Jeanette Purkis talks about Autism Spectrum Disorder, this International Women’s Day
by Jeanette Purkis
When I was a child I didn’t have much concept of gender or the social conventions around what a girl was ‘supposed’ to be like. Whatever it should be I never conformed to it. I remember being quite surprised at the reactions by adults in my world when I was eight and walked home from school on a hot day. The boys took their shirts off. I was vaguely aware that older girls and women had breasts and they shouldn’t really be shown off in public but I was eight and had no breasts at all so I took off my shirt and enjoyed the cool breeze. Apparently this was The Wrong Thing to Do. I was confused.
My confusion continued through my teenage years. I was shy and had few friends. I preferred the library to a party and the characters in books were better friends than most of the flesh and blood people in my life. All my schoolmates were talking about boyfriends and kissing and sex and what they were wearing to the formal. All these things seemed silly to me.
My family went to a rather dogmatic and conservative church which had a bunch of specific rules for female members. From an early age I started to realise that as a woman all I would be allowed do in the church was make the flower arrangement, play the organ or make the cakes and coffee for morning tea. All the interesting roles were taken by men. I knew my mum really wanted to do the Bible readings but she knew that wasn’t ever going to happen. The world was apparently weird and unfair.
As an older teenager I encountered sexual violence and harassment. I couldn’t escape creepy men. Thereseemed to be a new potential abuser everywhere I went. I didn’t actually feel confident to tell them to go away. I thought I needed an excuse. So I would tell them I had a boyfriend or a girlfriend, that I had to go to work or an endless stream of other reasons not to have them do whatever unpleasant things they wanted to. This tactic only worked some of the time. I wondered whether I had a sign stuck on my face that said ‘bother me. I’m shy and not assertive’.
My life went in some strange and frightening directions. I had a sort of asexual relationship with a man who turned out to be a violent criminal. By the time I worked out how dangerous he was I was too involved to leave him. We did awful, stupid things and went to jail. I went from being unable to say no to anyone to being a violent criminal – albeit an extremely reluctant one. Jail was like a malevolent high school where the bullies might kill you if you get it ‘wrong’. I worked very hard to discover what made criminal women happy, angry and murderous and somehow fitted into that broken universe with my half finished university degree and visitor’s list filled with my awkward socialist friends and fundamentalist family.
While I was a prisoner, amidst writing tragic poetry and having visiting art teachers lament that an artstudent should be in jail, I met a psychologist. The psychologist was called Vikki and she specialised in working with Autistic women. She asked me questions and got me to do some interesting activities – trying to remember numbers and arrange social comic strips. In return she gave me a diagnosis of Asperger’s syndrome. I didn’t know what this meant. Was it a diagnosis of ‘geek’? Was it just my parents making excuses for all the mistakes I had made in my twenty years on the planet? It seemed a lot to deal wth so I shelved it for a few years.
By the time I picked up my Asperger’s diagnosis again, I had gained a mental illness diagnosis, spent another three years in and out of hospitals and prisons with magistrates not knowing where to put the funny little woman who painted so beautifully and wrote like an angel but who could not stay out of an institutional setting for more than about two weeks. In 2000 I made a choice to change my life and started studying Fine Art at university again. The Asperger’s diagnosis became my friend. She was a little shy and didn’t like to be introduced to too many people, but she grew in confidence. A couple of years later my diagnosis and I collaborated on an autobiography. It was published and I was all of a sudden a rather surprised author.
I still didn’t know where I fitted in all the gendered existence of the world. What was an Autistic woman? Was I doing whatever Autistic women did? I had no idea. In 2009 I was asked to speak at a conference about women and girls on the Autism spectrum. The first day was a conventional conference but the second day was a workshop just for women and girls on the Autism spectrum. I was sitting amongst 100 of my female Autistic peers. That day I knew I had come home. I found my world, my identity, my kindred.
I have never left that moment. It is with me still. But now those 100 Autistic women have turned into tens of thousands on social media, readers of my books, friends, colleagues. I now know the terrain well. No longer wondering how to be female but knowing I am Autistic Woman and she is a good thing to be. My work now involves helping other Autistic women and girls to find their own belonging. If I can help one young woman to avoid the hell I went through then anything else is a bonus. Women on the Autistic spectrum face some specific challenges, many of which I have experienced. So International Women’s Day is meaningful to me because I want other women to have power, to value themselves. For Autistic women – and all women – to have the opportunity to find where they belong and are safe, accepted and valued.
Jeanette Purkis is an author, public servant and passionate advocate for Autistic people and their families. She is the author of ‘Finding a Different Kind of Normal: Misadventures with Asperger Syndrome’ – an autobiography, and ‘The Wonderful World of Work: A Workbook for Asperteens’- an activity book about employment for teens on the Autism spectrum. Jeanette has also contributed to other books, journals, blogs and websites. Jeanette has a diagnosis of Asperger Syndrome and atypical schizophrenia.
