Comments

I've just realised that it's only possible to comment on this blog if you have a Google/Blogger account - this isn't intentional...

As there quite a few people who have WordPress or other blogs, or who don't have blogs as far as i know, who i'd like to be able to comment on stuff i post, i'm going to look into changing that... so apologies if my cluelessness about HTML makes me do anything that screws things up unintentionally...

Edit: I think i have fixed this. If anyone is reading this blog but can't comment, please email me to let me know...

Top 10 Unintentional Disability Anthems

This is kind of a response to (or at least inspired by) a post on the BBC Ouch blog by Nicola aka Turtle (whose return to blogging is keenly anticipated...) By "unintentional" i mean songs that to me are disability anthems, in one context or another, but weren't consciously intended as being about disability or as part of the "disability arts movement" (hence no "Spasticus Autisticus", no Johnny Crescendo, etc).

Yes, i have a bit of a thing for lists...

1. Pulp - Mis-Shapes

I'm not actually sure if this was an intentional disability anthem - I'm guessing that it was meant to be an anthem for all the "misfit" indie-kids who liked nerdy, sarcastic bands like Pulp and were persecuted by fans of the likes of Take That and the Spice Girls in the mid-90s (among which, i am absolutely sure, there were at least a few crips and neurodiverse types). Still, the lyrics fit the lived experience of a crip growing up in Middle England far too well for coincidence. "We don't look the same as you, and we don't do the things you do, but we live round here too... We'd like to go to town but we can't risk it cos they just want to keep us out, you could end up with a smack in the mouth, just for standing out"... and then it goes into a rousing, even if tongue-in-cheek, call to arms that always puts me in mind of the best kind of direct action... "We want your hopes, we want your lives, we want the things you won't allow us". Social model in a nutshell.

2. Curtis Mayfield - Move On Up

OK, Curtis only became disabled after he recorded most if not all of his classic material (of which this is probably the best-known song), but like so many of his others it is a powerful anthem of self-determination and call for acceptance of difference, with a utopian vision ("Enter this people of beautiful people where there's only one kind") that rings true for anyone in a discriminated minority group. Originally written for the African-American civil rights movement, it was taken up as an anthem by the gay community, and could equally be such for the disabled community. "Hush now child, and don't you cry. Your folks might understand you by and by" - even if that hope is never fulfilled for many of us, it strikes a chord that's undeniable. And it's one of the few genuinely great and non-cheesy "uplifting" songs...

3. Israel Vibration - Weep And Mourn

Really, there are loads of Israel Vibration songs that could be here - as the (probably) world's only all-disabled roots reggae group, and one of the most crucial in that genre by any standard, a list like this couldn't not include them. "Weep and Mourn" is one of their most powerful "sufferers" anthems, and while for me there is (or feels like there is) an added disability dimension implicit in many of their lyrics, this is one of the ones that makes it clearest. "Persecution, tribulation, in Mona Rehabilitation Centre". A perfect example of the apocalyptic tone of the heaviest roots - it leaves no doubt that disability institutions will not be spared the fire that they chant down on all the oppressors and evil-doers of Babylon.

4. Eric Donaldson - Stand Up

Another deep and heavy roots reggae tune, this one produced by the legendary self-declared madman Lee "Scratch" Perry (surely a biodiversity icon if there ever was one). As with plenty of other tunes of its kind, many of the lyrics are as relevant to the disability pride movement as to the postcolonial identity politics that it came from - "You can't judge a book by the cover, just turn the pages and read, don't try to make me over... Don't you shed no tears for me, don't you cry no more, don't you worry about me, now everything is alright" - but then it has the utterly hilarious (well, if you have my twisted sense of humour) chorus "Why can't you all stand up?!?" The absolute definition of unintentional... ;)

5. The Au Pairs - Stepping Out Of Line

Again, there are loads of Au Pairs songs that could be in this list, but this, I think, is one of the most appropriate - a sardonic, savagely witty take on socially imposed conformity and systematic repression of those who do not fit into neatly labelled categories, sung from the persona of the totalising state: "You, gonna find you a label... just as soon as we're able, we're gonna put you in a paper bag... Shut up, shut up, you're talking too loud, get back in your corner, that's an order! We've got you summed up, we've got you defined, and you're stepping out of line..." Lesley Woods at her darkly witty, brutally brilliant yet always passionate and idealistic best, epitomising the brief yet glorious moment when punk met radical intellectualism. One for all the stereotype-defiers out there...

