Language and disability
Mar. 9th, 2016 11:06 am![[personal profile]](https://www.dreamwidth.org/img/silk/identity/user.png){kind=small}
livThere is quite a lot of controversy about what language is appropriate to use for discussing disability. In terms of talking about people, the obviously polite and ethical thing to do is to refer to people using the terms they prefer, and not impose other ones on anyone for any reason. But I'm quite often talking generically, or talking about a stranger whose preferences I don't know. Currently my default is to say people with disabilities and related language, except when I know that a particular individual dislikes this "person-first language". My default is the other way round for a few specific conditions where I know that person-first language is generally unpopular in activist communities, so I'll say autistic people and D/deaf people, not *people with autism or *people with hearing loss.
However, I'm seeing increasing pushback from disabled activists against person-first language, and I'm thinking it's maybe time to switch my default unless I know that a particular individual prefers person-first. Note I'm not considering this in response to obviously rubbish criticisms of person-first language; "it's politically correct" is not a reason to reject person-first language, I would far rather be politically correct than be the kind of jerk who thinks that calling people by terms they find insulting is taking a brave stand for free speech. "It's all too complicated and you can't win" is also a reason that holds no weight with me, it's my responsibility as an abled person to go out and learn what language is appropriate, and yes, that changes as people's conceptions of their identities shift, and it's different in different contexts, but that's not something for me to whine about. But when actual disabled people are saying that they don't like person-first language, that they find it patronizing or insulting, that's a reason to change, despite carefully cultivating the habit over many years because I believed it was respectful.
One of the reasons that's often given why one shouldn't use person-first language is that it's an American, not a European convention, and that it's based in the medical model of disability. If I'm talking about a person with a disability, it sounds like I'm saying that they're a person who has this unfortunate thing wrong with them. Rather than someone who may strongly identify with their condition and as disabled in general, and someone who is disadvantaged, disabled, by a society that values normative bodies at the expense of everybody else, which is what social-model following disability activists would prefer me to convey. This doesn't ring true to me because I first learned about person-first language from people who are definitely British and definitely passionately committed to the social model of disability and to disability rights activism, the same people who taught me the principle / slogan
So I was very interested to see this blog post by Andrew Hickey: On person-first and disability-first language. In particular, Hickey says
So it's possible that the story that person-first language means medical model is a bit of a myth, but in lots of ways that doesn't matter. It's perfectly reasonable for people to decide how they want to be described, and for that to vary in different times and situations and so on. "I/we prefer disability-first language" is a sufficient reason all by itself. But people feel like they have to have a justification to ask abled people to change our language, leading to the emergence of folk etymologies about why person-first language is insulting. It's a similar process with handicapped, which at some points in history was the polite, PC term for what we would now call disabled. Many people now believe that handicapped comes from "cap-in-hand" and refers to disabled people asking for charity and handouts. That's factually not true, that was never the etymology, and the term was chosen in an attempt to be respectful by analogy with sports handicapping – you don't think worse of a jockey or a golfer with a higher handicap than their competitors. But lots of people believe it, and what is true is that it's generally a disrespectful way to refer to PWD nowadays. Basically because it's associated with an era where disabled people were segregated away from society and that might have been done with good intentions initially but segregation and institutionalization inevitably lead to cruelty and abuse.
And yes, it is a bit of a euphemism treadmill. New terms are coined by activists, and they are taken up initially by people who are trying to support disabled folk, and eventually by pretty much everybody, but if underlying attitudes don't change, the new term becomes an insult in its own right. But that's not a problem with the activists coining the terms in the first place, and it's not a reason to insist on language which is now outdated and considered offensive.
Hickey's post is really nuanced, and has provoked some really great discussion in the comments about the subtleties of both disability-first language and the cure narrative in general. It's also provoked an absolutely stereotypical angry abled guy complaining about he feels alienated and intimidated by all the infighting over terminology and he'd rather stay away from communities of disabled people altogether because he's scared of offending people. I'm trying very hard not to be that guy. It's complicated not because disabled people are being deliberately mean and excluding us TABs, or because they're having pointless petty fights about details that don't matter, it's complicated because this stuff actually is complicated and there isn't one straightforward answer.
However, I'm seeing increasing pushback from disabled activists against person-first language, and I'm thinking it's maybe time to switch my default unless I know that a particular individual prefers person-first. Note I'm not considering this in response to obviously rubbish criticisms of person-first language; "it's politically correct" is not a reason to reject person-first language, I would far rather be politically correct than be the kind of jerk who thinks that calling people by terms they find insulting is taking a brave stand for free speech. "It's all too complicated and you can't win" is also a reason that holds no weight with me, it's my responsibility as an abled person to go out and learn what language is appropriate, and yes, that changes as people's conceptions of their identities shift, and it's different in different contexts, but that's not something for me to whine about. But when actual disabled people are saying that they don't like person-first language, that they find it patronizing or insulting, that's a reason to change, despite carefully cultivating the habit over many years because I believed it was respectful.
