Accessibility is not expensive, it’s priceless.

So I am really fortunate at the moment.  I have a workplace where you can actually talk accessibility and they make an effort.  This is totz awesome.

They recognise the value like they recognise any other workplace well being issue.  Which is marvellous.

Lack of workplace accessibility is not a neutral act. It says loud and clear that people with disabilities are not welcome. It is an act of ableism.

Some previous workplaces were filled with comments like…

“Oh it’s too expensive for one person”

“We can’t tailor to everyone’s needs”

In the second example you come to learn that everyone is not everyone, it’s just you – the disabled (every)one.

In the past I’ve had to take time off, lose all the fun things in my life to deal with lack of accessibility issues.  My disabilities have relatively easier fixes than some (lighting, sound, access to quiet, room to stim),  but they can be expensive too. But like most people with disabilities I’ve had to pay a greater price so to speak, in loss of independence and constant discrimination.

It can be much worse for wheelchair users and people who use mobility aids and I am aware I am privileged in comparison.  So I am using this privilege to advocate for accessibility for all, not just me.

Other people I know constantly pay the price in not being able to access a workplace at all, even if they have the skill to work in it.

A study in the UK found that people with disabilities spend more money on general living costs than most people just to do things other people take for granted. Key findings were:

  • On average disabled people face extra costs of £583 a month
  • On average, a disabled person’s extra costs are equivalent to almost half of their income (not including housing costs)
  • 1 in 5 disabled people face extra costs of more than £1,000 a month
  • Disabled people’s money doesn’t tend to go as far. On average, £100 for a non-disabled person is equivalent to just £68 for a disabled person.

Emerging research shows this is a global phenomenon and it certainly reflections my experience.  More than 60% of my wage goes in necessary measures to keep myself working.

I can’t just live anywhere in a house cause I like it – there are certain features I need to live and stay well enough to work.

The ultimate price many disabled people face is homelessness and/or welfare dependence and you know how the bean counters of the world view the costs of welfare and it’s not positive (which is completely unfair of course).

The people complaining about the cost of disability pensions are usually the same people whining about the cost of accessibility modifications.  Yet they fail to see that this economic rationalism is ableist structural inequality at it’s best.

So…the consequences are…

Can’t access an accessible workplace, can’t work, end up on a pension. The pension is inadequate and can result in worsening poverty, homelessness and poorer health outcomes.

Can work but workplace is inaccessible and leads to long periods off work, lower productivity and periods of poverty and homelessness while you recover.

Damned if you do, damned if you don’t.

Yet I got to tell you that stairs suck for all of us at some point in our life (even for the ableds).  With an aging workforce and later retirement ages, stairs are a false economy. Inaccessibility is a false economy.

The fact is our environments are often disabled, not us.

The fact is accessible environments are often better for everyone.

The costs of making a space accessible are short term costs, the costs of inaccessibility are permanent and a burden on everyone – the person with the disability is not the burden.

The fact is that accessibility and working with someone to achieve it, is not expensive, it is priceless.

Accessibility benefits everyone (and I mean everyone).

*I have used “people with disabilities” and “disabled people” interchangeably to reflect different ways that people in the community prefer to be referred to. 

The Politics of the Convoluted Path to ASD Diagnosis for Adults.

I haven’t blogged for a while; I have been honouring the expression “learn to rest, not quit”.

I’m in the (costly and time consuming) process of getting the most detailed adult Autism diagnosis I have ever had.   It also involves understanding my history and how an old (largely recovered from) brain injury intersects with what I have come to know in the last decade (and accepted in the last three years) with my Autism. *Please note I use both person first (person with Autism) and identity first (Autistic person) descriptors to reflect the various positions in the community. I need to make note that Autism is not a mental health condition, but a neurobiological difference.  The experience of Autism discrimination and ableism results in mental health conditions for many people on the Autism spectrum. Regardless, we need to act to remove all stigma, for both Autism and mental health conditions and fully support and fund a better mental health system. 

There are both positives and negatives in this.  A part that has been hard to deal with is the fact that so much of the trauma of my life could have been prevented with early diagnosis.  However, early diagnosis in my family of origin and in the 1970’s to 1990’s could have been worse as well.  I may have been forever seen as a broken doll (more than I already was which was bad enough) and subjected to more medicalised abuse.  By this I mean family violence that weaponised medical grounds as an excuse.

