Tuesday, 27 February 2018

I'm Tired Of Health 'Advice'

Most of you will know that I’m not only autistic, but have CFS as well. This means that, like other disabled people, I’m prone to receiving unwanted and generally useless advice from just about anybody I might encounter, of the ‘have-you-tried-this-weird-cure’ type. I say ‘useless’, because if it really did cure our disability, we’d already have done it. And I say ‘weird’, because a lot of the suggestions fall into the outright woo category. (‘Light therapy’, anyone? Drinking seawater? No?) I’m not the only one fed up with this – I’ve seen some brilliant memes lately on Facebook by disabled people on the same subject.

I honestly find it pretty insulting. There’s an assumption implicit in their eagerness to ‘help’, that we really don’t have the intelligence to think of these things for ourselves, or that we’re somehow too lazy and/or ‘invested in staying sick’ to ‘really try’ to get better. It doesn’t seem to occur to them that we might already have tried everything we can afford (plus a few things we really can’t) to ‘fix’ ourselves - including at least some of the woo-type stuff, because why not, when we’re feeling desperate? And the longer we’ve had the condition (in my case, over thirty years), the more likely it is that yes, we’ve tried that, and that, and THAT, and umpteen different other things as well. Or we already know that some things are exactly the wrong things to do for our condition (eg people urging vigorous exercise, when it’s the last thing CFS people should do), because, like, you know, we’re the ones who actually live with this, so we’ve had to find out about it. But no, somehow, they know best. Go figure.

What really amazed me, however, reading the responses to the Facebook memes, was how many people jumped in, mostly the non-disabled but not always, to excuse the people giving the advice, as ‘only trying to help’, and either saying or implying that we should thank them for ‘caring’, no matter how impractical, ill-informed, tiresome or just plain stupid their ‘help’ is. To which I can only ask the question – WHY?

Why should I thank someone for insulting me? For thinking they know better than I do, what I should be doing, how I should be managing my condition, or my life, better than I do? Why should I be grateful for this? And how is it ‘caring’, when they don’t even stop to ask what we REALLY need, or even what we’ve already tried?

The underlying attitude seems to be that we should ‘be nice’, ie stroke their egos. But frankly, I’ve already wasted way more years than I’d like in propping up other people’s egos, and simply refuse to do it anymore. These days I’m far more into speaking truths, even the unpalatable ones, and I make no apology for that. I also sense an unspoken ableism in those comments, ie that we should be ‘grateful’ for anything that others do for us, because, you know, we’re crips and all. I’ve wasted enough time on enabling that attitude too.

There seems to be several ways people’s egos get entangled in this need to offer ‘advice’.

1) They want to be seen, and/or see themselves, as being ‘kind’ and ‘helpful’, even when they don’t really know anything about a condition. That’s not caring, it’s patting yourself on the back, or trying to get others to, puffing yourself up – “look at what a good person I am!” Sorry, not going to participate in that game.

2) They feel uncomfortable around the disabled, and don’t know how to simply talk to us. So they jump in with random ‘advice’ instead. But really, this is just another way of dehumanising us, another form of ableism. Does it ever occur to them that we might like to talk about other things?

3) They think that if you get sick, it’s somehow ‘your fault’, and you ‘just need to buck up your ideas’. The thinking is “well I’ll never have that happen to me, because I take care of myself”. But illness and disabilities, like poverty and homelessness, can end up happening to anyone. All it takes is one car accident, one random genetic disease popping up in our later years, one period of severe stress that breaks something in you that can’t be mended. No-one is immune. To think otherwise is to not only deny reality, but to regard the disabled as belonging to a sub-class of ‘people-not-like-me’.

One further point - for those who still think that we disabled should ‘make nice’ when offered this not-so-helpful advice, I would also like to emphasise that we often just don’t have the spoons. We have less energy, and more things to do with it, and it’s harder for us to do them, than the non-disabled. So why should we have to waste any of our precious spoons on ‘making nice’? Personally, I just get irritated, or even really, really angry.

So if you meet a disabled person, and you REALLY want to support them in some way, try asking them ‘what can I do for you?’ Or, ‘do you need help with anything?’ That will go much further, and earn you more brownie points, than unsolicited and unwelcome advice, believe me. Because I’m done with gritting my teeth when people implicitly insult me. The world’s a crappy place, and I’m struggling to survive it. I don’t have time to prop up anyone’s ego.

Sunday, 11 February 2018

My review of 'THAT BOOK'

I’ve been trying for ages to write a review of THAT book. You know - ‘To Siri, with Love’. (I got it from the library, because not of all of us can afford to go out and buy new books, and anyway, why should I put money in her coffers?) Others have written theirs ages ago, but I’ve struggled with even reading it, picking it up and putting it down numerous times.

