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.