Disability, Gender and Horror in "Planet Terror" and "The Orphanage"

Note: this post contains spoilers for both films mentioned in the title. If you haven't seen either of them, and would like to see them without knowing what happens in them beforehand, then don't read this before watching them!

The Orphanage (original Spanish title El Orfanato), directed by Juan Antonio Bayona, and Planet Terror, directed by Robert Rodriguez, are two recent-ish horror films which, like many in the genre (but possibly more explicitly than most) contain strong disability themes. Both films, according to Wikipedia, originally came out in 2007, although i'm not sure if the UK cinema release of either was in 2007 or 2008; I have owned DVDs of both for several months, but only got round to watching them in the last couple of weeks, hence my reviewing them now. Apologies to Lisy and Tera for stealing their blogging turf ;)

The films are from opposite ends of the horror spectrum (Planet Terror is a homage to 1970s "exploitation" films, with an emphasis on gore, action, special effects and "rule of cool" characterisation, while The Orphanage is more of a supernatural/psychological "chiller", with quite an "arthouse" vibe (although it has to be noted that anything filmed in a language other than English and/or subtitled tends to get put into that category in the mainstream press, even if it's wildly inappropriate)), and they have extremely different visual styles. Nonetheless, there are several parallels between them; both were produced by a more famous director than those who directed them, and used that director's name heavily in marketing (Quentin Tarantino in the case of Planet Terror, and Guillermo del Toro in the case of The Orphanage). As well as the disability themes, both play to an extent on gender roles using female protagonists (conventionally or otherwise), and both can be seen (albeit through readings that may not necessarily correspond with authorial intention) as critiques of paternalistic medical and social "care" systems.

In Planet Terror, the main protagonist (played by Rose McGowan) is a sex worker who becomes disabled early on in the film, losing a leg as a result of a zombie* attack, and first gets a broken-off table leg as a makeshift prosthetic, then later (actually surprisingly late in the film for me, given it being the iconic image that was plastered everywhere of the film) gets her leg replaced with a machine gun, which she uses (rather implausibly, seemingly able to fire it by moving the leg stump alone - tho that fits in with the general over-the-top, stylised tone of the film, a Tarantino hallmark shared with the somewhat thematically similar Kill Bill) to massacre zombies and save the day, thus gaining power and purpose as a disabled person with assistive technology - in fact, becoming an effective saviour of humanity as implied by the ending - that she never had in her pre-impairment life, which, IMO, even if Rodriguez didn't realise it, is an audacious subversion of the usual disability tropes found in horror and action films (where disabled characters are nearly always either pathetic victims, mentor/mastermind types detached from the action, or monstrous villains/antagonists).

*Some purists may argue about whether the "zombies" in Planet Terror are actually zombies, as they are mutated by a virus rather than reanimated from the dead by supernatural means. However, they act like zombies, and even on the DVD cover Planet Terror gets described as "a kick-ass zombie movie"... so i'll call them zombies for convenience.



A secondary protagonist, a female doctor (played by Marley Shelton) at the hospital where the zombie plague is first discovered, is also rendered (temporarily) physically impaired by her abusive husband (who is also a higher-ranking doctor, played by Josh Brolin) when he finds out she is attempting to leave him, by injecting her hands with anaesthetic and paralysing them. Despite this, however, she still manages to escape from the cupboard he locks her in, get into her car, rescue her son and drive to her father's house, while fighting off several other antagonists along the way. Brolin's character is also portrayed as enjoying the power he has over his patients in a particularly arrogant and sinister way, and can be seen as representing the authoritarian nastiness of patriarchal medicine (one could even see Shelton's character as representing a more positive vision of medical professionals allied to their patients or the community rather than to "the system", or as a medical professional whose "switching sides" by becoming disabled herself parallels her decision to liberate herself and her son from the abusive family relationship). Brolin's character also ends up becoming one of the "infected" himself, linking his patriarchal and medical authority with the military-industrial conspiracy origin of the plague.

Thus, Planet Terror is, for me, that unusual thing, a relatively-mainstream horror movie that seems to be thoroughly and unambiguously on the side of the oppressed - unlike the many other horror films in which disabled or otherwise marginalised people, when they gain power, use it for evil and have to be destroyed, in Planet Terror they are the protagonists and use their power to save the world (and even survive at the end, where the male, non-disabled, martial arts expert protagonist dies!), while the establishment-upholding institutions (medical, police and military/government) are portrayed as corrupt, evil and monstrous. (thanks to Tera for that insight :) )

The Orphanage is rather more ambiguous. The plot centres around a couple with an adopted son who buy the former orphanage that the mother (played by Belen Rueda) grew up in, with the intent of re-opening it as a "home" for disabled children. Their son is himself disabled, albeit without knowing it at the start of the film, as an HIV-positive adopted child (it's implied by his appearance and some incidental dialogue, but not explicitly stated, that he was presumably adopted from an institution in a developing country, probably (given the Spanish-language setting) somewhere in Latin America - although this isn't really touched on in the plot), but his parents are keeping this from him "for his own protection". The boy's finding out about his impairment and his origin, however, lead into the supernatural events of the plot, involving the ghosts of children who lived in the orphanage in the adoptive mother's childhood, who eventually lead both son and mother to their deaths.



