AWEgust Day 2 – Embracing my ‘other’ label

You may wonder why my blog title is ‘AWEgust Day 2′. The reason for this is that I’m undertaking a challenge to raise money to train more mentors for the I CAN Network. I will be writing a blog post every day between now and the 31 August. So far one very lovely person has donated $7.50, which is good but I am hoping the raise a little more than that. Here is the link for donations if you feel the need:

https://awegust.everydayhero.com/au/jeanettepurkis

Most people know me as Jeanette the Autistic author and advocate. I do a lot of work in the Autism world and that is how I usually identify. Something many people won’t know is that I have another little ‘label’ – this one a psychiatric diagnosis of atypical schizophrenia. I have had this label for one year less than my Autism one so you would think I might have accepted and assimilated it into my sense of who I am, but alas no. My journey to ‘own’ my mental health diagnosis is an ongoing one.

The reason I am writing about this is that I met someone yesterday who I knew when I was in psychiatric hospital a few years ago. When I first met him, he was 21 and a somewhat errant, drug-smoking child of middle class parents. In the ensuing five years he became more and more institutionalised, spending long periods of time in hospital. When I saw him yesterday, he looked as old as me and he would be no older than 26. He has a BIg Issue lanyard and a bag full of Big Issue magazines. I’m glad he is working and I think The Big Issue is a great thing for many people who struggle with various issues. We had a conversation on the bus. He was caring if a little intense and as he disembarked the bus he called out to me to stay out of hospital. I was grateful for his advice but it is advice I ave given myself on a number of occasions.

My Big Issue-selling friend has a very similar diagnostic label to me. Our lives are very different in some ways and astoundingly similar in others. I too have spent many months and years in hospitals and other institutions as a result of my illness. I spent time in my twenties being homeless and institutionalised. What people see now is simply the latest chapter in the book of Jeanette, but I have been in dark places of dependence and self-destruction. Lately I have been thinking about my schizophrenia label and why I struggle to own it. It;s not about the fact it is a deficit or a negative for I can see some useful elements of it, particualrlly around creativity and writing.

I think what I struggle with most is the low expectations that almost everyone has when you mention that S word. I have known a number of fellow owners of the S-word in my life who are conventionally successful – professional employees, academics, artists. One woman I worked with in the past told me that fact about herself as if it were a great big shameful secret. She pleaded with me not to tell anyone, as if it were an undisclosed criminal conviction or a particularly embarrassing and disgusting sexual sin. I imagined this woman worrying that I might tell her supervisor or something. Of course i would never betray a confidence but it concerns me that having schizophrenia should be such a big deal.

Of course like all things I haven’t quite accepted I find it far easier to be strong and confident on behalf of other people. When it comes to thinking about myself I am almost as troubled by it as my work colleague all those years ago was. I know that I need to accept my other label and make friends with it. Like my autism, it is part of me and has shaped who I am today. One difference I notice between the schizophrenia world and the Autism world is that us Autistics have a fair number of high profile role models. We can say ‘but look at Temple Grandin or Dan Ackroyd, or Ladyhawke or Stephen Shore or John Elder Robinson or Susan Boyle…..’ For people with schizophrenia we have a couple of Louies  -Lewis Carroll and Louis Wain and of course the fellow in A Beautiful Mind, John Nash (who I am always compared to while in hospital). For most people, schizophrenia is entirely negative and people who have it are expected to become homeless or unemployed or live sad and lonely lives. I don’t see this as my future and I do not wish that on anyone I know who shares that diagnosis with me but these are the views that low expectations seem to impart to us all. I wonder how much these low expectations affect clinicians treating people with schizophrenia in their care ad how this in turn might impact on the person themselves and what they think they are capable of. I have been told on numerous occasions by hospital staff that I should go on the disability pension, despite having a supportive and well-paid professional job.

I am going to speak at a mental health conference this month, which I am looking forward to. My schizy label will be on display for all to see, including me. I am talking about creativity and my recovery journey. I am really looking forward to it. In fact I am beginning to want to do advocacy around mental health as well as Autism. Some of you may know that I am currently working on a collaborative book about Autism and mental health issues with Dr Emma Goodall and Dr Jane Nugent. The book is due out next year and I am hoping it will open doors around mental health advocacy and bring my two worlds together. Life is a funny little unexpected journey isn’t it?

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Indeed, let’s do this thing!

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