Hello I don't normally do this as I'm cautious on our new system and how it splits threads - but here is a new thread with some posts split off from the main abortion thread so we can discuss topics like 'identity first' and 'person first' language et al.
I also think it's a Pond difference as to what is acceptable terminology for disabilities, within professional spheres. It is also an ever moving target as each time a phrase becomes an insult, so something else is chosen as acceptable, the insults change.
The problem with any words we use is that they change meaning: it didn't take long for the school terminology of "special needs" to reach the playground as an insult: "He's speshul, he is!"
This could a thread unto itself!
I think it's a linguistic arms race. When I was little, I think "retarded" was still clinical language even though it had also been downgraded to a schoolyard insult. By the time I started my job, we were told very seriously not to use that word in any professional context because, simply, we don't use that language. I was taught to use "high functioning" and "low functioning" in some senses, but in common use, they seem to go the same way. And really, if you're not in a professional setting, defining a person in that sense is insulting and none of your business.
Honestly, I feel a little touchy even referring to the guys I work with at work in a public setting, but it's also a pertinent observation to anyone who wants to speak blithely of how everyone should just raise disabled kids because it's the right thing to do. It is, but many parents evidently aren't up to it.
Using colloquial language around disability is hazardous. To me, "basically a toddler" is more dignified than giving a detailed description of the the diapers and the feeding, etc.; but I can see how that can be misconstrued as flippant or unprofessional. I also see nothing insulting in being in that state if one is, but that's probably because I work with these guys. I can see how a stranger might get the wrong impression from that. *scowls in their general direction*
When I was in training, I think we were told that the proper term is "cognitively impaired" and I've joked that this particular phrase was such mouthful that it was unlikely to get weaponized. So far it seems to have held.
I've also heard "special" used with condescension. Really, anything that gets associated with "disability" runs a risk of turning into an insult for jerks, because that's how jerks think. It's a problem. The jerks will always be with us. *scowls in their general direction*
Another conundrum that comes to mind is that, at work, we were trained "person-first language." This means you don't say "that's a Downs kid," but "that's a kid with Downs syndrome." You use language in such a way as to avoid reducing the person to their condition.
This does run straight up against what seems to be a strong consensus among autistic people that they prefer "autistic person" to "person with autism." As if they see the underlying problem that it shouldn't be embarrassing to be considered a person with a "disability," and a number of autistic folks would argue that it's not even a disability. It's just a different way of thinking. There shouldn't be anything intrinsically embarrassing about it.
I suspect I'm autistic myself, but I don't think I'm qualified to put my foot down hard one way or anther in that dispute, beyond to observe its existence with respect.
The reason for that is that many of us see autism as too intrinsic to our very being to be something we are with. As if we could still be us without it. It can sound a little close to the idea that autism is a Thing that could be Cured and we'd still be ourselves.
The reason for that is that many of us see autism as too intrinsic to our very being to be something we are with. As if we could still be us without it. It can sound a little close to the idea that autism is a Thing that could be Cured and we'd still be ourselves.
As I understand it, and please tell me if I'm wrong, this is called 'identity first language' while of course a lot of us had what Bullfrog is talking about drilled into us "person-first language." and some communities very much prefer one and some the other, and some individual people prefer one and some the other... I knew 'identity first' was generally preferred in autism but I'm sure I'm not up on everything.
It's something I'd been thinking would come up here for a while and it would be very good to be made aware of people's preferences.
I'm also aware that the thread title I came up with was maybe not great because we're also talking about non-neurotypicalities ( I am non neurotypical) - so I edited it so the conversation could reach wider -
The education conference I spoke at recently (about my research with students with mental health challenges) required speakers to use 'disabled person' not 'person with a disability' as the social model of disability says the people are disabled by society. So whilst I 'have bipolar disorder' (a medical condition) I do not 'have a disability' but am a 'disabled person'.
I, personally, adhere to an affirmative model of disability and wish I didn't hear conference speakers and university policy refer to mental health 'issues' or 'difficulties' or the word 'suffering'. We all have our individual preferences.
I have a strong identity with my bipolar disorder and am quite happy to be described as a manic depressive. I occasionally describe myself as high-functioning but that is probably a reaction against the many people over the years who have told me I don't really have bipolar disorder and obviously know better than the psychiatrist who diagnosed me 25 years ago.
I'm not that up on the terminology. But yes, that's essentially it.
It will vary from person to person. If you'd asked the 11 year old me (had he known about autism) then he'd see his social isolation and difficulties relating to peers and many adults as something he wished weren't so. Perhaps he'd have preferred Person with Autism and seen it as a disability. But what the social model teaches us is that his (11 year old me's) autism was a disability because other people made it one. As an adult there are people who would still make it one - not because they're evil, but because they don't understand; they misinterpret our quirks; they struggle to understand why we struggle to understand why Liverpool's chances next season (which I don't care about) is an acceptable topic of conversation while disused suburban railway stations (which you don't care about) isn't.