The villain of the film is a former care worker at the orphanage (with the highly ironic name "Benigna"), who turns out to have killed the other children whose ghosts haunt the orphanage, after they caused the death of her own facially disfigured son, Tomas. However, Tomas and the other children all seem to be working together as ghosts, with no sign of enmity or tension, which strikes me as something of a plot hole; I was expecting Tomas' ghost to be an antagonist because of a grudge against the other children. Of the other ghost children, one is stated to be blind, while another wears a leg brace, but their impairments are incidental to the plot. The disabled children for whom Rueda's character had intended to reopen the orphanage are only shown briefly (although it looks like actually disabled child actors were used for the parts, albeit probably more accurately described as "extras" than "actors"), and again not much is made of disability as a plot element here.

Overall, The Orphanage felt to me like a film which could have made much more of the themes of disability and institutional "care" which formed the backdrop to its plot than it did; I was expecting it to have a much stronger theme of the true horror inherent in a segregated and institutional setting itself (as well as more of a presence of the disabled children the protagonists were reopening it for). It's also a much less radical film in its treatment of gender roles than Planet Terror - it follows typical horror film conventions of "emotional" female characters being much more receptive to the supernatural than skeptical, "rational" male characters, of women's primary identity being as mothers protecting their children, and of the "caretaker" role (whether seen positively as nurturing or negatively as authoritarian oppression) as a primarily female one. (In this it can be contrasted with del Toro's earlier The Devil's Backbone, also set in an orphanage and featuring ghost children, in which it is an abusive male authority figure who is led to his death by the ghosts, who can be seen as (anti)heroic rather than antagonistic.)

Laura, the main protagonist of The Orphanage, in some ways parallels Dakota, the secondary protagonist of Planet Terror: both are mothers of sons of a similar age whose sons die in ironically tragic circumstances, both are temporarily physically impaired by the actions of an antagonist, and both have husbands or male partners who are oppressively scornful and dismissive towards them (albeit one portrayed as actually abusive, while the other is merely the standard supernatural film "disbeliever" or "skeptic" character). Both also have antagonistic counterparts (Benigna and Dr Block respectively) who personify the authoritarian paternalism of medical and social care that disabled people are subjected to. However, Laura herself, as a (presumably) fairly rich and privileged international adopter of a disabled child, who plans to open what is still essentially an institution for other disabled children, is open to criticism as the same sort of "do-gooding" paternalist. (It's a subtle but pleasing parallel that both Laura and Benigna separated their own disabled sons from the other children in the institution - also, Laura's own rise from orphaned/institutionalised origins to proprietor of the same institution could be seen as showing an assimilation process of oppressed people being socialised to imitate, and ultimately become, oppressors.)

Both Planet Terror and The Orphanage are visually stunning films, although they use extremely different visual styles. Both also have flawed plots, in which some events seem implausible even given the supernatural settings and certain elements do not (IMO) entirely satisfactorily hold together. Both, however, are recommended for critical viewing, although of the 2 Planet Terror is the one that i think is the most radical and positive in the way it presents disabled and otherwise oppressed characters.

I find it interesting that this is somewhat the opposite of how the subgenres of horror film that The Orphanage and Planet Terror are representative of generally tend to get percieved - the subtler, more psychological "arthouse horror" of The Orphanage being generally praised by more intellectual critics and seen as more "alternative" and for the more "aware" or "discerning" viewer, whereas the gory, effects-heavy "action horror" of Planet Terror (and the older "schlock" or "exploitation" films that it draws on for inspiration) tends to be seen as the sexist, anti-intellectual domain of macho adolescent boys, and as using minority stereotypes in crudely exploitative ways. However, here it's Rodriguez's "exploitation" horror (with its roots in pulp sci-fi magazines, circus freakshows and the like) which is ultimately more subversive and minority-positive than Bayona's "intellectual" work. (It's worth noticing that the disability arts movement has a long tradition of reclaiming and subverting exploitative "freakshow" imagery, with Tod Browning's classic film Freaks as an arguable antecedent).

What i would really love to see is a horror film with disabled protagonists played by disabled actors, with the themes of institutions and their lingering, haunting legacy as used (if not explored as deeply as they could have been) in The Orphanage, but with the style and attitude of Planet Terror. (I'm sure the likes of Mat Fraser and Nabil Shaban would be interested in such a project, if there was a director and finance to get it off the ground. While doing dream casting, i'd love to have Sarah Gordy playing a protagonist and Liz Crow playing some role in either producing or directing...) Now that would be a true successor to Freaks. However, in the absence of such an imaginary film (and the extreme unlikeliness of anything like it ever happening), Planet Terror and (to a slightly lesser extent) The Orphanage are both above average for "mainstream" cinema, and worth watching for anyone with an interest in either "genre" films or in disability and its intersections with other oppressive systems...

What would/could personal assistance look like in a mutual aid society?

