Two years too long

I try not to let things get to me. I have a tendency towards strong emotional responses when faced with unfairness, injustice or blatant prejudice, regardless of whether it’s directed at me or others. I try to put that in a box. Unless I can take action to change the situation, I do my best to ignore realities that hurt me to feel. But still, every so often, something will set me on fire.

I saw this, from the NAS:

And it made me SCARY mad.

I’ll never forget the night I realised I was autistic. I was walking home from a concert I’d cried all the way through, with the friend that had kept quiet all that time. We walked three miles in the middle of the night because I said I couldn’t face the bus. I dropped a line about probably being “a little bit autistic”. And he said, “yeah”.

I got home and looked it up on the internet. Luckily I found the National Autistic Society, rather than anything more sinister. But still, it was about 2 weeks before I could really stop crying.

The concert was on a Friday. I spent half the night reading up on autism – seeing myself everywhere, my face reflected in the little things. I read about how to go about getting a diagnosis: what to tell the doctor and how to prepare. I made notes, volumes of notes, about how I fit the criteria. I wrote constantly. I cried, on and off. I slept in between.

There were people who scraped me up off the floor during that time. They could be on the phone, made sure that I ate. They came over when I needed them. Although I hadn’t even known myself before – I didn’t know how to be a friend – they were there for me. They were friends, good friends, even though I wasn’t. I didn’t deserve them, and I was so, so lucky I had them. They probably saved my life. But that’s not what this story is about.

I went to my GP the following Monday. I sat in the waiting room for an hour, holding everything in. Before I knew it didn’t matter if I rocked, it couldn’t hurt anyone, I held myself rigid. I clutched the printout I’d made: a bullet-pointed list under each criterion. I took it in with me, and burst into tears.

My GP was great. She took the printout to read. She didn’t let it faze her that I cried, that I was strangely calm and coherent while I cried. She took me seriously, and told me she didn’t know what the procedure was, but could she phone me. Then she phoned me that night after work, and said there was a form for referral. Since I knew myself best, would I like to fill it in and send it back to her? A couple of weeks later I got the letter from the NHS saying the waiting list was long, but I was on it. And things went quiet.

It was well over a year before I heard from them again. The diagnostic service was amazing. They treated me with compete dignity and lack of fuss, accommodated my anxieties as a matter of course, and gave me all the right information to feel comfortable. They knew what I needed without me even having to ask! But by the time I had an NHS diagnosis, bringing with it precious access to the local autism support group, it had been almost 18 months.

Two years is too long.

In the meantime, I’d been lucky. Incredibly, impossibly lucky. I was able to get funding for a private diagnosis. Within six months of everything falling apart, I had official recognition. I had documents that entitled me to support at work. I had access to some limited expertise. No longer stranded, with this glimmer of a safety net, I could begin to build from scratch for myself an identity that was real. Yet for those six months, I had nothing. I was nothing.

I kept my job. I kept my house and my car. My family supported me. The people around me, although they never knew it, kept me from suicide. I was given time and space to recover. I built a shell, a hollow of myself – and it somehow held. For six months. I would not have survived for two years.

Two years is too long.

My GP did everything right – more than right. She listened to me, read what I’d written, realised I knew what I was talking about, and made it easy for me. Not everyone has it that easy.

I have friends, now, seeking diagnoses. People I care about, stranded and struggling. You can’t hope to get a referral unless you’re struggling. One’s GP flat out says she can’t make a referral. Another can’t even get a face-to-face appointment with the GP: only a phone consultation. I couldn’t have had that conversation over the phone – how can they? Of course: they can’t. I walked into my GP surgery and had a referral within two weeks. They’ve been fighting these barriers for months. And that’s before the clock even starts.

Two years is too long.

This isn’t a political campaign from the NAS, in the sense that they’re supporting any one particular party, but it’s the first campaign that’s ever really hit me. If you’re in the UK: register to vote; then do. I’ll vote. It’s small. It’s all we can do.

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Hate

I get most of my news off the radio. So it was on Sunday morning, over breakfast, that I heard about the mass shooting at an LBGT nightclub in Orlando, Florida, USA.

