My own quiet rage against the machine – thoughts on institutional care 

Content warning: Mental illness, institutions

I am autistic, ADHD and have schizophrenia, generalised anxiety disorder, depression and post-traumatic stress. As a result of this – and other factors –  I have spent almost ten years of the 47 years I have walked the Earth in an institution of one sort or another. I did the sums recently and I must say I was rather surprised. Over 20 per cent of my life has been spent in institutions of varying degrees of malevolence and kindness.

I used to have a lovely psychiatrist called Dr Lean. One time I was talking with him and reflected that if I had been born 30 years earlier, as a person with schizophrenia I would probably have been permanently in an institution for mental health. Dr Lean then said something which chilled me to the bone. He looked at me and slowly said ‘yes. You would have been in the kitchen because you are reliable.’ In that moment I was in that institution in the 1960s. Yenn the author would have been dishing out meals, safe, cared for (if they were lucky) and completely lacking any ability to do the things they loved. Of course for others with schizophrenia and other mental illnesses and also neurodivergences and disabilities they are often denied the opportunity to be engaged in activities which are  meaningful to them even now but the asylum example just shocked me. There was a New Zealand author called Janet Frame who had schizophrenia and was in an institution long-term. This was in the 1950s. Janet Frame found out she had won a literary competition literally days before she was due to get a lobotomy! Thankfully in the light of her authorial prowess they did not go ahead with it but how many people that didn’t write prize-winning novels were damaged and maimed in ‘caring’ institutions? A fair number is my understanding. 

In my own experience I got stuck in institutions. Moving from prison in 1995 to hospital and back to prison and residential mental health care services over five years I now consider ‘lost’. I was very institutionalised especially in prison. There were a few reasons for this. One was that I hated myself and wanted to suffer as much as possible and be as hated as possible (Yes, I changed!) The other was responsibility. I grew accustomed to others doing everything for me – making my decisions, telling me what to do, that sort of thing. I was very unwell and it was easier. The other was the the institution felt somehow safer. I knew all the people, the physical environment, the staff and the routine. I think this is something autistic people can find alluring about institutions particularly. I never needed to decide what to do. It was quite liberating in a way and I admit that when my mental health is misbehaving now I often want to be in hospital because ‘adulting’ is just too hard.

I am not free of the institution even now and I don’t think everything about institutions is bad. I do think some institutions are quite malevolent, particularly in the justice space – and I do think institutions can breed institutionalisation. In the past 21 years I have not been a prisoner thankfully because it is as awful as you might imagine – fearing for your safety every day and being in an environment with people who can be violent and being at the mercy of the staff, some of whom are nice and others not. However since 2001 I have been in a lot of psychiatric hospitals and residential mental health services. When I am really unwell I sometimes find this helpful and sometimes not. Some services and hospitals are better than others. While in the past I wanted to have no choice and control, I now find that removal of control and responsibility in hospital problematic. This depends on how unwell I am and if I am in that border between needing to have choices made for me or  being further along in my recovery and wanting to take charge it is problematic. I also find psychiatric hospital triggers my memories of jail, many of which are very traumatic.

For autistic people institutions can have very little idea both how to support us. Ignorance of autism is a huge issue in mental health settings. I had the parent of an autistic young man contact me a few years ago. The man was in a forensic mental health facility and was not allowed to leave. He had sensory issues in the institution and couldn’t articulate this. Every time he got sensory overload he would have a meltdown. This was interpreted as wilful bad behaviour and his time in the facility would be extended. It was a perfect storm for awfulness and it was simply a lack of understanding of autism and the significant issues in not giving a non-speaker access to appropriate communication devices. As is so often the case the problem could be reasonably easily fixed with a little bit of understanding and listening but often the opposite happens and autistic people and our families suffer due to the ignorance of those who are supposed to be caring for us.

I am actually quite proud of myself for escaping the would of criminal justice settings and long term psychiatric care. With mental health services there is obviously nothing wrong with accessing help and I would encourage it if people need to access it. However I have found myself a lot happier now that I am not actively seeking a way out of having control over my life.  

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