I've been meaning to blog about this for a long time, but have been prompted into finally posting by the discussion involving Anarchafemme, Foibey and myself in the comment thread on this post at Anarchafemme's blog, which was getting quite a considerable distance from the original post topic, so to avoid derailing it any further, i thought i'd better at least make a start on the topic here. There's no way that this post is ever going to cover all of my thoughts here, but it's a start...

Background first: for almost a year now, i have been working as a PA (Personal Assistant) for a fellow disability rights activist with a physical impairment. There have been, and still are, various ongoing tensions within that working relationship, but those aren't (directly) the subject of this post, and it's still, by a long, long way, the best job (in terms of waged work) that i've ever had. In many ways, it's arguably the best possible job for an anti-capitalist - it doesn't benefit any oppressive corporation or state agency, it's effectively using money from the welfare state to sustain activism, and it (genuinely and directly, unlike so many other jobs in government departments or charities/NGOs that claim to do so) empowers and liberates oppressed people. It's also a job which does not require any particular educational or professional qualifications, and in which having experienced barriers to more "mainstream" employment is arguably actually an advantage (because members of oppressed/discriminated-against groups who tend to have such barriers are more likely to get the point that this job is about enabling and liberating, not controlling, patronising or "care-taking").

The paradigm of disabled people directly employing PAs, however, while being a major part of the Independent Living movement (a movement that i would argue is possibly the only minority liberation movement that is inherently both libertarian and socialist - but that's something i'll have to save for a future post) is one that is rooted in hierarchical and capitalist social structures of wage-work and the employer/employee relationship. Is there a contradiction here?

The employer/employee model of personal assistance comes from the concept developed by the disabled people's movement of "independent living" as not meaning "doing everything for oneself", but "having choice and control over one's own life" - a concept which, IMO, is the only concept of "independent living" which makes any sense in any modern context, as no human being in any present-day society (and possibly at any time in human history) is entirely self-reliant, but we are all interdependent on one another. This means, then, that being physically (or otherwise) impaired does not in itself prevent a person from being "independent", but it is social structures and policies that prevent people with personal assistance needs from having control over when and how they recieve that assistance that do prevent them from having "independence" in the choice-and-control sense (for one of many excellent articles on that topic, see "What's So Great About Independence?" by Sally French here).

This is libertarian in that it puts the freedom of choice of the disabled person over what happens to their own body and in their own life as the highest priority, and socialist in that paying for it is seen as the whole of society's, not just the individual's, responsibility - but where does it fit in with the anarchist/anti-capitalist/libertarian-socialist critique of the whole concept of wage work and employer/employee relationships?

Generally speaking, the anarchist vision of a world based on equality and mutual aid is one without any hierarchical relationships between (adult, at least) human beings - but the relationship between a disabled employer and hir PA is inherently hierarchical, and it's hard to see how it could not be without compromising the disabled person's autonomy. For anarcho-communists (which i would loosely speaking consider myself... although some anarcho-communists might disagree, and i generally prefer "anarchist without adjectives") at least, Utopia also doesn't have such a thing as money (as all production of goods is for need rather than for profit or exchange-value, and everything is shared freely) - but this also raises issues in relation to PA work, because of the issue of motivation...

In a "free" or "autonomous" society, in most anarchist visions, the motivation for any kind of work is either that the person doing the work enjoys doing it, or that the work needs to be done - in contrast to the "heteronomous" work that dominates existing capitalist society - work that is done not out of either need or desire to do the work itself, but because of a secondary motivation, namely the payment for doing that work - thus, people work in factories producing goods that they neither consume nor want to consume, or in administrative jobs that would have no purpose at all in a free society, because they need the money, leading to alienation (which is not seen exactly the same way in an anarchist as in a Marxist critique of capitalism... but, for now, close enough).

In PA work, however, the heteronomous nature of the work is arguably a good thing, because the fact that PAs' motivation for working is financial need creates a relationship that is co-dependent rather than one-way dependent - the PA needs hir job for the income as much as the disabled person needs the PA to get hir embodied needs met. This, however, only works in a capitalist wage-work system - in a moneyless anarcho-communist society (such as Anarres in Ursula le Guin's The Disposessed), where the motive for work is its necessity of the work itself rather than financial gain, I think there would be a significant risk of the PA/employer dynamic that currently liberates disabled people by giving them choice and control would be lost - it would be easy to fall back into a patronising "do-gooder" dynamic, where only the disabled person needs the personal assistance, meaning that the PA would be acting purely altruistically or as a "favour" to the disabled person. For many disabled people, that would be unacceptably like the paternalistic charity model, with disabled people expected to be the passive and grateful recipients of altruistically given "care", rather than in charge of their own assistance, which, in the currently existing model of PA work, their position of authority and financial power as employers allows them to be.

It could be hoped that in an anarchist society, with an explicit ideological commitment to opposing all forms of "power-over", the power of providers of assistance over dependent disabled people would be recognised as such and a paradigm based on rights and solidarity could be created to try to overcome that - but it still makes me feel slightly uneasy, because i strongly suspect it's inherent in human nature for those providing necessary assistance to others to feel that they should get some sort of "reward" in return, whether money or the praiseworthy status of "do-gooder" and the gratitude and subservience on the part of the recipient that comes with it... and also, even in anarchist circles, i have known too many people who have accepted paternalistic attitudes to disabled people all too easily (including several "anarchists" who have worked as "carers" in institutions, apparently without having the slightest idea of their jobs as being those of oppressors).