6. Tracy Chapman - Why?

The stark simplicity of Tracy Chapman's first album, and her gift for seemingly effortlessly fusing the personal and the political into searingly powerful lyrics, make it one of the most moving musical experiences out there for me (just about every track on it can make me cry). (Sure, some hate her because she's so "overly" earnest, but... I'm an Aspie. I like that...) All her songs feel like they come direct and unmediated from the most marginalised and vulnerable in Western society, so it's no surprise her influence looms large over the music of the disability movement. "Why?" contains the immortal line "The time is coming soon when the blind remove their blinders and the speechless speak the truth" - undoubtedly meant metaphorically rather than literally (and yeah, the disability metaphor is probably arguably dodgy), but taking things literally has always been one of my favourite pastimes... ;) One hell of an emotional punch...

7. James Brown - I Don't Want Nobody To Give Me Nothing (Open Up The Door, I'll Get It Myself)

Almost every lyric in this (unjustly) lesser-known James Brown tune (not least the title) could have been written for the social model disability movement instead of (or as well as) the African-American civil rights movement - "Don't give me sorrow, I want equal opportunity to live tomorrow... Give me schools and give me better books, so I can read about myself and (OK I can't make out these few words) looks... We don't want no sympathy, we just want to be a man..." The central anti-charity demand of the title is repeated with the almost religious fervour of JB's unmistakeable screaming and hollering. And then it just carries on for almost 10 glorious minutes of impassioned, tighter-than-tight funk...

8. Nina Simone - Don't Let Me Be Misunderstood

This one's (perhaps) a bit impairment-specific - but I think any neurodiverse person should be able to relate to these lyrics, and Nina's delivery is exquisite and spellbinding, lending a grace and power that utterly transcends pathos to make the song simply a stark, indestructible expression of truth. "If I seem edgy, I want you to know I never mean to take it out on you... Life has its problems, and I get more than my share, but that's one thing I never mean to do - cause I love you...Oh, baby, I'm just human, don't you know I have faults like anyone - sometimes I find myself alone regretting some little foolish thing, some simple thing that I've done... but I'm just a soul whose intentions are good - oh Lord, please don't let me be misunderstood". The Animals' version may be more famous, but Nina's is, for me, one of the most moving performances ever recorded.

9. Anthony & The Johnsons - Cripple And The Starfish

OK, apart from the title this song isn't actually really about disability - I think it's a kind of transsexual BDSM love song... but, well, it's so exquisitely beautiful that i couldn't possibly not include it. Like the last tune, this ranks up among the most moving and powerful songs ever recorded for me, and it can send me into that truly overwhelming state of cosmic transcendence that i don't even know how to put into words... only a very, very few other musical works (Heart of the Congos is one that springs to mind) can do that. Also, Anthony's voice is so stunningly transcendent of gender and tone classification that i'm certain he(?) is a very biodiverse individual. I could go on about the regenerative metaphor of the many-headed Hydra here, but i'll just say: We will grow back like a starfish...

10. Peter Tosh - I Am That I Am

Peter Tosh's folk-reggae ballad (no relation to the camp disco anthem of the same name), sung in his customary authoritative voice, is an affirmation of the validity of human individuality and difference, and one of the simplest and strongest declarations of identity and autonomy ever put to music, which succinctly expresses the universally libertarian ethic that underpins Tosh's more specific black liberation politics. ""I am not in this world to live up to your expectations, neither are you here to live up to mine... Don't underestimate my ability, don't defamate my character. Don't belittle my authority, it's time you recognised my quality. I said I am that I am, I am, I am, I am". A fitting closer to this list...