But when people are willing to make the effort rather than writing us off as laughable weirdos, then we can contribute to work, to family, to society, in ways that actually use autistic ways of thinking. For example, I am lucky now to work in IT where (stereotype warning) people are used to us, and appreciate what we can do.
And if I weren't autistic, I wouldn't be the person doing that the way I do it.
So the disability is largely subjective rather than objective and I really don't identify as disabled or having a disorder at all. I prefer autistic over ASD - Austistic Spectrum Disorder - for that reason. For me it's all those allegedly normal people with illogical thought patterns and apparent inability to think in a straight line who are disordered
It's been said (and may be exaggerated) that without autistic people we'd all be really enjoying getting on with each other with really rewarding and bonding small talk - in cold caves.
Here is one of my favorite articles on terminology for autism, written by an autistic man. He explains his feelings about person first language but also why he dislikes terms like high/low functioning. I highly recommend it, but particularly to other allistic (don't have autism) people who want to understand the PoV of an autistic person.
Great article and a lot of things I can relate to from a manic depressive perspective too. I didn't start using high functioning until others started to question how I could have bipolar disorder and still have a family and a demanding job; I got the 'mild bipolar disorder' thrown at me too. High functioning can be terminology used defensively because people are judgemental. You can't win, you gets judged if you are manic or depressed or neither.
I am pretty much neurotypical, but I work mostly with people with intellectual disabilities, often co-occurring together with either other developmental or mental health conditions, or both.
Many of those I work with never develop the ability to use language or discuss its nuances.
I will use the terms an individual prefers, but I still default to person first language and ask my trainees to do so for those who can not or do not express a preference - because I absolutely need everyone around that person, who usually can not advocate for themselves, to see them as a person first and foremost, not a diagnosis, not a cost pressure, not a problem.
I am what is referred to as a disability service provider at a university. I was in a meeting with a colleague from another campus yesterday with many people from both campuses there as well. I consistently used the phrase "student with a disability" while she always uses "disabled student". AHEAD has recently come down on her side of the usage debate. https://www.ahead.org/professional-resources/accommodations/statement-on-language
Like many other things, all the various models of disability are just a particular viewpoint, which is to say that they're all wrong (or all right, depending on whether you're a half-empty or half-full glass person) - and that as @Heavenlyannie implies in her post, different people seem to find that different viewpoints best encapsulate their particular situation.
Which generally means I come back to my overarching rule - call people what they want to be called. If a particular person (such as Karl) wants to be called "autistic" rather than "person with ASD" or whatever, then call him that. If you're talking about a group of people, you'll generally have to go with whatever group consensus there is. And there will be someone who doesn't like that consensus, and will grumble about it, but it's not going to be possible to please everyone.
And ultimately, language is for communication. If your language doesn't communicate, then it doesn't work. @Bullfrog's use of the toddler comparison to describe the guys he cares for is a case in point - it communicates, clearly and in few words, the rough level of capabilities that his guys have, in a way that several dense paragraphs of text describing their needs and abilities really doesn't.
And there are lots of different spheres of communication. Every group develops specific technical language to address things that it finds important, and that technical language is great for discussions within that group. It doesn't communicate well outside that group.
Yes, disabled student would usually be considered inclusive language in UK university education too. Here is the UK government guidance on inclusive language https://tinyurl.com/rn8fjyw
I would strongly agree with your overarching rule.
I was trying to edit my previous post to add:
This (seeing the person over the diagnosis) is particularly important to avoid “diagnostic overshadowing” - for example Request: will you give this person clinical treatment, they keep crying, they don’t sleep properly and they won’t eat the food they normally have, they are autistic and their support plan must need changing. Answer: Do you think that their reaction is any different than any other person who’s father just died ?
I would strongly agree with your overarching rule.
I was trying to edit my previous post to add:
This (seeing the person over the diagnosis) is particularly important to avoid “diagnostic overshadowing” - for example Request: will you give this person clinical treatment, they keep crying, they don’t sleep properly and they won’t eat the food they normally have, they are autistic and their support plan must need changing. Answer: Do you think that their reaction is any different than any other person who’s father just died ?
I have an example of this attitude. When I developed a fast heart rate post-covid I saw a cardiologist for investigations (heart scan, lung scan, 24 hour ECG). These were undramatic and her letter to my GP said my symptoms were due to post-viral symptoms and anxiety. Now, anxiety does cause a fast heart rate but I was not in the least bit anxious when I saw her; I’m an ex-nurse lecturer who is very comfortable in medical environments and confident talking to doctors, and I gave a practical and informed account of my symptoms. But she saw me through the lens of someone with a mental health condition. And people wonder why I don’t bother seeing doctors about my post-viral syndrome.
