Being okay with not being okay

People who know me really well are fully aware I struggle with feelings of social isolation, even when surrounded by people who care. I’m currently trying really hard not to give into feelings I don’t belong anywhere and each day is a monumental exercise of survival. I’m trying not to give up because I still believe I have something to offer, now matter how minuscule.

With a Royal Commission into abuse and violence of disabled people (I’m exercising my right to use identity first language here) coming up – I have lots of stories to share. Mainly about trying to get help in the so-called health system and being told similar to the 17 year old in this story.

https://www.smh.com.au/healthcare/autistic-people-dying-at-twice-rate-of-general-population-new-study-20190225-p5105t.html

Some of the stories from my 20’s include violence, restraint and abuse from healthcare professionals and family members. All as I grappled to come to terms with what I now know to be AS meltdowns and an escalation of issues after a significant and life threatening injury.

Because of regular experiences like that I’ve got to the point where I don’t believe that I deserve a family or partner and for the last 7 years I’ve avoided new close relationships – because I can’t handle anymore violence. When it comes to close personal relationships I can’t tell when someone is trying to take advantage of me and people have done exactly that.

I’m also going to talk publicly about what happens to us when we go to emergency rooms, when we are told that we need to be sedated and go home and sleep (as a GP recently told me) because of other people’s violence against us. How we are dismissed and abused further when we start to crack because we’ve been trying to express things in our own way after months or years of trying to get help. When we are told we are mental or crazy for not wanting to be assaulted or verbally abused.

Fuck “Are you okay?” campaigns. Cause when we are okay with not being okay we are dismissed, ignored or told we are burdens.

Not sure why we need to spend millions on campaigns to justify asking for help when you ask for help to be told to suck it and see. Makes not much sense.

Most of my wage is now spent on just trying to keep well in the hope things will get better. I’m resigned to the fact I have a short shelf life and I’m determined to do what I can so that others don’t go through what I have. It’s not about me. I don’t care enough about myself for it to be about me.

In the 80’s and 90’s I could access services without it costing $180+ an hour (yes, after the Medicare rebate and no, private insurance is not helpful), now I’m pushed from pillar to post trying to get a therapy that has worked for over the last 25 years.

I can’t turn off what I experience. I can manage it, but there are times when I need more help and I’m asking for help only to not be able to get the right help because it’s $250 an hour. I get 10 visits a year at $180 and I need 30. Plus I need OT I can’t afford.

Then people try and offer essential fucking oils like people say “the only disability is a bad attitude”. To cite Stella Young no amount of smiling at the system is going to change it.

I want to work. I don’t want months off and homelessness and long periods of financial difficulty. I’ve done that three times now. Next time I won’t come back from it, I know this.

I get that for some, I fit a “burden of disease argument” and for many “tax payers” I don’t deserve help, that’s the message loud and clear. But for the moment, I’m still here and still trying.

The lore of donut #effyourbeautystandards

This is the lore I live by.  The lore of donut.  I’ve always been a comfort eater and that’s okay.  Eating gives me comfort and when the shit really hits the proverbial fan, my go to is a donut.  A jam filled one.

But there are always those armchair experts telling me about diet and exercise, who I wish would shut the hell up. They are everywhere, our culture is saturated with the fatphobic. Saturated with phobia, nah, let’s call it what it is – guilt tripping hatred used to shame women for holding their own space and being proud of who they are. Self esteem is not a dress size.

For 26 years I’ve had high blood pressure.  Ever since I walked out of a hyperbaric chamber after decompression illness (an injury that could have very well taken my life).  For six years the recovery was painful and I had a range of neurological issues, along with being Autistic (but I wasn’t diagnosed until much later). It was a rough time.  I went up to 107kg and down to 50kg in the period from 1994 to 2003.   I’m somewhere happily in the middle now.

