'Aspire' are bullying an autistic granny

[Tigger_the_Wing]

'Aspire' are bullying an autistic granny

When I read the above I had flash-backs to the NT SPeaks debacle and AutSqueaks treatment of abscout.

It seems to me that Aspire's greatest worry is that an email from a granny might have led to negative publicity, so they have decided to squash her.

Well, Aspire are obviously ignorant of the Streisand Effect.

I am doing my bit by publicising their heavy-handed tactics on my own blog and on Facebook.

The problem is I'm not exactly the most popular person on the web, so I'm enlisting your help.

If you agree that 'Autism Charities' should be for, rather than against, people on the spectrum, please help me to give Aspire world-wide negative publicity. Then, hopefully, they'll think twice before threatening someone who only wanted the help they were promising.

[hyke]

Copying the content for those who can't access the link.

FreeASDIreland

Saturday, February 20, 2010

Definately not Defamation

I thought I would share with you those portions of a specific private email that have NOT been the subject of demands for apology and retraction under threat of action for defamation. As the solicitor in question made those demands based on the opinion that private email already constituted "publication" there can be no problem with reproducing the parts he raised no objection to here:

***

... Whatever we do, whatever we achieve, Asperger Syndrome is the limit of our world and our expectations…have you ever thought about how that feels? Stupid question, of course you haven’t. Why would you? You couldn’t care less as long as you are milking OUR problem, and OUR disability for what you want.

Still, I cannot help wondering how you would feel being treated as you treat us?

It’s a no-brainer, you would be appalled...

..Downside is, while it is childsplay to push me over the edge ..., it will not be so easy to explain when it is done, think about that.

Because of people like you, exploiting people like me, under the guise of “supporting”, I don’t have a life anyway…and nor do those dearest to me…so what do I have to lose?

Nothing, any way I add it up.

I wish I could even find enough wriggle room to say ”I hope you can sleep at night” but frankly, you would have to have a conscience for that to be a problem, wouldn’t you?

In an ideal word you’d have a “road to Damascus” experience and cry out “Oh my God! What have I done??” but, in the real world, frankly, that is not, exactly, an option, is it?

***

I think that speaks for itself.

I am genuinely terrified of these people and have been for a long time. But I am far more afraid of my own conscience.



Friday, February 19, 2010

The Beginning

What am I doing here, in the small hours, making up my mind about whether to talk to you, or get obliterated drunk, and pass out to escape?

They say "begin at the beginning" but if I did that we'd be here at least a month, before it even began to get interesting.

Maybe I will begin with me?

I am a Grandmother, with a high IQ, a "past", a shedload of baggage, a highly developed sense of honour and an ASD...that is, an Autistic Spectrum Disorder.

All these factors, and few more you may come to know in time, leave me living my life in fear, mostly of my own species, who appear to me, on a deep, visceral level, like potentially hostile aliens I can never hope to understand, or be understood by, and the day my future options finally run out, that has come much too close, so very, often.

But that doesn't mean I don't care, far from it, I care very much indeed, most particularly that no-one else should ever be marginalised, alienated, and plain old fashioned "let down" the way that I have been for more than half a century.

In smaller, everyday ways, I recognise in myself a reflex to try and make others feel better and happier, if I can, which means it is torture for me to know that people are often uncomfortable with me, without any way of knowing exactly when, how much, or how to fix that.

I never stopped trying to find some kind of real help to be able to deal with all that, support myself, buy my own home, and maybe even learn what it is to love and be loved...but there is no help out there, and every suggestion that there is turned out to be cruelly empty, or worse, cynically exploitative.

I won't bore you with the details now, but the evidence of my own eyes and senses makes me want to stand on top of my mountain and rail at the heavens...not on account of my life, I was raised to believe my own life was insignificant and undeserving of consideration, and early conditioning cuts deep, whatever you may come to know intellectually...but rather on account of the young people, like me, and yet so different and individual, who are coming after me into exactly the same graveyard for all hope and potential just because, like me, they are autistic.

I WANT to do something to change that, and feel an obligation to, but I honestly do not know how, not in any real, and lasting way. All I can do is tell the truth I have learned from hard, bitter, experience, about how useless, misguided, detrimental, and even morally bankrupt some of the support services on offer to people with autism, and their families, actually are.

I didn't learn this overnight. I was full of hope (and the legendary Aspie gullibility) in the beginning. I really BELIEVED that all these people who offered to, would really help me to find a career I could handle, advocacy to trust and turn to for the many, simple, everyday things I just cannot handle for myself, and a gateway from a terrifying existence into something like a real life that I could wake up and look forward to, at least, some, days.

The cruel, empty, reality behind the, apparently, generous claims to support and assist dawned bitterly and painfully and buried just about every last hope I ever had.