Disability Blog Carnival: Sexuality, Disability and Controversy... (warning: long)

This post is part of the Disability Blog Carnival, which is being hosted by the rather lovely Zephyr, whose blog, Arthritic Young Thing, is here. It isn't quite the post i'd intended/hoped it to be, cos i've been having intermittent-at-best internet access, so i haven't been able to look up a lot of the material that i was intending to use as inspiration for it. However, i'm almost certain to return, in greater detail and/or more particular focus, to all of these themes when i have more available net-time...

The intersexction (typo unintentional, but so good i decided to leave it in ;) ) of sexuality and disability is a really fraught subject, one which tends to bring up quite aggressive debate and one which it's often easier to avoid than to really dare to get right into... it's also one on which i have views that are both uncertain (and possibly in parts self-contradictory) and (to some) particularly controversial...

Mainstream society, in my experience, tends to portray disabled people as not really having sexualities, or to assume that sex, even if we wanted it, isn't something that we're capable of (this does, in fact, vary quite a lot according to the type and visibility of impairment, and to the gender and age of the person in question, but as a really sweeping generalization, IME it's true).

The response, quite naturally, by the disability movement, and disability arts in particular (see, for example, the photo exhibition Intimate Encounters) is to challenge these assumptions with assertions that we are capable of being just as sexy and as sexually active as anyone else. While, on one level, that's fucking brilliant (pun intended), it can lead to the assumption that all disabled people have sex lives that are as successful as anyone else's, and... well, that is, IMO and IME, not true.

(I actually really hate even talking about this, because it makers me feel like a traitor to the disability cause or something... but, if you're a crip who's not getting any sex, and even finds it close to impossible to see yourself as ever being accepted as a sexual being, then this kind of portrayal can leave you feeling like even the disability movement doesn't recognise or care about your problem - in fact, that effectively, you don't even exist...)

As i posted on an old thread on the BBC Ouch! message board (i think it was about a news story about a young man with a physical impairment choosing to pay for sex):

"I'm absolutely in favour of portrayals of disabled people as sexual beings and proof positive that disabled people can have successful and fulfilling sexual relationships (whether long-term and monogamous or casual one night stands, whether straight or gay and whether "vanilla" or "kinky")... in fact, preferably the whole spectrum of sexuality that non-disabled people are capable of, plus the variants that different impairments make possible!

However, the fact remains that in our society disabled people are very often NOT seen as sexual beings, and disability (in its social sense of disabling barriers) does prevent many of us from having the sex lives we would like to have. My one and only sexual relationship so far was with a wheelchair user (my impairment is "invisible"), and we got the sort of looks when together in the street that implied I was seen on the same level as some sort of paedophile. My ex met with both the assumption that she couldn't have and/or wasn't interested in sex and the assumption that physically disabled people only want relationships with other physically disabled people, and that a non-disabled (or not obviously disabled) person in a sexual relationship with a disabled person was necessarily some sort of exploitative pervert... I experience sexual frustration so severe that in itself it is often enough to make me feel suicidal."

so... while i massively admire bloggers like Zephyr who are putting out the message that disabled people can and do have sex - and totally encourage as many disabled people who do have sex lives to do so - i also have to confess to feelings of envy and even bitterness at reading them...

Another thing i have noticed (and that i have particularly conflicted views about) is that there seems to be a lot of suspicion and hostility from disabled people towards non-disabled people who are sexually attracted to disabled people - with "devotees" being portrayed as perverts, exploiters, and in general evil people. Now, i'm only too aware of how much sexual abuse and exploitation of disabled people by those in positions of relative power and privilege there is, so i can't dismiss those concerns as either prejudicial or fictitious. But, i also can't help feeling that there is often an inherent contradiction in the automatic disgust that many disabled people seem to have at someone finding them attractive because, rather than despite of, their impairments...

I think there is a parallel between many disabled people's views on "disability fetishism" and many feminists' views on pornography, BDSM, and fetishism more generally. Just as sex-positive feminism argues that such things are not in themselves objectifying or exploitative, but are made so by patriarchal and capitalist society, so i would, tentatively, argue that finding (for example) amputated limbs, short stature or a CP-affected voice attractive is not in itself objectifying or exploitative, but can be made so by a disablist society...