It’s not my heart or related to my kidney functioning.  I’ve just the heart tests that I have every two years.  I pass with flying colours.  One specialist cardiologist a few years ago speculated it was to do with the injury to my brain (your brain plays a big part in the regulation of BP).  That has always made sense to me and I manage the condition just fine.

effyourbeautystandards

The woman on the left of this picture hates herself.  She is exhausted.  She is working 10 hour days and spending many hours of punishing training in the gym.  Trying to be “normal”.  She is trying to make her body conform, yet her BP doesn’t change.  She does not feel attractive and she is in denial of her bisexuality.  She is in denial of her disability and is subjecting herself to a gross form of internalised ableism.  She pushes herself until she breaks. On her fridge is a sign that says “food is fuel, not fun”.

The woman on the left is totally defined by what she thinks she lacks and what the male gaze thinks of her.  I shudder now to think of that.

The woman on the right likes donuts.  She loves her body, just as it is, because it’s not just for sexual partners consumption.  She is not ashamed of her sexuality.  She holds the stage with her bad ass self.

She has done things and been places the emaciated version of herself never thought possible.   She meditates and practices mindfulness.  She laughs a lot.  She produces comedy.  She is proud of her Autism even when it means she falls in a heap of sensory exhaustion, cause now she knows what to do; and it isn’t what the woman on the left did. She has an awesome day job and awesome people around her.

The woman on the right, the one of right now, she doesn’t give a fuck about “normal”, that’s only a cycle on the washing machine.

She is like a hot donut.  Round, hot, tasty and substantial in your hands.  I’m fucking proud of her.

I am proud of me.  #effyourbeautystandards that you try and say is for “health”: not healthy, it’s bullshit.

But you’re so…comedy…

Yesterday I did a comedy routine at a fundraiser for a school to get solar panels. I joined my friend and talented muso James Williams on stage to do a song – a rewrite of “Barbie Girl” to parody it to “Plastic World” calling for people to get real about climate change. I’m proud of it, it’s funny and makes a sharp point or two.

It was a wonderful gig. A sensory safe venue, a great crowd and a great bunch of fellow comedians who made me feel safe and comedy for a cause. That is super important to me.

I did a three-minute set about how as an Autistic woman I could relate to climate change scientists, how we are a small percentage of the population and people often don’t listen to us.

I’ve started to do jokes about the “you don’t look autistic” phenomenon as well.

This was probably the first set for a regular audience (my solo show attracts people who_So you were born Autistic, don't let that define you_ _ I was born and you don't want that to define me_ know the topic) where I out my Autism 100% and not subtly.

Throughout being “out” about Autism in the last three years, I’ve had countless “but you’re so <insert autism here>” conversations.

Note…I use Autism with a capital when it’s about pride, as it should be.  When written with a little a or (autism, autistic), it’s about stereotyping.

Which I really don’t mind because we can unpack stereotypes and on stage is a good place for it. But I wanted to address some of the things that come up in these conversations here, in writing, as well.

But you’re such a good speaker. Not all of us are non-verbal and even if we are non-verbal that doesn’t mean we can’t communicate well. I always “talked too much” and was a “chatterbox”. My stim is speaking. Chatter-boxing.

I was a chatterbox and as a kid I waffled on about things and people no one else was interested in and bored them to the point people avoided me.  Really, who wants to hear about the commonalities between Stalin and Hitler for over an hour? For me it was fascinating, but I couldn’t read the social cues that other people were bored.

I’m channelling that stim on stage. That’s why it’s sometimes I’m unpredictable and sometimes my best comedy material comes from off the cuff comments I add in the moment.

As I got older and studied what the world expected of a speaker, I found out my commentary about how I see the world was the funny stuff. Other people put me on stage. I didn’t get up one day and decide to do it, people encouraged me to.

By the way, at least on a comedy stage I know if you like me or if what I am saying is interesting. You’ll laugh. If you don’t laugh or heckle me, do you really think that bothers me? Nope, that’s been my entire life. I’ve been the butt of a lot of jokes, now I’m taking that power back.

