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...