I get what you are saying @Leorning Cniht - but brevity isn't the most important aspect of communication. @Bullfrog obviously cares for the people he works with and used terminology that many many people use without any malice. But lots of disabled people, including those with intellectual and developmental disabilities (who often can and do use language to express their feelings), feel that it creates unhelpful ideas about disabled people and that we aren't really adults. I'm aware that it's not intended that way, but disabled adults being treated as overgrown children (and disability being seen as primarily effecting children) is a huge problem and has real impact on our lives. Bullfrog may not view things like eg reproductive healthcare in his clients to be less of a thing because of that language (and I believe him) but it's a really huge issue when disabled people are one of the groups with the very highest rates of sexual abuse and rape.
There is also the issue that parents of disabled children often find this language quite upsetting, because their toddler (for example) isn't less of a toddler because they haven't reached standard milestones in the same way. It reinforces the idea that there is a Normal way to be a particular age, and that failing to be part of that norm suggests the person is not really that age - rather than accepting that a disabled, non-verbal 50yo is still actually 50 and should be treated as an adult still, just one with different needs. Why not use 'incontinent and non-verbal' for eg rather than 'like a toddler'? As someone with a bowel condition there's also the huge issue around stigmatising continence issues by associating solely it with infancy or infirm old age, but that's going off-topic I think.
I think it's important to remember that people from any marginalised group talking about what terminology they prefer isn't the same as being told off, or even a correction as such. I do feel like people feel like they know they want to support disabled people (for instance) so therefore being pulled up on language is somehow insulting them or trying to deny that fact. But being asked to adjust your own terminology shouldn't be seen as a huge deal - disabled people can tell when people are genuinely trying to be supportive, but language is still important.
I am pretty much neurotypical, but I work mostly with people with intellectual disabilities, often co-occurring together with either other developmental or mental health conditions, or both.
Many of those I work with never develop the ability to use language or discuss its nuances.
I will use the terms an individual prefers, but I still default to person first language and ask my trainees to do so for those who can not or do not express a preference - because I absolutely need everyone around that person, who usually can not advocate for themselves, to see them as a person first and foremost, not a diagnosis, not a cost pressure, not a problem.
I've worked and volunteered in such environments as well as being disabled, and people working in the field in the UK are overwhelmingly taught to use identity-first language. I think there is a big Pond Difference though, as I often see Americans using language that would be considered unacceptable in any kind of official capacity here, eg 'handicapped'. But then there are terms like sp*z/sp*zzing out which are normal in the US and incredibly offensive in the UK as here it's an offensive term for people with cerebral palsy. This isn't a judgement, just that I think disability culture is Very Different in the US.
Maybe I'm interpreting the problem too literally, and obviously, if faced with an individual, I should respect that individual's preferences - but surely the difference between person-first and identity/condition-first language just represents a quirk of English syntax, and says nothing about the relative importance or intrinsicness (?) of the thing put first?
That is: the normal rule of English grammar is that if a noun is qualified by an adjective or another noun, the qualifier comes first (e.g. tabby cat, Labour MP, computer technician), but if it's qualified by a prepositional phrase, the head noun comes first (person of colour, cup of tea). But the word order (in English) says nothing about which word is more important, or whether the qualifier is considered an intrinsic property of the head noun or not.
In French, the qualifier always comes second, so French will always be syntactically person-first. But ISTM to be stretching Sapir-Whorf to an absurd degree to suggest that French culture is therefore intrinsically more person-focused.
Speech acts do have implications beyond the literal meaning though. Both what you chose to include in a description and what you leave out.
It reminds of the debates early in my life when people claimed that everybody knew if you used male pronouns or “the man in the street” you were including ‘both’ sexes (no one was talking about multiple expressions of gender at that point), research showed that that kind of language use did bias peoples’ assumptions toward thinking mainly of men.
It is likely that cognitive quirks of humans, like recently and primacy effects, do mean that word order subtly effects our understanding of the relative importance of elements of a sentence - though I honestly can’t cite a research study, just extrapolating from known existing effects.
We probably shouldn’t get side tracked into a grammar discussion though, it’s not really what this is about.
We probably shouldn’t get side tracked into a grammar discussion though, it’s not really what this is about.
I think it is about grammar, though, unless I'm getting overly literal about the specifics (not unknown for me). That is, I understand you to be saying that putting the person syntactically first means that the person is the more important element in the phrase - so for example, 'person with autism' has a negative effect in that it implies the autism is separable from the person, but this is counterbalanced by a separate positive effect, which is that the syntax emphasises the person. But my claim is that the syntax doesn't emphasise the person, because that's just not how English syntax works, and therefore the negative effect is not counterbalanced.
Speech acts do have implications beyond the literal meaning though. Both what you chose to include in a description and what you leave out.
