about to publish my first book. I do great comedy that I love. Yeah things are tiring – but that’s life for people like me.

My home life is fucking brilliant.

My commitment just before my 49th birthday is this – I will not tolerate hate and I won’t listen to people who sanction hate.  I’m going to stick with the love reminders.

I’m queer, autistic and proud. These are good things to be.

Tired

I feel like my soul is tired.

I’m tired of this endless roundabout of abuse and discrimination.

Tired to the bone.

This is chronic illness. The co-occurring crap of my life as an autistic person triggered by lack of accessibility.

Needing to shut myself away to survive and hoping I’ll resurface again.

I keep thinking if only I could find the one place my autistic creativity is harnessed so I’m not exhausted. Where I’m not told to be neurotypical in order to exist. Where is that place?

That will be the balancing point and I’ll enter my 50th year feeling….feeling….

How do you know what it is if you’ve never felt it? Is it connection? Is it belonging?

I don’t know how that would feel. Those are things I see the neurotypicals feel.

Knowing they fit. Knowing they belong. Not always on the outside.

That would be nice.

revelatory comedy

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.

haresandhyenasmargotfink
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:

  1. 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.
  2. 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.

A poem about tea

I think it’s become important to me,

To find someone to bring me a cup of tea.

I think I’ve been feeling it seems impossible,

I can be quite particular and somewhat incorrigible.

I don’t mean just any old cup of tea,

I mean tea served because it’s served to me.

I don’t feel like this very often at all,

Except when life’s challenges seem an order tall.

Is it fair to want someone to share the burdens of life?

But honestly I mean good times as well as strife.

Maybe I’ve been alone now for way too long,

And I’m awfully afraid I will get it terribly wrong.

Also, it seems I have issues with the want of time,

I don’t allocate any to the subject of this rhyme!

If tea is a metaphor for love and love for me,

Then I don’t drink tea very often you see,

And maybe I’ll never find the right blend for me.

Medicalised violence and the experience of being Autistic

I wrote this a while back and haven’t posted it until now. Today it’s probably apt to post. I work hard to manage sensory issues as an autistic person.

When several life stressors happen at once I cannot cope as a result. I cannot turn this experience off. It’s constant. I need help, even if you think I can manage something – stressors in succession or together is the exception. I may be able to if I haven’t had much sensory overload, but now I live in a city, that’s rare.

This is the disability some people like to tell me I don’t have because they think if I manage it I either don’t have it or are not disabled. Just because I “manage” it doesn’t mean it’s not a struggle. This is the disabling bit. The worst thing about stigma is people not believing autistic experience.

Sometimes the medical profession is guilty of this.

Some non-autistic people will be able to relate to aspects, but that doesn’t mean “everyone is a little bit autistic” because that’s simply not true (and another post entirely).

I didn’t talk about this for many years – why? Here’s some examples why:

1. Optometrists would recommend more tests. I see sound and I would struggle to describe what I see and how it manifests. Now the best description I use is “ it is like a watercolour brush with not enough colour (almost translucent but like light through a stained glass window) has been waved around people and objects”.

This can be a pleasant or horrible experience and it’s difficult to predict. It’s part of my experience of Synesthesia

https://en.m.wikipedia.org/wiki/Synesthesia

2. I have differences taste reactions to some surfaces that I come into contact with (including clothes). A lot of things give me an acrid taste in my mouth like diabetics may experience. I’ve had at least 20 tests for diabetes because I’ve mentioned this. You get a bunch of blood tests and fasting and sugar tests – all unnecessary.

3. Psychiatric responses to my hearing hyperacuity. I hear everything, all the time. But some sounds are soothing and others physically hurt. It depends on how saturated I’ve been over time and the complexity of noise. Generally though things like trains and traffic are okay – almost soothing. People noise in shopping centres and milling around in the apartment above – not pleasant at all. After a while of complex noise I start to shutdown and it can lead to a meltdown. It’s not a mental health condition that causes this, the sensory stimulus is the cause.

Meltdowns are not panic attacks, but this was the medical response. I’ve been medicated when I didn’t need it and hospitalised when I didn’t need it.