It’s not because it’s badly written that I’ve struggled so much with it. In fact, it’s fairly well-written, chatting away about her life and her sons, with that kind of wry, slightly self-deprecating humour which is always engaging. And she clearly loves her autistic son deeply, and he loves her too. He seems a loving, gentle, caring soul, and it’s great that she’s done what she can to nurture that. Also, she is in synch with us on at least some points, for instance (p 53) on stimming. (See, I’m trying to be fair.)

But. Sigh. I started to read - and the first sentence on the very first page, in the Author’s Note, says – “These days, it’s considered politically incorrect to call a person autistic.” Um… does she even realise that autistics themselves prefer ‘autistic’? Was she even aware of the existence of an adult autistic community, when she wrote that part? (If she wasn’t, I’m sure she is now!)

 A few pages later (p7), she utters what is really the defining sentence of the book. “Every person with ASD I’ve ever met has some deficit in their theory of mind.” Read that again – EVERY person with ASD. Someone has already written an excellent analysis of this, so I only want to say this – Theory of Mind (TOM), as a hypothesis, in my opinion, has more holes in it than a block of Swiss cheese. But even if it were true (and it’s a big if) – she’s forgotten one thing.


The classic TOM tests are done on children. I don’t know a single adult autistic, no matter where they are on the spectrum, who lacks self-awareness, and who isn’t perfectly well aware that other people have different thoughts, feelings and opinions. We may have great difficulty in working out what those thoughts etc are, but we do know they have them. And, despite what she seems to think, I don’t think our difficulties with reading NTs (p 66) is a sign of TOM.

I soldiered on. Yes, all the horrible things others have quoted are there, and just as offensive in context as out of it. She asks, for instance (p 121), “how do you say ‘I’m sterilizing my son’ without sounding like a eugenicist?” Short answer – you can’t. And no amount of waffling on about the history of eugenics, or how there’s a “good success rate in vasectomy reversals”, just in case she ever changes her mind, will alter that. It isn’t even the issue.

The issue here is that IT’S HIS BODY. Not hers. His. It’s HIS right to decide whether or not he ever wants sex, wants to be a father, wants to have a vasectomy. Not hers. Got that, Ms Newman? And as for the ‘Benny Hill soundtrack’ comment, I’m old enough to remember Benny Hill, and frankly, I find it both revolting and mystifying to associate him in any way with that sweet boy.

I’m not going to dissect the book chapter by chapter – someone has already done that, way better than I could. My concern is rather with the underlying message of the entire book. Because despite her sometimes using adult autistics as a resource, her attitude to autistics in general is, well, troubling. I finally realised she really and truly feels, deep down, that being autistic is an inferior state, that to her we are a lesser breed of human. Even her attitude towards her own son seems rather like what you might have towards a beloved but somewhat less-than-perfect pet.

An example of this is when she compares her two son’s conversations with their friends. Her NT son’s conversation, riddled with smug one-upmanship, is somehow ‘better’ than gentle autistic Gus’s more straightforward communication (pgs 163-164), because it’s more ‘normal’, more ‘what friends are supposed to be about’. (Says who? Is there some rule book somewhere?) Or it’s more ‘proof’ of our lack of TOM. And on it goes. If autistic ways differ from NT, they’re bad, or lesser, or just wrong, or signs of a ‘deficiency’ in us… you get the picture, and I’m sure you’ve heard it all before.

There’s also her comments on autistic students at Cambridge objecting to Baron-Cohen’s suggestion that there will soon be a prenatal test for autism. While she allows that it’s okay to ‘not be normal’ (how kind of her!), she also says (p 213) “If you are on the spectrum and you’re at one of the finest universities in the world, you cannot speak for the person alone in a room, forever spinning the bright shiny object.” Translation: “you’re too high-functioning to understand/speak for the ‘really’ autistic”. I’ve already expressed my feelings about that sort of attitude here and here. Suffice to say that this kind of talk is both perpetuating a false division and unhelpful to all autistics. (Are you now understanding why it took me so long to read this book? It was all I could do to not repeatedly throw it across the room.)
And then there’s the issue of how she’s reacted to autistic objections to the book. Firstly, she seemed startled, saying that she hadn’t written it for autistics (imagine if a white woman wrote a book about raising a black child, then, when black people objected to her racism, said that she ‘hadn’t written it for black people to read’. Imagine the furore.) She’s followed this up with working systematically to silence our voices, even making pitying, denigrating comments about how our reactions are somehow ‘proof’ of that ‘lack of TOM’. Or perhaps, Ms Newman, we understand perfectly well when we’re being insulted and silenced, and quite naturally object to it.

The irony of us using the self-awareness and awareness of ‘different minds’ that we’re not supposed to have, in order to protest her state of mind, is not lost on me. It seems to be lost on her though – she seems unable to understand our states of mind, our opinions and feelings, how hurt we feel, how pushed out into the cold, how dehumanised, yet again.

