I am Beautiful, I am Powerful, I am Bethany

I fell over the story of Bethany – let me give you an idea.

A teen with autism is locked in solitary confinement and being fed through a hatch. Have we really moved on from Bedlam?

Once upon a time my activism was confined to Autism and at another time to institutional abuse because I have so much experience of both so I followed the story up, and the more I followed it up the more I identified with Bethany – where to start?

In many ways, back in the early 1970s I WAS Bethany and came close to a similar fate more than once.

Many people know I was in Duncroft, few realise that for the last 4 months I was in solitary confinement – at my own insistence. It was all I could tolerate there. I do not need to control other people, to the contrary, the idea repels me. That is why I will tell you what is true to the extent that I know it, but I will never tell you what to think about it. Either you believe and/or agree with me about the facts or you don’t, but after that you are on your own when it come to the impact of those facts on your opinion. What I cannot tolerate is anyone having control or influence over me in any personal, subjective sense.

What does that mean?

Any impact on my personal space sends me into meltdown with no break point.

I find it incredibly hard to stand having anyone in my house. Only one person visits here and it took at least 10 years to adapt to that. It took me 12 years and a broken leg to adapt to my GP enough to visit the surgery at will and without trauma (and she is a lovely lady with a great sense of humour, there are plenty of GPs I could never have adapted to at all). In terms of Duncroft I could not handle my life being controlled by the needs and demands of others as well as being totally unable to work out intellectually how to relate to so many people at once because my autism left me with no intuitive or reflexive social skills at all.

I absconded at Whitsun, was caught, put into the isolation unit (which was procedure) and couldn’t make myself come out again. When I was forced out into the general population months later by a shortage of isolation places I played the right part as best I could for a few hours then started to scream and just couldn’t stop until I was allowed to sleep alone in the corridor. I found a way to abscond within 3 hours of getting up. Problem solved.

There are two main reasons for the differences between Bethany and myself:

  • I was born into an emotionally absent and abusive family where it was not safe to learn to trust anyone in any normal range. As a result I grew up without any sense of personal entitlement or aspiration at all. I have never felt I had the right to object to anything that only harms me, I run, hide and cannot return instead. I have never even grasped how to identify what I want and need. If I tried to assert myself I wouldn’t even have a clue *what* to assert, let alone how to assert it. On the other hand, when others are threatened or harmed I can raise Cain and make demons run without hesitation. I am conditoned all the way to the marrow to respect and assert the rights of others without any sense of having rights of my own. If I am caught in a situation I cannot tolerate I will melt down and fight like a rat in a trap on blind instinct.
  • I have an IQ in the “gifted” range, most of which has been deployed on keeping me alive and out of situations I cannot tolerate for the past 60 years. Not only do I run and hide from triggers, I am exceptionally good at seeing them coming, working out how to do that and how to work round the difficulties this entails.

Sometimes I have been able to play a part and get through an intolerable situation that I know will only last a few days or hours, but the stress and distress is unbearable, the trauma is huge and recovery when I can isolate again can take weeks. As I get older this has got much worse.

Perversely, if I had been raised with love and confidence I probably would have wound up in a similar situation to Bethany. That doesn’t mean I am better off in the long term, because what I do have has never resembled a life and never will. The flip side of being unable to identify and assert my needs and wants is that everything and everyone that really matters to me is automatically sacrificed to my survival.

When old age and infirmity make it impossible for me to isolate euthanasia will be my only humane option. Chronic Fatigue Syndrome has hastened that dramatically and I reckon I probably have about 5 years left. Don’t get the idea I am blase about that, my fear of taking that final decision has been the only thing that kept me alive for decades, it is a terrifying prospect, and it always was, but when I can no longer isolate the alternative will have become even more terrifying.

I can state without hesitation that it would be better for me if I had never been born and failing that, if, when my heart stopped after a deliberate overdose in November 1973 the ER team had let nature take it’s course.

I am not looking for sympathy for me, what would I do with it? I had to share this with the only person I really find comfort in earlier just to feel safe enough to cry about it, so I could start coming to terms with it and making sense of it. I have said this before as an abstract, but now I have realised it, I cannot qualify as human in all the ways that matter, and never had a hope of love, friendship, family or community…not just because people are hostile to me, or repelled by me, though they often are, but because *I* am, and always have been, too deeply disabled to be able to take the required steps towards, or function as, part of love, friendship, family or community.

Whatever else I have to say here, let’s get Bethany out of the cell to a better place than the one I have lived 60 years in.

I can’t find words to tell you how bleak it feels to face my own reality this way. It’s like looking out over a flat dry desert and knowing you will die there.

…and then I found something that gave it all meaning…

Crash: What went wrong at Winterbourne View? Journal of Intellectual Disabilities, Editorial,  August 13 2012

You are never to be beautiful and certainly must not become powerful.

I realised the objective of most of my interactive life, the parts you can see here, the parts you can google, the parts that vanished or happened offline and long ago has been to blow that sentence to kingdom come.

Often I have failed abysmally, but there have definitely been days when I have been beautiful and powerful despite everything…

…the trick is to remember that I am also Bethany, and all the others like her…

More that may be relevant:

A rare attempt at constructive solutions: