Some poetry on Autism, mental health and life in general

Hi good people of blog land.

I thought it might be nice to put some of my favourite poems into blog format so anyone who likes my poetry can see a good amount.  know I pop the occasional poem in things but this will be more af a Jeanette’s recently poetry anthology. Ooh, I can;t wait….

Here’s a few of my Autism-specific ones, I actually was named a ‘distinguished finalist’ in the Local Gems National Poetry Writing Month (NaPoWriMo) 2015 competition on the strength of some of these. I choose Autism advocacy as my topic and wrote one poem a day for the month of April. It was challenging especially as April tends to be a busy month for me, but I got it finished and it yielded some lovely poems.

My past and me

Now

I am your success story

Your example

Your role model

You pay to hear my wisdom

How can this be?
Then

I am broken

Afraid

A lost cause

Example of what not to be

A cautionary tale

A mistake

A fallen thing

A tragic thing

Hopeless

Futureless

Yet here I am.
I look back

I find that other I

There she is

There I am

‘Come with me’

I reach out my hand down the years

Connecting, just.
I hold her

I am you

You are me

She buries her sorrow in my chest

And we become whole.

Tragedy and triumph together

She is with me and I am with her

Reconciled.

Not fixed but learning.

I don’t want your cure

I don’t want your cure

I am not broken

I don’t not belong condemned to the genetic dustbin

I am not less

My world is not ‘wrong’

My communication not ‘lacking’

My interests not ‘obsessive’.

I am not a tragedy

Not the product of a cruel God

Not something to be fixed.
I am myself

I am proud and beautiful

My reality as valid as your reality

My experience my own.

I love my world

This world I share with others like me

The only tragedy in my life is hatred

People too small to see my value

To sad to delight in my quirks
You want a cure

Which part of mine will you cure?

Will you cure my talent?

The brilliance of my pen

The clarity of my wit?

Will you take my life and remove all the ‘broken’ bits?

All the life I have lived

The wisdom gained through horror and loss?

The love and kindness left when the fires of abuse and terror died?

Will you take my compassion

My empathy

My love for the Other?

What of me would you leave behind from your cure?
No. I don’t want your cure.

I want your understanding, your ear, free of judgement.

I am human

There is no cure for humanity save death

And that is hardly a cure.

Mum

My mum is not the average mum

She never gossiped with her girlfriends at the school gate

She never wore heels

or make-up.

She did have three lipsticks from the 1970s – a pink one and orange one and and sort of melted brown blob

She didn’t ever watch rom-coms

She stopped buying music in about 1963.

She never talked about being a lady

or using your feminine wiles

(whatever those were).

She tromped around the garden in gumboots

and a jumper from he dark ages.
When I was little there were lots of books

Little kid books

Christian books

then books we could read by ourselves.

One day my mum read a magical book from her childhood.

It was precious. a treasure.

She only read it to us once to keep the pages from falling out.

It was from the ancient history that was my mum’s own difficult childhood

She read it as if preserving her fragile childhood

Stopping its few good memories from disintegrating into crumbs.

Mostly my mum’s idea of calming reading was the book of Revelation.

At 10 I knew all about the whore of Babylon

But I’d never watched Mary Poppins.
My mum had a word for every occasion

a logophile

(ironic that one needs to be a logophile to know what one is).

In a sea of Englishness she sported an Australian twang.
England was always too cold.

too windy

she’d set up a vivid orange tent on every English beach

We never got lost

We’d see the tent’s toxic hue and come whirring back like homing pigeons

If pigeons liked dribbly ice cream and seaside rock.
As I got older my mum transformed

She was now my best friend

In the absence of friends my age

I could tell her anything

I’d stand behind her and brush her hair

Hundreds of times

Thousands when measured in days and months and years.

Whenever I was in trouble she’d be there

Ready

Amazing.
Some time after I gained for myself a label

‘Jeanette:Aspie’

I went through adulthood the lone labelled person in our quirky Purky world.

It was almost a sleight – why just me when others in our midst may benefit from a swipe from the label machine.

One Christmas I was home

My mum comes up with unknown intent

She thrusts a card into my hand

‘I want the assessment. Give me the label’ it read

Clinician visited

Label attached.
My mum, my friend, my champion all along is now in the club

we are in it together

The same

Our perfect club of two within the larger club we’ve been in all these years.

Our labels bear the same name

‘Thank you mum’

This one is a reflection on a recent trip to my ol d hometown Melbourne

After sparkles

A trip to Melbourne

My former home.

Conferences and book sales give way to tourism.

At the Victoria markets

I spy stalls amidst the fishy funk

A shop with felted hats and a hippie lady

We start to talk

If I took up her time I should buy something I think

I find a deep red yak wool scarf – it will be warm in Canberra’s winter chill and wind

I bid her farewell, clutching a little plastic bag overflowing with my new scarf.
I head down the hill

There’s a jewellery shop

Sparkly bling and a quiet girl hunched at the register, reading a book.

I search about, disappointed by the selection of things but wanting to buy

And then as I’m leaving a sparkly bracelet catches my eager eye

‘How much?’ I ask

The quiet girl’s delicate features light up

‘Ten dollars’ she says.

Ten dollars for an endless amount of sparkles seems a very good deal.
I happily go back to my hotel

past a lanky young boy dancing to his headphones

A twenty-something lass with maroon ringlets

A family from the country, bumping into the unfamiliar crowds.
I have warm things, sparkles and joy.

My love for Melbourne is unabated.