The obvious explanation that sprung immediately to mind was that this was a hate crime. A horrible attack on gay people, in a deeply Christian culture that quietly tolerates the intolerance of any relationship not strictly classed as heterosexual. A clear, stomach-churning example of the way that quietly letting everyday injustices pass can nurture the attitudes that eventually lead to such brutal, horrific acts of violence.

The reporting journalist, however, had other ideas. I was shocked a second time by the rushed inevitability of her quick and eager report: that no, there was as yet no conclusive evidence on whether or not this was an act of Islamic terrorism.

No acknowledgement of any alternative motivation. No mention, beyond the nightclub’s identity, of the LGBT connection, or even the possibility of a hate crime. Muslims are so inherently violent, it seems, Islamic terrorism so rife, as to be simply assumed. The first person I heard to intimate that homophobia might have motivated the attack, later on in the afternoon news, was the gunman’s father. The media, however, denied the issue, or were silent.

How elegantly the marginalisation of two separately stigmatised groups is reinforced. How subtly the discrimination that LBGT people experience throughout the Western world is trivialised. How neatly the blame is shifted onto another culture, another religion, another type of person. Someone else. Not like us. That could never happen here.

Except that it does happen here. It happens every day. I remember the case fought and won by a gay couple who were refused entry by the Christian owners of a B&B. Yet even winning that case couldn’t suppress media coverage disgustingly sympathetic to the guilty, and has not stopped other bigots considering it acceptable to repeat the offence. Closer to home, I’ve seen my own gay friends being subject to derogatory street abuse by an elderly white man, in all other respects the picture of stately gentility, making his steady way towards the corner shop. These aren’t the isolated acts of terrorist radicals. These are the everyday aggressions perpetuated by “respectable people”. The people we worship with in church. Our neighbours. The people who live next door.

I’m not for a moment implying that the majority of people would take an assault rifle into a nightclub and gun down over a hundred people. It doesn’t matter. The majority of LBGT people didn’t die in that assault. That doesn’t make this any less the expression of a hatred many in our society still choose to accept. That doesn’t take away the fact that somebody singled out those hundred people, of whom at least fifty have died, specifically because they were part of the LBGT community. That doesn’t make this any less their pain.

Why is it so hard to acknowledge others’ pain? Why do we struggle so much, collectively, to empathise with perspectives different from our own? Is it because we feel ashamed? Is it because we know, deep down, that we are a part of the society that collectively accepts the discrimination and tacit oppression of anyone different from ourselves? Does it feel safer to express outrage at anti-gay laws in Uganda, the very strength of our indignation protesting the alienness of it all – as if somehow this abuse were confined to strange foreign lands, separated from us by thousands of miles, instead of happening right outside our doors?

We need to be able to accept the pain of others. We need to acknowlege their suffering. We need to validate their fear. Even if there is nothing more we can do, no support we can offer, we cannot but take that first step, and stand beside them.

Updated: because this atrocity isn’t mine to own. These are the posts you should really be reading:

Wasted words

In my last post I talked about some of the things I wished my neurotypical peers could understand and accept about me. The post was intentionally light-hearted, but it reflects an intense desire on my part: the wish that people around me could occasionally see past my “unusual” behaviours, listen to what I have to say, and maybe even catch a glimpse of the person I really am. From what I’ve read, this is a dream shared by many autistic people.

But communication goes both ways. I written before about things I do automatically that might seem rude or hurtful to a non-autistic person. These “odd” behaviours are documented throughout the autism literature, always as negatives or in mildly pitying terms. Officially, they’re encompassed in the triad of impairments – since the majority retains the right to define what is “normal” and what is an impediment. What seems to be less well understood, though, is how rude and hurtful some of the non-autistic social behaviours can be when seen from an autistic perspective.

A thousand examples spring to mind. Lying, for example. The amount of non-autistic communication that’s made up of lies and half-truths just staggers me. How is it not the most offensive thing in the world to be constantly lying to someone? And how are autistics not in constant demand as literally the most honest and trustworthy people in the world? But I’ll leave that for another day.