OK, so i'm speaking from a perspective of having a mental rather than a physical impairment, and one which is "invisible" (tho i think there are some problems with that term, a subject i'll probably return to) - but, if someone were to "fetishise" my impairment, i'd be incredibly happy - in fact, i'd go so far as to say that, for someone to have a successful relationship with me, they'd probably have to find my impairment, as part of me, attractive - rather than "finding me attractive despite my impairment" - as it is such a huge and indivisible part of me that, effectively, it is me (in the sense that i really can't conceptualise of "me" and "my impairment" as 2 separate things)…

I don't know. There seem to be a lot of disability activists who think that a crip/crip relationship is an ideal to be celebrated, but a crip/non-crip relationship is something to be suspicious of or to be frowned upon. I can see where they're coming from, but i'm not sure where that leaves me - because my one relationship, with an obviously and visibly disabled woman, was before my own diagnosis or self-definition as a disabled person - so was that a crip/crip or a crip/non-crip relationship?

By some definitions, i would qualify as a "devotee", in that visible disability is actually a plus in terms of attractiveness for me (something else i feel like i'm stepping into very unsafe and dodgy territory to talk about) - i.e., take two otherwise identical-looking women, one with a visible impairment and the other without, and i'll find the visibly impaired one more attractive. (It's worthy mentioning at this point that i also feel guilt at fancying women but not men, because of the identity as "straight man" that that gives me...) Somehow, that seems to be "OK" for a disabled person, but "not-OK" for a non-disabled (or apparently non-disabled) person...

OK, i think that at least part of that is due to feeling that, because disability is such an important thing in my life, someone who understands disability is more likely to understand me, and there are many levels on which a disabled partner would "get it" and a non-disabled partner wouldn't (in this i think there's a parallel with feminists who are "politically lesbian", in that they're capable of being attracted, on a purely physical level, to both sexes, but choose to have, or feel comfortable having, relationships only with women), and that thus disabled women are more "approachable" to me, and i find it easier to seriously consider that they might actually want a relationship with me...

However, on a pure attraction level, i was still attracted to visible disability even before i knew that i was disabled (not just on a sexual level, but also on a level of just wanting to know and be friends with disabled people - in my teens i volunteered on a "playscheme" type thing for (some physically, but mostly mentally) disabled kids of a similar age from a "special" school, and found myself identifying so much with the "client" kids that it scared me), so, i dunno... while some of that might just be the above stuff on a subconscious level (fuelled by an inarticulate awareness of being, like them, "Other" or "different"), i think i might well also simply have a non-rationalisable "fetish" for... odd-looking or "unconventional" bodies. I really, really don't know whether this is in any way inherently exploitative, objectifying or "wrong"... nor am i quite sure whether my diagnosis-as-revelation and consequent identity as a disabled person fully "explains" this (altho it certainly goes some way towards it)...

Hmmm. Don't know if i'll regret talking about all this, especially at such an early stage in my blog. It feels like it needs talking about, however...

There are times when i wish i didn't have a sexuality at all - when i feel that my - seemingly unsatisfiable libido is nothing but a curse, and i am even seriously tempted to look for a "medical-model" solution - i.e., accept that i have no chance of ever finding a partner, and go to a doctor and ask for something that will reduce or even wholly eliminate my sex drive (I know that there are drugs, such as some SSRIs and some anti-androgens, which are capable of having this effect, even if it's not usually their "intended" or primary effect). However, there's a small part of me (no, not that small part.. OK, well maybe ;) ) that just stops me doing this - by having that unconquerable, even if ridiculous, hope...

and, of course, i remember that these kind of medical model "solutions" have been used on, and are still being used on, all kinds of disabled people against their will - Ashley X being just the most recent and one of the more spectacular examples of this - and that that is one of the most truly horrific human rights abuses in the history that "they" don't want to tell you about our people... logic tells me that, if there are impairment-related barriers to disabled people getting the kind of sex life they want, then the social model solution is not to change those disabled people to make them no longer want it, but to change society to remove or at least minimize those barriers...

