Big Brother UK is on again. I always enjoy BBUK the most, possibly because the casting is the most diverse of the Anglosphere Big Brother shows, possibly because the edit and setup is a bit less artificial than the others, so you get to see more of the real people – or at least, you think you do. See this year’s housemates here. I think there might be a fair bit to wrangle about with sexuality this year, too, with at least two housemates out and gay as far as we know so far, and at least two out and bisexual.
Here’s a bit from the second show of the season, which shows an interesting little snippet of disability politics. Marcus and Sophia are introducing themselves to the group. Check out the way they evaluate their lives by the way they place themselves in the ability/disability hierarchy.
Transcript (hyphen-introduced lines are interjections from others.)
Marcus: …And I just, y’know, I may have like a – a …
Voiceover: Marcus has been talking for the last four minutes.
Marcus: I’m just so happy to wake up in the morning. I’m so happy to have the things, like, that I’ve got. Like I am strong, naturally strong, I’m fast, and I don’t take tablet for anything. I never get ill, I never get colds, I never get headaches. Well, I’m 35, I don’t think I’m doing too bad for my age, y’know, I don’t have glasses or any hearing aids or anything like that. And, y’know, I just think, I just think that’s brilliant, really.
*applause, murmurs of assent*
Sophia: [unintelligible] I am er, er, like a lot of other people. I like partying, I like being a bit naughty with the drink and being a bit naughty and provocative with clothes, and doing all them kinda things, as ladies do. Yep, but you’ll notice a lot of this. *motions* Stretchmarks – you’ll see it around the abs, you’ll see it around the buttocks, you’ll just see it on me really. The reason behind it is this: I have something by the name of lupus. Don’t know if you guys have heard of it.
– murmurs of “no”
Sophia: OK. Cut a long story short, when I was young, they didn’t know what it was at first. It was kinda – something was attacking the body, shutting down. They didn’t know what it was. So what they usually do is just pump you up on steroids. That’s where all the weight just literally will stick. And then it just went “voomph”.
– You put the weight on through the steroids, you mean?
Sophia: Yes, and it was quick.
– So you’ve stretched and ripped?
Sophia: Yes, literally it was ripped. But they eventually found out after prodding, poking, doing all kinds of stuff what it was. Um, and, by the time that happened, I nearly died by the way. Great. Um, and then it got under control, everything was doing fine, then my sister was diagnosed with it. [shocked murmurs] Yes, crazy crazy stuff guys. And then, cut a long story short, hers got worse, and blam she was cut. She died, three years ago. Um, she was older than me, I am now the same age as her. So I always say to people, “Think positive, cos positive will come for you. You have negative around you? Yeah? That will plague you, literally like a cloud. But I am thankful for everything I have been through. Because I am a strong [unintelligble] now.
– It made you the person you are today.
Sophia: Hell yes.
– Because you seem so confident and so bubbly and so …
Sophia: I am, I am! It could be a lot worse. Life could always be a lot worse. At least I’ve got my two legs and walk and breathe!
– Cos some people –
– Well done.
Anyone want to talk about the disability hierarchy, how these ideas play out in your life, the “think positive” mantras?
[note: Please don’t bother commenting to say “I hate Big Brother!” or “Why do you watch that crap?”]
Categories: arts & entertainment
Okay, stipulating I hate everything about Big Brother:
It’s hard to work out how I feel about that sort of disability hierarchy thing. On the one hand, yes, I can see “well, this and this sucks for me, but at least I still have this”… on the other hand, someone who is disabled in ways you’re not isn’t a “lesser” person and doesn’t have “less” reason to be okay with their lives. And, too, just because, say, I can still walk doesn’t mean it “shouldn’t” get me down sometimes that I can’t run, that I’m in pain all the time, etc.
Comparisons are dangerous both ways, I guess.
Yeah, I really need to put in my usual footnote to not bother commenting to say “I hate Big Brother!” or “Why do you watch that crap?”