Jeanette has been working full-time for the Australian Public Service since 2007. In between writing and paid work, Jeanette frequently gives talks about living well with Autism and mental illness. She gave a presentation on Autism and resilience at the TEDx Canberra conference in 2013. Jeanette facilitates a support group for women on the Autism spectrum and has her own internet radio show entitled Jeanette’s Autism Show. Jeanette lives in Canberra with her little black kitty.
What IWD means for me
by Jane Alver
I’d like to be able to start this blog post by wishing everyone a Happy IWD 2016! A day to get together with other women, to celebrate what it means to you to be a woman and celebrate the efforts of those who came before us.
However for many in Australia and around the world, it isn’t a happy day. Yes much has been improved but there remains much to be done. Today is a day to stop and remember that there are still structural, legal and societal barriers to women’s equality:
‘Global maternal deaths have dropped by nearly 50 percent since 1990, but 287,000 mothers-to-be still die every year – that is 800 women every day. More than 200 million women want but do not have access to the tools they need to plan their families. Countless girls are held home from school, and girls and women continue to face barriers at nearly every rung of the economic, social and political ladders’.
Jill Sheffield, President and Founder, Women Deliver, at http://archive.skoll.org/
Violence against Women
- A woman dies at the hands of a current or former partner almost every week in Australia.
- One woman in three has experienced physical violence, since the age of 15.
- One woman in five has experienced sexual violence.
- One woman in four had experienced emotional abuse by a current or former partner.
- Women in Australia are three times more likely than men to experience violence at the hands of a partner.
- More than half of the women who experienced violence had children in their care when the violence occurred.
- Young women (18 – 24 years) experience significantly higher rates of physical and sexual violence than women in older age groups.
- There is growing evidence that women with a disability are more likely to experience violence. For example, 90% of Australian women with an intellectual disability have been subjected to sexual abuse.
- Indigenous women experience disproportionately high levels of family violence.
Pay equity in Australia and all over the world is still not a reality:
Full-time average earning difference (Australia) $277.70 per week
Full-time gender pay gap (Australia): 17.3%
From: WGEA website: www.wgea.gov.au
The goal to close the gap in life expectancy between Indigenous and non-Indigenous Australia by 2031 is not on track. Life expectancy for Indigenous women is 73.7 years, compared to 83 for non-Indigenous people.
Read more: http://www.smh.com.au/federal-politics/political-news/closing-the-gap-five-numbers-that-should-shame-australia-20160210-gmqlbl.html#ixzz42GCjDDym
Among women aged 20 to 24 worldwide, one in four were child brides – See more at: http://data.unicef.org/child-protection/child-marriage.html#sthash.SRVgFzyc.dpuf
Access to education
An estimated 31 million girls of primary school age and 32 million girls of lower secondary school age were out of school in 2013.
Call to action
But rather than wring our hands, and do nothing in despair I use these figures as a call to action. It continues to motivate me to act, to speak out, to write, to research, to march, to advocate, to participate:
So this International Women’s Day, acknowledge gains but acknowledge and respond also to calls for further activism, engagement and participation in the local, national and worldwide movements towards equality. Get involved. Speak up and out. Take a stand. Today and every day. There is still much to be done.
Jane Alver in IWD March 2015 outside the UN in New York Source: http://www.unwomen.org/en/partnerships/civil-society
Jane Alver is a YWCA Australia National Board Director, YWCA Canberra Life Member, and YWCA Australia Life Member. She is a former President of YWCA Canberra, former Vice-President YWCA Sydney, former President Women Lawyers Association NSW and former Australian Youth Policy & Action Coalition Board member. She attended the Commission on the Status of Women at the UN in 2015 as a civil society delegate. She is currently completing a PhD on civil society women’s rights advocacy. She is on twitter @janealver.
Thinking Feminism, now
by Heidi Zajac
Up until five days ago, I thought feminism meant choices. Women, choosing, in the big and the small decisions about life, what we do, in line with what we value. I thought that to be a feminist, and part of a self proclaimed feminist and gender equal society, would be measured by women exercising all the decisions over our lives. But now I’m not so sure.
Those five days ago I had breakfast with a friend. Sharp, articulate, honest, male. Female or male…I don’t know whether it matters that he was the one who had me put two and two together, but in any case, that’s exactly what he did. The next day, an article from him, a timely reiteration, written by in The Conversation on April 30 by Meagan Tyler and titled “No, Feminism is not about Choice”. And Tyler expresses her point perfectly below, that suddenly made the raging, messy debate a more thoughtful and powerful one which forced me to decide where I sat with, the now elusive, choice + feminism concept.
Read almost any online article about feminism and the comments will soon devolve into a debate about choice. It doesn’t seem to matter what the topic is, people are quick to reframe the issue as one of women’s empowerment and right to choose. This provides a neat diversion from talking about the larger power structures and social norms that restrict women, in many different ways, all around the world.
– Meagan Tyler, in The Conversation, link http://theconversation.com/no-feminism-is-not-about-choice-40896
It was less the content in this article that unnerved me and more the unnerving that did it. Following?! I was utterly surprised by my own reaction. There was I, weeks from turning 30, in what I thought was a steady, organised position of how I saw the world as a female, and how I thought feminism and gender equality sat with me. I had even become so brave, and uncharacteristic, of late by saying those exact words “feminism is all about choice”. In other words, the ultimate space for a woman to hold is a life where she makes her own choices.
