This post has been hanging around in my files for quite a while. I’ve finally got round to posting it.
I spent the first 30 years of my life not knowing I had a learning disability – about 85% of my life at the time of writing this. I was treated like a non-disabled person, I did the same things as non-disabled people, I was a non-disabled person. I didn’t even know I had a comfort zone, and yet I went outside what I would now consider it to be on a semi-regular basis. I didn’t ask anyone’s permission or advice before doing something new, or risky. If I wanted to buy something I couldn’t really afford, I bought it – I didn’t ask anyone’s advice on whether to buy it, I bought it. I thought nothing of walking home alone at night, even when I lived in London.
And then I was diagnosed with high-functioning Asperger’s Syndrome, which is itself at the high-functioning end of the Autism Spectrum of Disorders, and suddenly, things were different. I had to jump through hoops to get state benefits I was entitled to, when before all I had to do was basically turn up at the job centre. I now also had a missing piece to a puzzle that explained why so many things had happened to me the way that they had – why that person had snubbed me, why that girl had refused to go out with me, why nothing ever seemed to go right for me, when others in similar situations had everything go well.
In October 2010, I started going somewhere that dealt with adults with learning disabilities, and theoretically encourages them and tries to get them to at least resemble functioning members of society. However, about halfway throug my time there, I had my eyes opened to the fact that everyone there who wasn’t a staff member had shackles of the mind – except me.
Most of the people there had been aware they were learning disabled since an early age. Consequently, they had spent most of their lives with carers, advocates, social workers and parents telling them what to do and not what to do. Every decision they made had been overseen by someone else, every action they took was with the permission of someone else. They had never left their comfort zones, because they had never been encouraged or allowed to do so. And, as a place where learning disabled people can come and be encouraged to push their boundaries, it’s a good idea. Unfortunately, it doesn’t work like that in practice, and it actually re-inforces the behaviour of getting permission for everything. It doesn’t encourage them to make their own decisions or take risks, it makes them clear everything they do with a parent or care worker first. Even the ones who have or have had a degree of independence – such as living on their own, or being on a national touring production – are still fundamentally treated as children. And none of them are willing or able to make the leap towards true adulthood. They are all constrained by shackles of the mind.
No-one did anything new or non-routine without permission of the staff, or their care worker or parents. Except me.
No-one did anything risky without first talking to someone “normal” first. Except me.
I haven’t asked permission since I was 14, and I don’t intend to start just because I’ve found out I have a learning disability. I am a (mostly) fully capable and functioning adult, and for the few bits where I’m not capable or functioning, I now know to ask advice from my sister or an independent advisor trained to work with people with an ASD. I have evolved coping strategies for those bits – it doesn’t mean I am normal, but I can pass for it with some effort. Some people I know don’t even go that far – they are learning disabled, and since the world has arranged to do most of their thinking for them, they are content to let it. However, there will be times when it’s not possible for a carer or parent to be present, and something goes wrong. I’ve been in the company of some LD people when this has happened to them, and the result was a tearful phonecall to a carer, or a likewise tearful retreat to safe territory, because they cannot cope, and the world has not prepared them to try and cope. I have had to cope since I was born – I may not have made a very good job of it, but at least I don’t break down in tears every time I’m running late and I miss the bus or train. I get angry, and try and find another way of getting there. I don’t ask anyone to find out for me, I don’t panic, and I’ve never broken down into tears. Of course, ten years or so ago, when internet access wasn’t as readily available, and mobiles phones more expensive to use and not as common, I did get myself into situations where I did have to ask someone to find out for me. But at least I got myself into the situation – some people probably wouldn’t even get close to getting into a similar situation without a support worker hovering nearby.
I am an independent adult. I do not have any shackles on my mind. It both depresses and angers me that so many other adults with learning disabilities do have shackles on their minds – it depresses and angers me further that they either do not realise they are there, or that they are unwillling to try and get free of them.