Hospital environments are sensory hell for me.

This is why we mask (or hide it or fake as some cruel people like to say). See this:

https://www.theguardian.com/society/2019/sep/13/women-better-than-men-at-disguising-autism-symptoms

Because when we talk honestly we are punished for what we experience repeatedly under the guise of “do no harm” of the medical model.

This is something I call “medicalised violence”. I am not saying the medical profession is consciously doing this. Not at all.

But treating people as the sum of their parts and not the whole has failed to detect things like synesthesia (and autism).

There’s bunches of scholars who’ve written about the medicalisation of experience (and I first learned about it at uni during a bioethics course). I won’t go to another doctor (yes, these happened) who says things like “you have anxiety you can’t be autistic” or “do you feel emotion?” or “you don’t look autistic” and recites other myths. I have no reservations about leaving a doctors office and not coming back anymore, because frankly, I’ve had more than enough of my fair share of ignorance.

Microaggressions add up to be little t trauma and spill out into big T trauma over our lifetimes. Make no mistake about it.

So, I won’t be quiet about this anymore. It’s “not playing the disability card”, it’s about accessibility and my right to exist on my terms – not the terms of someone else. Silence is not an option (and for me it literally isn’t – I’ll never really experience it, my brain can not filter noise). Social change is rarely quiet.

*note: I will defend a good doctor to the end of time. But the issues around the doctor/patient power relations are well documented and discussed.

I don’t want to be inspiration porn

I’m writing this tonight because I am absolutely desperately over the struggle to keep myself safely and accessibly housed.

7 years ago I fell apart and had a complete physical and mental breakdown, lost my business (which I sold my home to create with the profit), my savings and all of my super trying to get well.  Because I thought I could push myself beyond my health and disability issues.  Because I thought I was inspiration porn.

This last year was the first year I felt hope again. All my wage went into setting up a house again after moving to Melbourne with my own basic things (really cheaply I add) and I felt proud of myself. My own washing machine, my own couch.

I’m Autistic (level 2 needing significant support). I have pin and plates and staples in both legs that hurt like hell every day. I don’t medicate.  I should use a cane, but I don’t feel quite there yet, I want to carry on without for a bit more (I am okay about canes, but it just feels like another thing to cope with).

I have Hashimoto’s which leaves me aching all over. I have a form of secondary hypertension caused by an old brain injury that causes all manner of problems, particularly when tired and stressed.  I can have a stroke really easily if not careful.

Being in secure housing is important as a result.  I was reassured over and over my tenancy was safe, including as recently as July.  This is my 14th move in ten years, including three interstate and one overseas move. Chasing work, chasing some security again.

I spent $8000 I saved of my wage this year so I could get a service dog (including full Autism assessments that I can’t get on Medicare) and Pepper has literally saved my life this year.  Because it’s also been really hard. I look at her and what she does for me and what I do for her (she’s a rescue) and I want to keep going.

In September I put on a Melbourne Fringe show that cost me the my savings because I wanted to establish a show for featuring difference and pride. I’m exceptionally proud of it, but the cost has been too much.  An integral feature of that was livestreaming, but a bunch of shit went wrong and it was all for nothing.  Not accessible as I had planned.

I focussed on the positive and the rest of the production, but the whole point to me was ACCESSIBILITY for neuro-diverse audiences.  I did have a plan for the cost blow out if it all went wrong.  I had  a plan for the next three months, or so I thought.

And just after that financial blow I got my last loan to pay living costs eaten up by production and some vets bills.

I hate asking for help.  Because I do so much in the world and push myself to keep working and not be on a pension, to keep doing what I love that people go silent when I do ask for help.

I can’t bail myself out of the situation I am in now, I am just as exhausted as I was 7 years ago and just as unwell.

I know there are people who know me who know I help others as much as I can.  I’ve been known to give my last $50 bucks and eat noodles for a week.  I’ve done this so far this year too.

Then the landlord decides he needs to move back in and can give me only 60 days notice, literally the day after the Fringe event and I get the letter last Tuesday night a few days later.  No notice.

