Benefits Update

A full 16 months after I applied for ESA, I’ve finally got an answer. I’ve been put in the Support Group which basically means that I don’t have to work or seek work because I am too ill and disabled to be reasonably expected to try to find work that I can feasibly do and employers willing to make the many, many adjustments that would be required to make that work accessible to me. After literal years* of financial insecurity due to disability and ill health (including times when I had no money of my own) I finally have something resembling security – money to replace the employment I cannot be reasonably expected to seek or find until and unless I get much less ill (unlikely to happen as my physical illness is chronic and incurable and my mental illnesses are chronic and not responding all that well to treatment) or society gets MUCH, MUCH less disablist and much, much more inclusive and accessible (more likely to happen but still years away). I view it as somewhat akin to compensation – money to live off in recognition that between my body and the society I live in paid job opportunities for me will be close to non-existent but I still deserve to live a good life.

So, what now?
I’ve bought quite a few things lately that I’ve not been able to afford for a very long time – a mobile phone that actually works, a winter coat, new shoes, a Blue Badge and a Disabled Person’s Railcard. It feels odd both to have these things and to know that I can buy such things without worrying about whether I can also afford to pay my rent. This security is unfamiliar to me, I find myself still acutely aware of when each payment is due to come in and when my rent and direct debits are due to go out.

As I don’t need to look for or get a job, I’ll have a lot of free time. I’ll definitely be blogging and I’ve got some great ideas for posts lined up. I’m trying to get back into reading regularly and I want to write more fiction. In fact, I have the slightly ambitious aim of writing the first draft of a novel this year (I’ve written novels before but not since my teens). I’m also looking for very, very part-time volunteer activities in Manchester feel free to contact me if you’ve got an opening you think I could fill 🙂

In the medium term, I’m on a few NHS waiting lists to hopefully get some treatment for my my mental illnesses. I don’t expect to be “cured” but there’s a lot of scope for improvements in managing my illnesses and maybe even reducing my symptoms. A man can hope, right? Learning how to make a phone call without breaking from fear and panic, for example, would greatly improve my life and it’s a goal that is ambitious but (I hope) achievable.

Even longer term, I want to be a parent. I’m hoping to be on the adoption register as a potential adopter before I’m thirty. In order to get there, I’m going to need a few things I don’t have yet: a permanent home with at least one spare bedroom, more local friends than I have now, possibly a wheelchair and/or a service dog. I’m not hugely sure how to go about getting these things sorted but not having to worry too much about continuing to afford to eat and pay rent frees up a lot of time and energy for planning the little steps to the bigger goals. And I know what my big goal is: to be a good parent to at least one someone who didn’t get a great start in life.

So, that’s where I am. Right now I’m still pretty poor compared to most people but I don’t have to worry too much about it any more cos (for now at least) I know that I will have a regular income and that my rent will be paid. This means I can concentrate on other things. Which is something I’ve not been able to do for a long, long while.

*I’ve been trying to apply for DLA / PIP and ESA since 2011, the present year is 2015.

When Phobias aren’t Phobias

It’s been awhile since I did an autism focussed post and recent conversations have made me think pretty hard about something. About my childhood phobias that weren’t and aren’t phobias at all.

As a child, I was afraid of animals. And insects. And people. And the vacuum cleaner.
As an adult, I am afraid of… most animals, most insects, new people. And, yes, the vacuum cleaner.
These aren’t phobias. Phobias are irrational fears of things which cannot hurt you. I have a phobia of heights but my fear of, say, chickens isn’t a phobia because it’s a rational aversion to something that can and has hurt me.
What’s this got to do with autism? The reason my fear and avoidance is rational but looks irrational is based in my neurology. What I am afraid that animals and insects and people will do to me is touch me. Some textures hurt – especially when I’m unprepared for them. What else I am afraid the vacuum cleaner, insects, animals and people will do? I’m afraid that they’ll make noises at me. Some noises hurt me. Noises and textures that don’t bother my neurotypical peers are EXTREMELY distressing and/or painful for me. 

Add to this that I took many, many years longer than my typically developing peers to get a basic grasp of human body language and have only very, very recently come up with working models for cat and dog body language. I essentially spent my childhood surrounded by things whose behaviour seemed inherently unpredictable which were prone to nonconsensuallly touching me, suddenly making noises at me and moving in and out of my limited range of vision at what genuinely appeared to me to be random. Avoiding any and all people and animals I did not know looks like a perfectly understandable reaction in hindsight.

I now have the vocabulary and knowledge to articulate to myself and others that I’m not scared of spiders so much as I’m afraid that they’ll walk on me, I’m not afraid of flies but will have a meltdown if a buzzing one is in the same room as me etc. I couldn’t articulate this as a child because I’ve had these sensory sensitivities since long before I could speak. They hadn’t yet developed into fears and aversions but what happened when I cried in pain from a noise or texture that wouldn’t hurt neurotypical people? The neurotypical adults around me understandably misinterpreted my cries as fear and reacted by trying to reassure me that “Flies / puppies / vacuum cleaners can’t hurt you. It’s okay. Don’t be scared”. So when I later was able to speak, how did I describe what was happening? I used their words back at them and said “I’m scared of flies”.

Flies can hurt me. They do. They have done my whole life. It hurts when they walk on my arms and when they buzz. It’s perfectly rational for me to be afraid of things that hurt me.

Through learning how to predict the behaviour of dogs, cats and other pets, I’m no longer scared of them. People, I can sort-of understand and at least they usually back off if I yell loudly at them for touching me. Insects I can live with if they’re quiet.

And vacuum cleaners? I still can’t be in the same room as one in use. And that’s okay.