Hey, I totally didn’t say that! I just, I don’t want to be mean about it, I just can’t say anything that implies any kind of endorsement of Big Brother, because I find it deeply troubling in a whole range of ways etc. So if I’m going to talk about an interesting issue raised in the context of Big Brother, I feel like I’m leaving a false implication hanging if I don’t, in fact, make it clear that I hate Big Brother and everything it represents, y’know?
sami: thanks for your response. It wasn’t aimed at you as a person; this seems to happen every single time anyone, anywhere (outside fan spaces) tries to have a conversation about issues raised on Big Brother and similar reality TV shows, so I usually put that footnote on my posts about them these days. There’s also a recent history in this space of conversations about disability ending up being about everything but disability, a subject on which I’ve recently expressed my thoughts rather emphatically.
Perhaps we could agree on a compromise by saying to everyone, “Commenting on problematic and thorny social issues raised in Big Brother episodes does not constitute an endorsement or approval of reality television, Big Brother, Channel 4, Endemol, or any of their subsidiaries or associates”?
Maybe some other time I’ll start a thread about Why Big Brother Is Wrong. But not right now. Moving on.
I’ve got to totally agree with what Sami said… It really gets my goat sometimes (especially if I’m emotionally fragile!) when people say “At least I’m not bedridden” as if being bedridden would be intolerable. Because, well, I am bedridden and it’s no picnic but it’s a lot more fun than being dead! But on the other hand my mantra to myself is “at least I can still talk” and I do have friends who can’t speak – who need assistive devices to speak for them. So what am I saying about them in that?
On the other hand I think the “it could be worse, celebrate what abilities I still have” phenomena is important for our own emotional survival. It can be hard to handle when the thing that’s being celebrating is something I don’t have, but if somebody says that stuff I don’t think it’s actually about people without the ability that’s mentioned.
I know Lauredhel has said a bunch of times that being able to take her son to school is really important to her and I can totally understand that it’s one of those “touchstones” that she feels is important … there’s no way I could do that, but I don’t feel diminished or that she’s putting down my worth in any way by saying that. I feel like it says something about how important parenting is to her – not something about the worth of somebody whose abilities preclude it.
I love how much Hoydens makes me think!!!
I’ve been hesitating about posting, because I don’t have disabilities (yet!). However I do have a relevant experience which taught me something very valuable. We (i.e. my partner and I) sent years struggling through infertility. Sometimes, people would try to offer comfort to me by saying that I should be happy, because I had a wonderful partner. Well yes, that was true (and still is). And indeed it made me happy. But at the same time our infertility created incredible sadness for me. These things were not additive. I couldn’t subtract the unhappiness of our infertility from the happiness of my partner, and end up in a net happy position. I was still both totally happy about my partner, and totally sad about our infertility.
I suspect, although I don’t know from the inside, that there is an incredible tightrope for PWD to negotiate here: managing the difficulties of particular disabilities on the one hand, but celebrating the good things on the other. And you can’t just subtract one from the other. They both exist in their entirety. So I celebrate my niece’s grand achievement in learning to stand upright, while mourning the loss of her ability to climb and jump like most children. Because at least she can stand. But what about the children who can’t?
Honestly? I think PWD say things like this, 99% of the time, because they’ve faced so much shame and pressure from able-bodied people to “think positive” and “be grateful” and “look on the good side of things” and so forth — and for people with invisible disabilities, there’s an element of denialism in it as well — having to beg acceptance from able-bodied folk by saying something that downplays the “realness” of the disability.
It’s a tactic to shut down criticism of you as a PWD for being too complainy, looking for things to be upset about, etc. You feel like you have to throw in that obligatory silver-cloud-caveat to keep them from thinking “Wow, what a Debbie Downer” and also to purposefully confront their idea that “well, sie looks fine, can sie really be disabled like sie says?” — you’re basically saying “Yes, I look fine, and I still have a disability.”
It’s a crap way to say it. It always grates on me.
But I think that’s where it comes from a great majority of the time.