I now have to go through an adversarial system to even be able to say “I’m disabled, I need longer and I need help to move”.  And that kind of thing is pretty hard on this brain and body.

I start my first permanent job and first real hope for future security I’ve had in ten years on October 2.

But I am going to be scratching to try and stay housed and I hope I can perform without getting so unwell I end up in hospital.

60 days for me is, well, devastating and at the moment, incredibly difficult and although I have survived worse, including a recent sexual assault in 2018, I can’t often feel when I am breaking until I am.

I live alone so I can work.  I can’t live with others and work for longer than a few weeks.  I simply can’t handle a busy household of people and the sensory overload I experience. Not for long anyway.

People tell me how amazing I am.  Except when I need help.  Then it’s just “sorry I can’t help” or silence.

As an autistic person I don’t notice how much I am breaking until I hit the floor. Or end up like I am now, with bruised arms from a self-harming meltdown. I try my best and one strategy has been to ask for help of late.

I’m tired of a world that only sees me as inspiration porn.  I’m more than that.

I’ve been trying to get an advocate.  I am struggling to keep self-harming meltdowns at bay.  Last week I got half way to a suicide attempt and Pepper prevented that.  Pepper and her leaning into me and her gently herding me around – stopped me.

I am more than currently aware I am nothing more than inspiration porn.  That funny person in a vulva suit on stage.  Who gets up there even though it hurts her and even though, from a sensory and anxiety perspective, getting up there is hard to do.

I get up there because I like to make people laugh.  When people laugh at me I feel worthwhile.

It makes me feel alive and for a while I move beyond the pain I feel every second of every day.  That feeling, and Pepper the Greyhound keep me alive.

I am so close to recovering from 2012, but it’s been hard slog with major health issues, largely on my own, no family to share costs with.

But at the moment me, this object of inspiration porn, again needs help. Again? I hear some mutter? Yes, it’s constant this disability thing.

Some people who’ve helped before remind me what they did for me last.  Going on this example, I was thinking that I should go back to that student in the street I bought a pie and coffee for because they were upset and remind them of that.

Some people will always remind me of how they helped and how grateful I should be.  This is how we treat people with invisible disabilities, like they are complaining again.

Others just keep on helping and I am so grateful to them.  The truth is I am grateful and I do my best.  My best in the world is how I can give back. Or I help someone else.  Pay it forward.

But please stop telling me I am amazing.  If you want to help…maybe help me  write an email for me, or offer me a meal or ask to make a phone call for me. Or help me get a advocate.

Maybe just talk to me and remind me of some adventure you went on or ask me about my favourite adventure. Maybe try and make me laugh.

Maybe remind me why I should stay on this earth. I’ve got a fundraiser going and I understand people may not be able to help financially.  But there are other ways.

Don’t send me links to Lifeline or “have you tried <insert services that are so overburdened and underfunded I can’t access them>” (that’s the majority by the way).

I can guarantee I’m trying those avenues as are many trying to access disability and advocacy services in the current political environment.

Trust me, I wish I could step out of this crap meat suit (including the brain that everyone admires) and start again.  My life expectancy is way less than everyone else.  I just want to give my best shot while I can.  Fairer fucking tenancy laws would help.

I am here, but it’s only by a thread at the moment. A shiny fucking inspirational thread.

*UPDATE – despite writing this at my lowest, a group of amazing people banded around me and I was moved into a new place by mid October. It was a relatively easy move as a result. I think it’s important to talk about vulnerability and be raw in how we communicate – even if it makes us feel uncomfortable. It’s okay to feel shit and it’s okay to talk about it.

I was lucky enough to have an amazing supportive ACCESSIBLE workplace up until October (but unfortunately not since) where I felt accepted and reasonable adjustment was integrated into a flexible environment. This means, that even with the challenges I have I can still work. However, accessible accommodation is a lot harder to achieve and the disability community in Melbourne can all speak to this.

For more interesting information on what accessible accommodation looks like for Autistic people – check out:

https://www.amaze.org.au/wp-content/uploads/2019/06/Amaze-submission-into-Accessible-Housing-Options-Paper.pdf