One of the reasons that's often given why one shouldn't use person-first language is that it's an American, not a European convention, and that it's based in the medical model of disability. If I'm talking about a person with a disability, it sounds like I'm saying that they're a person who has this unfortunate thing wrong with them. Rather than someone who may strongly identify with their condition and as disabled in general, and someone who is disadvantaged, disabled, by a society that values normative bodies at the expense of everybody else, which is what social-model following disability activists would prefer me to convey. This doesn't ring true to me because I first learned about person-first language from people who are definitely British and definitely passionately committed to the social model of disability and to disability rights activism, the same people who taught me the principle / slogan
nothing about us without us. But I don't want to say, you, disabled person, are wrong and I know better because I have some peripheral association with the mainly academic bits of the disability community.
So I was very interested to see this blog post by Andrew Hickey: On person-first and disability-first language. In particular, Hickey says
And an important thing to note is that person-first language was drilled into everyone in mental health services, disability services and so on, at least in the UK and I believe elsewhere, from about 1990ish onwards.And that makes more sense of why I think person-first language is respectful but many of my disabled / neurodivergent etc friends and activists on the internet don't think so. I think what happened is that historically, activists, very much including in the UK, pushed for person-first language, and they were successful, such that it was adopted by, well, people who provide medical and caring services for PWD. So I can see how this came to be associated with the medical model; in fact, many service providers are committed to the social model (it's certainly what we're teaching the medical students, for example), but since in fact their role WRT disabled people is to provide care and assistance, it's easy to see how their language gets associated with medicalization and the cure narrative and so on, and how it centres the care providers rather than the disabled people themselves.
So it's possible that the story that person-first language means medical model is a bit of a myth, but in lots of ways that doesn't matter. It's perfectly reasonable for people to decide how they want to be described, and for that to vary in different times and situations and so on. "I/we prefer disability-first language" is a sufficient reason all by itself. But people feel like they have to have a justification to ask abled people to change our language, leading to the emergence of folk etymologies about why person-first language is insulting. It's a similar process with handicapped, which at some points in history was the polite, PC term for what we would now call disabled. Many people now believe that handicapped comes from "cap-in-hand" and refers to disabled people asking for charity and handouts. That's factually not true, that was never the etymology, and the term was chosen in an attempt to be respectful by analogy with sports handicapping – you don't think worse of a jockey or a golfer with a higher handicap than their competitors. But lots of people believe it, and what is true is that it's generally a disrespectful way to refer to PWD nowadays. Basically because it's associated with an era where disabled people were segregated away from society and that might have been done with good intentions initially but segregation and institutionalization inevitably lead to cruelty and abuse.
And yes, it is a bit of a euphemism treadmill. New terms are coined by activists, and they are taken up initially by people who are trying to support disabled folk, and eventually by pretty much everybody, but if underlying attitudes don't change, the new term becomes an insult in its own right. But that's not a problem with the activists coining the terms in the first place, and it's not a reason to insist on language which is now outdated and considered offensive.
Hickey's post is really nuanced, and has provoked some really great discussion in the comments about the subtleties of both disability-first language and the cure narrative in general. It's also provoked an absolutely stereotypical angry abled guy complaining about he feels alienated and intimidated by all the infighting over terminology and he'd rather stay away from communities of disabled people altogether because he's scared of offending people. I'm trying very hard not to be that guy. It's complicated not because disabled people are being deliberately mean and excluding us TABs, or because they're having pointless petty fights about details that don't matter, it's complicated because this stuff actually is complicated and there isn't one straightforward answer.
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(no subject)
Date: 2016-03-09 11:43 am (UTC)"I broadly agree with you: it is about the effects of the condition. I prefer disability-first for conditions that I consider part of my identity, and person-first or “have” language for conditions that I don’t. I am autistic; I have ME and endometriosis and hEDS."
I don't know if other people would agree, but it sounded plausible to me, that the difference in language partially reflects a difference in attitude towards the condition. And that as well as different people having different conditions, different people can view the same condition different ways.
And that means both that people feel strongly about it, but that there isn't a "neutral" answer.
