Musings on life the universe and everything at the end of my 42nd year

Tomorrow I will turn 43. Birthdays are a funny sort of thing for me, as I imagine they are for many people. A time to celebrate but also to take stock and look at all those years and what you have to show for yourself. My birthdays as a child were an exciting time. I was the youngest in my entire family and also the youngest in my year at school. I hated being young and wen I was five thought my primary school teachers were patronising and infantilising me!

When I was a child we rarely got new toys or clothes. My dad worked the land so the generosity of my gifts was usually determined by broader economic conditions and things like the spring weather or the price of tomatoes in France.  All I knew was that when I was seven I got all these beautiful things which I treasured. I still have some of them now. Even when I was a young adult I liked receiving happy messages, cards and gifts to celebrate me. I didn’t get celebrated much in my youth, possibly due to my puzzling passionate interests and socialist politics.

My early adult years were a negation of any celebration of me, a fall to the depths of misery, poor choices and shameful actions. I spent my birthday in 1997,1998 and 1999 in prison. Family visited and people sent me cards. I remember wondering why my usually respectable brother had sent me a card with a design of marijuana leaves on it and then realised a criminal friend had very similar handwriting to my brother! I admit I was a little disappointed. Prisoners live on letters and cards and occasional phone calls with those who they love. For prisoners the confinement would be infinitely easier with their family around – their kids especially. I always thought the punishment element was mostly composed of that enforced absence from people who care for you and the shameful reason for it. Thankfully I have no children. My tenuous connection to my parents was the thing that meant I eventually changed life for the better and had no more birthdays in prison after 1999.

I don’t know how things happened the way they did. It seems worthy of a daily celebration that I changed my life so completely that I have now largely forgotten what i was like to be the person I was. Nine years after my 1999 birthday I had a professional job, a Masters degree, a mortgage and a published book. Now, nine years after that time I have a few more books and have become a role model, a mentor, someone people respect and seek out for assistance and advice, and for some reason, the recipient of a wide variety of awards, most of them for leadership.

Tomorrow I will be forty three. My birthdays in recent years have been big and impressive, My eight year old self would have been wide eyed at all the cards and presents – and things with a black cat motif – that I tend to be given. My home is my haven now – a little comfy cave of nice things and Mr Kitty and enjoyable, rewarding work and visitors and chaotic perfection. For the first time in my life I love my home. I understand what ‘home’ means and am so grateful to have one. Somehow I became a public figure. I am frequently sent emails inviting me to dinners with influential people, I speak to rooms full of medical professionals and they listen to what I say. How on Earth did I get to this? Are there other ex criminals who are nominated for Australian of the Year?  I keep expecting it all to turn out to be a dream or for everything to fall apart and find myself homeless, poor and cold in the Canberra winter, hoping that wherever Mr Kitty went to they are looking after him.

I guess birthdays prompt thinking on another thing: something I fear greatly – the idea that out time here on Earth is limited and at some point we will all say goodbye and go wherever one goes. When I started on my Autism advocacy journey I had an amazing mentor who very very sadly is not here any more. She instilled in me a sense of pride in my Autistic-ness. She taught me that to stim is a fine thing and to be unusual and unlikely is a thing for pride and enjoyment, not ridicule or shame. My resplendent mentor Polly instilled in me the basis for my Autistic identity and I imagine that my Autistic identity is probably doing similar things for people I know and mentor. I know that Autistic people and those with mental illnesses like schizophrenia (which I have) tend to live shorter lives than those without and that I am overweight and unfit. I am constantly aware that there is some urgency in my life. I don’t do death or grief well. I find it hard to say goodbye and let the person free. I want a ‘telephone to heaven’ to be able to talk to those I care for who are not here. Gee, I got morbid this time didn’t I? But I think the meaning of my pondering on age and identity and marking your existence through time with an annual celebration. I think these refections get to the point of who we are. I feel I need to use every moment I can to support others. I got a chance – fifty or sixty chances – to stay around and get to to where I am now. I am grateful but I am driven. Life is a huge, great, wonderful, shining gift. I will keep this in mind tomorrow when people message me and call me and wish my all the best for being a year older, and a prime number year and similar things. And I will be eternally thankful to everyone sharing this amazing things that is my life. Happy Sunday, happy life, happy journey to everyone!