 

This one was published in the Canberra Times earlier this year in a slightly edited form. Enjoy

All that I want

Affluenza and entitlement dictate a list,

Things one is supposed to want if one is successful and urbane:

A house (big, ostentatious)

A car (probably Italian and stylish) and all those other things I neither want nor need.
I want a cat to cuddle

For people to listen before they judge

Full bookcases

Music to lift my soul

Respect of the Other, whatever Other they may be

Safety in my home

Safety in my mind
Influence in things that matter

Wisdom

People and things to love

Just enough self awareness

Ethics and values not rules and dogma

A modest place to call my own with walls for all my art

A friend to tell me when I am getting ahead of myself

Talent and skills sufficient to achieve my goals

Work all the day long

A comfortable and warm bed and sympathetic characters to inhabit my dreams

A body fit for purpose

Friends to laugh with. To cry with. To share success and defeat

To have children in my life to keep me young

Family – my hereditary one and the one I choose

And maybe some chocolate.

 

Here;s a lovely one about mr Kitty and how he is my little black kitty therapist

I have a little panther. He shares my home

With sleek black fur

Golden eyes and ready purrs

I feel a thump each night as he leaps on the bed

I see him coming towards me

Purposeful

On a mission for a cuddle

He flops  down next to me and I hold his little paw

He talks

And talks

Announces his presence at times in plaintive meows

or deep reverberating purrs

He asks for cuddles

Taps me on the shoulder as I work

‘I’m here mummy’

If I keep on at my work the tap gets more insistent until I scoop him up and bury my face in his soft fur

He steals my spot on the couch

‘helps’ with laundry

and gift wrapping

and cooking.

When I make the bed he insists on assisting

In his previous life he was a stray

He seems like a rich boy fallen on hard times

When I cuddle him he cuddles back

An urgency of love

I was his saviour

And he was mine.

His entry to my world spelled the exit of my blighted existence

Since he has shared my hearth there have been no stays in modern day bedlam

No self-destructive dance of defeat

And when my fractured mind turns him into a demon

He walks up with his patented panther stride

And reminds me who he is,

My mind’s demon become reality’s cat

I hold him and he purrs

Yes, I have a little panther who shares my home.

I can scarce imagine life without him

This one won the 2011 ACT Mental Health Week poetry competition. It was written when I was very unwell and staying at a mental health rehabilitation house. It was before i git Mr Kiyty, when i didn’t like living at Whimsy Manor. I think its quite a powerful poe,.

Monday

Monday

I put on my suit – armour against the sword of daily life

I took the bus to work

Thoughts passed through my mind

of awful and inappropriate actions.

I swiped my card. The perspex doors gave way at its bidding and I was in the lift

I got out at Level 5, walked to my desk and logged on

The emails made no sense
I took myself to a private room and called Kathy, my capable clinical manager

“Go home” she said

but I was determined.

After what seemed no time my Manager was driving me to see Kathy, concerned.

The world seemed to close in – there was no future

Kathy was concerned as well – worry etched in her features.
A trip to the hospital

Waiting

I escaped. Kathy gave chase.

Police walked by

I looked longingly at their guns

but what sort of public servant would that make me I thought

A dead one.
Kathy leaves me at the assessment unit

In my suit.

My make-up perfect, jewelry matching my clothes

Work shoes newly polished.

There is no tomorrow I think, at least, not one in which I want to be.
The psychiatrist – young, cocky, male – sends me to PSU, the locked ward, for my own protection.

I arrive that night

In my suit.

“Do you work here?” asks an intern

“no” I respond gloomily. “I’m just a well-dressed patient.”
Outside the rebels storm the winter palace and the sky explodes,

Inside I’m safe, medicated and confused.

The world goes on around me, unaware and unconcerned

This one is quite a long one – sort of a narrative poem. It actually made me cry when I read it out loud after I drafted it. Thats; probably the mark of a good poem (unless one  is crying due to the terrible writing but  it was crying for emotion, honest. 🙂

Shadow girl

There was once a girl with a happy laugh and a curious smile

But she did not know it.

For she lived in the shadows

Where the creatures of the dark hurt her

And told her lies and called her names.

She hated the shadow world

But tit was her home.
She wanted to leave her broken world

but she couldn’t find her way into the fresh green garden she believed was above

She imagined its flowers and birds and dragonflies humming by happily.
The shadows broke her spirit and took the smile form her eyes

The love from her heart’

The will from her mind.
Weighed down, she trolled the shadows, crying silently.

For she knew this was not her home

But she couldn’t come out.
One day she started to walk

went to places she hadn’t been

Ghosts laughed at her and made bets that she would be here forever but she just kept on walking.
One day she found a rock stair case

She looked up and saw stars – actual, beautiful twinkling stars

Lights calling to her straight from the very beginning of the universe.
Even though the stairs were slimy and she feared she would fall with every step she knew she needed to take the stairs

It was her only chance to be free.
She went on and on.

Hours and days and years elapsed

Strangely, the higher she got – even though the danger of falling grew worse with each footfall – she started to feel renewed and confident.

Clear crisp air filled her lungs.

She started to smell blossoms – so far from the foul odours of the shadows, smells of death and decay and defeat.
As she climbed higher, beams of light started to shine on her face. The light was warm and gave her hope.
She saw the top of the stairs

She took a tentative step into this new world.

She looked down and saw her dress was white

Her gold hair flowing down past her shoulders.
She lay in the green grass in the garden looking up at a pure blue sky.

She couldn’t find a word for what she felt

She didn’t even know what she felt except that she was no longer afraid.
An age passed.

The garden was so beautiful but the girl was all alone

What point is there to happiness if one can’t share the experience? The girl thought.
As soon as she thought that, a little black cat strode over, exuding cat confidence

He wound himself around her legs.