(no subject)
Date: 2016-03-09 01:18 pm (UTC)It helped me realize one thing: As someone being trained in psychology, I am expected by APA (American Psychological Association) to use person-first language only in professional communication because they still believe it to be the most respectful. At the same time, my own code of ethics expects things like respect for dignity and engagement in advocacy. And this to me means following complex community preferences such as described here and at the link because I believe that the APA notion is outdated and unaware of these complexities. As such, currently, I see the prescribed APA notation as being in conflict with the Canadian ethics code for psychology when it comes to disability language. I raised this issue briefly in my ethics class but at the time, I did not have the knowledge yet to build a coherent argument so it went nowhere.
Now, for me, this dilemma is a bit theoretical at the moment because my research is not related to disability so I do not have to actively manage it in my own career. But if and when it comes to it, I think a reasonable way to manage this dilemma is to outline it explicitly and explain why you make whatever notation choice you make. And thinking through this, the more ethical and compassionate choice for me takes precedence over following APA. But I also understand why other people could make another choice, especially when they have to get published to stay afloat and that means battling with editors or managers over changing conventions - which needs to happen but will take time.
(no subject)
Date: 2016-03-09 01:58 pm (UTC)The community I serve still overwhelmingly prefers person-first language--to the extent that every time I go to a conference, I collect several complaints that our agency's name (chosen 85 years ago and not easily changeable) is offensive because it does not use person-first language. I don't know how much of that is a UK vs. US thing and how much of that relates to the specific disability being addressed. But I have certainly met some outliers who dislike person-first language, and I can see how the tide of language might shift again over time.
(no subject)
Date: 2016-03-09 01:59 pm (UTC)I think 'we' need to decide among ourselves before trying to impact any change in everyday language. Or we must come to accept that some will say 'actually I prefer'.
Bit of a scrambled reply but as a disabled person I feel my gut reaction is probably more realistic on a point like this than if I sat and thought about it too much.
(no subject)
Date: 2016-03-09 02:57 pm (UTC)(no subject)
Date: 2016-03-09 03:57 pm (UTC)(no subject)
Date: 2016-03-09 04:19 pm (UTC)But honestly as long as people aren't actually resorting to active slurs, I also . . . don't care that much, and would much rather they spend their energy paying attention to how they talk to people, what they assume, how they react to requests for accommodation, etc, than fussing overmuch about which part of the semantic construct they put first. MMV, but it's honestly a thing that makes me a bit frustrated.
Whether or not someone calls me "disabled" or "person with disability" is not really on my radar. Whether or not I feel like a zoo exhibit if I mention I'm having overstim problems/whatever is way, way higher. For example.
(no subject)
Date: 2016-03-09 05:21 pm (UTC)(no subject)
Date: 2016-03-09 05:57 pm (UTC)This is something I’ve been talking about a lot recently thanks to the Amy Sequenzia* piece here http://ollibean.com/2016/03/03/person-first-language-and-ableism/ and the #saytheword campaign, where the word is 'disabled' - good article here http://www.dailylife.com.au/news-and-views/dl-opinion/saytheword-why-im-reclaiming-the-word-disabled-20160120-gma4uj.html, but also because it does come up a lot for reasons I’ll get to.
I’m speaking from a similar soft of background to Amy Sequenzia (though much less disabled by it), neurodiverse plus a physical disability. I'm neurodiverse and I'm hypermobile or bendy (OTOH 'I'm Ehlers Danlos Syndrome' is much more difficult to use that way). In my case I picked up my approach to disability language on the BBC Ouch board in the early 2000s and that’s resolutely Social Model and Disabled Person. I could do without the pain of being hypermobile, or the anxiety that spins out of being neurodiverse, but at this point the other physical aspects, even being a wheelchair user, don’t bother me enough to want to be 'cured' of them. I'm happier now using a chair than I have been walking for the past 20 years.
I'm afraid I'm not convinced by your construction of the history of PWD in the UK, and why it is associated with the medical model. I got into disability politics a bit too late to have been there during the period Andrew Hickey is discussing in his blog, but I think I should have seen signs within the activist community about it having been a prior position of disabled activists with all the arguing about the Social Model we did on Ouch in the early 2000s (arguing over it's completeness of coverage in the main rather than it's overall validity). In all that time, and the time since, I can count the number of UK based activists who have argued to me that we should follow PWD on a single finger. I think that proportion would be higher if it had previously been a mainstream accepted position.
And in the end it doesn't matter whether it's based out of the medical model or not (I happen to think for a lot of people it is, more on that later). All that matters is how disabled people feel about it, whether that be individually, or en masse. It's not a favoured term for the UK activist community en masse, so I'd prefer people not use it as their default (but absolutely advocate using it where someone expresses a personal preference).
