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.

Autistics And Self-Loathing

 Something that’s not really talked about much, apart from the occasional rant, is the self-loathing many autistics feel. I’ve experienced episodes of it myself, and have sometimes seen it in others. We can be tripped up by it, cast into shame, self-hatred and low self-esteem, no matter how much we might believe in autistic pride and all the rest of it. And of course, those who haven’t been exposed to that, are likely even more prone to it.

I want to examine the likely sources of this self-loathing. They seem to me to fall into three categories.

1) The world’s view of us. 

The public picture of autism is an ugly one. The ugliness is there in almost every news item about autism, where announcers talk about our very existence with solemn frowns, discuss worriedly how our numbers are increasing, and then smile perkily when talking about a ‘possible cure’, or gush over yet another piece of inspiration porn.

It’s in how the most frequently projected image is that of young, non-oral-speaking and almost feral boys, who spend their time having constant meltdowns. And who will never progress beyond that, it is implied or even stated outright, without a ton of ‘therapy’. 

It’s also in the next most common image of us, as Asperger’s type teenage boys with fantastic computer skills but zero social skills, with no empathy or emotions, and who border on psychopaths – think of those news items claiming this or that mass shooter was Asperger’s.

It’s in the frequent news items about possible causes of autism, each one seeming more wild and ludicrous than the previous. Not to mention the even more wild and ludicrous potential ‘cures’ for it. As though we are so terrible, anything at all must be considered to ‘fix’ us. Even things that would be considered abusive done to anyone else.

It’s in the almost always negative language used about us. Words like disease, epidemic, brain damaged, disorder, puzzle, problem, burden, cure, treatment, therapy - the list goes on and on – and in all the solemn pronouncements of ‘experts’ and pundits on What To Do About Us. 

The underlying message we hear? “The world hates us, and wants to be rid of us.”

2) People’s treatment of us.

The way people treat us on an individual basis is often ugly too. As children, we can be dragged from one doctor to another, one ‘expert’ to another, put through all sorts of tests, and subject to all sorts of ‘therapies’ and ‘treatments’, designed to make us at least pass for normal, whether we have a formal diagnosis or not. 

Or schools single us out for various behaviour ‘corrections’, or demeaning segregation from others, or we get bullied by other students, and left unprotected or even picked on by teachers. We flounder without help, or get the wrong sort of help that actually makes things worse.

As adults, we suffer frequent criticism, hostility, derision, ridicule, ostracism and rejection. We are bullied at work, in the street or even in our own homes. We’re put down, insulted, pushed around, laughed at, or even beaten up. Our supposed loved ones or even paid caregivers can manipulate us, exploit us, and sometimes abuse us also. This abuse can be physical, sexual, verbal and emotional.

Even in what seem like ‘good’ relationships, we can be subject to a severe lack of understanding, emotional expectations we fail to reach because we don’t even know they exist, silent demands we can’t figure out let alone fulfil, and criticism of our ‘bad’ behaviour.

The underlying message we hear? “They hate me for being autistic/weird/different”.

3) Our own experiences

There are two parts to this. 

       a) The first is when we make a mess of things in front of other people. If you’re autistic, you know what I’m talking about here. The all-too-public meltdowns, or the embarrassing shutdowns at totally the wrong moments. The times we literally fall flat on our faces or break something important. The times we turn up late, or disorganised, or in a total fluster. The times we inadvertently hurt someone we actually care about. The times we get worked up about something, and are told we’re ‘over-reacting’, or ‘making a fuss about nothing’, and ‘need to get a grip’ on ourselves. The social blunders and the awful silence that follows them, the blurts and the clamming up, the muddles and the messes, the times we just end up feeling like a total idiot.

       b) The second part is more private, but perhaps even more potent. It’s the times we come home from struggling through a day at work or school, keeping up face till we get home and can basically crawl into our holes to recover, till we have to get up and do the same thing all over again. The times we get invited to some social event, and know that we just can’t do it, and the resulting feelings of inadequacy. The seeing anyone else do anything we’d love to be able to do, but just can’t. 

It’s the crying all night, or rocking till the wee small hours. The mess our homes get into, even if no-one else sees them, and the realising that we don’t have the slightest idea how to clean them up. Or the moments we realise we’ve stayed up till three a.m. AGAIN, and we have to go to work or school tomorrow. Or our sleeping in, and then being embarrassed because someone might come to the door while we’re still in our pyjamas at midday. Even if no-one does.

Then there’s the moments of overwhelming empathy, where we want to cry for the whole world and the mess it’s in, and then feel stupid for ‘feeling so much’. Or how stupid we feel when we realise the significance of something said to us maybe years ago, or how we were fooled by someone or something way back when. It’s also the times we go off on our own mental ‘trip’ of one kind or another, getting all worked up, only to hear or see something that makes us realise we’ve got it all wrong, and makes us feel like fools. Even if no-one knows we did.

Or the self-flagellation and feelings of shame about even feeling shame, because we’re supposed to be able to ‘pull ourselves together’ – a sort of double whammy. 

The underlying message we give ourselves? “I’m so stupid/weak/useless/pathetic/not good enough.” Or something similar.

All of these can become sticks to beat ourselves with. And no matter how much we believe in autistic rights, autistic pride, and taking an ‘autism-positive’ stance, this self-loathing can still creep up on us and whack us from behind, when we least expect it.

Now, I don’t have any magic cure for any of this. But I do know that, far from being a reason to stop advocating for change, it actually makes that change even more imperative. We need to change the public perception of autism, change the way autistics are treated, and create an atmosphere of support and understanding for ALL autistics - whatever their age, whatever their so-called ‘functioning’, whatever their needs, ambitions, etc. 

Because only then, do we have a chance at being freed from this, and attaining a permanent state of self-respect.

(Note: updated 15/10/2017, to include the last two sentences in the paragraph that begins "Then there’s the moments of overwhelming empathy...")