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Me aged five

 

Unlikely journey: How I got from woeful to wonderful work

I spent my day at work interviewing for entry level positions at my workplace. It was my first time on an interview panel at my workplace and it brought up a lot of memories and feelings. I joined the department through a similar process myself over ten years ago. This is the back story to my becoming a professional corporate suit-wearing Jeanette which will hopefully touch on some useful thoughts and strategies around employment and life more broadly….

In late 2000 I was living in supported accommodation for young people with serious mental illness. I have a  schizophrenia diagnosis in addition to my autism one. I was delighted to live there as it was a step up form a dingy boarding house for homeless women and before that prison. As a result of my naivety and inability to spot dangerous people, coupled with trauma, self hatred and anger at everything, I spent the time between 1994 and 2000 in a hell of prison, drugs and mental illness. My concept of the future was the coming Thursday. I was self-destructive, violent and only focussed on negative things. I was probably not somebody you would like to know or to be.

By the time I got to the  accomodation for people with mental illness I was in an odd sort of transitional phase. I wanted positive things but was unsure how to get them. I remember clearly sitting in the room where the little gold pay phone was after finishing a conversation with my mum. ‘I want to be ordinary!’ I thought. What I meant by ordinary was to have an education, a professional job, a mortgage and a suit. My focus had evidently shifted from negative to positive. I told nobody of my plan, thinking they would ridicule me or respond negatively. I was accepted into university and started my bachelor of fine arts in March 2001.

I was an engaged and successful student My first semester results featured mostly high distinctions and distinctions. I wondered if maybe I could get a job if I was doing so well at university. A friend who worked in restaurant got me a job trial as a dishwasher. I was so proud to be employed even for two evenings a week. I passed the trial and soon had regular hours. I started to notice something though – every time I went to work I would be anxious. The anxiety increased with each shift. I would repeat song lyrics in my mind endlessly at work.   I thought if I made a mistake the restaurant would go out of business. Soon the anxiety was with me everywhere I went, whatever I was doing. Nothing would relax me. I did not realise how damaging this constant high anxiety was but after just a few weeks I was seriously unwell wiht psychosis, went to hospital, had to quit the kitchen job and take a special consideration to ensure I could stay at university. My reflection now is that the most telling thing about that series of events was that not once did I think ‘I will never be able to work.’ Instead I thought ‘I can’t work now.’

I spent a couple of years desperate to work but still too anxious to try. When I felt ready to work I took on a volunteer job and worked up from there. I now give a lot of presentations on resilience and I would describe my approach to finding meaningful work as putting in controlled challenges to build my employment resilience.

I worked a few hours at a tiny business I had editing videos for colleagues at art school and I had a job a couple of days a week collecting coin donations for the AIDS Trust. Then something happened which changed everything in my life. I now refer to it as my point of no return. I met the late, and wonderful autistic author Donna Williams / Polly Samuel at a course in late 2004. I was in between completing my honours and commencing my masters degree and the course was through an autism employment service. The qualification would enable us to speak at schools. At that point I didn’t know much about the autism community. I didn’t know that  Donna was a highly respected author and role model in the autism community but we got along very well and she become my mentor. With her support I wrote my life story – urgently over a four week period. For me it was catharsis. It was accepted for publication and my life changed. The biggest difference was in my self confidence and sense of self worth. An author was an exceptionally valuable role to have, especially as I loved reading and books and authors had been my ‘friends’ through horror and often friendless years at school.

Three months after the book came out I decided to apply for my professional ‘ordinary’ job. I looked at some online career sites and found two jobs I thought I could do – one in the Victorian Public Service and the other in the Commonwealth Public Service. Pretty much everyone I knew – including my psychiatrist – told me I couldn’t do it for a variety of reasons. I had to supply some additional information due to my unpleasant personal history and the poor choices which came with it. This meant I had to wait a little longer to find out the outcome of my application. In the past that awful anxiety would have taken hold and broken me but I had built some resilience and self confidence,

When I found out my application had been successful I was delighted. At this point I was living in quite a depressing public housing estate with a stalker living upstairs from me and making my life awful. The whole place had a hopeless, ‘end of the line’ sort of feel. Even though I worked a little I was unable to afford a rental on my own. I needed a full time job. Because my exiting new job was in another state I could leave the stalker and the misery she caused behind.