(This is, to an extent, also about intersectionality, and the fact that the disability rights movement has, at least in the UK, existed fairly separately from other new social movements and wider critiques of the statist/capitalist system, while the wider anarchist/anti-* activist movements have almost entirely failed to address disability issues...)

This post is not so much laying out any answers as asking questions and inviting debate - so i'd be particularly interested in replies from anyone who has any ideas about this (especially, in fact, from PA users). Does a model of personal assistance that is liberatory for disabled people only work within a capitalist wage-work system (where work is defined as "heteronomous production of exchange-values", as Andre Gorz says in Farewell to the Working Class), or can it transcend that system? Can disabled people with personal assistance needs be assisted effectively without depriving someone (either the disabled person or the PA) of autonomy? (Or should the employer/employee relationship between disabled person and PA be seen as "depriving" the PA of autonomy? Perhaps it could instead be seen as a form of consensual power exchange, similar to that found in some BDSM sexual relationships?) Is there a "3rd way" possible here, that is neither paternalist nor capitalist?

If we are to have a fully "joined-up" anti-oppression politics, these questions need to be addressed, regardless of whether they can be decisively answered. Anyone up for tackling them?

Biodiversity in the City #2: Dove

I had intended to do a "proper" post today, but ended up expending most of my writing spoons for the day on other things (emails to a few friends, partly inspired by cripchick's Habit Forming Love posts) - but wanted to post something, so thought "hey, another animal picture post will do"...

As with the last one, this is an unusually-coloured bird; this time, a Collared Dove.

I took these photos some time last summer, with my old camera, so they're not particularly great quality, but not absolutely terrible either. Collared Doves are pretty common around Birmingham, but when i saw this pair, i instantly thought "that one looks an odd colour"...



The dove on the right is the "normal" colour for a Collared Dove; the one on the left, however, is considerably lighter, almost white. It isn't an albino, as can be seen in the next photo, in which it clearly has the dark collar which gives the species its name (an albino would be uniformly white all over), so i guess it must be some sort of leucistic. (Random thought: would the paleness of European humans, particularly blonde and blue-eyed ones, be considered to be leucism relative to the "average" pigmentation of the human species worldwide?)





I also considered the possibility of it being a hybrid between a Collared Dove and a feral pigeon, but a bit of searching found a photo of a hybrid between a domestic pigeon and a Ring-necked Dove (which is almost identical to the Collared Dove) here (about 3/4 of the way down), which doesn't look anything like it, so i think this bird is a "pure" Collared Dove, just a mutant one with an odd colour.

The Collared Dove has an interesting history, in that it's one of the very few birds to have naturally expanded its range (rather than being introduced by humans) across a continent. It was unknown in Britain before 1953, being regarded as native to Asia and just reaching into the easternmost parts of Europe, but for reasons unknown started spreading westwards, and is now a common and familiar British bird. A white dove traditionally symbolises peace; i think this bird is a fitting symbol of a multicultural city with a long history of immigration and people living in it from all over the world, including particularly large communities from several of the countries where this species of bird also originated from... Biodiversity in the city is both human and nonhuman, and they (sometimes metaphorically, sometimes literally) feed one another.

Can You Tell This Child Is Autistic?

(Yes, i know i said in my last post that i was aiming to write something every day in May, and it's now the 8th and i haven't. My internet went down on Sunday night, and i didn't get it back until yesterday. I've also written a couple of things that weren't public blog posts. Anyway, this is the post that i had *intended* to do on Sunday night, before my mysterious (but luckily easily fixable) cable fault...)

My parents recently gave me a memory card for my digital camera (among other things) for my birthday. On the card were various sets of old photos that my dad had either taken with his camera, or scanned in from old pre-digital photos, one of which was a set of photos of me and my brother as children. I'm absolutely terrible at guessing children's ages, but i would guess that in these photos i look about 10 and my brother about 3, which dates them at round about 1992...

The thing that most strikes me about these photos is that, even if it wasn't me (and i'm not sure if i look at all recognisable as the same person as me now at a long-haired and bearded 27), i would be instantly sure from looking at them that the older boy was autistic. I'm not sure exactly what would bring me to this conclusion, but i think it's some combination of posture, facial expressions, and just possibly an actually physical "look" that i've noticed many (although by no means all) autistic people i've met have (something i'll probably get round to writing about in more detail reasonably soon).



(Yes, this is the sort of sitting position that i felt comfortable in as a kid. I also liked, up until i was at least 13 or so, to sit with my legs crossed in a very stereotypically "feminine" way, right thigh over left thigh or vice versa. I only stopped when i was taught in no uncertain terms at secondary school - when i was just starting to try to have friends and be accepted by other children - that it was unacceptable for a boy to do. It utterly puzzled me though, and still does really, what was/is gendered about that (well, i know physical anatomy, but still, sex != gender)...)



