“An autistic schizophrenic overweight middle aged woman is sitting in her tiny, chaotic home, talking to her black cat with the infatuation Gollum has for ‘his Precious.’ Hunched over a laptop with a fair share of crumbs and evidence of spilled things she is stimming and buzzing, writing feverishly. She talks out loud to Spotify, complaining as if the software had a soul and understood her need to listen to music which isn’t ‘terrible’. She is frightened of ghosts in the shadows. She is childless and single, alone in her world“
“The ACT Volunteer of the Year sits at her laptop, writing words which may help thousands of people. She has spent the day at her professional job and is now relaxing with some writing. She is driven to make change. She may be quirky but she is also brilliant and passionate. Her small home is devoted to her disability and mental health advocacy work. Her small but tasteful flat has its own name – Whimsy Manor. It is decorated in eclectic styles with beautiful artworks. The woman has a flair for the artistic which must be from her Masters degree in fine art.”
If you are a regular reader of this blog you will probably realise that both these statements are about the same person – me. One is from a pathologising viewpoint, and the other one – well, it felt a bit weird to write it because it is rather gushy, but it is obviously from a more sympathetic viewpoint. The two narratives demonstrate the concept that what we say and think about people colours our view and our relationship with them. For Autistic people and people with mental illness – and many other groups in society – there are a bunch of unhelpful stereotypes and assumptions that we often get lumped with. I thought it might be an idea to unpack a few I have come across and how they made me feel and what I did about them.
- I take medication for my mental illness, I have taken this medication since 1995 (with a few tweaks for effectiveness). I moved into my own home in 2008, my tiny, chaotic and wonderful Whimsy Manor. I located a chemist close by so I could pick up my medication. I take six different things so use a Webster pack where the pharmacist puts the required dose at the required time so I don’t forget to take any of them. In 2010 I became very unwell and spent some time in hospital for my illness and also in mental health respite. I had to transfer my scripts to a different chemist as the respite place was in a different suburb. I went into the chemist in my home suburb and explained the change. I had my support worker next to me. The pharmacist said ‘oh., so your mum is going into respite?’ I have to admit I was baffled. It turned out that in the three years I had been collecting my medication from this business they had assumed it was for my mum as supposedly someone with an Australian Public Service lanyard who wore a suit every day could not possibly be taking high doses of antipsychotic medication! Amazingly this misconception took a few tries to address. Eventually the pharmacist said to me ‘Jeanette? Do you work for the government?’ To which I replied ’Yes.’ She considered this apparently radical idea for a bit and said ‘Most people who take these medications don’t work for the Government’. I replied ‘You would be surprised.’ Since then I receive a lot of respect from all the staff at the chemist but it still amazes me the level of assumptions involved. My mum doesn’t have schizophrenia and she lives in another state, five hours’ drive away! I hope my experience has helped the staff to realise that not everyone fits into a stereotypical ‘box’.
2. A woman got in touch with me a couple of years ago. She professed friendship but seemed more interested to ask me to promote a sort of self-actualisation thing she worked for which apparently gave participants financial incentives for gaining new members. She wanted me to promote this thing to Autistic people and was very insistent. I felt uncomfortable being around her. The woman came to the launch of my second book. I had proudly taken the stage and professed my firm belief and understanding that Autistic experience is ‘different, not less’. After the speech I signed books along with the illustrator, a wonderful local artist called Andrew Hore. The woman came up to me and said ‘Jeanette, you know you don’t have to say you have Autism.’ Immediately I could see that things were probably heading in a horrible and quite offensive direction. Curtly I said ‘Why?’ The woman responded ‘Well, you could pass for ‘normal’”. I found it hard to respond to this highly offensive statement, particularly as I had spoken for a good twenty minutes about empowering young Autistic people to be their own amazing selves and support them through getting work. I don’t actually remember the exact words I said but Andrew, seated next to me said I handled it well. I know I refuted her statement and explained why I had no great desire to be ‘normal’. In context, I spect my teens and early twenties trying to belong and fit in. It was an unmitigated disaster and cost me my identity for many years and could have cost me my life. The biggest insult was that the woman did not understand why I unfriended her on Facebook after the incident!
3. I was at a conference a couple of years ago and had gone to the quiet room because I found the first keynote presentation triggering. The only other people in the quiet room were conference volunteers, mostly non-autistic people. We got talking. This was when not many people had come across me and my work. I was a little vulnerable because I was quite unwell (but was determined to go to the conference and deliver my presentation about Autism and employment). I found the conference volunteers in the room to be a little patronising, The conversation got to living arrangements and one woman asked ‘Do you like at home with your mummy?’ I am really proud of how I responded to this surprising statement. I looked her in the nose (I am Autistic after all and looking at eyes is scary) and said ‘No. I live in a house I am paying off with the wages form my permanent, full-time job in the public service!”.
I think all three of these encounters demonstrate assumed knowledge and stereotypes. I hope I did a good job of dispelling the myths so that others in a similar position to me don’t have the same experience. I think it is always best not to assume. Treat everyone as an equal because we are equals. We are all human. We are born and we live and we die. We need air, food water and love. Assumptions create misunderstanding, distance and anger between people.