The thing is, i really don't know how such a social model solution to this particular problem could be achieved. I get uncomfortable when i hear people talking about a "right to sex", a phrase which fairly often comes up in disability/sexuality contexts (the recent-ish sex survey in Disability Now magazine, for example) - because sex is something that necessarily (well, if you don't count masturbation, which i don't, cos... well, that really doesn't do much for me) involves at least 2 people, and I'm not sure that an individual can have a "right" to something that someone else necessarily has to consent to... also, when you talk about "rights", you're getting into obligations, and i don't think something that involves people having totally subjective feelings for one another can be talked about in terms of obligations (outside really nasty patriarchal contexts that i wouldn't want to go anywhere near)...

(At one stage a couple of years ago the society for disabled students that i started at my old uni (it only lasted a year) and the Anti-Sexism Society were planning to jointly organize a panel debate on the question of "Is there a right to sex?"... for some reason i can't remember, it never happened, but that could have been an incredible debate...)

I have problems with a lot of the stuff that's been talked about a lot in disability circles about state-funded access to sex workers (I think this actually does exist in some European countries? maybe Sweden or Holland?) and about PAs as "sexual surrogates" (tho there are a couple of really good dissertations on these subjects online at Leeds University's Disability Studies Archive - note the first 2 links are to PDFs, for anyone whose software can’t handle that) - and, in any case, those kind of "solutions" just aren't really compatible with the particulars of my sexuality - i want a relationship with an uncoerced friend, not someone who is "only doing their job", and my sexuality is "odd" anyway - the thing that gives me real sexual pleasure is giving another person genuine pleasure, not "taking" it (whether that has something to do with my impairment, i'm not sure, but i think it might have something to do with the lack of identification with my own body which i think is part of my impairment - that's a somewhat unresearched area...)

Another area that a lot of people seem to think is somehow dodgy is online dating – there are a number of online dating sites aimed at disabled people, one of which I am a member of – but when I posted about that on the Ouch message board, people’s reactions ranged from approval to total dismissal of such sites as automatically “sleazy”, objectifying and exploitative… from a feminist point of view, I honestly don’t know what I “should” think of them, but it’s another thing I feel a vague unease in admitting to… liberatory or exploitative? Again, I don’t know… a lot of the people who put profiles on there seem to have the “I want someone to like me despite my disability” mentality. (To be fair, I haven’t really got any expectations of finding a partner thru that site – my motivation for joining it was as much just to “meet” disabled people with similar interests, and I have “met” 2 other people with interests in radical politics, queerness and disability thru it… admittedly, I haven’t actually got round to emailing them, but that’s just disorganized autistic me…)

So all in all, I don’t know if there is, or even can be, a “social model” solution to disability-related sexual frustration that doesn’t involve someone’s objectification, exploitation or just unwillingness… there is, it seems to me, an unresolvable problem when something is a genuine need, but cannot by its nature be made a “right”…

Still, there's a Utopia inside my head (one that i think of every time i hear the Au Pairs songs "Sex Without Stress" and "No More Secret Lives") in which everyone, no matter what their bodies can/can't do or look like, has their sexual needs appreciated and accepted, and is mutually fancied by someone (if, of course, they want to be - i haven't even mentioned the neurodiverse people who genuinely are asexual in this post), and it isn't "perverted" to fancy anyone or any body type... whether it's possible for any of us to actually get there, i truly don't know...

Bloody hell, this post is about 2600 words - that's longer than a lot of my uni essays... :o And i still haven't written about a lot of the stuff i was going to, like portrayals of disabled sexuality in film, photography, etc... oh well, i'm obviously going to have to return to this subject...

Human zoo exhibits, crips and cryptids

Loren Coleman at Cryptomundo has written this article about indigenous African people, of the physically small ethnic groups often called "pygmies", being exhibited in a zoo. He then takes the article into speculation about what would happen if cryptid hominid species such as "Bigfoot" were discovered. I'm not sure quite what to think of the linkage there, but from a human biodiversity point of view this says a lot about the prevalent mentality to me...

quote: "Why do humans in power treat other humans who happen to physically appear to be different than them, so inhumanely?"

if that question isn't fundamental to disability, i don't know what is...

