Friday, 25 November 2016

The Autistic Collective - Please Join Our Mailing List!


I wrote a little while ago on how I’m going to ‘step up’ and be more of an active autistic advocate. As part of this, several others and I formed a group we have named The Autistic Collective. We did this in order to pool our talents, skills and ideas, maximise our individual efforts, and facilitate the co-ordination of whichever campaigns we are involved in.

Now, this level of autism advocacy is not for everyone. Yet many would like to do something, no matter how small. So we have started a mailing list, which anyone anywhere in the world can join. The idea is that whenever we have a campaign going where numbers count, we will send people on the list an email detailing what we’d like them to do, typically just an email or letter to whoever, this could be a politician, a government department or agency, the press, or anyone else we are targeting. It’s then up to you to decide whether you want to participate or not. We can do draft letters for you if you’re struggling with what to say, or you can write your own.

And when I said anyone anywhere in the world can join, I meant exactly that. You can join as an autistic member or an associate member (ie a non-autistic ally), either of which can be in New Zealand or outside it – sometimes pressure from overseas can achieve things where solely internal campaigns don’t. I know from past efforts in this direction, that governments, for instance, do take note of communications from overseas.

There is strength in numbers, and this is something anyone can do, that may help swing the balance, where a small group could be ignored. So we are urging anyone who agrees with the aims of the Collective, to join our mailing list!

The aims of the Collective, and more information about it, plus the form to fill in to join our list, can be found on the Collective’s website, at www.autisticcollectivenz.org

We also have a Facebook page for the group, at https://www.facebook.com/Autistic-Collective-NZ

Hope you can join us!

My Blog Now Has Its Own Facebook Page!


For those of you who don’t follow me on Facebook, just letting you know that my blog now has its own Facebook page! I will post links to my latest blog posts on there, plus occasionally a link to the blogs of others that I especially like, and anything else which I find interesting, and hope that you will too!


Enjoy!

Saturday, 19 November 2016

#autismpositive


It occurred to me that, with NT allies of autistic people getting together more and more, and with many parents starting to adopt the autism-positive approach to their autistic children, that it would be a good idea if there was a simple way for such people to find each other online. We autistics could also do with a simple way of identifying those who are our allies – and, sometimes, of finding each other, when we are new to the autistic community, especially online.

So I got the idea of the hashtag #autismpositive. It’s a simple thing that people can add to their blog or forum description or subject line, their Facebook group description or a pinned post in the group (probably best not in a regular post, as it will tend to get buried down the page in time). Or you could add it to the descriptive stuff on your own social media page perhaps. It seems to me that there are many ways it could be used, to identify other autism-positive types.

If you’re not sure what being autism-positive means, exactly, I defined it here in a recent blog post. It’s exactly what it says – someone who takes a positive and accepting approach to autism, rather than talking of curing, ‘defeating’ or ‘fighting’ autism, and other such negativity.

Anyway, hope you like the idea.

Friday, 18 November 2016

I'm Tired of People Defining Me


I’m tired of people trying to define me. My whole life, people have been telling me who and what I am, how I should act or react, and how I should live my life.

It started very young. When I complained about bright lights or strong smells or loud noises, they told me “it’s not that bad”, and I should “stop being such a whinger”. When I was a teenager, I was told I “shouldn’t be so anti-social”, and I should “just make friends”, as though this was easy. If I tried to say I couldn’t do something, I was told that “of course” I could do it, and that I was just being “unco-operative”.

If I wore certain clothes that I felt comfortable in, I was either ridiculed or pressured into wearing more “fashionable” clothes. I was told that my behaviour was “rude” and “un-ladylike”, and that I must be “nicer” to people, especially men. Later, after I became a feminist and came out, a different bunch of women let me know I was expected to be a “right-on-sister” instead - a different set of expectations, but no let-up.

My differences were cast as personal flaws or deficiencies, and I was told that I just needed to “try harder”. They would tell me to “just relax” and “be myself”, but when I did, they said “not like THAT!” If I expressed my real feelings or thoughts, people told me I was weird, or that “nobody” felt like that, and that I needed to “shape up my ideas” or “get real”. Or they would tell me I “must” feel such-and-such, or have this or that neurosis, because of my behaviour or attitudes. I was told I should “speak up more”, or that I was talking too much and should let others have a turn. I was “too quiet” or “too loud”, “unfriendly” or “clingy” or “nosy”, and on and on. No-one, it seemed, was quite content with me, no matter what I did.

My (now-ex!) partner would oh-so-confidently explain to me what I “really” felt. Or that what I felt “wasn’t normal”, that it was symptomatic of all that was wrong with me, and that if only I listened to her and did what she told me to do, and became what she told me to be, all would be well. She told me exactly what sort of person I was, and what my faults were, in great detail. According to her, I was a terrible lover, a lousy friend, a bad mother and, she implied, deficient even as a human being.

When I became ill, some thought I was “just being lazy”, or a “piker”. Even when I finally got diagnosed with Chronic Fatigue Syndrome, it didn’t stop. There was the alternative healer who told someone else that it was a “pity” I’d been diagnosed, implying I’d use it as an “excuse” to “wallow” in my illness. And the counsellor who asked one day why didn’t I “just go for a run round the block?” This same counsellor also once spent almost an entire session ripping into me for being on a benefit. It became obvious she had a low opinion of beneficiaries, and me for being one.

Even those who accepted the diagnosis and meant well, would tell me I needed to “just take this seawater solution”, or do this or that pet therapy of theirs, or some other “miracle” cure, or “just think positively”. Or that the vitamins I was taking were “just expensive pee”, always without asking me what worked for me.

And then I discovered Asperger's and autism, and oh look, another lot of definitions. The ‘experts’ solemnly pronounced me incapable of empathy, of having emotions, of understanding others or even myself, of being able to relate to others or be a good parent, etc, etc, etc. It seemed that, once again, I was a deficient creature, barely even a human being, in the eyes of others who had never even met me.

Being autistic and physically disabled aren’t the only things about me which others have used to try and define me of course. Religions have tried to reduce my innate sexuality to a mere “lifestyle choice”, and tell me that I’m a “sinner”, and even claim, as one NZ religious leader has, that gays cause earthquakes (no, I’m not kidding).

Men have tried to ‘mansplain’ things to me, told me I “should smile more”, or suggested I “don’t understand” how the world works. Able-bodied people have tried to ‘able-splain’, in the same patronising fashion, without bothering to find out first what I actually already know or don’t know. Or they’ve treated me as if I was mentally deficient, again without bothering to find out anything about me.

Sometimes even other autistics don’t understand me, their image of me seems to be incomplete, or even totally wrong, like the one who told me I was a “man-hater”, when I challenged his sexism. It never seems to end.

But my feeling now is – NO.

NO.

Enough.

I’ve had enough of this. I refuse to allow my life, my very self, to be defined by anyone else, ever again. I am what I am, and that’s good enough for me. And it’s just going to have to be good enough for the world too.

Everyone has their bottom line, the point beyond which they won’t and can’t go, and this is mine.

I don’t mean I’m going to go around wildly starting arguments or pushing anything on anyone. I do mean I will stand my ground, and no longer allow others to define me, to tell me what I am or should be or how I should live my life. I will back off, but I won’t back down.

This is me. The real me, as defined by me. Get used to it.