When I started my job:

  • I did not know one person in the  city I moved to
  • Almost all the other graduates in my workplace had academic backgrounds in economics, law or international relations. I had a Masters of Fine Art
  • Almost all the other graduates were in their early twenties. I was 32,
  • I had never worked full-time and worried I wouldn’t have the physical stamina to do it
  • I had never used Excel. When I explained to my supervisor I couldn’t use it I thought he would send me back to Melbourne . He sent me to an Excel course instead. I am now known for my ‘big spreadsheets’
  • I thought I was the luckiest girl in the world to the such an amazing job. I still do.
  • I walked into the big swanky shopping centre in the middle of town and thought “Nobody’s going to be mean because I am poor’ closely followed by ‘Yay! I can buy nice things!!’
  • I didn’t fully realise what an amazing an unusual opportunity I had.

I now reflect on a few interesting points in this story

  • My determination and positive view that I could achieve played a big part in how I got to here. I didn’t have a lot of self doubt along my journey
  • Things could have gone one way or the other many times, It was not inevitable that my future should have turned out as positively as it did. There were thousands of decision points
  • I was aspirational. I still am. An aspiration is like staking a claim on the future. It is an anchor point.
  • I have never wanted or had a ‘dream job’. I worry when people talk about very specific goals because they are much harder to attain, with a higher chance of disappointment. And in life, focusing only these disappointments can lead you down some unpleasant paths
  • If you find a good mentor which is willing to share their time and energy, that is a wonderful thing. Mentors and roles models are a really important part of my life and I greatly appreciate their work and support.

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Thoughts on Intersectionality, inclusion, privilege and unconscious bias

I was in a conversation today discussing unconscious bias. It was made particularly interesting – and somewhat disappointing – when someone said ‘I mean I get jealous of the things Indigenous people get…’ I did call her on it, albeit gently. I told her that as an Autistic person with a mental illness there were some things I ‘got’ as well but it was to redress imbalance in society and barriers to participation and inclusion which people face. I pointed out that a lot of that is perception and misunderstanding of how services work and even so, she probably wouldn’t want to have the reasons to be eligible to ‘get’ things which Aboriginal and Torres Strait Islander peoples do – intergenerational trauma, dispossession, the discrepancies in life expectancy and domains like employment, physical and mental health, as well as bigotry and discrimination.  She was saying what she thought at least but it got me thinking about these kinds of things.

I think I’m just going to go with a paragraph or two on each of the topics in the title and unpack them a bit, at least to my own understanding.

So…..

Intersectionality

I will describe this in two ways.  The first is in relation to a conversation I had online a while back with an Autistic man in the US. He was complaining because apparently some ‘feminist’ had challenged him on the fact that he had twelve white male admins on his Autism advocacy group. The man wrote on social media for all to see ‘Autism has no gender…’ I was appalled and raced home to dash off a speedy blog post which I think was titled ‘Autism has a race and a gender and a sexuality and a class….’ Ad what I was writing about was intersectionality.

What intersectionality is all about is the idea that people experience different kinds of disadvantage and discrimination. As an Autistic woman with schizophrenia who has a history of institutionalisation  and socio-economic disadvantage who identifies as somewhere along the non-binary gender spectrum, I have a number of lenses of difference and potential for disadvantage.

Essentially discrimination and disadvantage can be compounded and exacerbated by belonging to different intersectional ‘groups’, as can our experience of the world and how we present to others. This is a very impotent concept, particularly for people who belong to intersectional groups. However it is a vitally important concept for everyone to understand – our families, friends and colleagues, organisations providing services to us, educators, employers, clinicians and so forth. If people in our lives don’t understand intersectionality it can result in the kinds of disadvantage we try to avoid. This is not just a concept which people facing disadvantage need to know about it. Everyone needs to know about it or those disadvantages, prejudices, micro aggressions, exclusions and service failures will just continue and so many people will struggle to lead fulfilled lives where they are respected, understood and included.