It reminds of the debates early in my life when people claimed that everybody knew if you used male pronouns or “the man in the street” you were including ‘both’ sexes (no one was talking about multiple expressions of gender at that point), research showed that that kind of language use did bias peoples’ assumptions toward thinking mainly of men.
But in that example, 'he' and 'man' do literally mean 'male person', so it's not surprising that the use of those words colours assumptions. My claim is that being the first element in a noun-phrase does not imply being the most important element, either literally or metaphorically. E.g.:
a.) The cat ate the sausages
b.) It was the cat who ate the sausages
The second sentence puts more emphasis on 'cat' than the first sentence, but the word 'cat' has actually moved to be later in the sentence.
It is likely that cognitive quirks of humans, like recently and primacy effects, do mean that word order subtly effects our understanding of the relative importance of elements of a sentence - though I honestly can’t cite a research study, just extrapolating from known existing effects.
I did some linguistics at university, but not a particularly high level. The research I saw suggested that word-order tells you very little about what's going on under the surface -- although people utter sentences sequentially, word-by-word, the underlying thought processes are a lot less linear.
@Ricardus, I think from a grammar/syntax perspective you have a point.
But I also think it’s more complicated than that, as how we describe something—a thing, a situation, a person—can color how we perceive it. The primary point of person-first descriptors isn’t about syntax or grammar, I don’t think. It’s about inviting and encouraging the speaker/writer and the hearer/reader to rethink and reframe how they perceive the person they’re talking about by using a construction that deviates from the usual English adjective noun construction, and thereby makes one have to think about how they’re describing someone else.
And it’s about respecting how the person or group being talked about actually hears the usual adjective noun construction, regardless of how rules of grammar or syntax suggests they should hear it.
I dislike the word ‘Disorder’ which is in the description of many neurological conditions.
I don’t have a neurological disorder, I have a neurological difference.
My hands are currently totally ‘disordered’ and disabled, but my brain isn’t. I like my ADHD and it makes me me. Without it I wouldn’t be me.
I need a lot of help due to my paralysed hands. I find some people help me and offer help really well. Others ignore my needs, and yet others are patronising and treat me as helpless.
I think it’s a personality thing. Some people are just naturals at making others feel at ease, whatever their difference or disability.
For a while I was trained to use ASC - autistic spectrum condition, not ASD - autistic spectrum disorder - but that doesn't seem to have gained general acceptance and had pretty much faded out while I was still in the field. But we did tend to describe our students as, for example, a young gentleman who is doing really well academically, he is on the autistic spectrum and that affects his coping mechanisms in the following ways.
I dislike the word ‘Disorder’ which is in the description of many neurological conditions.
I don’t have a neurological disorder, I have a neurological difference.
Maybe the difference is whether you'd happily dispense with it if you could. I have mal de debarquement. My dad had Parkinson's disease. My condition diminishes my life to a not insignificant degree, and my father's diminished his life tremendously, and I consider them both disorders.
I dislike the word ‘Disorder’ which is in the description of many neurological conditions.
I don’t have a neurological disorder, I have a neurological difference.
Maybe the difference is whether you'd happily dispense with it if you could. I have mal de debarquement. My dad had Parkinson's disease. My condition diminishes my life to a not insignificant degree, and my father's diminished his life tremendously, and I consider them both disorders.
Quite. This is what I was alluding to in my long post yesterday.
I certainly wouldn’t dispense with it if I could. That’s why I dislike the label ‘disorder’. I’m not disordered, I’m different. I have tried the medication, I hate it - it also stops me being me.
I’m sorry you and your father had these difficulties and I don’t blame you at all for considering them disorders.
@Ricardus, I think from a grammar/syntax perspective you have a point.
But I also think it’s more complicated than that, as how we describe something—a thing, a situation, a person—can color how we perceive it. The primary point of person-first descriptors isn’t about syntax or grammar, I don’t think. It’s about inviting and encouraging the speaker/writer and the hearer/reader to rethink and reframe how they perceive the person they’re talking about by using a construction that deviates from the usual English adjective noun construction, and thereby makes one have to think about how they’re describing someone else.
That's fair enough - I agree that anything that makes you ask 'Why am I referring to this community in this way and what does it mean?' is a good thing.
And it’s about respecting how the person or group being talked about actually hears the usual adjective noun construction, regardless of how rules of grammar or syntax suggests they should hear it.
Yes - but when different members of that community hear it in different ways, I think you need a very good reason to elevate one interpretation over the other. That is, if some prefer adjective + noun and some prefer noun + preposition + noun, I think you need a good reason to pick the second group over the first as the group that defines the normative terminology.
I am pretty much neurotypical, but I work mostly with people with intellectual disabilities, often co-occurring together with either other developmental or mental health conditions, or both.
Many of those I work with never develop the ability to use language or discuss its nuances.