Some thoughts pulled over from the x-post on my dreamwidth:
Victim-blamers rarely intend to be victim-blaming. Ask 100 people whether what they said about miniskirts or thinking negative or walking down the street in the dark or not having dinner ready by the time hubby came home meant that the truly brought it on themselves and deserved it – you’ll get 90 NOs. (Maybe more). But this doesn’t mean that those discussions, those talismanic ideas about how if I just don’t wear that and I carry my lucky steel plated handbag and I only go out for 45 minutes instead 55 so longer as I can find the parking I want otherwise I’ll be stuffed;, then maybe I won’t get home sick/raped/dead. – that these ideas aren’t roiling away beneath the surface; the surfacse of families, friends, healthcare staff, acquaintances, and ourselves.
“Positive thinking” sometimes helps me out, done at certain times and in certain ways. I’ll go look to see how the grevilleas are growing and admire the kangaroo paws. or put some nice tomato on a cracker with cream cheese. It sure isn’t going to cure me, though, as many abusive agenda-driven physicians and “researchers” seem to think.
I find myself tangenting off into wondering about the much broader discourse of “Think positive! Don’t stress!” and the ways in which it might function to shut down political action by PWD. For example, I don’t see anger as an inherently bad thing. Anger is a key component of the drive to political action by marginalised groups against dominant groups. Anger leads us to speak truth to power, to get ourselves organised into groups (when we have the energy…). Constantly being told to “think positive!” and content ourselves only with pretty trivialities and domestic life – how much does this serve to suppress our political resistance, I wonder?
I also have long had a problem with the “at least I…” language.
Like Deborah, I’m a bit hesitant about posting because I don’t want to put my foot in my mouth (too far 😉 it’s probably permanently in there to some extent 😉 ), but I do want to contribute to the discussion because I think it is an important one. If I write out of line, my sincere apologies.
From the original post & from the comment thread, my own reaction is because of the comparativity rather than because of the positivity. (err, that seems really obvious when I put it like that, but I’m going to leave it.) Also: enjoyment vs “value”. The paragraphs below are not an attempt to tell people what to say or what not to say, only an attempt to analyse my own reactions to certain phraseology.
To me, it’s something like “I’m happy I can do [x]” as opposed to “at least I can do [x]” (I’d probably put “I’m thankful I can do [x]” more in the latter category than the former).
I’m using the words as short-hand a bit – I think context, tone, etc matter possibly more than the precise words – but the distinction I’m trying to draw is that I think the emotion expressed in the former type of statement is the sort of positivity that Lauredhel is talking about here: “I’ll go look to see how the grevilleas are growing and admire the kangaroo paws. …” It’s an appreciation of nice stuff because it is nice stuff, and not because someone who doesn’t have access to that stuff is less worthwhile, or living a life that is less worthwhile, etc. And that nice stuff may be directly related to ability/disability or it may not. For example, Lauredhel’s flowers are not directly related to ability/disability. On the other hand, if I said “I really enjoy walking through the gardens and looking at the flowers”, the fact that someone else may not be able to do that may be directly related to ability/disability, but I hope that person would not think that I was making any comment about the value of hir life (or the value of my life if I were in an equivalent position to hir).
The emotion expressed in the latter type of statement is the comparative positivity, which I think does imply that the person who makes the statement thinks that their life would be less worthwhile if they didn’t have access to whatever they’re talking about (and ergo, that someone who doesn’t have access to it is living a less worthwhile life).
As I write this, though, I do wonder if I’m drawing too fine a distinction?
Plus I think this is a really good point:
“I find myself tangenting off into wondering about the much broader discourse of “Think positive! Don’t stress!” and the ways in which it might function to shut down political action by PWD. …”
But I really don’t have anything thoughtful to add to it right now.