I also think this is a very "autistic" hand position... though i'm not quite sure why...



This was another typical pose for me. Although it was before i started having weird things going on with my joints, i wonder if the positioning of my right foot there does have something to do with my right ankle being one of the joints i get the most weird flexion and "clicking" with now.

(If anyone's wondering where the photos were taken... i think it was most likely Sherwood Forest, hence the Robin Hood caps. However, it also could have been the New Forest in Hampshire, as we stayed at my aunt's house there for a couple of weeks every summer for most of my childhood.)

Here's one of me sitting in a tree:



While i'm not sure there's anything particularly "autistic-looking" about me in that photo, it does show something of the expression i very, very often had (and occasionally still have) in photos, which got/gets misinterpreted as "fear"; in a couple of my school class photographs, i have been told that i stand out immediately from the (identically dressed) group of children because, to NT eyes, i look utterly terrified. For a long time i really hated photos of myself because they seemed to show, blatantly and undeniably, the "wrongness" of my facial expressions, which i was constantly trying to convince myself i was going to "overcome", while of course not really knowing what it consisted of either - it's only in the last few years that i've really got over this and started to find photos of me tolerable to look at.

This one was taken in my back garden at my parents' house, and i think makes me look particularly autistic:



The facial expression, the pose and the very stereotypical "acting out" of an "appropriate" emotion towards a fictional enemy (as i recall, the figure on the chalkboard was a henchman of the Sheriff of Nottingham who we had been practising firing our bows and arrows at - probably a few days after going to Sherwood Forest) - and indeed the fantasy play based on a recently visited location - all strike me as *very* typical of the autistic spectrum.

Also note what i was wearing - as a child, i had major sensory issues with clothing, and only found a very small range of clothes comfortable enough to be tolerable wearing. I don't think i ever stripped myself naked in public (i was too sensitive to cold for that), but i remember ripping my school uniform off as soon as i got through the door, finding it *very* difficult to cope with wearing a tie (something i still think is one of the most utterly pointless things ever invented, and its mandatory presence as "professional wear" in the majority of corporate offices is one of those things that just makes me go "WTF is this world?"). Outside school, the only trousers i would wear were these "tracksuit bottoms" - which were made of a very soft material and had elastic or a drawstring instead of a zip fly, meaning they had to be pulled all the way down to use the toilet (another thing that, therefore, had gendered stigma as well as disability stigma in schoolboy culture). Again, once in secondary school, i tried to wear jeans after finding out that wearing tracksuit trousers was "not normal", but found them horribly uncomfortable (although some of my sensory issues lessened a bit around that age).

(I finally threw away my last pair of jeans a couple of years ago, after realising that i had owned them for about 8 years and hadn't worn them in about 5, after discovering a perfect solution in the form of the "combat" style trousers i now wear pretty much exclusively, which are comfortable, practical (i now couldn't live without the side pockets, giving me 4 pockets per pair of trousers, as opposed to the 2 of most jeans and "formal" trousers) and, as far as i can tell, lacking in particular stigma.)

The stigma attached to those trousers is something i should perhaps explain, as it might be a strictly UK thing, i'm not sure. (It also might have been stronger in the 90s than now, again i'm not sure.) If a child over about 8 was seen wearing those sort of trousers, then they either had "something wrong with them", ie they were "retarded" or "mental" or "not all there", or indeed just "weird", which was a bit of a cover-all, or else their parents were too poor to afford to buy them "proper" trousers, which in the intensely disablist and classist (although not at all aware of either of those terms) world of suburban children in the 80s and 90s (and probably now, although i don't have direct observations) amounted to much the same thing - an acceptable target of taunting and bullying. An adult wearing that sort of thing would definitely be seen as having "something wrong with them", to the extent that they were seen almost as a symbolic uniform of learning disability (with attendant stereotypes about institutional living, incapability of achieving "independence", etc) - someone who wore them either did not choose their own clothes, or was so oblivious to norms of clothing choice that they had to be "not all there".

(There is a whole load of other stuff i could spin off that, about clothing, disability, stigma and more, but i don't have time right now and it probably deserves a post of its own...)

Anyway, i've strayed from my main point. As a child, as far as i know, I did not have any diagnosis of an autism spectrum disorder (and i was sent to several different child psychologists, and the subject of a huge amount of (mostly negative) "concern" about me, despite my very high academic achievements, for my complete lack of social integration with other children throughout my primary school years) - yet, looking back, it seems almost impossible that anyone, with even the level of familiarity with autism that most people in the general population now have simply through the mainstream media, could have observed me for more than a couple of minutes without identifying me as autistic. I had practically every stereotypical characteristic of autistic children, including many that tend to be regarded as unfair and erroneous stereotypes (which always makes me feel a bit awkward when they are discussed as such, because i want to say "er, as a child i actually was that") - a total lack of interest in or emotion about other "real" human beings (while having incredibly intense attachments to fictional characters), dozens of sensory intolerances, including refusal to eat the vast majority of foods and finiding nearly all human touch intolerable, meltdowns involving uncontrollable crying and attacking other children, selective mutism, obsessive memorising of facts and figures about narrow topics of interest, hand-flapping (i recall my mother telling me at about 8 "don't do that with your hands, it makes you look like a spastic"), pronoun confusion - you name it, i had it, basically... yet, AFAIK, autism was not even mentioned in reference to me throughout my childhood.