She stroked the cat and felt his soft fur.

The cat walked off into the distance

“Wait!’ the girl said and followed him

Running to keep up.

 

She followed the cat for a long while,

Damp, springy grass underfoot. .

He stopped at the top of the staircase.

She looked down and saw shadows and ghosts.

They looked weighed down and sad.

She wondered how she could help.
The cat started walking down the stirs.

The girl followed.

It seemed infinitely easier going down than it had been coming up.
The girl met a ghost

But the ghost was not frightening or evil – it was sad.

Against all logic, the girl held out her hand to the ghost

With the touch she saw the ghost’s humanity

It was a young girl with spiky red hair, green eyes and a tentative smile

The ghost was a friend.
The two of them went hand in had up the stairs, followed by the cat.

It was infinitely more easy to traverse the stairs with company,

The two girls talked and laughed and helped each other up.

The cat showed them the best way to ascend and purred a tune to keep them inspired.

As they ascended, the ghost took on stronger form

After while the two of them looked like sisters.

They were whole.
So the girl spent eternity rescuing ghosts from the fetid world below.

She took them to the garden where they could live their new existence.

She became friends with each one of them.

The task would never be done but the rewards were great.
And the garden became filled with the laughter of children and adults who once were shadows but were now whole, fulfilled, free people.

And the girl kept on at her task.

 

And last but not least, my latest poem, written on Tuesday, all about reconciling negative historical Jeanette with who I am now. I hope you enjoyed my poetic musings 🙂 JP

The two Jeanettes

I’m tired

Seventeen years of tired

Of metaphorically jerking my neck around to spy my past

then run from her as fast as I can.
Excuses excuses

‘I’m not like that…

‘She isn’t me. She is previous me…’

He face leers grotesquely at me in the mirror

Every time success comes my way she is right next to me, taunting, blaming, hating.
Hard to express just how I hate her

Every act is framed by her presence

I can’t really own my life

Every day at my job

Accepting accolades and planning what to do if she ever escapes to destroy all I have made

I had no future than and I barely see one now

“If good things happen I will be dead straight afterwards’

‘Don’t get too comfortable. You were in prison. Everyone will know and they will hate you

There is no good in you. You are just pretending.

Others can see past your nice act to who you really are. You are ME.

Oh I shall destroy you. All those who love you will hate you when I’m done.
Author? positive person? Autism world Celebrity? Really? Who do you think you are?
I step back and watch the person I once was

I see her desperation

I see that every kind word I say, each decent act I commit puts a distance between us.

She is desperate

As she always was

She is both victim and perpetrator.

Vulnerable

Young

Scared

Acting tough in a world really not fit for her

The hatred is an act. Mostly

She learned the words, the attitude, but was never really there.
I summon up my strength and approach her.

She’s like a frightened dog – hackles up and in need of love and closeness.

Tentatively I hold my hand to her

“You can be yourself’ I say

‘There is seventeen years between you and i.

This world will accept you

Forgive your mistakes and support you.

You don’t need to fight the world.

There is a place for you.

There is a cat….’
I edge closer

I touch my hand to her. it is scarred but she holds on tight

We embrace

gingerly at first, both of us wondering what the other may do

Then she grabs me and holds me close

She cries and I wipe her tears as she does he for me

My shadow self and I together

I hold no fear of her

It is swept away amid understanding and acceptance.

OLYMPUS DIGITAL CAMERA

 

Advertisements

Social media – the good, the bad and the reason I love it 

I was having a conversation with my publisher a while back and we both agreed how much easier it is to market and sell books now that we have so many social media platforms. For example, the night my collaborative work The Guide to Good Mental Heath on the Autism Spectrum was released, I spent around 90 minutes promoting it. I sent an email to my full Autism world contact list (over 200 people), then got on Twitter and tweeted it, tagging a load of folks. I then got onto Facebook and posted about the book on all of the around 250 Autism groups I am a member of and posted it to my personal page and my Autism Books and Other Things page. I don’t know the exact analytics but I think in 90 minutes I may have communicated to over 100,000 people about the new book and how they might find it helpful.

But for me the value of social media goes way beyond the ability to market products more effectively. I was messaging my friend and fellow prolific social media user, Penny. Someone had suggested I take a holiday for some time away from my absurdly full workload and I was discussing this with Penny. I ended up realising that most of my social time – usually time connecting with friends on social media – actually forms some kind of downtime for me. My life on social media is wonderful. I don’t have to do face to face talking, I can connect for as long or little time as I want to. If somebody is being, for want of a better word, a bit of a tool, I have the options of unfollowing, unfriending or blocking them. It is true that most of my friends live in my computer and phone (and of course some of them are also face to face friends). Social media for me is almost always a safe and respectful place.

I think quite a few Autistic people find communication online easier than in the physical world. For people with prosopagnosia (‘face blindness’) – like me – it’s great because you don’t need to recognise your friends by their face. Typing allows for editing and perfecting the message to ensure it conveys what you want it to. This is much less stressful than face to face communication (although the disadvantage is that it takes longer to clear up if there is a misunderstanding). Many Autistic people find conversation with others on the spectrum on social media helps them to discover and develop their Autistic self-identity. In fact many Autistic people find their voice and power on social media. For people who are non-verbal and used typed communication, social media and blogging can be a vital way to express thoughts and opinions and connect with others. Also, for those of us who blog or write non-fiction, poetry or fiction, non-autistic people who may view our work may be far better at seeing the actual worth and quality of the writing in an online context. Sadly, an Autistic person’s physical appearance, dress style, stims and different eye contact or other perceived differences in face to face conversations can result in them being taken less seriously. Obviously this is not the way things should be. A good writer does not need to look like anything but unfortunately it is still a big challenge for some non-autistic people to see a person’s true worth past their apparent quirkiness and idiosyncrasies.