A big positive is now I have new strategies to prevent the burn out and chronic health implications that have dotted the scenery that has been my life.  I may even be able to find a way out of the cycle of poverty and homelessness that I experience every couple of years.  Yes, me, I experience this, as educated and capable as I might seem, I’m Autistic and good at hiding the struggle as a matter of surviving the daily microaggressions life presents me.

But I want to talk more about the path to adult Autism diagnosis and why it’s so difficult to get one (particularly for women).  I have been down the path of years of misdiagnosis and I myself did not realise just how life changing the right diagnosis could be.

In fact, I was pretty anti-diagnosis before starting this process, mainly because I was misdiagnosed over and over again. This is not uncommon for women on the spectrum as this piece by Apoorva Mandavilli discusses in depth.

One of the things that stood out through the journey of the last three years of embracing Autism – can be summed up as follows:

Autism doesn’t end at 18 and there are Autistic adults.

In online forums the focus is often “my eight-year-old just got diagnosed and…” and in the majority parents are looking for advice from experts or other parents, but rarely Autistic adults.  It’s a reflection of societal stigma’s about Autism, that we cannot be adult or expert in anything, like we are permanently locked in and viewed as inept children.  You only have to read a dozen or so threads, to assess discussions biased towards “cures” (often subtly) and see language of half-hearted acceptance at best.  We have a long way to go.

In fact, we are often shouted down when critical of therapeutic approaches that did us harm or weren’t helpful particularly if that therapy is the current flavour of the month.  Advocating for a space for Autistic adulthood and it’s expertise is something many adult Autistic advocates are regularly presented with.  Autistic author Yenn Purkis does it particularly well and has discussed this in their blog and articles.

One of the most concerning things is the lack of asking the person with Autism in a way we can fully engage with the questions – and this impacts on our ability to manage the diagnostic pathway.  So many questions in online forums that should be answered with “have you asked your child first?”  *People will jump up and down and say “but non-verbal”.  Non-verbal does not mean non-communication or non-capable.  We need to stop equating the two and learn to work with Autistic children and adults find ways to communicate, not just assume they can’t. This goes for all children generally! 

Getting towards diagnosis as an adult is tough.  Here’s some thoughts on the last couple of decades from a structural perspective on why that is:

Gender Bias, GP’s and Anti-D’s

General Practitioners (GP’s) are overloaded today with health concerns that once would have been the domain of specialists as successive governments have stripped back Medicare.  Specialist appointments are more expensive than ever with more than one million Australians unable to afford out of pocket expenses and people tending to rely on GP’s more than ever, rather than go to a specialist.

If you live in a rural or remote area you’ll struggle to access a specialist and there is an oversupply of doctors in city areas.  For me, I had lived in rural and remote areas for fifteen years and often had psychologists managing me without a detailed diagnosis on the basis that they knew I wouldn’t be able to access one or that it would be too expensive.  So you could say I was “informally diagnosed” for a while. It could be argued that the freezing of increases to Medicare since 2013, combined with gender bias and lack of specialist services have driven much of this disparity.

I have become very disheartened in the last year and have grappled with accepting who I am and fell into what I call the “GP’s and the Anti-D” trend of the last thirty years (particularly for women). But often we are not neurotic females, we are not given a good hearing to be understood; the way Autism manifests in women is different because we women are trained from birth to do what we can to fit in rather than stand out.

For a while I tried anti-depressants when on the move to Melbourne at the suggestion of my GP in Alice Springs (and I have used them sporadically over the years with limited effect).  I knew it was going to be near impossible to get a detailed diagnosis in Alice Springs and seeking more expertise would take years (waiting lists for visiting specialists) and cost thousands.  So I took the wee chemical beasties for a few weeks and after settling into Melbourne and now haven’t been on them since January.  They don’t work well for me, but for others they might.  I’ve since found other strategies for managing social anxiety (which is not depression).

Put simply, clients come to GP’s with undiagnosed Autism and what gets noticed in 15 minutes are the complex mental health issues that often go with the social exclusion experienced and stigma of being Autistic.  We end up rapidly on anti-depressants for a variety of reasons because 15 minutes with a GP (even with a relationship of several years) is not the best path to a diagnosis.

Plus we already know that gendered medical bias is a thing – so there’s that and the evidence base for this is growing.  So if you identify as a woman that compounds the issues.  You are more likely to be misdiagnosed with a mental health condition than you are to be referred to assessment for Autism.

I attribute some of this to the fact that mental health services are so stripped back by successive governments that full diagnosis comes only with extreme expense or admission to psychiatric hospital. A great deal of people who may be undiagnosed ASD are struggling on because neither of those options are practical, safe or even possible.