I will use the terms an individual prefers, but I still default to person first language and ask my trainees to do so for those who can not or do not express a preference - because I absolutely need everyone around that person, who usually can not advocate for themselves, to see them as a person first and foremost, not a diagnosis, not a cost pressure, not a problem.
That's my experience too. For people who can self advocate, trust them. Always.
But for people who can't, it is so easy for some people to assume they're a case before they're a human being that I think it's safer to stick to person-first.
I also think that using clinical language informally is generally rather hazardous unless you're talking about yourself.
And yeah, in general the way you speak will shape the way you think, and may also shape the way other people think. We should all be mindful about how we talk about each other.
To clarify a few things that @Pomona brought up...
Yeah, I'm aware of the problems. We've had trainings on sexual abuse. Thankfully I've never seen that problem in my own life but it's definitely a big thing. Far as reproductive health, it's definitely a need. Relating to both of the above, at my employment male staff simply do not work in female living quarters and do not handle any kind of toileting for women. It's outside of my direct experience but it is definitely a legitimate need.
It's a thing that my employment exists specifically because, yes, these people have particular needs that do set them apart from "normal" society and there is a constant tension between trying to maintain the appearance of normal life while also fully accommodating them. "Least Restrictive Environment" and "Dignity of Risk" are Big Words in my personal vocabulary.
It happens that my end of the institution does involve people who, because of low cognitive function, are entirely dependent on staff for many needs, but I think it would be horrible for someone to generalize about the entire population from my particular experience. I seriously hope nobody is getting that from my typing, though I see how one can leap to that misunderstanding. I use "toddler" as a relatable shorthand for the kinds of needs I'm dealing with, but it's an imperfect analogy and, yes, I should be more careful in my speech.
I think it's important to remember that people from any marginalised group talking about what terminology they prefer isn't the same as being told off, or even a correction as such. I do feel like people feel like they know they want to support disabled people (for instance) so therefore being pulled up on language is somehow insulting them or trying to deny that fact. But being asked to adjust your own terminology shouldn't be seen as a huge deal - disabled people can tell when people are genuinely trying to be supportive, but language is still important.
^^^I could not have put this better if I tried.^^^
[And for the record, I'm not even remotely saying any of this on my employer's behalf or wishing to represent them...this is just my experience]
I dislike the word ‘Disorder’ which is in the description of many neurological conditions.
I don’t have a neurological disorder, I have a neurological difference.
My hands are currently totally ‘disordered’ and disabled, but my brain isn’t. I like my ADHD and it makes me me. Without it I wouldn’t be me.
I can understand and agree with your saying that ADHD is not a disorder (even though that's the second D of the name). But what if the disordering and disablement of your hand was due to part A of your brain not being connected to part B? Would that be a neurological disorder or difference? I'd call it a disorder.
I dislike the word ‘Disorder’ which is in the description of many neurological conditions.
I don’t have a neurological disorder, I have a neurological difference.
My hands are currently totally ‘disordered’ and disabled, but my brain isn’t. I like my ADHD and it makes me me. Without it I wouldn’t be me.
I can understand and agree with your saying that ADHD is not a disorder (even though that's the second D of the name). But what if the disordering and disablement of your hand was due to part A of your brain not being connected to part B? Would that be a neurological disorder or difference? I'd call it a disorder.
I don't understand what you are trying to say here. Boogie has already said that her hands are 'disordered and disabled'. Even if that was neurological in origin, that wouldn't be a form of neurodiversity like autism, ADHD, OCD etc. It doesn't refer to physical disability with a neurological origin.
I dislike the word ‘Disorder’ which is in the description of many neurological conditions.
I don’t have a neurological disorder, I have a neurological difference.
My hands are currently totally ‘disordered’ and disabled, but my brain isn’t. I like my ADHD and it makes me me. Without it I wouldn’t be me.
I can understand and agree with your saying that ADHD is not a disorder (even though that's the second D of the name). But what if the disordering and disablement of your hand was due to part A of your brain not being connected to part B? Would that be a neurological disorder or difference? I'd call it a disorder.
It is neurological. Spinal stenosis (trapped nerves) and is is very much a disorder. I’m waiting for a op (ACDF) by a neurosurgeon, which I very much hope will put it right.
Reading an article in our local rag and came upon an article where they are quoting the Chairperson of " the New Brunswick Coalition of Persons with Disabilities".
Reading an article in our local rag and came upon an article where they are quoting the Chairperson of " the New Brunswick Coalition of Persons with Disabilities".
Well yes, but organisation names date poorly. We all accept that the NAACP keeps its name for historical reasons without thinking the 'C' word denoted is acceptable. SCOPE (the cerebral palsy charity) waited decades after its previous name had become unacceptable to change it.
Comments
Hello I don't normally do this as I'm cautious on our new system and how it splits threads - but here is a new thread with some posts split off from the main abortion thread so we can discuss topics like 'identity first' and 'person first' language et al.