I read the article and instantly knew I had it wrong. I felt immediately unsettled and then I was spinning with confusion. There has been no epiphany and I’m not waiting for a moment where I understand everything about being a feminist perfectly. What I am experiencing is a stack of questions about what choice means, what it looks like and feels like for different women who occupy varied and unique lives. I’m wondering too whether it matters. Does choice matter? And is it the main game of living in a gender-equal society?
When I think about my own life I am defined by the choices I have not been forced to make; the life
experiences I have not had. I can sprout ‘feminism’ and ‘choices’ like the two are a perfect match. But I would be wrong to think about my own life that. I did not have to choose, for example, between family and friends and lovers. I’ve usually lived in the same area or one days’ travel away from family when I lived with a partner and keep dear friends in both cities. I have not had to make choices between pursuing my passion and working to earn a living. I have both in one role. I have not chosen between a great love and myself. So I wonder – if making a choice has not been necessary for my life to live the blessed life it is right now, are my rights as a woman founded on more than my choices?
There are choices that each of us never have to make. The absence of that decision-making does not mean that equality, opportunity, resources, fairness is not part of a woman’s life. So to summarise this slightly confusing idea, I believe my life is a good one not because of the choices I have made about my life but rather because of the conditions and circumstances and the people around me in my life.
To look at this point another way, if I am a woman who has made choices about her life to determine its path at trying moment, if I have made those choices out of negative circumstances, and been without my rights whichever choice I make, then surely, surely, I am not experiencing feminism at its best.
I am uncomfortable continuing with the choices and feminism line for another reason. It’s less personal and is more disturbing. The problem with talking choices is the judgement that hovers around it. If I am woman choosing to live with a man I am unhappy with, where I feel badly about myself, while I work to be financially independent, then I must, surely, have a choice between staying or leaving. If I leave, I’m told I’m empowered. I chose it, I made it happen. What does that mean if I stay? I chose to stay, so I must be empowered and living the epitome of feminism.
But clearly not. Our lives and our decisions are far more complex than being able to, on paper, make a decision between staying or going.
Maybe there’s more to feminism than making a choice. Maybe, like the choices I have never been confronted with making, I am empowered as a woman when I am respected by friends, family, lovers, and in my community. When my human rights are upheld in my private and public lives.
There’s a part of choice making that I’d neglected to consider. For a holistic thinker who seeks to understand how ‘it all fits together’ – this next point is left til last for a reason. How could I miss it? It is, like my other musings, uncomfortable. Here goes. I cannot imagine an individual or a family that is unaffected by the world and environment they live in. The economic, environmental, political, social, cultural worlds that traverse our paths daily guide – or misguide – our ‘choices’. When I think about how this relates to that prickly and current though hotly contested comparison between women who work, women who have kids, and women who do both, I realise how impossible the ‘choice’ descriptor is. Whether I work or have kids or do both, I believed, is unimportant, “what matters is that a woman has chosen to work/have kids/do both”. I now believe I had cut my thinking about short too soon.
All of us occupy a unique set of circumstances in our lives, and each of us is influenced to some extent bythat. The handful of recent times you made choices about something personal, or even at work, have a go at separating that choice from external influences. Social expectations. Your family. Rent or the mortgage. Religion. For me, I thought about how the choice I was about to make will affect the people in my life. My partner, my family, and yes, even my reputation among colleagues and acquaintances. I even observe that whether I like it or not, I think about what other people’s friends, and their friends, people I may have met just once, will think of what I’m about to do or not do. It is impossible to separate our internal decision-making from our what influences us externally.
I won’t pretend that this thinking about what other people will think is the same for all women. For me at least it is a big part of my decision making process. I know too that what I’ve read lately, stories I’ve been told by friends about others, seeing movies, documentaries, the news…influence my decision. And it is so for better or for worse. My choices about money would actually be more erratic, for example, if I were asking choices independent of knowledge I consume from media. On the possibly less positive side, I’m just as certain that I wouldn’t be doing as much with my life, and so I would experience less periods of burnout, days of migraines or nights spent sleepless, were I not influenced by the tales of seemingly ‘superwomen’, who do it all and have it all by age 30.
I’ve apparently made choices to do what I do, but I also have some mighty fine factors in my life that make it a good one today. Sometimes I wonder, if I were part of a different society and culture to this western one I live in, would my choices look any different, even if I were the same person with all my strengths and flaws? It is impossible to say for certain. But I would confidently say yes, I imagine my choices would differ. My choices are not made in isolation from the family, community and the culture that I live, be it for better or for worse. I am a still a Feminist. All I know for certain are a couple of things. The first, Feminism is about much more than Choice. Next, what it means to be a Feminist is ever evolving. Finally, upholding the human rights of women matter a great deal more than having that now evidently elusive, choice.