With a ‘ditto’ to Jo Tamar’s caveat, and an apology for how… stolid this sounds…
I was wondering how this thread would open out, because I actually think it’s really important, but quite hard to talk about. It gets at how hard it is not to hierarchise difference, I think: it’s really hard not put differences (between bodies, between disabilities, between abiliity and disability) into the ‘comparative mode’, as Jo Tamar puts it. We’re not good at it, and I actually think that it’s a direct consequence of the pervasiveness of ableism, like amandaw said. Ability and disability might be binarily defined (that is, shaped through opposition to each other) but we are all finely attuned to the location of particular differences in the scale between, especially where they concern us. This is how it always works with any given privilege: women are understood according to their distance from men, people of colour are understood in terms of their deviation from whiteness, people with disabilities are assessed according to how far they fall short of the able-bodied ideal (and it *is* an ideal). In other words, part of what maintains the value of the able body, in the end, is the devaluing of those bodies which don’t live up to those standards…
Part of the problem, here, I think, is that we’re so accustomed to taking the idealised, the privileged, as the standard by which we measure everything that it’s really hard to see things as just different not as better or worse, valuable or worthless and so on. It’s a habit, and it’s one that always implicates ourselves in the process of assessing others; that is, we’re always working out whether we sit higher or lower on the scale, which is so distinctly (and depressingly) shown in both the BB contestants in the clip (though I think there’s something significant about it being a public conversation, and playing to shared values). That is, part of why it’s hard to break that habit is that we’re constantly used to situating ourselves through our perceptions of others: we’re better or worse off, more able or less able, and so on… There are ways to just let difference be difference, rather than attaching a value to it, and I personally think it’s an intensely political act when it does happen, but it’s also hard because these kinds of assessments of bodies, our own and others’, and where they fall on the scale, usually happen preconsciously; before we’re even aware of them (which is part of why people think that bodies are ‘naturally’ better or worse than each other, if you ask me: it’s not something they turn over in their minds unless they’re challenged to do so). And I think it’s really unsurprising that when you have a body whose function is devalued by environment, by those around you, by a whole set of institutions, you might cling to anything that situates you as living a worthwhile life, even when that falls in with the logics of ableism. I actually see Lauredhel’s ‘positives’ as challenging this, though, because it situates worth and value in her engagement with the world, in a specifically Lauredhel-y ways, rather than seeing value in where she falls in the hierarchy, and other people’s ideas about ‘lives worth living’. Which is kinda what Ricky was saying, I think, sorry to repeat. Working this stuff through in the writing…
And in relation to the ‘think positive!’ crap (and it usually is crap), well, I see that as an attempt to disavow responsibility for the situation TABs put people with disability in, by pretending there’s an individualised solution: it’s like saying ‘hey, we know the fact that this world is built to keep you out sucks, and that everything is designed to make you feel like the world believes your life isn’t worth the living, but really, we don’t like to think of this as our issue, coz it makes us feel kinda guilty so y’know what? I’m going to make it just your problem and tell you that all you need is to buck up and be cheerful.’ In this sense, it totally is a depoliticising move: it makes a matter of individual mood what is in fact a consequence of systemic exclusion and devaluation, and more than this, it usually functions as a way to remain blind to the ways in which we (as TABs) are implicated in the suffering of others.
Hmm. This is clearly something that makes me very grumpy, and I apologise if I’m stated all of this in so firm a way as to make it seem like it’s not up for negotiation or discussion, or that I’m so invested in it that it’ll be an argument if someone attempts those things. Yes, I’m invested, but I am actually happy to discuss, too. 🙂 And again, I’m crossing fingers this isn’t out of line…
Oh jesus, sorry everyone for writing you an essay… [sigh] I can never tell, with that little box….
Don’t anyone apologise for essays on this thread – it’s asking for some pretty solid engagement, and longer comments are appropriate here I think. I am loving everyone’s comments.
Sorry I’ve been so absent; there’s been a fair bit of F2F stuff going on, and I haven’t really been up to thinky things for the past few days. I think Ricky/Jo/WP have together hit on something important in the difference between saying that a certain life is not worth living (or ‘not worth living by me’) and saying that this is the way I enjoy engaging with the world, and these are my priorities – and something that really strikes me is the way in which those priorities may match quite poorly with societal expectation of PWDs’ priorities. I’ve got another post brewing on that… but I have about twenty posts brewing, very slowly, so I can’t promise anything imminent!