For quite a few years i didn't believe that there actually were such people as "pygmies" - i thought they were a racist fiction invented by imperialist explorers. It wasn't until i read a music review of a collaboration between some electronic music composer and a group from one "pygmy" tribe that i realised they were actually real ethnic groups, who have of course been "othered" and described in almost certainly distorted and exaggerated ways from their "discovery" right up to the present. I'm not sure how much to believe of the claims about them - my cynical bullshit-detector side strongly suspects they are nowhere near as utterly removed from the rest of humanity as they are portrayed to be, and are probably just as much caught up in urbanisation and proletarianisation as any other Majority World people... in fact, given how multicultural Britain is, i reckon there must be some people from these ethnic groups living in some shitty inner-city housing somewhere in Britain (some might even be posting on the internet)...

This made me think, if they did come to live here, would they, in fact, be regarded as disabled people? Their short stature would probably qualify them as Persons of Restricted Growth, but unlike most people in that category, their size isn't an "impairment", but the "norm" for their ethnicity... there are other ethnic groups in which particular impairments are particularly prevalent, such as the people with the "ostrich feet" syndrome, and in which people with those conditions are not particularly regarded as impaired or disabled (i think Mike Oliver writes a bit about this in The Politics of Disablement), but this seems a bit different... would such people, in our society where most things are routinely geared towards people of "normal" (ie tall by global standards) height, would these people be "disabled"? is there a real dividing line, in biological terms, between genetic impairments and "normal" natural genetic variation?

(If anyone from a "pygmy" ethnic group is posting on the internet, then i'd absolutely love to hear their perspective on this...)

Also someone at the Cryptomundo blog posted the perceptive comment: "Did anyone ask the pygmies how they felt about it? Maybe they would have preferred staying at the zoo rather than being shuffled of to “accommodations at a local school,” which I read as folding cots in the gym. Want to treat them with due respect? Give them the choice. Don’t dictate what’s best for them.", which made me consider the perspective of a people whose culture emphasises respect for non-human nature - they might consider being treated like animals less degrading than being treated like children... but, instinctively, to me both those options - both of which are routinely done to disabled people of many types of impairments - are inherently degrading...

Cryptid hominids (stuff like Bigfoot/Sasquatch, Orang Pendek, Almas, etc) are one of my sillier perseverations. Or maybe not so silly, actually, given that it does seem that quite a few autistic people are into that sort of stuff, and there is even a theory, popular among certain segments of the Aspie community, that autism itself comes from the intermixing of modern humans with Neanderthal or other non-modern-human hominid species. (This sometimes gets linked in with speculation about mythological archetypes such as elves, faeries, trolls, etc, and the "changeling" myths - another area i'm interested in, and that absolutely fascinates me from a speculative-fiction kind of viewpoint, but that seems just that bit of speculation too far for me to accept as "real life"... the idea that a Sasquatch might have been captured and put in a mental hospital tho... whoa. Shivers down my spine, even tho i know it's highly unlikely... but that is just what the US establishment would do to one...)

Speculative stuff aside, i do believe there is a real, relevant link between this kind of stuff and disability politics. Disabled people, gender variant people, indigenous peoples of colonised areas, and "mystery" animals have all been exhibited in circuses, theatres, etc as "freaks", have all been the subjects (or possibly objects) of all kinds of pseudoscientific and mytho-religous speculation, have all been described by science in deeply "othering" terms (and then their descriptions used to add "validity" to all kinds of extremely dodgy pseudoscientific politics), and all represent biodiversity in forms that establishments, past and present, have wished to exclude, denigrate, refuse to recognise, or suppress... no wonder, then, if crips identify with cryptids ;)

I didn't actually mean to delve quite so far into the realms of such oddness so early in this blog. Oh well, organic development, i guess...

good meeting, good conversation... crap internet.

