Mar. 25th, 2014

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[possible trigger warnings for victim-blaming and feelings of powerlessness. Also, possible TMI.]
This is a post about the problems of phrasing things in a way that avoids accidental discrimination and victim-blaming. As such, I've almost certainly messed up badly somewhere in a way that causes one or both of those problems. If you see a sentence where I've done that,
(a) Sorry, I didn't meant to cause any offence or harm
(b) If you point it out in the comments, I'll both be grateful and do my best to fix it
(c) I'm aware that (a) doesn't prevent it from causing hurt, and (b) isn't anyone's job but mine, but the combination is the best I can currently manage, because I'm human and I make mistakes

So, I was involved in an (entirely amicable) exchange on Twitter a couple of days ago with a couple people, both hard-working campaigners for disabled rights and justice, about a tweet I thought was problematic. Since Twitter isn't the best place for detailed discussion of complex things, I'm now trying to expand and clarify why I think that tweet was problematic.

So, the tweet in question said this:




To avoid any ambiguity: this was a tweet by one well-intentioned person, retweeted by another as encouragement for the fight to retain and improve disabled people's rights. Intellectually, I knew that when I saw it, but emotionally it felt like a punch in the face - both personally and on behalf of a lot of others. There are two separate issues, one of which I brought up at the time, while I tried to keep the other out of the discussion (because it was more personal, and much harder for me to keep a veil of rationality over). Call them "reality" and "perception" - both are real problems, but one is about a person's actual ability to fight while the other is about their internal perception of whether they've fought enough.

Firstly, perception. My disabilities are mostly physical; I suffer from mild depression mainly as a side-effect of the restrictions on what I can do. Mostly, it's under reasonably-effective pharmaceutical control, even when I'm not able to turn the pages of a book because it hurts too much. But the pills aren't perfect, and I have plenty of days when I do everything I physically can and still feel despairing because I don't think I've done enough. I may have written to my MP (though he's a Tory minister, and doesn't give a ****), signed a couple of petitions, and complained on the internet, but I didn't go to any demonstrations, or chain myself to anything - I haven't really fought, so I don't deserve tears, from myself or anyone else. Fighting that feeling when it comes entirely from the inside is hard enough, but seeing other people apparently saying it makes it much harder to reject. (Writing this now, I'm having a serious struggle not to delete the whole paragraph on the grounds that it's just self-pity from someone who deserves all the shit the government - via the DWP and "don't give" ATOS - keeps trying to pile on us.)

What about the second problem - people who are genuinely unable to do anything to fight for themselves? There are quite a few types of these, and possibly more of them than even a lot of rights campaigners realise; some can be hurt directly by such statements (and may well be high suicide risk already), while in other cases it will be their carers who see a statement saying that the person they fight to protect doesn't deserve tears. Consider:


  • Most obvious, but probably the smallest number of cases, "Locked-in" syndrome and similar problems. People who are literally unable to move a muscle voluntarily.

  • Those with serious Alzheimers, some kinds of stroke-damage, and other types of memory failure. By the end of her life, my grandmother was essentially incapable of expressing herself on any complex issue because ten words into the first sentence she'd forgotten what she was talking about. (Which was heartbreaking to watch; I suspect it's also a much more common problem among the elderly than initially seems to be the case, although obviously I don't have the numbers to back that up. But unless you know them very well, it's difficult to distinguish between someone who can no longer construct a coherent argument and someone who can do it, but then has the words flee before they can speak them. I have no idea how you'd collect the data, or what you could do to help the sufferers if I'm right. Also, I digress; I might try to persue this thought another time, though.)

  • People with serious learning disabilities of assorted kinds. Most notably many sufferers of Down's Syndrome, but also including various types of brain damage (both prenatal and due to later injury) and probably a lot of other things I don't know about. People who, for one reason or another, are unable to understand the issues at hand, or to defend their needs. Arguably, this category could be extended to include all children, both neurotypical and otherwise - would you ask a toddler to fight the DWP for their right to see friends, if the government decided children should all stay indoors? (You'd expect their parents to stand up for them, of course, but that's rather my point - some people are unable to defend their own rights, and that doesn't make them unworthy of those rights; it doesn't mean they can't cry when those rights are lost.)

  • People with various kinds of mental health problem. This is in some ways the most complex category. It's also probably the one that contains the highest number of "working age" adults - the sort of people that the DWP, Daily Mail, and other two-minute-haters are happiest to pick on. (It's hard to persuade anyone that pensioners or children "deserve" to suffer, because people instinctively regard them as unable to look after themselves, at least to some extent.) But someone with really crushing depression, or severe social anxiety disorder, or a range of other conditions, may well find it impossible to stand up for themselves. Depending on their disorder, that might be because they are certain that they deserve to be treated vilely by organisations like ATOS[1], or because they are literally afraid of communicating with others, or all sorts of other reasons. But all of those reasons are real, and mean that while they don't fight for what they need (never mind want), they do have the right to cry for what they've lost - and we should cry with them.


[1] known in this household as "don't give" ATOS, when we have to mention them

I've not yet said anything about how best to avoid this kind of thing, partly because (as so often) preventing the problem is much harder than identifying it. I've also got a nagging feeling that I've left out something that belonged in this first (part of the) post. But I'm going to stop and post it now, because I've been working on this for half the day, I'm emotionally exhausted from writing it, and I strongly suspect that if I don't post it now, I'll never post it at all.

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