This book is a strange mixture of awareness, confusion, misunderstanding, and sort-of-acceptance mixed with subconscious prejudice. It’s absolutely riddled with ableism. Despite being entertaining, despite it no doubt appealing to the ‘autism mommy’ crowd, it won’t make our lives any better. I doubt it will even make the lives of our parents any better, except perhaps in a “confirmation bias” kind of way.

The list of those who have done the autistic community a disservice is, alas, a long one. Ultimately, and sadly, Ms Newman has just been added to that list.

Saturday, 16 December 2017

The 'Bogeyman' of the 'Low-Functioning'

It seems like every time an autistic advocate pops their head above the parapet and objects to some maltreatment of autistics, especially autistic children, somebody comes back with “but-what-about-the-low-functioning”, dragging in things like poop-smearing, meltdowns and head-banging. “You’re not like these kids, you don’t understand!”, they exclaim, again and again. As if we’ve never heard of such things, or done them ourselves, and as if ‘those’ autistics are a different species.

The ‘low-functioning’, in effect, have become the modern bogeyman. The stereotype that gets trotted out, time after time, cast as “the ones who really do need a cure”, and dragged out as defense against those of us who oppose things like bleach enemas, turpentine drinks, ABA, GcMAF, chelation, hyperbaric chambers and the like as false ‘cures’ for autism.

But I say casting them as this bogeyman is nonsense, a chimera, a false construct.

Why? Because –

1) It fosters a division that isn’t actually there. Functioning levels are actually meaningless. There aren’t any autistics, even adults, who are completely ‘high functioning’. Many of us were like ‘those kids’ when we were young - and some of us still are. But regardless of our apparent ‘functioning’, we can still totally support the neurodiversity perspective.

(There’s also a hidden threat in this - any of us, if we lapse in our ‘high functioning’, could also be subjected to these treatments – and sometimes have been. So basically, the underlying message is “let us do what we want to these kids, or we’ll do it to you too”.)

2) It presumes that the ‘treatments’ will actually help them. I’ve written about ABA before, it’s compliance-training, not a ‘cure’. And then there are the bleach enemas and so on. How anyone can think that these are a good idea to do to anyone is beyond me. How they think it’s going to ‘cure’ a neurological condition is even more perplexing. Yet people do so, causing huge physical and psychological harm to the children. Then they credit any advances the child makes to these bizarre and dangerous ‘treatments’, as though autistic children never grow and mature on their own.

3) It presumes that ‘extreme behaviours’ happen ‘just because’ of autism. We know this to be not true, but even when we try to explain the possible reasons for the behaviours, and offer advice and support, we’re often ignored or derided. Meanwhile, the autistic child/ren in question are indeed suffering - from lack of understanding, lack of supports, sensory overload, social stress, bullying, harsh ‘treatments’, falsely low assumptions of their intelligence, rejection, even institutionalisation and electric shocks… the list is a long one.

4) It presumes that the ‘low functioning’ are somehow different - to other autistics, and indeed other human beings. It casts them as virtually sub-human. They can no longer ignore the humanity of ‘high functioning’ autistics who speak up (though some still try), and so they focus on this group instead. But not only are functioning levels nonsense, as I’ve already said, I’ve read quite a bit of the writings of the ‘severely’ autistic, and I’ve never found anything in these that indicates their brains are radically different to other autistics. The differences are a matter of degree, not of kind.

5) It assumes it’s okay to treat even the ‘different’ like this. This is the crux of it really. Ultimately, it’s not even about whether the ‘low functioning’ really are separate/different from others, or whether the treatments prevent the ‘undesirable’ behaviour. It’s that it’s NOT OKAY to treat ANYONE like this. Ever.

It’s not okay to treat people like dogs, and browbeat, coerce, and manipulate them into submission. It’s not okay to shove bleach up their bottoms or down their throats, force them to drink turps or seawater, inject dodgy blood products into them, starve them with severe diets, give them electric shocks or subject them to chelation that leeches vital elements out of their bodies. It’s not okay to put handwash in a kid’s mouth for stimming, or forcibly hold their hands down till they stop flapping, or anything else that forces them to suppress their very way of being in order to be ‘acceptable’.

None of this is okay. And saying that it is okay because someone is a ‘low functioning’ autistic, is a breach of the human rights of ALL autistics. If even one of us is subject to these things, we are all at risk. And we know it. Even if we don’t think about it consciously, deep down we know it.

This is why we protest.

This is why we say ‘no more’, and ‘nothing about us without us’.

This is not just about preventing abuse, but about demanding our human rights.

So enough with the bogeyman. Enough with trying to scare us and parents of autistic children, enough with trying to silence us, enough with a false separation between ‘them’ and ‘us’, enough with casting the very children who most desperately need acceptance and understanding and support as some kind of demon or sub-human.