I met up with an awesome and gorgeous woman yesterday (who I'll call K, because I'm not very imaginative)... the circumstances of meeting her were a bit weird and possibly fucked up... basically, at a conference thing to do with independent living i went to a few months ago, she was sitting at the table behind me, and when i was giving out some leaflets i wrote a little message in the margins saying "if you are ever in Brum and want a drink and a good time, call me"... i actually had no expectation at all of her getting in touch with me - i thought she would be at best flattered but bemused and at worst disgusted - but on the way back she txted me, and we've been intermittently emailing each other since...

I still don't really know what to think, ethically, of that - as soon as i gave her the leaflet, i thought "oh fucking hell, what a sleazy, monstrous, exploitative hetero male thing to do that was". At least 3 female friends, including one very outspoken lesbian feminist, told me they didn't think it was sleazy or exploitative, but i have it so deeply imprinted in my head that ANY remotely-vaguely-sexual proposition from a man towards a woman is an act of oppression that i can't help having it nagging at me in my head that i'm a... traitor or something. I think i need to find some (ideological and practical) ways round that one... i definitely aspire to sex-positive feminism, but i can't quite work out where male sexuality can or should factor into that...

Anyway in the first meeting there was no indication (at least that i could detect) of whether anything sexual might happen, but i actually don't mind if it doesn't, because she's definitely a person worth knowing and being friends with regardless... i do think she's very attractive tho ;) We had really good conversation about disability stuff, particularly about what it feels like to finally know you have an impairment, and about how (regardless of type of impairment) there are common things to all disabled people... it's also good to know that i'm not the only person in the disability movement who has had a formative experience of trying to "work with" disabled people, and seeing (unlike everyone else present) the hierarchies and injustices inherent in that...

she also seemed to be quite receptive to the "biodiversity" concept, which is cool... i have this tendency to strongly identify with characters in books in a way which involves kind of trying to map my own life onto theirs (ok, crap explanation... will return to this subject in my planned blog post on ways of reading fiction), and I've just read Octavia Butler's "Parable of the Sower" and "Parable of the Talents", and at the moment i can't help seeing the biodiversity concept as my "Earthseed", and thinking almost strategically about having people i know in different cities as "comrades" who i can introduce to the concept... I hope this isn't a sign of megalomania ;)

Another interesting thing is that K reckons that her impairment (which is a pretty rare one, with numbers only in the low hundreds worldwide), and possibly a number of other rare congenital impairments which seemingly only started occurring in kids in the 70s and 80s, and occur in "clusters", is possibly the result of government testing on expectant mothers of drugs aiming to produce "perfect" children, in some kind of secret or quasi-secret eugenic programme. Knowing some of the stuff i do about what has been done (and still is being done) to transsexual and intersex people in the UK and US, and some of the stuff that happens in disability institutions, this doesn't really actually surprise me, but it's a reminder of how fucked up the world actually is (we talked quite a bit about how non-disabled people often simply don't believe the truth of the shit that happens to (or more precisely, gets done to) disabled people). I have to say there's an irony in there tho, if they were testing stuff with eugenic intent - trying to produce "improved" or "perfect" children, and a bunch of crips is the result... :o ;)

Had other things to say, but they've slipped my mind for now... I'm writing this in Word and intending to post it online tomorrow, because my internet is down for a couple of weeks, which is really fucking annoying. This is one of my (probably to be fairly frequent) "tangent" posts...

Autistics.org in urgent need of computer skills

OK, i don't know if anyone reads this blog, let alone anyone with the computer skills necessary, but i'm posting this as widely as possible just in case, because if autistics.org shuts down then the loss to the worldwide autistic community will be immense. Some of the writing hosted on that site has had such a profound impact on my life that it might even have saved my life, and it's not just the best, but possibly the only site that acts as a central "hub" for serious writing about autism (as well as a lot of non-serious, but still important, stuff) that challenges the medical model orthodoxy and actually tells it like it is...

Laura Tisoncik's statement, currently on the front page of autistics.org:

I give up (July 5th, 2007)

Ours is a community filled with computer geeks. I don't, properly, happen to be one. I'm a computer-literate political organizer. Yet somehow I've found myself having to decipher Bind9 (I can't), disentangle one mailsystem from another (something else I can't do), be the lead person on computer security (another subject way over my head) and lord knows what else.

