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.


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

  1. This is a thoughtful post. I enjoyed it quite a bit; so often as advocates we want to focus on ways we are not privileged and it’s so important to unpack our “invisible knapsacks” so to speak and examine the ways in which we are. Sometimes our privilege can help us to amplify the voices of others, as in a story I read about sisters, one with lighter skin, and one darker, and only the darker skinned sister needed to present ID to pay. The lighter-skinned sister, who had passed through also paying by check, but without the harassment, questioned the checker, and soon the people behind her sister were questioning, too, but the sister being harassed knew that she couldn’t be the one to raise the fuss, not at the time, or risk being stereotyped further. Her sister used her (perceived) privilege to get the ball rolling and gave voice to the objection she had inside, but couldn’t make right then. I really liked your point about how being more known has now made you more privileged and the new responsibilities that come with it; such a great reminder that we have to keep re-examining ourselves.


  2. There is another, tangential, side to privilege too. It has been assumed that I, as a white woman, very intelligent, educated and from a middle class socio/working class economic background, shoild have used my privilege more capably than I have. A woman like me ought to not have a train-wrecked life such as mine. Some have seen me as a spolit brat, squandering my privileges.

    It is such a loaded term – privilege. Subjective. With it comes a host of expectations, as you point out, Ms JP. I’m not sure if we ever ask each other what this means, or what effect it has, on ourselves. It seems to only be a point for discussion in the disability realm or in ‘race relations’.

    To remind myself of my privilege, I had the words humility and gratitude tattooed on the inside of my wrist. In the darkest of times, I still have the privilege of drawing breath and the use of my organs. As if that isn’t the greatest privilege right there??!!

    Perhaps, again highlighted by you, the most indepth discussion about privilege begins with one’s self.


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