Totally agree that the “think positive” is often said out of desperation, in a way of grasping at some sort of control or power. We are so heavily socialised to believe in individualistic ‘responsibility’ and solutions, that when things are not working out well I think we often look inside for solutions either first or exclusively – even when the problem is external and oppressive, and the only real solution is political. WP’s point about depoliticisation is important here. Which is not to say that tweaking one’s reactions to things can’t be helpful from time to time, just that if it’s the _only_ thing that ever is proposed as a bandaid for the issues encountered by PWD (or any other non-dominant group), well, that’s a pretty poor state of affairs, and one that needs changing.
On a slight tangent (and please if I’m being ableist feel free call me out on it so I can apologise) I think we (I?) are trained in this type of thinking from early childhood – “count your blessings; eat your food there are children starving in China/Africa; I complained about having no shoes until I met a man with no feet. ” We judge ourselves on what we do and don’t have and we judge others as well. I’m not sure if it’s an innate human thing, like the survival instinct is, I think it’s probably more something that evolved as we started living in larger, settled communities when group survival became less important and personal things more important.
I think this plays out in disability hierarchies because you are often told to look on the bright side it could be worse. You are defined by your disability and you have two options – being the quiet accepting type or the whining why me type. You aren’t allowed to be someone who experiences the full gamut of emotions, who has good days and bad days, fat days, thin I look great days, bad hair days, fabulous hair days, in love with the world days.
Parents of children with disabilities are to be pitied because their lives couldn’t possibly be as fulfilling with a child like that. Ignoring the fact that they can take great joy in their child and their child’s achievements regardless. That that rush of love can come regardless simply because they are your child. (I feel like a bit of a fraud here because my son has taken bits from all over the autism spectrum, but not enough of any one category to be officially classified and pinned down like a butterfly so technically he’s “normal” except that he’s different).
Lives that aren’t lived in the “normal” way are considered lesser. We don’t value difference, unless it fits into tightly defined categories which, what do you know, don’t include disabilities (unless it’s a fetish thing, but even then there are strict beauty standards).
We tell our partners and write in our wills to turn off the life support because we wouldn’t want to live after a serious brain injury. How do we know? How do we know that we won’t want to tenaciously cling onto whatever life we have? To see our children, our partners, family and friends. We can’t imagine what it would be like, and we can’t imagine anyone wanting to live like that so we discount it. We hold life cheap if we can’t have it like we do now we don’t want it. Until we do want it. Until we realise why people with disabilities want to get a fair go, to be able to be part of society, because we have become one of them, who we have spent so long othering.
I just wanted to add that yes, I was definitely riffing off what Ricky said. Apologies for the non-acknowledgement, Ricky: it got left out because the way to put it which first came to mind sounded like I was putting words into your mouth – and then I got side-tracked and left out the acknowledgement altogether.
Mindy, re your first two paras: yes, and isn’t it funny, that the TAB – who on that reasoning “should” be “completely happy” with their lot (because “look at the [insert some “other” group here]!”) – are perfectly entitled to whinge and whine?
Re this from Mindy: “Parents of children with disabilities are to be pitied because their lives couldn’t possibly be as fulfilling with a child like that.” (and the rest of the para)
In *addition* to what Mindy said: At the Hoydens meeting yesterday we were talking about something similar, which I think ties in reasonably well here – that a lot of the dialogue about having children with disabilities is all about “oh, but my life is so much more fulfilled because I learnt so much because my child has a disability!” (which, to make it clear, is NOT what I think Mindy is saying, just that I think it’s something which is commonly expressed.) That attitude has always bothered me a bit, and PW articulated why yesterday: it’s because it takes away from the personhood of the person with the disability and makes it all about how sie is a wonderful life lesson for someone else.
Lauredhel, I’ll be really interested in reading your post on priorities when/if you write it (but no pressure, of course, since obviously you have your own priorities 😉 ). It’s something I’ve been thinking about, too, although from your brief comment I think I’ve been coming at it from a different direction. I may do a post on it soon, too.