Inclusion

I think everyone has an idea of what constitutes inclusion. Inclusion is tied up with the concept of  diversity. Many people think it is a sort of nebulous thing where everyone is nice to each other…. Not quite. Inclusion can be seen as a radical concept. The opposite to inclusion is exclusion. I see this everywhere as an Autism advocate – issues in services and programs, assumptions and prejudice in all sorts of places where it shouldn’t be. Advocacy and activism challenge this sort of thing by promoting inclusion. Inclusion is on one level about ‘doing alongside’, in consultation and collaboration with, and not ‘doing for’. I think that inclusion is best driven by the people who are excluded. Inclusion can be challenging and uncomfortable but through that, understanding and acceptance can emerge.

One thing to be aware of is that people who face disadvantage are not necessarily inclusive on all issues. I sometimes meet people who seem to think diversity stops at whatever disadvantage they themselves have. I have seem disabled people with apparently  great disability politics show a lack of respect for other groups. Tying in with intersectionality, I think it is vital that those of us who are in one or other potentially disadvantaged group to understand and respect the needs of other groups, otherwise I tend to think ‘what’s the point?’ I decided many years ago that I was singled out and abused because I was ‘different’ so I have a responsibility to support others with ‘differences’ – whatever those may be.

Privilege

This is a tricky one which is quite often misunderstood. There a number of different sorts of privilege – a typical one is wealth.  Many people identify White privilege and sis gender, male heterosexual privilege. However the tricky part is that people can belong to a disadvantaged  group at the same time as being privileged in another area. That US Autism group admin who thought Autism had no gender would in my mind at least, fall quite neatly into male privilege despite being Autistic. But it gets more complex. Privilege is not in and of itself a bad thing. The issue tends to occur where there is no awareness of privilege by the person who has it. In my case, despite living in poverty for most of my adult life, I am now a well-paid professional who owns property. I consider myself very privileged in terms of socio-economic advantage. However I am always aware that I have this privilege and keep it in mind when talking to and working with people who are socio-economically disadvantaged. Hopefully there will be no ‘Let them eat cake!’ from Jeanette.

So in essence, privilege is inevitable for some people but if they are aware of it and make allowances and learn the perspectives of others who are not privileged it is much less of a problem.

Unconscious bias

This one is a tricky thing indeed. It refers to people being biased or bigoted but being unaware that is the case. A statement like ‘Even autistic people can be taught social skills so they can communicate properly’ demonstrates some pretty significant unconscious bias, but I bet if you challenged the (in this case imaginary) person who said it, they may struggle to identify what the issue was.

Addressing unconscious bias is often difficult as calling the person on it can backfire if they genuinely can’t see what the issue is. More wholistic interventions to change thinking and understanding around autism (or whichever attribute the bias relates to) can be helpful. We are actually seeing this a little in messaging around autism.

When I started doing advocacy  in 2005 there was a huge amount of unconscious and some deliberate bias, particularly paternalism – in every forum I attended. The idea of Autistic people being involved in the design and delivery of autism services and events was a long way off. So while things are for from perfect nowadays, I see less unconscious bias form non-autistic people than I did in the past. And the thing which is working to challenge that unconscious bias is advocacy and activism being driven by Autistic people ourselves. I think that holds true for other groups: addressing overt and unconscious bias is best driven by the people directly impacted who have first hand knowledge and investment in the issues. I recognise as well that there are some wonderful neurotypical allies who also have a strong investment in empowerment – usually as partners, parents or children of Autistic people. It is nice to view through twelve years of hindsight that things have improved. We still have a huge journey to travel but I do hope one day to realise my dream of being completely redundant as an advocate because I”m not longer needed (at which point I will switch to mental health advocacy which needs a lot of attention!)

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An adventure in non-autistic space: Why I love speaking to new a audience

A few weeks ago I logged on to my laptop and saw an email from an unknown person. The subject line said ‘letter for award’. Given that I wasn’t a finalist for any awards I was a little intrigued. I opened it and found out that Toastmasters District 70 was awarding me with a Communication and Leadership award. The District 70 Director selected me for the award after seeing me give a talk a few years ago and then doing some Googling….and there does tend to be quite a lot of me on the internet at the moment!