Yesterday something happened that may well change my life for ever.

Out of the blue I received two solicitors' letters demanding urgent response (despite being postmarked three weeks later than the date of writing, which struck me as rather preposterous).

These letters demand that I retract, my, privately expressed, scrupulously honest, frustrations, fear and disgust with Aspire, the self styled Asperger Association of Ireland and apologise for them, under threat of legal action that will also seek to suppress any further honest statements of my experiences and opinions.

One of the letters also demands that I do not communicate with anyone, without context or qualification, but the writer of the letters (which seems quite bizarre...did he seriously think I could be denied the right to seek any advice?)

I suspect a good solicitor and barrister could drive a whole division of panzer tanks, as well as a herd of elephants, through the holes in that, but Aspire, and their solicitor know, full well that there is no hope of me being able to afford even a solicitor.

As one menopausal Aspie, who can hardly get it together to get through most days, has significantly impaired concentration (you wait till YOU hit menopause and watch your own head become swiss cheese for the duration even if you are not autistic!), and who is under severe stress the minute she is with people, even enjoying herself in good company...with no alternative but annoy the daylights out of any judge in question by representing myself...well, the expression "hasn't got a prayer" springs to mind.

There is just one tiny problem. After all I have seen, all I know, and all this particular organisation has been prepared to put me through (without ever being prepared to spend a tenth of the resources and energy on helping and supporting me, or anyone like me, even in desperate circumstances) I Iiterally could not force myself to comply with the demands of these letters, even for forms sake. It surprises me just how impossible that would be, now I come to it. All of my life I would have told anyone else in a similar situation to tell 'em whatever they wanted to hear, but keep the fingers crossed behind the back, but faced with this, I cannot do that, and worse, I could not live with doing it afterwards.

Usually letters like this are just bluff, but I have a feeling, in this case, Aspire will follow through.

On one hand this is not wholly bad news, because, if they do, it will mean that they feel I represent a threat to their agenda that seems to consist solely of harvesting grants and donations by presuming to define us and speak for us without consulting, let alone showing a shred of respect for, us, and claiming to support us without offering us one, single useful service.

But on the other hand, it is very bad news for me personally, because, without the resources for proper legal representation I have to face the reality that I probably cannot win, and, that being so, sooner or later I will probably have to spend some time in prison because I know already that enabling an organisation like this even with silence, rather than the lies they demand, is something I could never do, or live with, whatever the threat.

I really cannot tolerate people for more than a few hours a week, being trapped among them, or even near to them, like in a prison, is something I fear more than dying, but, for me, if it comes to it, there will be no alternative.

I can only hope that if it does come to that, people will respect my integrity enough to make it bearable.

Over the next few days I am going to be making arrangements to ensure that, if it does come to the worst, at least my two little dogs (who are honestly like part of me, however silly that sounds) will be ok, and hopefully my home and sanctuary will still be here for me when I get out.

My only consolation is that whatever happens, will raise serious questions that desperately need raising about the quality, integrity, and accountability of services for autistics and their families in this country, and after that, those services will be considerably improved.

I'm going to start the ball rolling by raising the first question myself:

As an organisation that claims that their mission is to support adults with Asperger Syndrome, why have Aspire never shown the slightest interest, let alone concern, that there are adults with autism who are familiar with them and their services and hold an unreservedly negative opinion of both?

I may only be an Aspie, but even I know that anyone who really cares about something is constantly concerned with ensuring that they are not doing any harm. Aspire seem totally indifferent to that possibility, choosing, for preference, to intimidate any criticism into silence.

PS. Two wrongs do not make a right, so the solicitor in question will receive a prompt and urgent response by registered letter, probably on tuesday. Not to give too much away, but it contains (along with a little friendly advice on the prompt posting of urgent questions) the well known phrase "see you in court".

[Tigger_the_Wing]

Thanks, Hyke!

[hyke]

Some links for those who want to read more:

On I2:

I am under threat of....

You can find lots of information and links on this thread.



On WP:

Equality tribunal, Dublin juli 2009



And on AFF:

Another 'Autism Association' is a bully



Want to ask all of you to spread what is happening here.


Tig's Blog is good to read too

[Toad]

has anyone got this on aff or I2 yet? if not I will later... Tig and Hyke - permission to copy your posts over?

[hyke]

Snap.

Yes they are there.

Thank you Toad.

Oh, and you sure have my permission if you want to spread it elsewhere.

Did not see a thread on ASDGestalt yet. But will now focus on my family life for a while.

[hyke]

It's intriguing to see that Aspire has a section on human rights for Aspergers/HFA. Have not read into that yet, but it is intriguing in this light I think.