Thanks!
Louise
Hosting off
This could a thread unto itself!
I think it's a linguistic arms race. When I was little, I think "retarded" was still clinical language even though it had also been downgraded to a schoolyard insult. By the time I started my job, we were told very seriously not to use that word in any professional context because, simply, we don't use that language. I was taught to use "high functioning" and "low functioning" in some senses, but in common use, they seem to go the same way. And really, if you're not in a professional setting, defining a person in that sense is insulting and none of your business.
Honestly, I feel a little touchy even referring to the guys I work with at work in a public setting, but it's also a pertinent observation to anyone who wants to speak blithely of how everyone should just raise disabled kids because it's the right thing to do. It is, but many parents evidently aren't up to it.
Using colloquial language around disability is hazardous. To me, "basically a toddler" is more dignified than giving a detailed description of the the diapers and the feeding, etc.; but I can see how that can be misconstrued as flippant or unprofessional. I also see nothing insulting in being in that state if one is, but that's probably because I work with these guys. I can see how a stranger might get the wrong impression from that. *scowls in their general direction*
When I was in training, I think we were told that the proper term is "cognitively impaired" and I've joked that this particular phrase was such mouthful that it was unlikely to get weaponized. So far it seems to have held.
I've also heard "special" used with condescension. Really, anything that gets associated with "disability" runs a risk of turning into an insult for jerks, because that's how jerks think. It's a problem. The jerks will always be with us. *scowls in their general direction*
This does run straight up against what seems to be a strong consensus among autistic people that they prefer "autistic person" to "person with autism." As if they see the underlying problem that it shouldn't be embarrassing to be considered a person with a "disability," and a number of autistic folks would argue that it's not even a disability. It's just a different way of thinking. There shouldn't be anything intrinsically embarrassing about it.
I suspect I'm autistic myself, but I don't think I'm qualified to put my foot down hard one way or anther in that dispute, beyond to observe its existence with respect.
He had assumed (as so many do) that autism is some sort of illness, rather than a Way Of Being.
I'm autistic myself, so was understandably somewhat miffed...
As I understand it, and please tell me if I'm wrong, this is called 'identity first language' while of course a lot of us had what Bullfrog is talking about drilled into us "person-first language." and some communities very much prefer one and some the other, and some individual people prefer one and some the other... I knew 'identity first' was generally preferred in autism but I'm sure I'm not up on everything.
It's something I'd been thinking would come up here for a while and it would be very good to be made aware of people's preferences.
I'm also aware that the thread title I came up with was maybe not great because we're also talking about non-neurotypicalities ( I am non neurotypical) - so I edited it so the conversation could reach wider -
I, personally, adhere to an affirmative model of disability and wish I didn't hear conference speakers and university policy refer to mental health 'issues' or 'difficulties' or the word 'suffering'. We all have our individual preferences.
I have a strong identity with my bipolar disorder and am quite happy to be described as a manic depressive. I occasionally describe myself as high-functioning but that is probably a reaction against the many people over the years who have told me I don't really have bipolar disorder and obviously know better than the psychiatrist who diagnosed me 25 years ago.
It will vary from person to person. If you'd asked the 11 year old me (had he known about autism) then he'd see his social isolation and difficulties relating to peers and many adults as something he wished weren't so. Perhaps he'd have preferred Person with Autism and seen it as a disability. But what the social model teaches us is that his (11 year old me's) autism was a disability because other people made it one. As an adult there are people who would still make it one - not because they're evil, but because they don't understand; they misinterpret our quirks; they struggle to understand why we struggle to understand why Liverpool's chances next season (which I don't care about) is an acceptable topic of conversation while disused suburban railway stations (which you don't care about) isn't.
But when people are willing to make the effort rather than writing us off as laughable weirdos, then we can contribute to work, to family, to society, in ways that actually use autistic ways of thinking. For example, I am lucky now to work in IT where (stereotype warning) people are used to us, and appreciate what we can do.
And if I weren't autistic, I wouldn't be the person doing that the way I do it.
So the disability is largely subjective rather than objective and I really don't identify as disabled or having a disorder at all. I prefer autistic over ASD - Austistic Spectrum Disorder - for that reason. For me it's all those allegedly normal people with illogical thought patterns and apparent inability to think in a straight line who are disordered
It's been said (and may be exaggerated) that without autistic people we'd all be really enjoying getting on with each other with really rewarding and bonding small talk - in cold caves.
Many of those I work with never develop the ability to use language or discuss its nuances.
I will use the terms an individual prefers, but I still default to person first language and ask my trainees to do so for those who can not or do not express a preference - because I absolutely need everyone around that person, who usually can not advocate for themselves, to see them as a person first and foremost, not a diagnosis, not a cost pressure, not a problem.