Why this was, i have utterly no idea. I have often wondered how much different my life would be if i had been diagnosed as autistic in childhood - on the one hand, i wouldn't have spent so long living in denial, confusion, self-hatred and paranoia, thinking "what the fuck is wrong with me, and why won't anyone explain to me all these things that everyone else seems to understand perfectly naturally, and yet somehow i don't?", i possibly wouldn't have alienated so many people who i tried and failed to be friends with and ended up offending or turning against me for reasons i couldn't comprehend at all, i probably wouldn't have got sucked into some of the profoundly unpleasant ideologies i spent much of my teenage years in, and things within my family very probably wouldn't have been as fucked up as they were (in ways that were not exactly anyone's fault, although i spent a long time blaming my parents and a longer time blaming myself for much of it) - but then, if i had been diagnosed as a child, would the educational ambitions my parents and teachers had for me have been "downsized"? Would i have ended up in some sort of "special" school instead of the selective-by-educational-ability grammar school i did end up in, and would i have had the ambition to go to university? Would i be a part of intellectual community now? More generally, would i have had the sustaining belief that i could, or at least had the right to, be as independent and achieve as much as any neurotypical person, or would i have "accepted" my inability to know what was best for myself? Would i have been better off with a better knowledge of my own limits, or was my lack of understanding of those limits at certain crucial stages of my life necessary? I strongly suspect, therefore, that while some aspects of my life could well have been much better with an early diagnosis, other aspects of my life could well have been much worse, and, of course, it would be impossible to ever fully know.

So, i'm interested in what other people on the spectrum, or people with friends or family members on the spectrum, think of these photographs - when you look at them, do you instantly see an autistic person? If someone whose child you hadn't met showed you those photos, would you guess that the child was autistic? And, more generally, do you think autistic people can reliably identify other autistic people by looking at them? (As an adult, i have been told both that my "Aspie mannerisms" were obvious before i said anything about my diagnosis, and that me saying i had an AS diagnosis was surprising because it "really wasn't obvious". I actually think i have become somewhat more obvious in the last few years, since discovering autistic community, because many of the semi-conscious ways of repressing my natural mannerisms and imitating neurotypical ways of moving, facial expressions, etc have "worn off".) And did anyone else who was diagnosed as an adult have similar experiences of finding it hard to believe they were never diagnosed as a child, because it was really obvious?

I need to write some stuff about diagnosis and labelling more generally, but i think that's an interesting discussion starting point. (Also, credit is, i think, deserved to AnneC of Existence is Wonderful for partially inspiring this with a post based around photos of and by her at a similar age...)

I won't be posting tomorrow or Saturday because i'm off to London for a conference and a friend's birthday. But i will hopefully have time to post daily-ish for the next week or so from Sunday...

Disability Terminology: too much confusion, so much frustration (for BADD 2009)

This was meant to be a post for Blogging Against Disablism Day 2009, but as it will almost certainly be after midnight by the time it's posted, it might not (officially) be. Also, as quite a few other unwanted and stressful things have happened to me today, it might be a bit disjointed, as i've expended quite a few more communication spoons today than i was hoping to have to... so i may try to revise it a bit afterwards.



The topic of this post was prompted by a conversation the other night: the language of disability and disability oppression, and how frustrating the contradictory and overlapping usages can get, especially when the international status of English as a language is involved. "Disablism" itself is a case in point...

"Disablism" is primarily a UK usage (although i think i have seen some people from the US using it). The corresponding word used most of the time in the US is "ableism" - as, for example, in this recent post by anarchafemme. (I'm not sure about what's common usage in other English-speaking countries, but searching Canadian Elizabeth's blog gets results for "disablism" but none for "ableism", whereas searching Australian hexy's blog gets the opposite... so, Canada as UK, Australia as US?) This is somewhat confusing, especially for the literally minded, as those two words look like they should mean the exact opposite of each other - but are used to mean (roughly) the same thing.

Last year for BADD, Lisy Babe explained her reasons for preferring "disablism" over "ableism" - which at first i fully agreed with, but then i read this comment and found the argument in the opposite direction there equally convincing... so, bleh. I think i will stick with "disablism" simply because it's the generally accepted usage in both academic Disability Studies and disabled activist circles here in the UK, rather than out of any strong ideological preference one way or the other.

I have much stronger preferences about the "correct" usage of the term "disability" itself. In fact, i think misleading or ambiguous usage of the terms "disability" and "disabled" is one of the biggest barriers to a wider cultural understanding of disability issues and to the recognition of disabled people's oppression (whichever term you use for it) as a "valid" oppression, real and analogous to racism, sexism, homophobia, transphobia and the rest of them. (Although, of course, as i've said before, all those oppressions also routinely get not treated as "real" or "valid", and "last acceptable prejudice" rhetoric is, IMO, not helpful.)