That I can't do what I'm not trained to do and have little talent to do seems irrelevant to the rest of the community. The only problem they see is that I don't do what they want me to do -- that the scripts aren't running right, that they don't have feature X and feature Y, that they've been deprived of access to feature Z for a few hours while I go sleepless for days trying to figure out what is going wrong with Z, etc.

Well today I am declaring my independence from enslavement to this website. Either members of the community step up and do the necessary work so this website can go on without me killing myself trying to maintain it and so that I have a shred of energy left to do something I'm actually good at, or I will kill this server, this website, and everything else it hosts at the end of the July billing cycle (circa August 5th) and be done with autistics.org.

--Laura Tisoncik

The other story from a "Pillow Angel"

I have a lot more to say about the whole Ashley X story, and am planning to post in detail about it at some point fairly soon - but, quickly, i think this response by Anne McDonald is incredibly important, incredibly powerful and needs to be read as widely as possible...

Anne McDonald's website (edit: the links to her writing all now seem to be 404 errors... not sure why, i think i have seen her website and read some of her writing before... will try to see if it's online anywhere else...)

Human rights? What human rights?

I'm so utterly shocked and disgusted at this that i'm having trouble processing it...

It appears that "care homes" (Orwell must be spinning in his grave at that phrase) are exempt from EU human rights legislation if they are run by private companies rather than by the state: therefore, their residents effectively have no legally protectable human rights...

Now, i'm an incredibly cynical anarchist. I probably shouldn't actually be shocked at this. "Legislation Fails To Protect Poor People: Shocker!" But somehow i am. Possibly it's because one of the things i've had in my head for quite a while is that if "care homes" and similar institutions were actually assessed by the same "human rights" standards as, say, state regimes in African or South American countries, they would be exposed as guilty of violations that even a Mugabe or a Pinochet would have rejected as far too extreme to even get their armies to enforce. I don't believe there's ever been a state, however brutal, which has even tried to legislate when its citizens are or are not allowed to go to the toilet, for example.

Before i identified as a disabled person, i tried working in one of those places once (i did one shift). It felt like being a concentration camp guard. I still torture myself with guilt occasionally about having, even incredibly briefly, held a position of "staff" in such an institution. Thinking about that makes me feel like i have absolutely no right to be part of the disability movement.

I'm trying to piece together a more general political framework for this - it appears that, effectively, the Human Rights Act protects people's human rights against the state (seemingly including local government, so council-run institutions should still be within its orbit), but not against any non-state entity, whether charity, co-operative or corporation - so, anything that is not the state can violate people's human rights as much as it wants to, and have impunity as long as those violations are not technically illegal under any other law (and i bet that there are "exemptions" for institutions for disabled people from laws like those against involuntary detention, or false imprisonment, or whatever it's actually called (hungry, hungover, correct words eluding me)).

Something NEEDS to be done about this...

(really frustratingly, i've tried to send a message to the DAN mailing list about this, and some weird bug in my email program that keeps telling me i haven't filled in the "To:" field, even when i've put other addresses in it in addition to the group one, is preventing me...)

Also i think it's notable that, altho Bert Massie is quoted in the Guardian article, this is primarily presented as being about "elderly people" - who, it seems, are not "disabled" according to journalistic terminology, and all the younger disabled people in institutions might as well not exist... another example of the public perception that such institutions are effectively sopme nice, fluffy, "restful" natural-end-of-life thing, confined to one life stage, and not institutions for the oppression of whole sectors of the population, defined (regardless of age) by lack of certain (fairly arbitrary) mental or physical abilities.

Really really hungry. Losing coherence. Need to stop blogging and eat now...

post-food edit (i think i'll actually leave that last sentence in, cos it's sort of an impairment thing, and i find it amusing) - the other thing that has an interesting irony about this is that it's only come to the Law Lords when someone has been kicked out of a "home" - i.e., it was the eviction of the 83-year-old resident from the home that was the potential "human rights violation", not her having been put, most likely without her consent, in the "home" in the first place...