In the last couple of decades General Practitioners are being placed in unenviable position of managing the end game of this punishing and stigmatising austerity.  They cannot be expected to diagnose complex issues and yet are managing these by proxy and suffering more burn out, stress and mental health issues themselves.

I decided to go off Anti-D’s after a few weeks and set about changing my life, instead of going around in circles. I’ve just about gone broke trying to manage this, until a fortunate windfall of $4000 via a complaints process came my way, paying for speech therapy, psychology and part of my service dog’s training and accreditation.  Already half way through the detailed diagnosis and already it has fundamentally changed my life.

There’s also a big difference between depression and Autistic anxiety/trauma and anti-depressants are just one part of this and may or may not be the right course of action. The levels of trauma Autistic people experience in a world designed for neurotypical people needs a much closer look than a visit to the GP will get us.

So if you are undiagnosed and struggling…off you go to get a Mental Health Care plan and see a psychologist – but it won’t cover your assessment which is worth anywhere between $2000 and $4000.  So you put off assessment and seek cognitive behaviour therapy (CBT), which never quite cuts it because you know – you don’t have the road map that a decent ASD assessment gives you.

But even the bare minimum of CBT on a mental health care plan, on average over and above rebates, is worth around $120+ an hour.  The reality is to stay well most people really need once a fortnight a one hour + session, that’s 26 a year and Medicare gets them 6 x 30-50 minutes.  If you have private health you’d be lucky to get another 6.  If you can afford private health insurance, which for many people the costs outweigh the benefits.  So another 12+ at around $280 an hour.  So let’s say, even with some partially funded visits (Medicare and private health), you’re still looking at around $5000 per annum – which is not a small amount, particularly if, like many on the spectrum, you have other co-occurring conditions.

Not so long along ago it was ten visits on a mental health care plan and fully covered, which reduced costs to about half that.  Psychology practices are high risk and complex services to provide, the issue is not with their rates, but with the lack of government support for mental health services compared to other health conditions.

So now, you can expect to spend thousands of dollars for mental health services that don’t fully support you as an undiagnosed ASD adult and the health problems pile up.

What I find fascinating about the constant watering down of Medicare by successive governments is that these governments are also anti-welfare, which is a contradiction in and of itself.  Poverty is not a disease, but it is often caused by disease or ill health.

I’m Autistic and when a bureaucrat says this is good economic logic, this punishing of people for things they cannot control – I think that’s the most bizarre human logic ever.

Can we stop calling it “economic logic” and call it what it is – late stage capitalist gaslighting?

So here are some of the hurdles to getting a proper diagnosis for Adults on the spectrum:

  • Gender bias in medicine that puts us on the mentally ill bandwagon as the primary condition, instead of it being secondary to Autism
  • Stresses placed on the medical profession (particularly GP’s) to be all things to all people are unfair and potentially dangerous, particularly when their patients can’t access specialist help
  • Availability/cost of specialist diagnosis in rural and remote areas
  • General cost and availability of specialist diagnosis
  • Rising out-of-pocket expenses and freezing of Medicare rebates (check out the extensive 2018 report here)
  • The combined impact of the above increases the chances of regular periods of trying to cope with poverty and increased the ill heath impacts…and we are trapped in a cycle.

So when you can’t work because you can’t afford the right diagnosis to access the right health care and even then it’s too expensive where do you end up? On welfare for short or prolonged periods and below the accepted poverty line (check out the latest poverty line figures for December 2018).

For women, as we age, these periods of incapacity get longer and because of this we are now one of the most at risk groups for homelessness in Australia. I wonder how many on the streets are undiagnosed women with Autism that have had to follow a similar convoluted path of misdiagnosis?

*Note, I haven’t comment on childhood diagnosis cost and complications.  I am sure they are as equally problematic.  This blog post is about the fact that adults with Autism are treated almost like the unicorns in the medical world – we are to be debunked first and witnessed verified later. It’s time we were heard, not dismissed. I also need to acknowledge and ensure I indicate this includes trans women and that this medical bias and discrimination is just as present and often worse for trans people.  I myself am non-binary and in the process of coming out as such.

 

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.  

Unlearning with Pepper

So after three years of thinking about this I’ve decided to take advice about a service dog.  This past two years has been an exercise in unlearning.  Unlearning ableism.

I looked at various options and decided to follow the MindDog process; whereby you can select your own dog and work with the trainer to train that dog to be accredited.

I sort out the services of Laura Mundy who is an accredited MindDog trainer and psychologist.  We discussed what personality dog I would need to seek based on what I wanted to get from the relationship with the dog.