I often reflect that if we had social media when I was a teen and young adult, complete with a bunch or Autism advocacy and neurodiversity groups and maybe a role model thrown in for good measure, my life would have been much easier. However, this brings me to the other side of the coin. For some people  – Autistic and non-autistic too – social media is a battleground and a forum for horrific bullying. I have even seen this happening on occasion within the Autistic community.  People denigrating, invalidating, disrespecting and hating others and sharing all that vitriol with the wider online world. This can have some pretty dire consequences – just like face to face bullying can and often does.

Autistic young people may be more vulnerable to online attacks due to a very beautiful thing which turns into a horrible thing in the hands of a bully. That is that we as Autistics often have pure, kind hearts and cannot imagine people not being kind and thoughtful and honest like we are. We don’t feel we need to set up boundaries in our online life and identity because why would we need to? This openness and kindness can be manipulated, abused and exploited by a bully. Not all Autistic people are like this but I know a good many who are, induing myself. When I was a young person, it was a curse. Bullying and abuse were always a surprise and were always treated with me thinking ‘but why would they do that?’

The online world is often un-policed and teens and young people can be essentially suffering in silence. As the online world is now so important for education and delivering the curriculum it is horrible to think of Autistic young people being in the line of fire so to speak, each time they go online. Bullying is a complex problem but one which really needs to be addressed, especially in order to protect Autistic people.

Another difficulty which can arise with social media and online life is internet addiction. There is increasing evidence of internet and gaming addiction among young people, particularly those on the Autism spectrum.  It would seem there is fine line between constructive internet usage and problematic usage. It is clear why this is an issue for some people. If you imagine a young person really struggling – stressed, frustrated, overloaded with social contact, experiencing depression or anxiety – and their parent gives them an iPad to calm them down. It is instantly effective. The online world and games are immersive and stimulating and effectively distract the young person from the difficulties they are having,  The young person comes to associate the iPad and gaming with feeling better and so when they feel stressed or sad (or whatever) they reach for the iPad and play games and it makes them feel calmer. Sure, excessive computer gaming won’t result in a bad liver or in crime to obtain money to satisfy the ‘itch’. But what it will do is potentially impact on the young person’s school attendance, educational attainment and transition to employment. And added to that, there is a grey area: when is the young person proactively de-stressing by using gaming and when does that become problematic gaming?

This is a relatively new issue. It is not one I have a lot of answers to although it may help to teach the young person coding and game development skills – sort of ‘harm minimisation’ if you like.  Professor Temple Grandin and Dr Debra Moore write about internet and gaming addiction in their book, The Loving Push. I am far form an expert but can see there are some challenges around this into the future.

So all of that being said, I shall go post this blog on Facebook and Twitter…..

IMG_1285

The Power and the Passion – reflections on agency, influence and privilege

This is a rather reflective post on the issues or privilege and influence as experienced by me, an Autistic self advocate. It is more a personal reflection than a call to arms but I thought some of the thinking I focused on might be useful for others to see, hence I made it a blog and not a personal document.

On Tuesday evening I was sitting in a room listening to a speech on leadership by none other than James Pearson, CEO of the Australian Chamber of Commerce and Industry. The reason for this somewhat preposterous situation was that I was a finalist in the Australian Institute of Management Leadership Excellence Awards (and in fact I took out an honourable mention in the Community Leader category – go me!). The room was filled with business  and community leaders, influential folks and entrepreneurs. Not a place you would expect to find an Autistic self advocate who spent years as a prisoner, homeless and living in poverty. A person who was so self-destructive she wasn’t expected to survive the month. But there was one of these there – it was me. While I was delighted to be awarded, I was also interested in thinking about issues of power and privilege and influence as they relate to me.

The thing is I find myself moving in these sorts of high level, suity forums quite a lot of late. I had dinner at Parliament House last year and will be dining as a special guest at an academic dinner  – complete with Vice Chancellor – next month. While I am quite excited about my involvement in talking to decision makers abut Autism, I am also a little horrified. All the slogans form my misspent and rather radical youth come to mind –  ‘if you’re not part of the solution, you’re part of the problem’ – that kind of thing. For while I was disenfranchised and victimised in my youth. I am now a full-time, financially independent, property-owning public servant. I don’t access any publicly funded services – I use private health insurance, my psychiatrist is a private one and I pay full fare for everything. I take the bus to work behind the armour of my corporate clothes. I am confident and will speak up if someone is behaving in an offensive manner. People call me ‘ma’am’ in shops and everything! So I frequently wonder whether I am part of the problem or part of the solution. It certainly is confusing!

A while back I gained some insight into this dilemma through reading a blog post complaining that Temple Grandin should not be a representative of the Autistic community because she is White, privileged and wealthy. I did a bit of a double take at this. While those things are certainly true of Temple, what is the value in attacking Temple Grandin when there are so many Jenny McCarthys out there? Temple did not choose the circumstances of her birth. I would agree with the blogger if Temple’s privilege and whiteness were making her a liability for our cause but I usually find what she has to say very useful.

Anyway, my pondering on the issue of this blog led me to think about myself. I am currently very privileged but also not. I have intersectional disadvantages too. I am Autistic and experience prejudice around that a lot more often than I would expect. I have schizophrenia and I can almost guarantee that next time I find myself as an involuntary inpatient in the psych ward, all my influence and privilege will be considered a delusion and I will suffer the indignities I usually do in such places. In the psych ward, all of a person’s power and agency tends to get stripped from them. Also, I identify as Queer and as being of non-binary gender. While I don;t tend to be a visibly obvious target to homophobic idiots, I do suffer from all the assumptions and prejudice that come around that. So I guess I am privileged and disadvantaged all at once.

