Author Topic: If you could change disability jargon...  (Read 1251 times)

Sunny Clouds

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If you could change disability jargon...
« on: 30 Oct 2021 06:50PM »
...what would you change?  (You're allowed to change your mind later about what you'd change!)

As you know, I'm obsessed with linguistics.

I was very annoyed by a Mail Online article in which a journalist, who is American (according to various sources) followed American custom and practice, not British custom and practice, and used a term coined as a psychiatric term as an insult.  The term in question was schizophrenic.

In the UK, social nicety would usually make it ok to use 'manic' in a non-diagnostic sense, albeit not as an insult, but not 'schizophrenic'. 

My personal misuse loathing is 'passive aggressive' which I regard as an obnoxious diagnosis anyway, but its use increasingly as a form of insult is what I regard as cruelty to people with a passive aggressive personality disorder diagnosis.

Think how 'spastic' stopped being used after it and variations on it such as 'spaz' and 'spazza' became everyday insults.  Ditto 'moron' and 'retard'.

Some people with schizophrenia started pushing for the word to stop being used and for the term psychotic to be used instead.  But whilst 'schizo' and 'schizophrenic' are used as insults, 'psychotic', often abbreviated to 'psycho', gets confused with 'psychopathic' and all that cluster of words gets used to mean dangerous and violent.

I get annoyed with 'swivel-eyed' as an insult.  I want to scream "You try living life with swivel eyes - I don't need you reinforcing people's assumptions that if my eyes are wandering round, I'm expressing feelings I'm not!"

In a perfect world, given that English has oodles of words for everything, I'd make it utterly socially unacceptable to use terms that describe disabilities, whether technical terms or not, as insults or other than as per a technical or literal description of the condition.

It wouldn't work, though, would it?  Someone would be bound to say it's a block on freedom of speech, and if I protested, I'd be told I'm just a swivel-eyed lunatic obsessively-compulsively turning a deaf ear to them like all the demented retarded midgets who want to control people's speech...

Ah, but what if it became the social norm only to use words that describe disabilities in a non-textbook sense if used as compliments?  It'll never happen, but I can dream, can't I?

 
(I'm an obsessive problem-solver, so feel free to ignore any suggestions or solutions I offer, even if they sound terribly insistent.)

Fiz

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Re: If you could change disability jargon...
« Reply #1 on: 31 Oct 2021 07:15AM »
Any kind of emotional distress or emotional issues that cause problems for others then being called "disorders". Emotions are normal and emotional distress or emotional difficulties shouldn't be "disordered", nor should anyone deem a personality be disordered. What is normal? We're all unique, just like everybody else.

Sunny Clouds

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Re: If you could change disability jargon...
« Reply #2 on: 31 Oct 2021 11:49AM »
Disorders, aargh!  Conditions I can cope with.

Then there's the American notion of 'behavioural health' that's beginning to drift over here.  You can see how they led the way on making mental issues police issues, hence the 'defund' call, which so many people over here interpret as being simply take away police funding, not take away funding from the police and give it to others to do things the police shouldn't be doing anyway, like welfare/wellness checks (my mind's gone blank on which term they use - maybe the use  both). 

Over here that drift was followed with the SIM scheme, turning what were perceived as behavioural problems into police matters.  Fortunately the backlash has caused mental health trust after mental health trust to embarassedly back off.

But it's part of the same thing, isn't it?

That being said, I can't help but think there are similar issues with a range of physical conditions that are disabling.  It frustrates me because a lot of conditions either wouldn't be so much of an obstacle or would even be an asset if society made the most of people's pluses not their minuses.

It's politically logical, though, in terms of the  behaviour of certain sorts of politically and financially powerful people, and it has been spread by the media.

A bit about mental jargon next...
(I'm an obsessive problem-solver, so feel free to ignore any suggestions or solutions I offer, even if they sound terribly insistent.)

Sunny Clouds

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Re: If you could change disability jargon...
« Reply #3 on: 31 Oct 2021 12:08PM »
A couple of things.