Which generally means I come back to my overarching rule - call people what they want to be called. If a particular person (such as Karl) wants to be called "autistic" rather than "person with ASD" or whatever, then call him that. If you're talking about a group of people, you'll generally have to go with whatever group consensus there is. And there will be someone who doesn't like that consensus, and will grumble about it, but it's not going to be possible to please everyone.
And ultimately, language is for communication. If your language doesn't communicate, then it doesn't work. @Bullfrog's use of the toddler comparison to describe the guys he cares for is a case in point - it communicates, clearly and in few words, the rough level of capabilities that his guys have, in a way that several dense paragraphs of text describing their needs and abilities really doesn't.
And there are lots of different spheres of communication. Every group develops specific technical language to address things that it finds important, and that technical language is great for discussions within that group. It doesn't communicate well outside that group.
I was trying to edit my previous post to add:
This (seeing the person over the diagnosis) is particularly important to avoid “diagnostic overshadowing” - for example Request: will you give this person clinical treatment, they keep crying, they don’t sleep properly and they won’t eat the food they normally have, they are autistic and their support plan must need changing. Answer: Do you think that their reaction is any different than any other person who’s father just died ?
"people who are autistic" is certainly possible.
I think there's a significant difference between a condition used as a noun ("She's an X") and a condition used as an adjective ("She's an X person").
Even then there are grey areas, like the use of "Autist" (or indeed "Aspie", though the Nazi links means that's fading) as a self-descriptor.
https://www.nature.com/articles/d41586-018-05112-1
The irony of that review given SB-C's recent involvement with Spectrum10k is breathtaking.
Ah, sorry. It's been such a big issue for autistic folk here I forgot it was UK-specific.
There is also the issue that parents of disabled children often find this language quite upsetting, because their toddler (for example) isn't less of a toddler because they haven't reached standard milestones in the same way. It reinforces the idea that there is a Normal way to be a particular age, and that failing to be part of that norm suggests the person is not really that age - rather than accepting that a disabled, non-verbal 50yo is still actually 50 and should be treated as an adult still, just one with different needs. Why not use 'incontinent and non-verbal' for eg rather than 'like a toddler'? As someone with a bowel condition there's also the huge issue around stigmatising continence issues by associating solely it with infancy or infirm old age, but that's going off-topic I think.
I think it's important to remember that people from any marginalised group talking about what terminology they prefer isn't the same as being told off, or even a correction as such. I do feel like people feel like they know they want to support disabled people (for instance) so therefore being pulled up on language is somehow insulting them or trying to deny that fact. But being asked to adjust your own terminology shouldn't be seen as a huge deal - disabled people can tell when people are genuinely trying to be supportive, but language is still important.
I've worked and volunteered in such environments as well as being disabled, and people working in the field in the UK are overwhelmingly taught to use identity-first language. I think there is a big Pond Difference though, as I often see Americans using language that would be considered unacceptable in any kind of official capacity here, eg 'handicapped'. But then there are terms like sp*z/sp*zzing out which are normal in the US and incredibly offensive in the UK as here it's an offensive term for people with cerebral palsy. This isn't a judgement, just that I think disability culture is Very Different in the US.
That is: the normal rule of English grammar is that if a noun is qualified by an adjective or another noun, the qualifier comes first (e.g. tabby cat, Labour MP, computer technician), but if it's qualified by a prepositional phrase, the head noun comes first (person of colour, cup of tea). But the word order (in English) says nothing about which word is more important, or whether the qualifier is considered an intrinsic property of the head noun or not.
In French, the qualifier always comes second, so French will always be syntactically person-first. But ISTM to be stretching Sapir-Whorf to an absurd degree to suggest that French culture is therefore intrinsically more person-focused.
It reminds of the debates early in my life when people claimed that everybody knew if you used male pronouns or “the man in the street” you were including ‘both’ sexes (no one was talking about multiple expressions of gender at that point), research showed that that kind of language use did bias peoples’ assumptions toward thinking mainly of men.
It is likely that cognitive quirks of humans, like recently and primacy effects, do mean that word order subtly effects our understanding of the relative importance of elements of a sentence - though I honestly can’t cite a research study, just extrapolating from known existing effects.
We probably shouldn’t get side tracked into a grammar discussion though, it’s not really what this is about.
I think it is about grammar, though, unless I'm getting overly literal about the specifics (not unknown for me). That is, I understand you to be saying that putting the person syntactically first means that the person is the more important element in the phrase - so for example, 'person with autism' has a negative effect in that it implies the autism is separable from the person, but this is counterbalanced by a separate positive effect, which is that the syntax emphasises the person. But my claim is that the syntax doesn't emphasise the person, because that's just not how English syntax works, and therefore the negative effect is not counterbalanced.