My current beef with neurotypical interaction is something they call “throw-away remarks”. These are words or phrases that people say which they claim, apparently with complete sincerity, don’t mean anything. Just words. And this I do not understand.

Perhaps it is part of my “deficiency” in small-talk – another form of indirect communication through words that mean little or nothing in themselves. But there is a subtle difference between small-talk and throw-away remarks. Small-talk, taken in context and together with other information, is the padding that supports neurotypical communication and relationships. Throw-away remarks on the other hand, as far as I am told, are only there to fill the silence. The difference in subject matter, I suppose, is just an unfortunate coincidence.

You see, I am not wasteful with words. So when I am described as rude or insensitive, it happens in very specific types of circumstance. Most often it’s in association with an idea I’ve analysed critically, which someone takes as an insult to their intelligence or authority. Sometimes it’s because I’m barrelling on with a monologue or directing the conversation, not recognising that another person is uncomfortable or trying to make a different point. Even asking a question too directly can cause some people to take offence. Making personal judgements, however, is not in my nature, and when I cause offence, it is never because I have made a personal remark that is derogatory towards another individual (joking aside – I can banter as well as the next man!). In what is claimed are “throw-away remarks”, this sort of personal judgement is commonplace.

From my perspective, the difficulty with these offhand phrases is that they do have meaning. It may not be conscious, but the words that people throw out in those careless moments reflect quite starkly their underlying biases and prejudices. In a world which it seems is almost constant in the practise of deceit, those little words are in themselves a window to the soul. And what an ugly thing it seems to be.

I encounter this behaviour with something between amusement and pain. Obviously when someone makes an offhand personal comment about me – particularly about any “work-related social skills” – it can be deeply upsetting. But honestly? I am perplexed. It is faintly ridiculous to me that, in a world that ties itself in such terrible knots about tone of voice and conversational balance, someone actually saying direct, meaningful words that are blatantly prejudiced and offensive can brush them off with an “oh, it was just a throw-away remark – it didn’t mean anything” – and that that’s totally OK! It’s accepted. Those are the social rules.

I just cannot get to grips with this concept. Why would you use those words if you didn’t mean them? Since the only person who gets hurt by my being offended is me, I do try not to take this behaviour personally. But still.

All words have impact. And there are times when I would dearly love to say to these people: if you can’t take responsibility for the consequences of your wasted words, then maybe you should learn to enjoy the silence.

This world we live in

I’ve been a bit sick this week, so instead of actually doing anything I’ve been mostly curled up on my sofa reading the internet. A lot of what I’ve read makes me sad; some of it makes me horribly, guiltily grateful. And that makes me angry.

For example: this guy I’ve been reading for a while. He has a son with Down syndrome, and he writes a lot about how we could and should do better for disabled people in our societies. One of his older pieces, which is linked from the post above, talks about how a “cult of compliance” discriminates against and allows the abuse of children with disabilities, and in particular seems to be used against children who are not white.

Another post that turned my stomach was something that came to me through Facebook. I’ve never read this woman’s writing before. She tells a story about a college student in a dangerous situation, whom she and her friends tried to remove to a place of safety; but every authority they encountered was more interested in rebuking the girl for drinking than in keeping her safe. In fact, the only option they gave her was to go back to the place where she’d been about to be raped.

So once again in my life, I find myself thankful. I am thankful that I was born white, in a Western country where to be any other colour, it seems, is to be presumed guilty until proven innocent. I am thankful I was not diagnosed autistic in childhood, despite the help and supports I might have accessed, for fear of the stigma and abuse (intentional or otherwise) that could well have come with them. I am thankful, God help me, that I am not pretty enough to be a desirable target for rape.

What sort of a world do we live in that any child (or adult, for that matter), particularly one made vulnerable by disability, should fear for their safety because of the colour of their skin? What sort of society hides its disabled children away and physically abuses them for being unable to comply with certain commands? Why is it OK that a pretty woman can’t just enjoy being pretty without fearing the consequences?

I should not be grateful that I have not encountered those things – not through any virtue of my own, but through an accident of birth. I am angry that others have, and do, and will continue every day to suffer through the accidents of theirs.

How can we live in this world?