WRT 'handicapped', I know the actual origins, and yet I've still come to dislike it intensely. I'm not sure why, but I think it is because 'handicapped' (I'm uncomfortable even writing the word) as applied to disabled people, is generally believed to be an inherent limitation, while 'disability', interpreted via the Social Model, frames it as an externally applied prejudice. An alternative possibility is that people who insist on using it are predominantly people who either haven't updated their views of disability, or have actively rejected updating it, and it has become toxic by association.
I do think there is an innate problem with the PWD structure, I think a lot of people use it because they believe a disability is a negative, something to be ashamed of, and therefore that separating it from the person is a good thing (and arguably this is the Medical Model yet again). So it’s symptomatic of a problem in their belief about our equality. Worse, I repeatedly come across instances of non-disabled PWD advocates abusing disabled people for using identity-first language and insisting that they are right, I’ve seen it twice at first hand since the start of the year, and heard about a worse incident – a disability art studies class at war between the disabled and non-disabled members, because the disabled members are abused every time they use their preferred identities. There does seem to be a common factor in a lot of this, that a significant percentage of the people insisting a disabled person can’t know their minds on this, are graduates of US Special-Ed (ick!) teacher training programmes. It always seems to be autistic people being insisted to as well. I’m not sure if that’s because I follow a lot of autistics, because they run into more issues with people over their right to articulate their identity, or what.
If people won’t listen to us on PWD, it’s probably a sign they won’t listen on other things, and don’t actually regard us as their equals. So this debate is more important than people might think. As an example of that, DWP are pushing ‘see the person, not the disability’ as part of the Disability Confident campaign. If an employer has been told not to see my disability, how do I convince them to give me the reasonable adjustments I need? It’s difficult to think of anything Disability Confident gets right, but that refusal to listen to us is a constant.
WRT 'New terms are coined by activists,' I actually thing most new terms are invented by the non-disabled 'ally' community. I've yet to meet a disabled person who is a fan of 'differently able' or 'handi-capable' or any of the other cutesy variations (I do know one or two who will use them to open up an area for discussion). Again I suspect they're all rooted in a belief in disability as a negative.
*Possibly important to note here that Amy Sequenzia isn’t speaking solely from the autism viewpoint. She has significant physical disabilities as well.
(no subject)
Date: 2016-03-09 06:15 pm (UTC)*And that's a big problem because of the horrendous division in the States between #ActuallyAutistic activists and the awful Autism Speaks, which actively pushes an agenda that people with autism don't know their own mind, and if you do you aren't really autistic.
(no subject)
Date: 2016-03-09 06:22 pm (UTC)(no subject)
Date: 2016-03-09 06:26 pm (UTC)I think the PWD side are worse at this, but then I don't support the PWD side, so I would!
(no subject)
Date: 2016-03-09 06:32 pm (UTC)Epilepsy is a bit of a weird one, but I have found that I felt immediately rather taken aback (i.e. insulted/attacked) when the 50-something doctor in the school health clinic referred to me as "an epileptic".
Granted, I've only had epilepsy as a formal diagnosis for about a year, now. I'm really only used to "epileptic" being an adverb or modifier. Such as "epileptic attack", "epileptic disorder/syndrome". Not as a replacement noun, masquerading as a personal noun.
I think this comes from the old French metier system, especially when your profession was your personal descriptor (i.e. "je suis docteur", rather than "un docteur"), and has some resonance in the English naming system. (i.e. "John Carpenter" could be "John the Carpenter", or John in the Carpenter guild, or family of carpenters, whatever.)
But this is also very tricky when it comes to the fact that being referred to as "an (illness/disorder" also refers back to that old tradition of the person's entire being becoming encapsulated shorthand for what they are/do. Illness has always been considered a kind of social performance, and up until very recently, most of those with severe, limiting, and chronic conditions were kept away from society.
Which is where I have always felt "an epileptic" came from. Epileptics were not meant to be kept with regular society, because epilepsy was contagious, it was a moral disease, it was demonic possession, they shouldn't have children, they shouldn't have property, they shouldn't vote.
But "a person with epilepsy", while kind of a mouthful, puts the fact that we are talking about a person, first and foremost. This person happens to have epilepsy, which impacts their life, but this disorder does nothing to comment on the inherent worth or capability of the person.
I don't want to be synonymous with my disorder. I experience it intimately enough, and it dehumanizes me enough when I gradually lose facets of what constitutes as "human" during an attack, that I don't want its features to be a swap for my own features.
And I think this is very much dependent on the history of the disability/disorder in question. Epilepsy has a long, sordid, fraught history, and as far as I know, very few people prefer to be called "an epileptic". It kind of ranks up there with "a lunatic" or "an imbecile", with possible mental and social performance as shorthand for the person's being.