(Another aside here - there really isn't consistent usage in English for naming oppression. We have words ending in "-ism", like racism and sexism, which is a widely recognised enough construction that more recent coinages like "sizeism" and "ageism" are easy to understand as analogues, and then we have words ending in "-phobia", like transphobia, homophobia and xenophobia (which overlaps with, but isn't quite identical in meaning to, racism), which is also well-known enough that analogous coinages like alterophobia are reasonably easily understood - this despite the fact that most other words ending in "-phobia" describe irrational fears or aversions that have nothing to do with oppression or prejudice, and of course there are dozens of different types of constructions with the suffix "-ism", ranging from political ideologies (anarchism, socialism, libertarianism, nationalism, etc) to medical-originated words for impairments or physical conditions (autism, albinism, dwarfism, etc)... and then there are debates about whether the better word for prejudice against women is "sexism" or "misogyny" (which introduces a third "mis-" construct, tho the only words i can think of right now using it are "misogyny" and its counterpart "misandry"), etc. So arguments for using either "ableism" or "disablism" based on consistency don't work either way. It would be an interesting thought experiment as to whether understanding of prejudice and oppression in the English-speaking world would be better if the terms for it were all analogous and consistent...)

For a start, there's the often-misunderstood distinction between "disability" and "impairment". In UK activist usage - deriving primarily from the social model of disability as developed by socialist disability theorists such as Colin Barnes and Mike Oliver in the 1980s - "impairment" is the word used to describe a difference in body or brain resulting in it functioning differently from a "normal" person's (eg. autism, cerebral palsy, a spinal injury, bipolar depression, a missing eye, a missing leg, etc), whereas "disability" is used to mean the social disadvantage resulting from society's failure to accommodate that difference (eg, "not being able" to access public transport due to lack of wheelchair access, not having access to books because they are not published in audio as well as print editions, being "unable" to communicate one's needs effectively due to social assumptions about verbal and nonverbal communication, etc). In practice, however, because the social model isn't widely understood (or even heard of, even sometimes among disabled people), the word "disability" very often gets used to mean "impairment" - someone asking of a person "what's your/hir disability?", for example (and expecting an answer of, say, "muscular dystrophy" or "spina bifida").

To make things worse, internationally the usages conflict and contradict one another - for instance, i've often seen it stated that the "standard" US usage is to use "disability" for what we in the UK would use "impairment", and "handicap" for what we would use "disability". From what i've observed online, the usage in the US disability rights movement is actually rather mixed - some use the "disability/handicap" terminology, but a possibly increasing number (especially, i think, of younger activists) use the "impairment/disability" terminology. I have seen attempts to synthesize the conflicting usages by trying to develop a 3-layered terminology, in which "imapirment", "disability" and "handicap" all have distinct and defined meanings - however, i'm not sure precisely what those distinctions are where such terminology is used.

(Edit: i found here the World Health Organisation's definitions:

'An impairment is any loss or abnormality of psychological, physiological or anatomical structure or function; a disability is any restriction or lack (resulting from an impairment) of ability to perform an activity in the manner or within the range considered normal for a human being; a handicap is a disadvantage for a given individual, resulting from an impairment or a disability, that prevents the fulfilment of a role that is considered normal (depending on age, sex and social and cultural factors) for that individual'. - so, for me, both what the WHO calls "impairment" and what it calls "disability" would fall under "impairment".

The extent of the confusion is made even clearer by the fact that the "About us" page of that website uses both the phrases "handicapped people" and "people with disabilities" - to describe the same people... i'm not even going to get into the "people with" debate here...)

Something i find both politically important, and often useful in explaining social model usage, is that the word "disabled" is not, linguistically, an adjective, but instead the past tense of a verb - "to disable". Therefore, in phrases like "disabled people", the word "disabled" does not refer to an inherent characteristic of a person (as an adjective relating to impairment, such as "autistic people" or "blind people", would), but implies that we are people who have been disabled - it describes not us but what society has done to us. Thus, it's analogous not to, say, "black people" or "female people", but to "people oppressed by racism" or "people oppressed by sexism". In fact, because of this, some people have argued that "disablism" is actually a redundant term for describing oppression, and that oppression should simply be termed "disability" - or, perhaps more accurately, and as used by Mike Oliver in his most famous book, "disablement".

(It's also interesting that, in early-modern works of political theory that i read in the first year of my politics degree, by the likes of Jeremy Bentham and John Stuart Mill, phrases like "the disabilities of women" were common, referring to legal and social disadvantages, which could be seen as using the term "disability" in a completely social-model sense, centuries before the fact and without even any reference to impairment...)

Then comes the categorising of impairments, and terms get even more confusing. Generally speaking, "visual impairment" and "hearing impairment" are pretty universally accepted terms - i don't think i've ever heard anyone use the phrase "visual disability" or "hearing disability". However, "physical impairment" and "physical disability" both seem to be used pretty commonly and almost interchangeably (although use of the former rather than the latter may, tho it doesn't always, indicate a slightly higher level of understanding of the social model and the difference between impairment and disability - it's still not uncommon, even in disability activist circles, for people to say "ze has a physical disability" or "hir disability has got worse", tho).