But you’re good at improv. Improv is like a mirror for my whole life. I’m constantly anxious what social cues I should be reading and how to interpret them. Improv allows me to play with that in a way that is “outside of the world” and has little consequences.

So, improv makes me feel emboldened to turn my filters off. I’ve had to mask my Autism until very recently. I can flap my arms, exaggerate movements and facial expressions and make observations of the world like I want to.

If you could see what goes on in my head around every social interaction, you’d want to take a nap. It’s fucking exhausting and I’ve also got considerable sensory input going on…

I hear everything, I see every detail, I have been known to self-harm if my skin is in contact with some surfaces. My sense of smell is not too heightened, but people who love perfume make me want to hide in a corner.

But you’re producing so much material/so productive. This one perplexes me, yet again. I’m not sure if this means that I should not be able to do anything because of Autism or in spite of it. It’s neither.

I communicate best in writing and convert it to speech, because it’s my “work around” for my communication struggles. Thus why this blog is scribe and speak, not speak and scribe.

Speaking is a huge challenge and is levered off an awful lot of writing first. I need mental scripts for simple interactions. Complex notions I can speak about, because my brain is constantly trying to make sense of the world and that becomes my stream of consciousness. I’m constantly looking for systems and patterns. So, it’s like information pouring out from my brain into my fingers when I write and some of that ends up in speaking. But it also exhausts me. That’s why I am not very social, that’s why I’d rather go into the wilderness quietly or stay at home alone.

But you’re confident, you don’t seem <insert autism here>. I’m terrified. I’m anxious before I go on stage. I have irritable bowel before. I pace. I rewrite the work three hours before. I only want to be around certain people or none at all. Afterwards I sleep heavily and if I am stupid enough to eat, I develop terrible acid reflux that hurts so much I vomit. I have “work arounds” for this, strategies for dealing with it.

But you’re fine on stage. Again, this is not because of or in spite of being autistic. It just is. But some context.

I’m not looking at you in the crowd. If I do get up close to someone, they think I am looking at them, I’m looking at their chin or glasses frames. I look over the top of the audience’s head. You know…where public speaking classes tell you to look…I do naturally! Plus, I like being on stage…I’m away from the crowd, not in it.

But you’re unpredictable. Okay! Yes. Some think this makes me funny, others think this makes me unprofessional.

I would love to be one of those comedy shows that gets “tightly scripted and performed with precision” reviews. Anxiety takes over with the demand of “polish” and that’s why I write heaps of material.

I always need back up plans because the scripts I plan fall out of my head I can find whatever comes to my mind when presented with 80 people in front of me. My solo show is the only show that looks very similar each time and has option a, option b and option c scripts. Because it’s 55 minutes and around 15 minutes I start to feel comfortable and settle in. I like telling stories or musical parody or improv.

Finally, it’s really challenging for me to do comedy but I love it. I keep going because I love making people laugh and I love raising awareness.

I want Autistic young people to not go through as much as I have and to feel more at home in the world around them. I want them to be themselves and not feel like the neurotypical world is where they feel like they are walking through waist high treacle (which is how I describe it).

Yesterday I was disappointed with my set before the song. But my mind was fixated on getting the song right and the anxiety was full throttle. The song was great.

I’m never going be the stand-up who stays beside the microphone stand with a microphone rested on chin, at 30 degrees to the left of the centre mid line of their lips. I’m never going to have a consistent set.

And I don’t care. I’m just being myself on stage in many ways. I don’t think we need to define comedy like we define theatre. It doesn’t have to be perfectly recited. I’m happy to be clumsy in delivery, goofy, oddball off-the-cuff, off-key. I’m entertaining and I love it (including the challenges) and that’s all that matters.

One day the world will look at an Autistic performer and stop the “but you’re…” and just make it “you’re”.