Perhaps this has some bearing on it being an organic brain syndrome, where there is no control over how people are affected, or choose to deal with their disability, because in many ways there is no personal choice involved. Someone in delirium because of epilepsy cannot choose how medical personnel refer to them, or interact with them.
(no subject)
Date: 2016-03-09 06:50 pm (UTC)An interesting question though, would you have felt the same way if they'd said "this is khronos_keeper, they're [sorry, don't know your pronouns] epileptic" rather than "this is khronos_keeper, they're *an* epileptic"?
I'm not at all sure how I'd react to someone calling me "an autistic" (or for that matter "an English", though I don't see the same problem with "a heterosexual", oddly enough) -- if someone said "Andrew's an autistic" I'd be at best wary of them, but if they said "Andrew's autistic" I wouldn't. Does the use of the article there change the perception of the word from an adjective, implied to be modifying the unspoken noun "person", to a noun implicitly replacing that word?
I also think that epilepsy (from your experiences) sounds closer to my experiences of arthritis than to my experiences of autism -- in the linked post I talk about how I'm a lot happier with person-first usages for the former than the latter...
(no subject)
Date: 2016-03-09 06:51 pm (UTC)(no subject)
Date: 2016-03-09 06:59 pm (UTC)(no subject)
Date: 2016-03-09 07:06 pm (UTC)David's a wheelie
David's a wobblie
David's a spoonie
David's a bendy - common factor here is these are all in-group created labels.
David's a neurodiverse doesn't entirely scan
David's neurodiverse does work.
David's a dyspraxic does at least scan, but it's not a way of describing dyspraxia I've even seen anyone use.
David's dyspraxic is far better
David's a hypermobile, nope.
David's hypermobile, much better again
David's an hEDS, doesn't work at all
David's hEDS, nope, no better
David has hEDS - that works.
Are our problems with some of these simply grammatical? Does a felicitous scanning phrase change which is acceptable and which isn't?
(no subject)
Date: 2016-03-09 07:32 pm (UTC)When I say "I'm a disabled person," I mean:
* I have impairments (in my case physical, emotional, cognitive)
* Normate bigotry causes me to experience oppression
* I make common cause with other humans who live with any sort of impairment, because we all experience a similar oppression.
Particularly in the US, people who have intellectual disabilities (UK = learning difficulties) recoil from the "slow learner" or "EMR" labels that went along with their (mis)treatment in institutions, schools, and life in general. Grassroots advocates from this community named their group "People First," in specific contrast to their dehumanization.
**"Person with disability" now encompasses all folks with any kind of impairment in US law.** (From 1991, against the specific desires of Congress, courts decided they could sort who was impaired enough to sue under the ADA. This tendency for courts to enshrine their personal prejudices was over-ruled in 2010 by the ADA Amendments Act.) PWD is used extensively in US civil rights and education laws, regulations, and research. This is another reason person-first ended up in the mouths of teachers, researchers, and advocates.
I think of "disabled person" as politically parallel to the US phrase "person of color." Both are umbrella terms which group a *very* diverse collection of people who share a similar oppressive experience. In both cases, there's terminology for the "home constituency" as well as for the group-as-whole. At home I label myself as a wheelie and neuroqueer. When acting politically, I say "disabled people" or "person with disability" depending on the context.
(no subject)
Date: 2016-03-09 07:34 pm (UTC)(no subject)
Date: 2016-03-09 08:14 pm (UTC)(no subject)
Date: 2016-03-09 08:46 pm (UTC)By my choice, I would say, "Can't go into the flashing light zone, I have epilepsy." I wouldn't by choice say "I'm epileptic," which while lexically correct, still mentally supplants anything about myself in favor of my disorder.
Saying, "Can't go into the flashing light zone, I have epilepsy," feels more to me like I am aware of my limitations, and am choosing to abide by them, rather than the more horrific possibility of my disorder determining what I can and can't do in, "I can't go into the flashing light zone, I'm epileptic."
This has some resonance with a term like "asthmatic". It used to be fairly common for esp health personnel and parents to say, "Jimmy can't go running, he's asthmatic (or "an asthmatic")." And by extension, the social stigma of not being able to do normal social group stuff (as in with epilepsy) directs people to view the person as less capable, less complete for not being able to Do The Thing.
Yeah, along with the history of the disability, a lot of it does have to do with the assorted physical and biological mechanisms of the disease/disorder. I'm having ideas about what this means, but it's hard for me to articulate. Epilepsy being an organic brain disorder, and my type specifically having a lot of organic psychiatric components, and you have a condition that sometimes looks like someone without an apparent pervasive mental illness suddenly and severely exhibit them.
