Tidal

it’s always there

feeling

that emotion

but it doesn’t come

up for air

not for days

weeks

or months

Until it happens

It is outside of me

something mundane

a comment

a look

too much light

too much sound

that hurts

it breaks the surface

like a high tide

unfelt felt emotion

before I know

tsunami like

coursing up and out

with veracity

and I retreat

backwards

like low tide

and hide

Invisible vis-a-vis visible

Lately I’m angry. This is a sombre post, but it’s also reality for more women than just me.

Maybe other women my age will relate.

In a kind of mid life crisis I committed to doing feminist comedy nearly three years ago and as a producer two years ago.

I’ve done a few different productions (on top of full time work).

Variety, skits, musical, improv, comedy storytelling as well as traditional stand up.

I think I hoped I would feel visible. I thought I had something useful to say.

Wil Anderson sent me an encourager video once. That’ll be my little (and likely only) bit of fame forever.

I feel invisible. I also don’t think what I’ve got to say is all that important anymore.

My life as a performer, as a person really, began at 42 (hitchhikers irony much?).

When I parted ways with negative influences.

Now I feel like I left it all too late.

Now, nearing 49, I feel invisible compared to younger performers and producers.

Maybe it’s menopausal.

Maybe it’s true.

I wasted most of my life on an abusive partner and on toxic family. On not living my truth, on pleasing others.

I’ve only just started to live, but I’m no longer marketable.

Or maybe I’m just tired.

Until a few weeks ago, my day job (my profession is anthropology) and comedy was literally keeping me running on empty.

I was working myself to exhaustion because I no longer cared about myself.

A low level sexual assault in February last year (not my first, but one of many) broke me over a period of a few months. I’ve carried it heavily. I no longer believe I’ll ever find love again – I’m not capable, I have no trust left and nothing to give.

Then Pepper came into my life a few weeks ago.

I manage two chronic illnesses, autism and pain from metal from old injuries in my legs.

Pepper is my learner service dog.

Everything’s changed since she arrived.

She is the best thing to happen to me in a few years. But also, it has brought up pain. Pain of loss.

I think she’s gonna help me with that though.

I’m part of a generation of women that gave it all and lost it all. Fought for women in trades in the military (was one of the first few). Fought against domestic violence (against myself and others). Challenged old norms, embraced non-CIS identity, challenged structural racism and sexism when most people poo hoo-ed that it existed. First in family to graduate with uni education. First to travel in my immediate family to far flung places.

Some days it feels like it was for nothing as my disabilities keep me unable to get ahead (regular burnout) and I have no family left to speak of.

Social justice didn’t work out for me and I’m angry. But I am proud of what I’ve been able to do for others though.

And if I get too sick again, I’ve got nowhere to go. Friends would offer probably, but I’d feel like a burden.

Pepper has slowed me down long enough to face some demons in a positive way.

But it doesn’t feel fair. Bitter sweet by definition.

Cause life isn’t terrible, it’s just lacking meaning other than just contributing. I’m just performing on every level.

I am the female Autistic mask.

Pepper and I have six to ten years together (we are both middle aged) and I made a pact with her. A retired racing breeder greyhound, her life has been pretty tough too.

I just have to get to the end of her life and keep contributing.

When she goes, so will I.

That’s how invisible I feel. That’s the reality for a survivor of family violence with disability and no superannuation (had to use it to get through at one stage).

Once my use by date is reached, there’s no such thing as retirement.

I’ve met other women in my age group facing the same.

Good to know I’m not alone, that my fiscal failure is shared. So many women survivors over 40, many of them living on the streets.

Good to know that I’m gonna be of service to the world for a while longer and at least give Pepper a good life (and her keep me feeling a bit loved).

Pay a bit more tax, then exit when I want to, on my terms.

Stay invisible by being visible. Just keep on doing my best for another ten years at most.

That sounds like a plan. That’ll do.

By the way, I don’t regret anything, the road to change is littered with people like me.

So, in the meantime, when we can, Pepper and I are going to stare at the sea as often as we can.

Social Models and Microaggressions

Disability microaggressions are like a death of a million papercuts.

The social model of disability has been around a while now.  Yet every so-called progressive workplace I have been in still hasn’t got the memo.

Some are better than others.  But the best is still a 6/10 average cooking competition score at best.  Lacking sauce, not enough seasoning and tinged with tokenism for disabled people instead of real recognition. I’m currently lucky to be in a good workplace with a decent score of 8.

I’d like to just look at a couple of microaggressions I have experienced on a regular basis in this post.  I manage invisible disabilities.  I have two chronic illnesses that require a concerted effort to manage.  I am Autistic and have a couple of titanium and stainless steel meccano sets in both my legs (that means pain and some occasional mobility issues).