During my teen years I had a horse who I credit with saving my life.  Another myth about Autistic people is that we don’t have empathy.  I have trouble reading other people’s hints, sarcasm and passive aggression as I have low cognitive empathy, but I have enormous amounts of effective empathy.  I am affected by high emotion settings but struggle to process why.

My response as a child was to freeze, as an adult it is a meltdown (which was often confused with a panic attack). My horse used to calmly help me get rid of that excess emotion when we went riding alone. I loved just being with her, away from people, sitting in a quiet spot in the bush.

Laura recommended a greyhound because of this history and gave me a list of traits to look for in a rescue greyhound.  An important part of this process is the right bond between dog and human.  The next step is to start the MindDog accreditation process along with training and assessment from Laura.

The idea was to find a dog that will encourage me to find the least crowded ways of walking by pausing and making me slow down, slowing my responses to my anxiety. A chilled out dog, but a dog that can also understand that my anxiety comes from sensory overload and how to help me deal with that. Slow down Jacci, walk another way. When I am anxious generally, the dog will take my focus away from the anxiety inside of me.

img_2880.jpgI was approved at two services and then went to look at Pepper on Sunday the 24th February 2019 (I won’t forget this date) at the Baxter office of Gap Greyhound Adoption Program Victoria.

I was super anxious as she approached me, but was holding back tears and pretending to be okay.  She just knew.

She walked up to me and pushed her head into my legs and leaned against me really affectionately.

I wanted to cry, but the urge to cry fell away and I felt safer.

It was amazing and so reminded me of my horse that used to put her forehead on my chest and gently press.  Note: yes, she is thin.  There are efforts underway to improve her weight, she was a racing breeder and she has gained a bit in the last two weeks already. 

I picked her up and brought her home early Saturday the 2nd of March and in just 24 hours I already feel different and we are getting along amazingly well.  Like I can do this.  Like I am not less for being who I am.

She seems to know when to leave me alone and when to intervene.  I often feel dreadful anxiety in the mornings just getting out of bed.  This morning she refused to budge until I had processed that with doggo cuddles.  Only when I felt better did she go “come on let’s go”. img_2916

With Pepper I am about to shed years of learned shame.  But this shame doesn’t come from nowhere.  It comes from my early life and how the world (and the people around me) spoke of anyone with a disability.

So many times I’ve resisted so many therapies and simple steps I could take to make my life better. I hid and suppressed things that I now know are part of me and not things to be ashamed of. Because deep down, despite my protestations otherwise, I thought I was “broken” and was trying to make myself like everyone else.

I didn’t want to be pitied and cooed over like my Dad was.  I couldn’t imagine anything worse, but that was happened to my father with his chronic illness.

Then there was the martyrdom and burden stories associated with his care and the narratives about how stoic and brave he was.  To me he was just Dad and I knew he felt like a burden enough without these dramatic stories circulating around him.  He would hide symptoms of his illness to prevent the drama it would create around him, something that didn’t help with the chronic heart condition he had.

To other members of the family telling these stories appeared to give them hero status in a 1970’s and 80’s world were carers “had to put up with a lot”.  The culture of ableism was high during this period, without any real discussion about what the person on the other end of that caring felt or thought or needed.

I know I did not want to be the centre of attention for being broken.  That was the family story.  So I pushed on through and at times, and sometimes did break myself.

I am no longer ashamed of my synaesthesia and the anxiety it can cause me.  I have a clearer picture of how I internalised that ableism in the past and how I can change it now.

Conversations with optometrists are coming back to me with new relevance.  They would do extra periphery vision testing because I would describe what I experience.  How artificial lights exhaust me, or how I experience the world like I am under a spotlight. How nighttime street lighting makes me feel as though I am in a tunnel.

Early on in my life wearing glasses I stopped telling the truth about the swirling but almost translucent colours (it varies in intensity) that permeate my vision moving in time to the sounds around me.

When a psychologist suggested wearing sunglasses to me and that I wear them anytime I am not at a computer, I balked.  Now I do, and the improvement in my quality of life is rapidly improving, because I am not so exhausted mentally.

I now know that when I talk about the tastes in my mouth when I touch things, I don’t need another test for diabetes.  I know understand how I stim (see this great video on this) and what it means for me, but that’s another whole blog entry.  Check out Agony Auties great video on stimming and quiet hands and shutdown.  My experience is very similar to hers.

Must be time for a walk to the beach with Pepper.  Yeah, that sounds like a plan.