When we enter into the field of mental impairments (and even the umbrella phrase "mental impairments" is regarded as an unacceptable usage by some), it almost totally breaks down. The term "impairment" is almost never used in reference to mental health/illness - the only people i have heard use it in that context being people with mental health conditions who are/were involved in pan-impairment disability activism/disabled community, and more often than not had other impairments as well.

There is a huge and hideously complex debate around whether the term "learning disabilities" or "learning difficulties" is the more appropriate one, yet, strangely, i have practically never heard anyone seriously suggest the use of the term "learning impairment" - even though that would seem to me both to be much more consistent with the social model and to have the advantage of more obvious analogy with "visual impairment", "hearing impairment" and "physical impairment". None of the reasons i have seen given for the preferential usage of either term over the other have seemed convincing - a typical example is People First's reasons for using "difficulties" rather than "disabilities", which seems to me to be composed pretty much entirely of non sequiturs. ("Learning disabilities" and "learning difficulties" both also seem to be used almost exclusively in the plural, even when referring to a single person, which i don't really undertstand the reasons for.)

There also seems to be argument and disagreement over who is covered by the category of "learning disability" - sometimes, especially in the US, it seems to be used primarily to cover people with conditions such as dyslexia or dyspraxia (which in the UK are categorised as "specific learning disabilities, with seemingly an emphasis on the "specific" to avoid association with the more-stigmatised category of "learning disabled"), whereas the general assumed category in the UK is people who have "generalised" intellectual or cognitive impairment (if that even truly exists, and hasn't been shown, like IQ, to be a false category, or broken down into distinct and discrete syndromes or conditions - i mean the type of cognitive impairment that, for example, most people with Down's syndrome tend to have). "Cognitive impairment" and "intellectual impairment" are also ambiguously used phrases, and i still haven't really got a clue what "developmental delay" means - although i know that "pervasive developmental disorders" covers autism and related conditions, and "developmental disability" seems to be another primarily-US term with apparently about the same meaning as "learning difficulty" (as used by People First UK and those who follow their scheme of definitions).

Then there are the members of various impairment groups with their own identity politics who don't want to be identified with the term "disabled"; the 3 impairment groups i am most aware of this happening with are autistic people, deaf people and dyslexic people (although i am sure it happens in other groups as well - i'm aware of something parallel in the mental health system survivors' movement, for example). This often comes from a lack of understanding of the meaning of the term "disabled" in the social model of disability (or sometimes a grasp of the social model, but only with relevance to the disability experienced by one's own impairment group, and not by any others), but can also come from attempts to define one's own biodiversity as not impairment; proponents of deaf culture, for example, argue that they are not a group defined by impairment or disability, but a cultural and linguistic minority (which, it has to be said, many other people with hearing impairments or dual sensory impairments are strongly opposed to). Similarly, certain parts of the autistic rights movement insist that autism is not an impairment, but a "neurological difference" (which can have the effect of alienating autistic people who do experience aspects of their autism as impairing - i've somewhat covered this before, but need to cover it in more detail). I'm aware of several universities in the UK who have student groups with titles like "Disabled and Dyslexic Students' Forum" or services for "students with disabilities or dyslexia", because so many dyslexic people do not identify as "disabled", or object to dyslexia being categorised as "a disability".

There is a part of me that feels that the terminology we use to refer to concepts doesn't really matter, as long as we understand the concepts themselves and are able to work together despite linguistic differences on achieving the same goals in our activism; this part of me is reinforced by my knowledge that all language is ultimately arbitrary anyway (trace etymologies back as far as you like, and still eventually, except perhaps in cases of onomatopoeia, you'll end up with a word with no inherent link between its sound or the shape of its letters and the thing it describes). There is, however, another part of me that feels that, arbitrary in origin as it may be, the use of the "right" language is important, both because language shapes meaning, and because, if we don't have the same understanding of language, then arguably we can't have the same goals in terms of action, because we will percieve the same stated goals differently (and people who think they are working together on the same thing may end up actually working for very different aims, because their interpretations of the same conversation were different due to their different understandings of the meaning of crucial words). Alliances have both been well-intentionedly but naively formed between groups with opposite aims (eg. "user-led organisations" formed by people with very different definitions of who constitutes a "service user") and have been broken between groups who really ought to be working together if they want to get anywhere because of this.

I don't have any answers here, or any suggestions about which terminology i think people should use (although i do have terminology that i prefer to use, and i think in some cases there's only one viable alternative to ensure mutual understanding, eg. in the academic world of Disability Studies where the works of Barnes, Oliver, et al are foundational texts). Just like with the gendered pronoun issue, any particular usage i could propose almost certainly wouldn't catch on anyway. I do think, tho, that even though "playing with words" is often seen as something trivial and detracting from the true struggle, and "semantics" is used as a derogatory term to invalidate arguments, if we are to be successful in fighting against disablism then we have to be clear among ourselves, and able to easily explain to others, what it means...