Another thing which struck me at that awards night on Tuesday was the issue of intent. Every time I find myself in a position of influence, I try to use the opportunity to help others. I really don’t need more money, power or profile for myself but I want the world to be a lot more respectful, inclusive and understanding of Autism and what Autistic people have to deal with in this often hostile world. I have influence but no intention to use it for personal gain. My understanding of these sorts of things is that my attitude may be unusual. I am an Autistic, ex-prisoner who has experienced homelessness, abuse and violence. I have a significant mental illness in a world which is often judgemental and prejudiced, and despite these things I have a seat at the table so to speak.

I have been advocating for eleven years. My audiences were initially school students and parent groups, then more recently conference delegates, professionals, other advocates and my colleagues throughout all the communities I am active in. Now I find myself talking to influential people who often have a limited understanding of Autism and who will really benefit from what I – and other Autistics – have to say. I am a person who tries to educate people and bring them along with me where possible rather than berating and blaming, so I am in an amazing position to make a difference. Yes, a privileged position .

My conclusion about privilege after all this refection is that I can’t help my privileges. In fact getting myself a full-time job and overcoming disadvantage which led to my current state of privilege is hopefully a useful thing in the Autism community. I have learned useful things about employment which I share with others. My full-time role is also an example of ‘If you can see it, you can be it,’ giving encouragement to other Autistic people looking for work. I think that as long as I understand others’ perspectives and not make assumptions about their experience (you know that horrible notion of ‘well I managed to overcome that difficulty, why haven’t you??’) If I use my privilege and influence for good and not for personal gain then I guess it is a positive.

IMG_1639

‘Don’t assume I can’t do it!’ – Neurodiversity and competence

I was at an event earlier in the year for which i was the keynote speaker. The MC introduced with the following: “And now Jeanette is going to give her little talk…” I was affronted. That little word ‘little’ carried with it paternalism and a good whiff of tokenism. I got the feeling the organisation wanted an Autistic speaker just so they could say they did. Maybe my diagnosis was more of a draw card than my actual presentation. I was so annoyed that I was determined to give as good a talk as I could. Needless to say I absolutely knocked it out of the park and the conference delegates all told me how wonderful my talk was. (‘Bring it on ableist MC boy!’ I thought to myself).

Sadly this experience is all too common. In my situation it didn’t have a lot of implications for me other than to irritate me. But what happens if you take that attitude into the workplace, a job interview, into an interview for a university course, into a family court dispute. That attitude of ‘Autism = incompetence’ is everywhere and it is very unhelpful.

The attitude around incompetence I often get is the ‘Autistic people are like children’ one. I wear a number of different ‘hats’ and the metaphorical hats actually come with a costume attached. There is business corporate person Jeanette – suited and booted, tasteful jewellery and an invisible – but very necessary – cloak of confidence. Then there is casual Jeanette – art t-shirt, comfy jeans and quirky shoes. Finally there is Autism world public profile Jeanette – which is my favourite costume. Public profile Autism world me likes to wear lots of rainbow, art t-shirts with a neurodiversity theme, bright jewellery, floral everything and toped off with one of four coloured wigs. When I am corporate business me I get lots of respect and equality from other corporate people. The negative with that one is that poorer people can find it off-putting or intimidating which is never my intent. When I am wearing either my casual or Autism world ‘look’, I get the ‘are your parents here with you?’ attitude. Apparently looking stereotypically different magically takes away all the competence I have in an instant and it somehow returns once I don my suit. Who knew!

This instant judgment of Autistics is really unhelpful. Not only can it close doors to us, it can also impact on our sense of self-worth and confidence. When I was a teenager, all the kids picked on me because I seemed ‘different.’ I was never told anything positive about my difference so I associated my difference with being a lesser human being. I wanted to address this so tried to be less like my true (and apparently ‘weird’) self. This led to years of self-hatred and joining any group which would have me (criminals, socialists, drugs addicts – that sort of thing). My involvement with these groups who would accept me led to some terrible choices and a dangerous, aggressive, defeated life.

Autistic people are NOT incompetent but the almost universal assumption that there we are has the dual disadvantage of making us feel inadequate just to be ourselves and also for other people to discriminate against us or patronise us.

Neurodiversity is a good concept because it drives directly into that space of incompetence and flips it on its head. We are beautiful, unique Autistic humans. That is a powerful and valuable statement right there.

I think that changing assumptions around incompetence is a fundamental necessity to achieve a world respectful of difference and respectful of neurodiversity. And I think we are right near the start of this change. It is one thing to put forward Einstein or Mozart or Alan Turing as Autistic role models, or more recently Susan Boyle or Dan Ackroyd, but I want a world where this is unnecessary. I want a world where we do not need to say ‘oh, but Autistic people can be really good at our jobs’ because everyone knows this already.

The assumption of incompetence goes to the heart of ableism. In fact people with other differences and disability face their own assumption of incompetence. Let us not judge an entire demographic group by a stereotype. Once Autistic people aren’t burdened with this assumption – and all that comes with it – we can rally make some positive change.

You know what I said when that conference MC said I was giving my ‘little’ talk? I got up on stage and looked at the audience and said ‘I am Jeanette Purkis. I am a proud Autistic woman…’ and went from there. When others value us as we are – metaphorical sparkly shoes and rainbow wigs notwithstanding  – and when we can also love and value ourselves without the need pretend to be neurotypical so that we aren’t discriminated against…. When those things are our reality I shall happily retire from my advocacy because it will no longer be needed. I long for that day when our competence through difference is respected and understood.

