Saturday, 23 February 2013

We Are No-one's Responsibility

We autistics fall through the cracks, when it comes to ‘The System’. We are no-one’s responsibility, there is no agency charged with our care, no Autism Minister in Cabinet, no Department for Autism, no anything – in any country in the world, as far as I am aware (if I am wrong, please correct me!).

To some extent, this is because of our ‘newness’ to the scene, and our not fitting into existing categories whose care has long been the province of one government department or another. Those with mental health problems, for instance, have for centuries been taken care of by various institutions, and more recently by mental health agencies – whether or not the care has been the best is debatable, but nonetheless it has been there, from the days of ‘Bedlam’ (Bethlehem Insane Asylum) onwards.

In much the same way, those with neurological problems, whether genetic (eg Parkinson’s), age-related (eg Alzheimer’s) or acquired (eg brain injury), are the province of scientists and doctors specialising in their conditions, and also (in NZ) the Neurological Foundation. Those with physical disabilities are taken care of by various Disability or Health agencies, as well as in many cases also having well-established associations or foundations, all of which function within the ‘mainstream’ of society, and excite little or no controversy.

We don’t have this. But we nonetheless have our needs, and so there’s a gap[1]. And in this gap two things have flourished –
1) The parent-led autism groups, which range from the reasonably good to the absolutely diabolical. Not naming any names, but we all know who the latter are!
2) The ‘autism industry’, ie all the ‘quacks’, hucksters, ‘cure-peddlers’, scare-mongers and parent-fleecers, basically anyone who is trying to make a buck out of scared and overwhelmed parents.

For the most part, neither of these two groups (as we adults on the spectrum know all too well) want to listen to autistics, or let us participate in any but a token way, or meet our real needs, or even just rethink their stance on autism.

So whose responsibility should we be? Who should take care of us, meet our real needs, advocate for us, make submissions to parliament, etc, etc, for us?

There can be only one answer. We will have to do it for ourselves. There is no-one else that can do the job, no-one with the willingness or the depth of understanding of our needs and viewpoints, no-one else who has the mandate to express our views and agitate or advocate for us.

Yes, I know that it is hard. Very hard. I know that we all have our battles, and that many of us are barely getting by, struggling to stave off job loss or homelessness or daily sensory stress or breakdown of relationships or the hostility of those around them. I know how hard our lives can be, oh how I know!

But we have to do it nonetheless. We really don’t have a choice, given the state of our lives. We need to organise ourselves, formulate our agendas, define our most pressing problems, and make our voices heard – through whatever medium, and in as many ways as possible. Our lives are shitty precisely because we have no voice, our needs are not catered for, we are grossly misunderstood, etc. Anything and everything we do to try to change that has to have a cumulative effect – a bit like chipping away at a brick wall – eventually, it will start to crumble, and then collapse. The wall is our own personal Berlin Wall, behind which we are trapped and silenced, and it’s time for it to come down.

How we go about it will naturally largely depend on the abilities, inclinations and resources of both the individuals and the groups they form. Some of us would be good at, say, writing letters to the Editor of a magazine or newspaper, or writing books, or creating photos, paintings, posters or even movies that will raise public awareness. Others will want to tackle petitions or submissions to government, or public speaking, or research. Or liaise with the media, maybe even convince them to do a ‘TV special’ on us. Yet others will prefer to help in other ways – making banners or placards, raising funds, offering a bed or a meal to advocates/activists from out of town, or organising transport to get to a meeting or presentation. Some will simply get up the courage to speak up and challenge the ignorance of those around them, or to ask for accommodations at work, or for their autistic students or patients. There are many, many ways we can take part, no matter what our circumstances, or level of ‘functioning’. We need to just start from where we are, and see how our role develops. But be assured, we all have one.

Autism ‘Awareness’ Day is coming up in April – I suggest we use that as an opportunity to do something, however small, that will help our cause. That is my challenge to all of you – and I include myself in that too, of course. I would love it if 2013 was the beginning of real change in our lives, both individually and collectively. I know we can do it.

Maybe someday, there will be ‘Ministers for Autism’, government departments whose charge we are, agencies that can truly help us, truly meet our needs. Maybe. But until that day comes (and I’m not holding my breath waiting, given the current economic climate), we are on our own, and we have to do it for ourselves – and for the future generation of autistics coming along behind us.

Be strong, my friends.

[1] In some countries, or parts of countries, we get some, usually grudging, partial support from disability agencies or government departments, which we are often clinging on to by our worn-down fingernails. But on the whole, they don’t really know much about us, or want to, or want to properly cater to us. Some doctors, scientists, psychologists, etc, are doing research on us, but as most of this study takes the ‘pathological’ bias as its starting point (ie they start by assuming our way of being is ‘wrong’, and the NT way ‘right’), it tends to just fuel the autism industry.

1 comment:

  1. I have a couple of feelings on this Penni. As usual, your communication is stellar. I am in complete agreement with what you are saying. Progress is still at a snail's pace. The reason for this, I believe, is that the general population does not see benefit of getting to know us. Therefore, they don't see any point in helping us. We, on the spectrum, unfortunately see most of the people of the world as greedy. Unless we can prove that we have the ability to fatten wallets, those wallet owners see us as useless.

    Drip by drip, information is getting seeped out into the public consciousness. I am hoping that as more people on the spectrum are shown to have great capabilities, as well as human components like compassion, that the tide will turn.

    A collaboration of us older Aspies have been writing articles for an upcoming book on living with Asperger's Syndrome. I have dedicated my life to getting the word out that we are valuable living beings. I would not do that unless I believed it to be true. I can honestly say that you are one of the most intelligent, honest friends I have. I am so proud of you.