My life is a life of workarounds, often silently.  My life has also been long stretches off work because of Autistic burnout (this article is awesome if you want to know what that is) and the mental health issues of all those paper cuts.  This is the price I pay for putting on my best normal (this study is also awesome).

Here’s some things in workplaces I would like to stop, as per the social model of disability relevant to my Autistic experience:

  1. Silencing an Autistic person trying to express the impact of a microaggression, because it makes the neurotypical person uncomfortable. 

This comes in a few ways.  Here’s one example.  I sometimes express concerns about things in the media I see that reinforces myths about Autism.  All I need in response is three minutes acknowledgement (or less), usually.  Often other conversations about media on topics of importance to the neurotypical person have been listened to by me.  But, when it’s about Autism…suddenly the conversation gets cut down.

“You’re upset, maybe you should just go home”. Umm.  No.  I don’t tell you to go home because you are annoyed about media about something important to you.  I’m not going to become violent, thank you (if that is the myth about an upset Autistic person I later find out they are buying into – which has happened).  If I went home with every microaggression in every workplace, I’d be home everyday.  I already work from home a lot because of accessibility issues. I can’t switch off my disability and I can’t switch off the world’s ignorance or the amount of emotional labour it expects me to do.

“These stereotypes will take a long time to shift, have you complained about it?”. Yes. Over and over to be deflected, denied and dismissed.  I’m trying to raise awareness now but you are deflecting the constant waves of crap I receive, because this conversation is making you uncomfortable this once.  My sincerest apologies for the inconvenience.

Experience enough sarcasm and passive aggression directed at you – you’ll learn how it feels and recognise it. My entire childhood taught me that and workplaces have people who use them because they can’t say what they mean or think they can’t (for whatever reason).

“Have you misinterpreted it?”.  No, I haven’t.  Autistic people may have communication disabilities, but not necessarily issues with interpreting facts.  We’re literal but news stories about anti-vaxxer conspiracy are not going to confuse us, they are going to righteously enrage us!

Pro tip: Listen, just for two minutes or less.  Maybe practice good communication techniques and say, “I hear this has upset you, I can listen for a little while, but I’ll have to go soon, tell me what has upset you”. 

It’s not rocket science, works for all people. 

2.  Cutting off an autistic person and being rude because they may talk too much, say the wrong thing or not be able to read the situation as quickly as others. Cause guess what, it’s not a communication choice for someone on the spectrum and they already know the world thinks they are less for this – so be kind. Firm but kind.

Then, when I’ve confronted someone about it, they say things like “but if you don’t have empathy, what does it matter?”.

We have empathy folks.  Large amounts of effective empathy.  We feel your discomfort and awkwardness because we’ve not read you right.  We may have difficulty with cognitive empathy, which means we take longer to process what the feels are – but we feel them. Often with great intensity.

Here’s an example of one experience I have had of this over and over.

Me pleasantly greeting someone with whom I’ve had a couple of longer impromptu chats in the past (usually about an Autistic interest and I may or may not have bored them): “Hi <insert name>, how are you?”.

Rudely: “Just came in here <insert task> and not talk thanks, had a big day”.  Or similar words.

They ‘ve usually been chatting to someone else just a moment earlier, cheerily.   Usually I’ve had a similar kind of day and would be happy with a one word reply.  For me, I have sensory issues that mean I will have to take disability measures in the evening – so I get the need for quiet.

Each time it’s when I wasn’t intending on “having a chat”, just greeting as I’ve trained myself to do. I do this because I can’t read a situation or faces that well and a script often helps. Sometimes it’s not the right script, but I do my best.

If this happens once, this person is having a bad day.  But often it repeats of the same over a couple of weeks or more, whenever I’ve greeted this person.  Always in very similar circumstances and always different to how they relate to others – that’s something other than their personality.

I don’t have an intellectual disability, but I do find people assume I do when they find out I’m Autistic.  Then the tone of voice changes and how they communicate changes, even when previously they’ve had no reason to make adjustments.

It’s interesting because I can interrupt people inappropriately (again cause I haven’t read a social situation well) and I’ve learned to apologise and do my best not to interrupt, but still can not always get it right.  I find the apology makes me feel good as well as the other person.  Whilst I don’t apologise for being Autistic, I feel an apology when needed means you actually care about the relationship, not just being right.  I care about other people and I’m always terrified of making a mistake, so I don’t have any problem with apologising when I do make a mistake.

So now, cause they’ve been rude, I get it.  But perhaps again just saying hello and actually saying that they don’t have long for me in a non patronising way would be nice.

Pro tip: Rude and dismissive still hurts and it isn’t the “directness” an Autistic person might need.  Couching it in a sweet tone of voice like your speaking to a child doesn’t help either.  We often complain neurotypical people don’t say what they mean – and this only goes to prove you don’t mean what you say.  But you don’t have to be mean to say what you mean either! If you are unsure what to do, say so. 