Come check me out at Melbourne International Comedy Festival –

Mad Pride” (psst, I’m on the Friday night, the 5th April)…

Special Australia Day Special with Helchild, Senatator Pauline Fartson and Bob Shatter

https://www.podbean.com/media/player/y7dwr-a696a6?from=yiiadmin&download=1&version=1

Special post-Australia Day 2019 edition of “Not Famous and Not That Funny”, featuring the super multi-talented satirist, comic poet and character comedian of Helchild and two of their favourite characters, Senatator Pauline Fartson and Bob Shatter.

Get your tickets to their amazing #MICF2019 show “The Apocalypse Variety Hour” from here!

 

Consent-ability, we all have it

The recent Carly Fleischmann speaking up story demonstrates how some people still are still struggling to understand consent. CW: discussions of sexual assault.

In this patriarchal world where we use psychology to blame women, rather than face the fact our culture condones violence and we can be active agents of culture with language; some people have more issue with the word consent, than the other C words.

The other C words I mean are “colluding” with an abuser, or “condoning” the violence of an abuser.

Colluding and condoning are acts of violence by proxy.

If you haven’t been watching the news in this consent confused world; an Autistic woman and YouTuber Carly Fleischmann has spoken up about an sexual assault by her father’s male partner in a Facebook post. She’s been so frustrated with being gossiped about and accused of lying, so she’s gone public.

Her father weighs in and blames her, in one of the world’s most patronising replies ever.

Add to the usual debate about sexual misconduct the notion of disability and…
As an autistic woman, I’m super angry. I’m furiously angry.

“That’s not unusual”, I hear you say, and you’d be right, it’s common for people to blame the victim.  This is yet another demonstration of why women don’t speak up.

Her own father’s reply is effectively blaming the fact she is non-verbal.  He insinuates she isn’t clear enough.

Note the link to this text takes you to Carly’s interview YouTube series, not the articles about her speaking out, because I want the focus to shift back to her place in the world as a proficient communicator.  The issue is with her families lack of communication ability.

We all have consent-ability.  We all have the right to expect to be consenting to any sexual or sexualised behaviour.  Anyone who says differently is, no question about it, an abuser or the enabler of an abuser.

It’s the way her father weighs in. The tone of it (yes, written words have tone). The condescending tone, the not-listening tone. Even in a written reply it’s obvious.

The physical act of speaking isn’t the only way we communicate.  It isn’t primary either.   That’s why we say someone is “speaking up” when they write.

Stop measuring other people upon the bizarre measure of speech.  If that’s your only measure of any importance then music, painting, dance and any other form of communication is not valid either.  The over-emphasis on a person’s speech in discussions of disability is to ableism, what “speak English” is to racism.

I would have thought, that it would be painfully obvious that pelvis grinding any woman without consent has NOTHING to do with the fact she is non-verbal, yet that is the focus of every thing I have read today.

Her father’s response is a living demonstration of the kind of cultural “saving face” the world leaps to, when sexual misconduct occurs.  He leaps to his partner’s defence and blames Carly for not discussing the matter.  Seriously? When she has already and wasn’t heard? But even in his reply you get the picture that he’s really saying is because she is non-verbal (a picture, from a word, who’d have thought?).

So if you are going to blame anyone for being “non-verbal”, it’s this man buying into the myth making that “she lies” or that it’s a “misunderstanding”.  What’s worse he’s doing it to protect his own reputation primarily.

Which brings me to my point.  The disbelieving paternalism and tone are present in a non-verbal medium like Facebook.  And in every communication medium we should call it out.

I’m damn certain, that sexual assaulters, do not care if you are silent or otherwise, because it’s about power and control.  It’s about asserting power and control and manipulating the culture of blame the victim.

STOP.  Listen to her, however she chooses to communicate it.  Because by the time she’s gone to Facebook, she is in real danger of it happening again because she is not being heard.