So, as in the flashing lights example, and I suddenly have a CPS, my level of consciousness is either absent or severely compromised. My core functionality, my ability to connect with the social group is drastically hampered, and depending on the extent of the biological mechanisms, I could die. As in, the seizure might stop my heart, or if it goes on for too long might give me brain damage.
In this case, my permanence as a person in the entire concept is called into question. It makes sense, from a medical standpoint, to keep the medical condition, in the forefront. An asthmatic stops breathing, they die. A diabetic whose blood sugar drops could die. An epileptic who keeps seizing will die. All of these conditions have the potentiality to self regulate, but they have a better than non-zero chance of killing the afflicted.
But, in a normal social setting, this is not my concern. While epilepsy is a lived experience, and it impacts how I interact with the world, I would ideally have influence on how deeply it impacts me, rather than it determining what I can do, and more especially what other people think I ought to do. So this is what I mean when I say I would rather at least have the illusion of control over how much it affects me.
And, coming right down to it, acknowledging "I am epileptic" even as a descriptor, is just too hard for me to do, even to myself. Because it is illegal for me to drive. Legally, I am not allowed do 3/4 of the jobs I wanted to do, because my disability precludes me. It impacts my life in ways that deeply disappoint me, beyond just it being a pain in my ass.
There are ways in which society has dictated, "We recognize you are at an increased risk for dying or accidentally killing others. Here's how we're going to avoid that," and there is no way I can fight that.
(no subject)
Date: 2016-03-09 08:50 pm (UTC)(no subject)
Date: 2016-03-09 08:55 pm (UTC)(Oddly, I also think this about my asthma, but I'd have no problem someone saying "he's asthmatic" about me -- perhaps because asthma is coded as "an illness" rather than "a disability" in society?)
(no subject)
Date: 2016-03-09 09:10 pm (UTC)(no subject)
Date: 2016-03-09 09:33 pm (UTC)(no subject)
Date: 2016-03-09 10:56 pm (UTC)(no subject)
Date: 2016-03-10 03:30 am (UTC)(I am autistic and i have endometriosis and hEDS and Crohn's etc, i would frame it pretty much the same, except that i do also talk about being 'hypermobile' (and 'syndromically hypermobile') a lot, which doesn't really fit any of the linguistic constructions so neatly. It's more like autistic, i guess. I tend to say that i have hEDS in medical contexts and talk about being hypermobile in more...abstract contexts, not that i'm not talking about myself and my body (because often it is way of talking about deeply embodied experiences) but i guess i often use that construction when i want to talk about a broader range of experiences, whether it's making a link to other bendies' experiences, or talk about my own experiences of my hypermobility as something that is disabling but always (historically, at least) negative. I don't know whether anyone much apart from me uses the term 'normomobile' and normomobiles, but i kind of hope it takes off.
The other difference from what you described above is that i wouldn't refer to myself as A Depressive (although there have been times in my life when i might have said that i was depressive). I think for me that's actually more about my Mood Stuff not really fitting into how i understand the 'depression' label, rather than anything else. I *do* identify with chronicity and my mood stuff being an inherent part of my experience/identity/personality, it's just that 'depressive' implies a specific thing to me which is not actually what i am, most of the time, and i don't think there is a parallel construction for anxiety or emotional lability/intensity/whatever i actually am. I mean, i did once have a psychiatrist try to diagnose me with Borderline Personality Disorder because of SI and being young and female-presenting, which was FUN (read: traumatising to the point that i was scared off mental health care for quite some time despite desperately needing support), but ugh. I could never identify with that because of its massive baggage and political ramifications. I know that some people (and uh, parentsw of some people) do use the construction "I am/they are ADHD", or "I am Asperger's", so conceivably there are also people out there who would identify with "I am BPD" (and i have definitely heard "I am borderline" used before) but the whole thing gives me a massive squick on multiple levels, really, including "I am Asperger's". I didn't realise this was a Thing until i went to a support group meeting (ahahahNOPE) and people kept referring to "things that are relevant to Asperger's" and so on, and it became obvious from context that they meant *themselves* and not "things that are relevant to my autistic-ness" or even "things that are relevant to my condition".
(no subject)
Date: 2016-03-10 03:48 am (UTC)I certainly was Never the Same after that first episode of major depression, but since i recovered from that when i was 18, a few months before i finished school and developed multiple chronic physical illnesses...it's really hard to unpack. I used to worry a lot that, because i so clearly wasn't "depressed" (in the same way as i had been earlier) that maybe there actually was nothing wrong with me, which really meant that i was just Wrong; maybe i 'just'...failed at being an adult human. Thankfully i now know that most of that was about not realising that i am autistic, and living with chronic emotional invalidation and ridiculous ableist expectations.