IMG_2892

‘I’m just not interested!’Asexuality, Autistic identity and stereotypes

I shared a meme on Facebook the other day which generated some discussion and controversy. The meme listed a number of attributes which are often stereotypes to describe Autistic people. The meme interested me because two of the stereotypes were actually true for me – that apparently Autistic people don’t drive and also that Autistic people are asexual. Let’s put this in context…

Sexuality and disability is a loaded subject. It shouldn’t be of course but sadly it is. Up until quite recently, the prevailing view was that people with disability are not expected to have sex and if they do, heaven forbid that anyone should mention it. According to many people – and unfortunately quite a large number of people – those with physical disability, neurological or intellectual differences or metal illness either do not or should not have sex. It would seem that sex is only for able bodied, neurotypical, good looking, thin, young people. In recent years, many disability and Autism advocates and activists have challenged this view. Many Autistic people do have sex and enjoy it. They have relationships with others and have all the wonderful range of different sexualities and diverse gender identities that exist. A right to be seen as a sexual being is a fundamental right,. Seeing all Autistic people as default asexual is disempowering and invalidating (and wrong). It plays into that view that we are perennial children. We are moving into a world where Autistic people can express their sexuality, The is A Really Good Thing. However, there is a snag.

Many Autistic people are in fact asexual. I am one of them. It is not that we have been brainwashed into thinking we should have or enjoy sex. It is simply that we are asexual. For me, I find sex repulsive and invasive. That is the ‘asexual’ bit. I also have absolutely no desire to be in any kind of intimate partner relationship. This is known as being a-romantic. Asexuality has all sorts of different variations. One can be asexual and homo-romantic (meaning the person does not want physical intimacy but is attracted to the same gender in an emotional way. So an asexual homo-romantic woman would seek a platonic (i.e. no sex) relationship with another woman. They would be partners but would not have sex.) Asexuality is often seen as being part of the Queer spectrum. I consider myself Queer as an asexual woman and I identify as a non-binary gender to some degree (that’s another blog post though!)

Like many people with divergent sexualities and gender identities, it took me many years to realise I was asexual. I was never interested in a relationship with a man and had experienced sexual abuse from men so thought that was why I found intimacy with men repulsive. I decided I must be lesbian because there were three sexualities on offer as far as I knew – gay, straight or bi. I spent years in asexual relationships but sort of by default. The partners I chose had mostly also experienced sexual violence and abuse. The difference between them and i was that sex for them brought up trauma, It didn’t for me – I just had absolutely no interest in it and found even the thought of kissing disgusting.

As time went on I realised I had been single for a long time. I read a news article about a man who had tragically killed women in a mass shooting overseas because he had been reluctantly celibate for some years. I reflected that I had been celibate for years but that I felt no sense of frustration or desperation for sex or a partner. I must admit I was quite relieved that I wasn’t all frustrated and angry at my lack of a partner but I wondered if there were other people like me who really didn’t care about his love, romance and sex thing which the rest of the world seemed in the grip of but which made no sense to me.

When I started my journey as an Autistic self-advocate I met an Autistic  friend who was very proud of her asexual identity. We got talking and I thought maybe I was asexual too.

 

There is a challenge for asexual Autistic though. I will return to the meme I mentioned at the start of this post. Asexuality is a stereotypical assumption of Autistic people he’d by vast numbers of non-autistic people and apparently a lot of the media too. Sexual Autistic people have spent years fighting to get their right to be seen as sexual beings accepted in mainstream society. Then along comes asexual Jeanette and her disinterested mates. Sometimes I think some people think I am ‘letting the side down’ by actually living an unhelpful stereotype. There really isn’t much I can do about this. We human beings have a tendency to simplify situations. The easy answer is often the one that gets accepted. But this is not an easy answer. I  – and my asexual Autistic peers – can be seen as unintentionally  betraying the good work others have done to dispel the myth around  Autistic people and sex.

The problem is not people validating the stereotype by their asexuality (or whatever else). The issue is the fact there is a stereotype in the first place. Assumptions and stereotypes come from somewhere  – usually a fairly vague observation of common characteristics from people starting from place of bias. Once they become a stereotype they also become unhelpful and prescriptive.  Autistic people are ALL sexualities. Challenging those unhelpful assumptions is the best thing we can do. Once people beyond the Autism community understand that we are all the different sexualities and genders that exist – including asexual – that will be a win.

[And just a couple of points about my asexuality: it is not because I ‘haven’t met the right man/woman’, because of my medication or because I am somehow childlike. And if you think it is due to farm chemicals or similar, my brother grew up on the same farm and he has three kids. It is just how I am. Like Autism, it is not a terrible thing or a deficit.

img_0457

“You’re reliable so you would have been in the kitchen”

The year is 2016. I am a single woman living alone and supporting myself with the income from my job. I have no children and do not want or expect to. I work full time, have a Masters degree and have written three published books. I identify as part of the Asexual bit of the Queer identity. I am an out loud and proud Autistic. I also have some kind or atypical schizophrenia which is mostly controlled with medication. From time to time, I need to go to hospital because of my mental illness. I spend a few weeks there and then go back to my home. I consider myself independent.