But in that example, 'he' and 'man' do literally mean 'male person', so it's not surprising that the use of those words colours assumptions. My claim is that being the first element in a noun-phrase does not imply being the most important element, either literally or metaphorically. E.g.:
a.) The cat ate the sausages
b.) It was the cat who ate the sausages
The second sentence puts more emphasis on 'cat' than the first sentence, but the word 'cat' has actually moved to be later in the sentence.
I did some linguistics at university, but not a particularly high level. The research I saw suggested that word-order tells you very little about what's going on under the surface -- although people utter sentences sequentially, word-by-word, the underlying thought processes are a lot less linear.
But I also think it’s more complicated than that, as how we describe something—a thing, a situation, a person—can color how we perceive it. The primary point of person-first descriptors isn’t about syntax or grammar, I don’t think. It’s about inviting and encouraging the speaker/writer and the hearer/reader to rethink and reframe how they perceive the person they’re talking about by using a construction that deviates from the usual English adjective noun construction, and thereby makes one have to think about how they’re describing someone else.
And it’s about respecting how the person or group being talked about actually hears the usual adjective noun construction, regardless of how rules of grammar or syntax suggests they should hear it.
I don’t have a neurological disorder, I have a neurological difference.
My hands are currently totally ‘disordered’ and disabled, but my brain isn’t. I like my ADHD and it makes me me. Without it I wouldn’t be me.
I need a lot of help due to my paralysed hands. I find some people help me and offer help really well. Others ignore my needs, and yet others are patronising and treat me as helpless.
I think it’s a personality thing. Some people are just naturals at making others feel at ease, whatever their difference or disability.
Maybe the difference is whether you'd happily dispense with it if you could. I have mal de debarquement. My dad had Parkinson's disease. My condition diminishes my life to a not insignificant degree, and my father's diminished his life tremendously, and I consider them both disorders.
Quite. This is what I was alluding to in my long post yesterday.
I certainly wouldn’t dispense with it if I could. That’s why I dislike the label ‘disorder’. I’m not disordered, I’m different. I have tried the medication, I hate it - it also stops me being me.
I’m sorry you and your father had these difficulties and I don’t blame you at all for considering them disorders.
That's fair enough - I agree that anything that makes you ask 'Why am I referring to this community in this way and what does it mean?' is a good thing.
Yes - but when different members of that community hear it in different ways, I think you need a very good reason to elevate one interpretation over the other. That is, if some prefer adjective + noun and some prefer noun + preposition + noun, I think you need a good reason to pick the second group over the first as the group that defines the normative terminology.
That's my experience too. For people who can self advocate, trust them. Always.
But for people who can't, it is so easy for some people to assume they're a case before they're a human being that I think it's safer to stick to person-first.
I also think that using clinical language informally is generally rather hazardous unless you're talking about yourself.
And yeah, in general the way you speak will shape the way you think, and may also shape the way other people think. We should all be mindful about how we talk about each other.
Yeah, I'm aware of the problems. We've had trainings on sexual abuse. Thankfully I've never seen that problem in my own life but it's definitely a big thing. Far as reproductive health, it's definitely a need. Relating to both of the above, at my employment male staff simply do not work in female living quarters and do not handle any kind of toileting for women. It's outside of my direct experience but it is definitely a legitimate need.
It's a thing that my employment exists specifically because, yes, these people have particular needs that do set them apart from "normal" society and there is a constant tension between trying to maintain the appearance of normal life while also fully accommodating them. "Least Restrictive Environment" and "Dignity of Risk" are Big Words in my personal vocabulary.
It happens that my end of the institution does involve people who, because of low cognitive function, are entirely dependent on staff for many needs, but I think it would be horrible for someone to generalize about the entire population from my particular experience. I seriously hope nobody is getting that from my typing, though I see how one can leap to that misunderstanding. I use "toddler" as a relatable shorthand for the kinds of needs I'm dealing with, but it's an imperfect analogy and, yes, I should be more careful in my speech. ^^^I could not have put this better if I tried.^^^
[And for the record, I'm not even remotely saying any of this on my employer's behalf or wishing to represent them...this is just my experience]
I can understand and agree with your saying that ADHD is not a disorder (even though that's the second D of the name). But what if the disordering and disablement of your hand was due to part A of your brain not being connected to part B? Would that be a neurological disorder or difference? I'd call it a disorder.
I don't understand what you are trying to say here. Boogie has already said that her hands are 'disordered and disabled'. Even if that was neurological in origin, that wouldn't be a form of neurodiversity like autism, ADHD, OCD etc. It doesn't refer to physical disability with a neurological origin.
It is neurological. Spinal stenosis (trapped nerves) and is is very much a disorder. I’m waiting for a op (ACDF) by a neurosurgeon, which I very much hope will put it right.
Well yes, but organisation names date poorly. We all accept that the NAACP keeps its name for historical reasons without thinking the 'C' word denoted is acceptable. SCOPE (the cerebral palsy charity) waited decades after its previous name had become unacceptable to change it.