As Sue Salthouse discusses, this is reality for women with disabilities, we are not heard, 40% more likely to be victims of domestic violence, with a twenty percent rate of unwanted sexual activity.

If people think Facebook is not the place for this…social media is important to the disability community.

Social media is often (but not always) our way of speaking up in a world that doesn’t want to acknowledge our humanity.

If you think calling for support on Facebook is a problem, you’re part of the silencing culture than condones violence and shames people for speaking out.

Social media and technology gets our messages out there, autonomously, without needing an able-bodied person to validate our existence by ‘approving’ our voice. Don’t you fucking dare tell us otherwise.

I’m autistic but I can be hyper-verbal. Being able to speak up hasn’t stopped me being sexually assaulted.  I can be really articulate and I can be really waffly.  Speech is a stim, I chatter when I’m anxious and that is most of the time. I appear extroverted because it’s survival technique, I am very introverted the moment I go home – and that feels natural, not a mask.

People then say I can’t be autistic because I speak and perform.  But the key word is performance.  I’ve learned this.  I had to and I could channel anxiety into speech, so I did.  But I really communicate best in writing.

You know what else 48 years of discrimination for being different has taught me?

Non-autistic people often say one thing and do another.  Their facial expressions don’t match the words and after years of noticing this, we know when you are lying.

Many of us have had to learn what these expressions mean.  I catalogued them for years, studying anthropology and looking at language.  But I have a logical understanding and the illogic of non-Autistic “saving face” baffles me still.  Stop trying to save face, it’s shit behaviour.

I am tired of experiencing the violence of “say and not do” or “not do and say”.  Sure, you might change your mind, but just say so…and surprise, surprise, mean it when you do.

Carly’s father’s reply is either classic gaslighting or dismissing her experience at the very least.  Either way it’s not good.

My Autistic sisters who are non-verbal are enormously valuable communicators.  The able-bodied world is just not listening, just not paying attention.  Please stop this monstrous measuring of their worth by a deficit model.

I was sexually assaulted at work, in a way that gets described as “low level”.  While I was locking up a building and other staff and volunteers left me alone and didn’t wait for me – a man tried to force his way in, groping at my breasts and making sexual comments.

As if that wasn’t bad enough, what happened next was abhorrent.  I experienced some mocking by disbelieving colleagues who thought…wait for it…thought I wasn’t reacting enough! I was too calm.

It took everyone ounce of my courage to talk about it.  I ended up having to take 12 weeks off, was suicidal for a period of that and self-harming at one point. Because speaking up and being dismissed caused a new level of harm to me.

My attempts to have an email sent out with new security measures were ignored, I was expected to do that myself, because I “shouldn’t have been there alone”.  It wasn’t a message for everyone…just for me.  I was made fun of by people when I insisted the new system be put into place.

A complaint to a government Minister about support for workers near licensed premises and public drunkedness and the experience took nine weeks to be replied to.  I couldn’t read it by then because I was just starting to feel like counselling was scratching the surface.  I replied telling them I couldn’t read it because it would re-traumatise me.

Prior to that I’ve been raped by a partner.  On more than one occasion.  I’ve been subjected to all sorts of bullshit from family, friends and colleagues who only began to believe me when I was so affected a medical professional had to get involved.

Apparently it had to come from a medical professional, not from me.  There are so many layers of bullshit here, I just cannot express.

And people wonder why we leave our families.  This is why.  And people wonder why we are angry and lashing out at our families.  This is why.   These microaggression’s weigh heavily in accumulative value, every day.  It’s worse when it’s people who are supposed to love you.

It’s exhausting.  Watching people try and deceive us because we are Autistic and they think they can lie without consequence, that’s exhausting.  It exhausting, it’s dangerous, it’s dehumanising…need I go on?

And that doesn’t mean, when you practice honesty, that it has to be cruel in delivery, which is often what people resort to. And then some people, busy telling us to be more like them, have the nerve to call us communication impaired.

Saving face “disables” everyone. Just stop.