A couple of months back I had an appointment with my psychiatrist (an older man who shows me respect and care). I reflected that the medication I take to control my illness was not available until fairly recently and that had I been born a couple of generations ago I would have probably lived in an institution. The doctor looked at me and said something which profoundly affected me, He said ‘Yes. You would. They would have got you working in the kitchen because you are reliable.” Just like that, my hypothetical past self, with all the intellect and empathy and wisdom I have, confined to an institution where her greatest achievement would be to serve a roast dinner to the other inmates (and I use that term deliberately) of an institution, all of whom were destined to spend the rest of their days there. I won’t even start on the sorts of abusive ‘treatments’   which were used on these people who had the terrible misfortune to have a mental illness  – or as I understand, for some people  just to have some eccentric or divergent issues – and live in time before  effective treatments and somewhat improved attitudes.

I have probably spent well over a year of my life in the more modern psychiatric hospitals, where most people only stay for days or weeks rather than eternity. One thing I have always noticed among the majority of my fellow ‘consumers’ (how I hate that word!) is the level of intellect and sensitivity we share. I can’t help but imagine all those people in those monolithic institutions, being served dinner by ‘reliable’ Jeanette.

I paint a dim view of the past, but this is not to say the present is anywhere near faultless. I have had my mental illness diagnosis for 21 years – half of my life. I have seen some changes in psychiatric care (and at times ‘care’). My first admission was in a psych ward was in a hospital most of which was disused. All the men slept in a big dormitory and all the women slept in another. I spent most of my time alone in the high dependency unit. My friends from the Somebody’s Daughter Theatre Company (one of whom has an Order of Australia) apparently  had to argue with nurses to allow me to have drawing materials. The materials were certainly not toxic but rules were rues apparently. The nurses barely spoke to me. The doctor saw me twice and on the second occasion said site matter of factly, ‘you have schizophrenia You will need to take this medication.’ ‘How long for?’ I asked. He didn’t know. I was given a case manager but I lived in the country and didn’t drive and the case manager was two hours’ away form where I lived. The woman I boarded with drive me there once and then never again. So technically I had a case manager but I could’t get to him. We didn’t have the internet then. I was not given any information on what one was supposed to do when diagnosed with schizophrenia. I figured I would work it out for myself.

A year later I got quite psychotic and spent three months in hospital. The first one I went to kept me for a month and then deemed me fit to go home. I wasn’t and within less than a week ended up in another hospital. The chief psychiatrist there seemed to be obsessed wth borderline personality disorder, diagnosing most of his female patients with that, including me. (Funny that borderline is so rarely diagnosed in men and boys).  My parents told the psychiatrist my two diagnoses (Autism and schizophrenia) but apparently they were wrong about their only daughter who they loved and knew better than pretty much anyone. I got the borderline tab which resulted in my acting on intrusive thoughts about violence being seen as attention seeking and manipulative. I ended up in prison, then became so institutionalised and hopeless that I probably would have liked to be ‘reliable’ Jeanette in the kitchen of the asylum, safe from terrifying freedom. I managed through a combination of my own  determination, faith, parental love and a good whack of luck to escape that awful world. I lived in residential services for people with mental illness for many years but eventually got to a point where I reenrolled in university and began the journey to where I am now.

I did not spend time in any psychiatric ward between 2002 and 2010. I became extremely unwell in 2010 and found it almost impossible to get help. The services which were all too keen to put me in hospital in my twenties now saw a high-performing, professional person that they hadn’t met before so therefore must be OK. I kept getting taken to the mental health assessment unit by police and ambulance and being asked by the staff if  I was going to work. When I replied that I was, they sent me home, where I was terrified and close to acting on some of the evil thoughts I had. I believed I was in purgatory, that God was punishing me. I couldn’t use the appliances at home because I thought they were cursed too. Yes, I was going to work but short of that my life was a horror movie populated by ghosts and demons with apparently no way out. I thought the shadow life I had would keep going until I died. Even though I asked for help, none was available because apparently I didn’t fit the typical picture of what mental illness was supposed to look like.

Eventually my mum came to help. She advocated on my behalf and made sure I got assistance. But what happens for the people who don’t have someone to do that?

When I ended up in hospital I could tell that things had change a bit but the basic issues were still there. The lack or respect for the patients and our families, the paternalism, the control and assumption that we are dangerous. When I was discharged I got placed with the public mental heath service. All the doors to the consulting rooms were locked and the receptionist sat behind a glass screen, presumably because we were dangerous. They don’t have the glass screen at pubs and alcohol can facilitate violence but I guess public mental health system users have less clout than drinkers.

I spent five years in the public system before I realised how unhelpful it was. I found myself a great private psychiatrist (there is no glass screen or locked doors at his clinic incidentally). He has done something no other psychiatrist has done with me and that is tell me the long term physical effects of some of the medications I take and work51BaEj34k-L towards getting off the medications which cause a significantly increaser likelihood of osteoporosis and the one which has an effect of dulling my intellect.

I have trained the crisis team to understand how to work with me. This was a conscious act after many negative experiences.

I have managed to make things workable with my mental health and the services I use. However I know I am unusual. I have a good income so can choose a private doctor. I am insightful and confident, so if things are going wrong I can steer them in the right direction. I am extroverted, enabling me to speak up. I also have some standing in the community, so if mental health services were being horrible to the 2016 ACT Volunteer of the Year (i.e. me) it might possibly be newsworthy. Sadly most people who use public mental health services are not really newsworthy. Like prisoners, they tend to have fewer social connections and supports and be more powerless to advocate for themselves.

So thankfully I am not working in the kitchen in the institution because I am ‘reliable’, but mental health services still have a long way to come in my view. People with mental illness deserve respect and support but often this doesn’t happen. We are getting better at talking about mental illness as a society – particularly anxiety and depression – and that is fantastic. Change is certainly happening incrementally and my recently experience of mental health services was superior to my experience in the 1990s. Mental health services do still need a lot of attention to make them inclusive though. Just as my Autistic public persona will say ‘nothing about us without us’, so too will my public persona with schizophrenia because the principles of inclusion work similarly. We have come a long way but we still have a long way to go.