I think i am also more accepting of the fact that i am just...a person who *feels* a lot. Always have been, always will be? Probably? Idk, maybe i have Actually been Depressed a bunch of times over the past 15 years and not realised it? I have a constantly-shifting relationship with all of these concepts, including ideas of permanence and stuff. It's so hard to tell how much of it is my own defensiveness and internalised ableism and very real fear of others' perceptions having a negative impact on me, and how much of it is just that the boxes are human constructs and so a bunch of stuff doesn't and never will fit into them.
I do half-jokingly self-deprecatingly talk about myself and my family as 'neurotic' (because...we totally are) but i don't think that that's actually a useful label in most situations because of its baggage, and actually it kind of squicks me. But i think that's the closest concept that actually maps onto my emotional experience? Intense about everything, prone to worry and negative emotions that go with that, sometimes/often it tips over into dysfunction; even when things are going well and i'm not actively worrying or depressed or whatever, it's still there in the background, and it's a lot of work to not endorse or invest or get sucked into negative thought patterns and let bad feelings control what i do (or more often: don't do.
I feel like if Major Depression were a thing that i had 'recovered' from, or if it were a thing that i had distinct episodes of, in between which i was 'normal', i would not be working so hard *all the bloody time*, for half my life, at not thinking and feeling those ways and ignoring my metaphorical backseat driver and so on. I'm sure i was always a sensitive kid who felt intensely and cried easily, but i'm certain that i didn't always have to engage in these constant arguments with parts of my own mind about whether/how much i suck and what to think/feel/do about it.
In conclusion: that was a ramble, and i have ~very Complicated Feelings~ about 'depression' as a label that both does and odes not reflect my experience.
(no subject)
Date: 2016-03-10 11:19 am (UTC)(no subject)
Date: 2016-03-10 11:28 am (UTC)I do try to do the other things you mention as well, not making stereotype-based assumptions, being helpful about accommodation requests when it's in my power (eg in the context of my university teaching), etc. But for me, paying attention to my language when I'm doing things like writing blog posts is relatively easy, it's not using up my energy and preventing me from more important activism and allyship, so I might as well do both.
(no subject)
Date: 2016-03-10 11:43 am (UTC)Also, I have a strong suspicion that depression is a symptom as much as a disease. I mean, some people "have depression," in that they're otherwise fine but prone to depressive episodes. But lots of people experience depressive episodes for all kinds of reasons, internal or external, and I bet we don't really know what half of them are.
(no subject)
Date: 2016-03-10 11:53 am (UTC)(no subject)
Date: 2016-03-10 11:56 am (UTC)(no subject)
Date: 2016-03-10 12:01 pm (UTC)(no subject)
Date: 2016-03-10 12:12 pm (UTC)I do absolutely agree that everybody needs to accept that it's a personal thing and there isn't one magical right answer. I don't think the responsibility should be on disabled people to come to a consensus before abled people agree to respect their preferences, though. I mean, I wouldn't expect you to be the representative of all diabetic people, let alone everybody who has a chronic illness or all the people with pain conditions, mobility impairments, sensory impairments, cognitive and neurological differences etc etc.
(no subject)
Date: 2016-03-10 12:31 pm (UTC)I do agree that with disability specifically, using PC language can be negative because of the history of institutions set up to "help" [sic] disabled people actually doing massive harm by not respecting people's autonomy. I think there's a progression from, don't use that word because it insults people like me, to people who are basically well intentioned but in fact causing harm getting one thing right, using less insulting language, to the formerly less insulting language being associated with the harm, not the good intentions. I don't think that's Sapir-Whorfian, exactly.
(no subject)
Date: 2016-03-10 01:00 pm (UTC)(It's about half and half on individual preference, as I understand it, but a lot of the US government agencies use deaf-blind, and our catalog currently does too. But we don't edit titles or abstracts or other content for it, so both appear in our catalog. We share catalog records with the national deaf-blind folks, so as long as they use the hyphen, we really sort of need to.)
From a librarian perspective, this is a pain in the neck, because there's no quick way to search on both variants with truncation: deaf* will get you deaf (and Deaf) and deafness and so on, as well as deaf-blind and deafblind.
(no subject)
Date: 2016-03-10 02:45 pm (UTC)Coming to acceptance that disabilities are, and that there isn't necessarily a value judgment attached to that, seems pretty recent and still difficult for the general population. That might also contribute to the language struggle, for people who want to avoid stating or implying that a disabled person is a tragic figure.
Punctuation
Date: 2016-03-10 05:26 pm (UTC)I was furious with the designers of a patent record system I once used, where three separate searches were required on seven-digit patent numbers, depending on whether the number had originally been entered with: commas; spaces; or no separators.