The awards ceremony was in Western Sydney. It seemed such an interesting experience to receive an award from an organisation I only knew of peripherally and to to have a night out – a proper adventure I thought, so I agreed to go along. I was asked to give a thirty minute presentation on my life story.

I reflected that the weekend prior I had been in Melbourne at a peer research workshop for the Autism Cooperative Research Centre with predominantly autistic attendees. It was ‘Autistic space’ and quite wonderful. I could be exactly myself as could everyone else. I thought that the Toastmasters awards night dinner might be the opposite of this – a scary notion of ‘neurotypical space plus one Autistic’.  Plus I didn’t know anyone who would be there. Even the person who gave me the award was someone who knew me from being in the audience at one of my talks and not someone I knew well.

I got the bus to Sydney and a cab to the venue. It was one of those huge rugby league clubs in suburban Sydney. I signed in as a guest and found the function room the dinner was in. I introduced myself to the woman outside the room. ’Hi I’m Jeanette, the guest speaker.’ She advised me matter of factly that they were setting up and I should wait outside. I  was a little surprised but figured I wouldn’t be a lot of help in setting up the room!  Soon afterwards two of the other people attending the event turned up. I got a very warm hello and conversation. Then the incoming district Director turned up and introduced himself and said how much he was looking forward to my talk. The woman who selected me for the award arrived and we went and got coffee, only to be met by two of the other Toastmasters. I’m not sure what demographic I had expected to be there but I was surprised by the diversity the group. It was very friendly and everyone knew each other. I felt like I had been welcomed to someone’s family dinner. In fact I have never been in a friendlier room full of complete strangers. The sound people miking me up were lovely and one of them was a woman and there was a curtain so that I could maintain my dignity – such as it is – when dropping the battery pack for the mic down my top and attaching it to my belt.

I was actually nervous about giving my talk. Not so much around talking to a room full of people – I do that all the time. I was anxious about the content of my talk. This often happens when I do the life story talk with non-Autism world people. What if they all just judged me and gave me evil looks and didn’t talk to me afterwards because of my poor choices and abject lifestyle in my twenties? Then I remembered that the main value of my story is how what I do now exists in relation to my difficult past. After my talk I got lots of compliments including from someone staying at the same hotel as me who told me how good my speech was as I ate breakfast! Mine was certainly not the only award as most of the people in the room got awards for their good work as leaders in the organisation. I am very happy I decided to go to Sydney, collect an award and meet some warm, inviting people.

But this is not just a nice story about me getting an award and meeting lovely people.  I think the key point of interest in this story is the idea of Autistic advocates and individuals engaging with a mostly non-autistic audience and one which has little experience or understanding around Autism. I’ll have a go at unpacking them. Here goes…

  • Speaking to audiences who know very little about Autism makes me feel wonderful because I am spreading the word and introducing them to my own Autistic reality and broader Autistic experience and thinking around neurodiversity which may well dispel or challenge stereotypes and assumptions. I think that is quite a worthwhile thing  do, even if it can be little bit nerve wracking!
  • As Autistics we can expect non-autistic people to all be judgmental or hostile. This can mean we approach new situations with this thinking. Many of have experienced bullying and bigotry so this is understandable.  But it is not always the intention of others to be hostile or rude, and ignorance – which can be often be addressed without too much effort – can be confused with outright bigotry.
  • I do speak at quite a few non-autism world events, It is challenging as many people have some unhelpful thinking but the beauty of me speaking in these forums is that I can start to address that unhelpful thinking. I would much rather people listen to me or another Autistic person talking about Autism than someone who shares their unhelpful thinking, This does mean  I often feel like I am ‘taking one for the team’ but it also allows me the opportunity to support people to change their thinking or see the world in a more inclusive way.
  • Outward hostility from non-autistic people at events is unusual in my experience. Often what happens is that someone comes out with some offensive statement  and understandably I get annoyed and respond in the heat of the moment. This usually means I ‘lose’ that person and have no chance of engaging them in the future. If a person’s statements were from hostility and bigotry, anger is definitely warranted, but what if they were simply ignorant and repeating the views of their parents etc? I know autistic people who are ableist against themselves because of internalising societal and parental ableism. Sometimes thinking and attitudes are more complex than they first seem.

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