I’m not a child and I’ve had some pretty amazing life experiences that most people don’t achieve – at huge costs often, but it hasn’t stopped me.  I’m disabled, not a defective model of you. The world is not designed for me, but I am not broken, thank you very much.

Often going to work every day feels like high school never ended for me, even in better workplaces with people who claim to get it.  I’m the source of gossip still.  What’s sad is my sensory issues mean I hear more than most and am often acutely aware of hushed conversations about me.  Organisational gaslighting is alive and well when you know what you’ve heard and people ask if you are imagining things.  Again, Autistic people are easy targets for bullies (and sometimes experience it from people unintentionally).

I’m the often the mark for sarcastic remarks about talking too much (even when I’ve carefully measured how often people talk around me and tried really hard to not talk too much).  It’s usually because my topics are not the usual topics, they are Autistic interest topics.  People on the spectrum rarely do small talk and it makes us targets for sarcasm and passive aggression as again, we don’t always read when we’ve bored people.  I’m usually isolated after a while and I get used to it.

You know something, we can all say no and there are lots of ways to say no to a conversation, other than sickly sweet or short and dismissive.  These are the two ways that I know some people believe is all I deserve.  I am an imposition on their able bodied time, a burden.  Others don’t do this and these are the people I gravitate to.

In some workplaces, after a while I’ll avoid tea room talk as much as possible and avoid work functions – and I won’t really care because it’s better than feeling like an imposition on the abled.

I’ll schedule meetings formally as to not be an imposition and become too anxious too do informal chats with those who are always too busy.  I’m busy too.  We are all busy.

But maybe I wish people would stop verbally patting people with disabilities on the head and actually articulate want you need in a polite and friendly way.  If you have a bad day, own it and apologise for rudeness later.

Again, works for all people! 

And all this time I’m supposed to be the one with the communication disability? Whose doing all the emotional labour again?

The social model of disability and intersectional practice makes room for difference.  It makes room for non-patronising conversations.  It’s not obsessed with productivity.  It recognises the productivity that comes from an intersectional approach, which might seem to take longer, but the rewards are non-isolated and happier people and workplaces without diversity being alienated and excluded.  It’s a different kind of productivity and worth the effort.

I choose to disclose my Autism because camouflaging/masking is more damaging.  But in most workplaces I figure out pretty quickly who ascribes to the social model and who has pathologized me – and minimise contact the pathologisers as much as possible.

Don’t make assumptions about a disability you don’t understand. It’s not that hard, really.  How do I know this? Because disabled people are working around the able bodied world, non-stop, already. So a couple of concessions from the abled is not that big a deal really.

If you think we are an imposition on your precious time, what do you think of our time? What do you think of our worth? Maybe, just maybe, we have something to offer if you take a moment to really listen.

Hold Space, Mad Pride Comedy

I’ve been doing comedy almost three years now.  It takes all my hours outside of my day job. It has consumed my life for the last 13 months.

I started doing comedy to hold space as a fat, nonbinary, autistic femme.  None of those words are insults, they are descriptors of diversity.  And diversity is a beautiful, interesting thing.

I just want to hold space as me.  I’ve only started to do that recently.

My first gigs were traditional comedy.  Boom, boom, tish, punchline based standup. https://youtu.be/YS-1KO6pGB4

Then Labelled happened.  I fully embraced who I was and wanted to tell stories, not punchlines. https://youtu.be/Q-VNpvLSxN0

Audio-visual.  Make people think about the issues of judging each other.

Anyway, I’m tired and I’ve lost my mojo and as far as I am concerned it’s showing on stage.  Because I’m starting to measure myself against the mainstream again.

madI did a show called Mad Pride last night and felt like I wasn’t shiny enough.

I let my anxiety rule me about performing in the same show as someone as shiny as Felicity.  But I’m not Felicity Ward (who is fantastic by the way).  I’m not skinny, fast and furious and filled with hilarity.

I’m fat, different, non straight, meandering, making people think and laugh at stories at a slower pace.  But last night I was so unhappy with that.  I lost lots of the energy I brought to the first solo show in Darwin.

I’m too worried about not being Felicity, that I’ve lost sight of the plan to hold space for everyone who isn’t Felicity.

I’ve been tearing myself apart about this performance – until Heidi Everett reminded me to just hold space.

So, I’m taking a break from too much comedy and going off in search of finding my mojo again.  I’m gonna do other forms of fun things I like.  Sing.  Improv. Radio.  Poetry.  Writing.  Just anything other than anything remotely resembling mainstream comedy.

I’m going to hold space.  I wanted to change up what the shiny people do and I need to stop measuring myself against mainstream.  I want to honour the;

Bentfat

Strange

Not pretty enough

Not popular enough

Fat

Queer

Disabled

Neurodiverse

Visible panty and legging lined!

Hold space

We don’t have to be shiny in a mainstream popular culture way.