Southernwood
(no subject)
Date: 2016-03-10 06:56 pm (UTC)(no subject)
Date: 2016-03-11 04:35 am (UTC)(no subject)
Date: 2016-03-11 11:55 am (UTC)I would absolutely give authority to the BBC Ouch boards on matters of disability history, but it's obviously hard for a particular online forum to be really representative. There's a certain kind of disability activism which is often cognitively, as well as physically, inaccessible to many disabled people, and that doesn't mean the activism is not worthwhile, just that it's not the whole picture. I mean, I know plenty of disabled people who really dislike the social model, because their disabilities are real and embodied and genuinely negative for them, not some social construct which isn't "real" and might even be seen as "all in their heads". And I know that's not what the social model actually says, but it's a complicated academic idea that isn't well understood by lay people no matter whether their bodies are favoured or disabled by current society.
I was pretty much assuming that the whole movement for liberation and integration, the challenges to language which while previously polite had become insulting, and the development of the social model itself partly came from disabled activists. I'm thinking mostly 70s and 80s, but I'm not sure of the timescale. Like, it wasn't just that the medical and academic establishment magically decided to become benevolent and stop medicalizing, institutionalizing and abusing disabled people. Those changes happened because of grass-roots activism. Of course, when activist approaches become institutional policy, the original message gets corrupted, but it's still a success for the activism to bring about institutional changes. And of course it's valid for a later generation to say, this language is tainted by the way it's been used by the establishment, so we're going to overturn it again and reclaim a language which is ours rather than imposed on us. I don't think it's as straightforward as, terms from within the community are always accepted and stay static forever, but terms imposed by outsiders get rejected as patronizing and cutesy. I've certainly seen it with language around trans and related issues, that in-community activists pushed for the adoption of better language, and that new language was used as a tool by those in power to further oppress marginalized trans and gender non-conforming people, so it has become controversial, so it seems plausible that the same has happened with some of the language around disability.
But most of that is guessing and assumptions and fragments of knowledge picked up here and there. If someone corrects my language about a minority identity I don't share, I'm not going to make them demonstrate their credentials to me. So I honestly don't know whether it's purely non-disabled false allies who have influenced my ideas on the subject. It also isn't really important to know the origins and history of a particular term, far more important is listening to people telling me how they want their identities to be described.
I do think it's a good point that any attempt to update and improve language can have the down side of making the original identity referred to seem negative. I certainly know of several examples of that with race language, for example. So I have a lot of positive feelings about #saytheword and related activism.
(no subject)
Date: 2016-03-11 03:20 pm (UTC)And then the rest of XMFC fandom starting coming across the fic, outside the context of Purimgifts, and I started getting comments about how funny the dialogue was, and those comments were the most hurtful comments I've ever gotten on a fic.
As to activism about language and Sapir-Whorf, I agree that obviously besides trying to change how people think using language as a tool, the other reason to be careful about language is to not insult people, and I said as much. But if that's the reason for being careful about this kind of language, then I think that all the analysis in your post about why things are insulting, and how this language appertains or doesn't appertain to the social model of disability, is entirely irrelevant. The only analysis that matters is "This language makes someone feel insulted, so I will avoid it, especially in their presence, to avoid insulting them."
(no subject)
Date: 2016-03-13 09:01 pm (UTC)Oh, indeed. And in fact I and several other people started off in those Ouch discussions from the position that the Social Model had problems with the impairments which were intrinsically unpleasant without needing to involve society - mostly because we all had them. On the other side of the debate, Bob Williams-Findlay, former chair of the British Council of Disabled People, and Bob converted me and at least shifted most if not all of the others closer to his point of view, which was that the Social Model does have universal applicability, people just need to understand all of its implications (and most people don't).
And because of Bob's background as a prominent long term disability rights activist, I tend to think we probably got a fairly accurate history of the movement WRT the Social Model.
IIRC, the disability liberation movement started in the late 60s in California, with activists pushing the modern model of assisted living, where the disabled person exercises control, rather than being controlled. Following closely on the heels of that in the UK was UPIAS - the Union of the Physically Impaired Against Segregation - in the early 70s, which gets some justified criticism as 'white men in wheelchairs', but some of the early disability studies academics came out of that, as did the proto-Social Model in about 1976 - and that was a very deliberate redefinition of 'impairment' and 'disability' to they way they're used by the Social Model. The 'white men in wheelchairs' aspect meant the precise wording was focused on physical disability, but that was the base from which the full Social Model grew.
Absolutely!
(no subject)
Date: 2016-03-13 09:09 pm (UTC)