My mental illness is just one of my attributes. I don;t know why I would ever feel ashamed of it

Destination Neurodiversity 

I just spent two days speaking at the Victorian Autism Conference in Melbourne.   It was a great experience. I spoke in a break-out session on mental health and Autism on Thursday and gave one of the keynote presentations, about resilience, on Friday morning. I usually enjoy these sorts of things both because I love sharing my knowledge with others and I am an extrovert who gets a lot of energy from standing up in front of an audience. Unfortunately many events I have attended in the past have focussed on Autism have in fact been quite poor in terms of encouraging and supporting Autistic people to attend and including Autistic perspectives within the program.

I go to a lot of these sorts events. This one was a little different to others I have been involved with – actually quite a lot different. The organisers – Amaze / Autism Victoria – intended this conference to be inclusive and based in the understanding of neurodiversity. They had one international speaker, Steve Silberman, author of Neurotribes – a book which has a strong focus on the neurodiversity movement. I had dinner with Steve and some of the other speakers and we had some very interesting conversations. I really enjoyed talking to Steve and he seemed so attuned with the sorts of issues which are dear to my heart as an Autistic advocate.

This week’s conference was noticeably different to most of the ones I have attended in the past. There were considerations and measures to address sensory issues, a large proportion of the speakers – I think around half – were Autistic. Some of my Autistic friends were involved in planning the event and their thoughts and concerns seemed to have largely been taken on board. There was no discussion of ‘cures’ or ‘Autism epidemics.’  When I arrived and went to register, one of the events company staff saw me and gave me my lanyard meaning I didn’t have to queue. There was an app with the program and useful information on rather than one of those sad little bags you usually get at conferences. This was awesome. I hate the conference bags you get because I don’t look at the contents and then struggle with my environmental wishes to not waste stuff and throw anything potentially useful out and the sheer ugliness of the conference bags.

I left at the end of the first keynote and spent the ten minutes the speaker was taking questions by myself in the quiet room. I wasn’t overloaded but as I have more of a profile these days, I often find the breaks a bit overwhelming, with people coming up to me all the time. One of the Amaze staff saw me and asked if I was OK. I assured her I was and then I was alone for a glorious fifteen minutes, after which I could go and do my thing and talk to others.

There were some issues but many of these seemed to be around the venue rather than oversights or omissions on the part of the conference organiser. It was not a perfect conference from a neurodiversity perspective but the intent was clear and I for one really appreciated it and think it was far superior to many Autism conferences I have attended in the past.

This takes me into some interesting territory. As an Autistic adult, author and speaker I go to many Autism events, most of them organised by Autism organisations who provide services to Autistic children or adults and our families and supporters. It seems odd that I have been speaking publicly about Autism for eleven years but it is only now we are getting an event – and hopefully more events in the future – focussed around neurodiversity and trying to be accessible and inclusive of Autistic people – you know, the people the conferences are about!

I am 42. This means that the Asperger’s diagnosis was first available in Australia when I was 19 – and had been through school and all the hell it entailed. I was an undiagnosed Autistic girl in a school system which had no infrastructure to support me even if I had a diagnosis. I went through my twenties being abused and attacked and misdiagnosed with extremely unhelpful mental illness conditions which I didn’t have. I finally accessed assistance with an Autism-specific organisation when I was 28, signing up with an employment service for Autistics which no longer exists but which had a very paternalistic attitude to the clients who essentially paid its bills.

I feel that all the things I achieved  – a Masters degree and professional job – resulted mostly from my determination,  strength and resilience with very little assistance form any Autism organisations. The best help I got from another source, was Autistic author Donna Williams mentoring me and supporting me through writing and publishing my autobiography. Since then a lot of the assistance I’ve had – both personal and professional – has come from other Autistic people

I get to this point in my life – and to the point in the life of the Neurodiversity movement – and wonder where things will go. The relationships between Autistics and services assisting  us do seem to be becoming less based on ‘them and us’ and more collegiate but I think this will be an ongoing journey requiring goodwill and respect.

On a personal note, I find the ‘them and us’ things – the organisations which tolerate or condone abuse, the organisations like the one which offered me a speaking opportunity but stated they could not pay me anything, not even my airfare and accommodation, because they were paying a non-autistic keynote several thousand dollars and had no funds left for me. I don’t want the crumbs that fall from the table – I want the whole enchilada, inclusion and respect-wise!  In order to get this, I think we, as advocates, need to educate and support many Autism organisations to come on that journey too, although there can be a grey area. I often speak and write for organisations which I don’t think are 100 per cent ‘kosher’, mostly because the audience tends to be educators, parents and others who support and work with Autistics and I would rather they got their message about Autistic knowledge and experience from me or a fellow self-advocate than from some clinician who seemed to stop learning about Autism in 1997. In fact, I often find that through being involved with organisations during the panning stage of talks, I get a chance to change thinking with the organisers as well. It should be noted though that some things do not need gentle education and support to change attitudes, they need immediate action and sanctions. This refers to activities which are abusive to Autistic people.

I think we are living in what may be a very exciting time. Steve Silberman was interviewed on the ABC News Breakfast yesterday and he described the Neurodiversity movement as being the civil rights movement of our time. Hopefully my Autistic advocate colleagues, Ally colleagues and I will be making sure nobody has to ‘sit at the back of the bus’ and we can take our place in the world as we deserve to.

IMG_0446