1. 'Stigma'.  We've had campaign after campaign about the stigma of 'mental health'.  How many times do you put the word 'stigma' and 'mental' together before at a subconscious level people end up feeling that there is something essentially stigmatising about mental stuff, i.e. that that's in the nature of mental stuff, not something to be changed?

That goes with things like the renaming of psychiatric hospitals in a city in the Midlands.  They had a 'psychiatric hospital' and then they had 'centres' with silly names.  One of them was, for the man in the street, unfamiliar and unspellable.



Visiting a friend in the main Queen Elizabeth hospital there a few years back, I've discussed this with a couple of taxi drivers.  People try to ask where they want to go, feel confused, then say something like "Oh, you know, the psychiatric hospital" or "Or whatever the mental place is called." 

I noticed that the signs for the physical stuff and also pointing to other buildings nearby like the Women's Hospital were nice and clear like road signs, but the ones for the psychiatric units were small and rare, as if cowering with embarassment.

So if you'd got a broken arm or cancer or deafness, you could find the way unless you were visually impaired, but if you had a mental problem, you'd got to ask people the way. 

But hey, that's all part of tackling stigma.



2. 'Service user'.  Very damaging term.  Why?

Well, it's not traditionally a health term.  I think it came from social services.  Well with council services, it's ok to use things.  There's a sense of taxpayer entitlement, so it's good to use the libary.  When you get there, it's good to use the books, the catalogue, the information desk.  And if you use the librarian, it's understood to be the librarian's technical skills you're using, just as if you use a plumber or use a solicitor.

But in psychiatric circles, it can have unpleasant overtones.  Why?  Well, think of it in terms of basic human intelligence and functioning.  If you use a thing, that's a sign of intelligence or competence.  But if you use a person, are you de-humanising them?  Map it onto the word manipulate.  If you manipulate a tool or a machine, that's good, isn't it?  But if you manipulate a person, that's got very different undertones.

So if you're a service user in mental health, there can be those undertones because of the way people with certain labels are conceptualised.  User can be seen as mis-user.  And I think that where this is a subconscious link, it does damage by not being challenged.

I wonder whether there's better jargon to be had about mental, erm, health, conditions, disorders, differences, stuff?
(I'm an obsessive problem-solver, so feel free to ignore any suggestions or solutions I offer, even if they sound terribly insistent.)

ditchdwellers

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Re: If you could change disability jargon...
« Reply #4 on: 31 Oct 2021 12:51PM »
This is going slightly off tangent, but I don't like the misappropriation of the term 'allergy '. Having an allergic reaction to something can be life-threatening or cause serious illness yet too many people wrongly say they have an allergy without any medical need. Often it seems to be to justify their dietary choices. This seems to me to me to be wrong. Some people with genuine allergies do not get to choose what foods they eat; for the rest it may be for for lifestyle or healthy eating reasons. Not a life or death decision.

Sunny Clouds

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Re: If you could change disability jargon...
« Reply #5 on: 31 Oct 2021 05:04PM »
Yes, allergy is a very problematic word, not helped by the fact that the term sensitivity then gets used in ways that mean that if you have a sensitivity to a food or something environmental, it may not sound like it's an immune problem, so you may use allergy when sensitivity is a better word.

That being said, it also doesn't help that  allergies can be both mild and severe.  That means that people who have mild allergies may not appreciate how severe allergies can be and people can misunderstand what is or isn't allergy.  If you have a mild food allergy, you may think that someone with a severe one is just making a fuss about nothing or even faking it.

As a lighthearted aside, when I moved back into the family home, I noticed I was having some lung and skin problems and finally, thinking about problems I'd had elsewhere in life, including in this house and one other, concluded that it was an allergy to a particular tree mould.  I also thought about my father.  Yes, same symptoms that went away after a while in a care home.

It was at least three years after I moved back in that it dawned on me that it's not an allergy, it's my immune system working hard to protect me from a mould that can grow in and on humans, even though that's not it's usual habitat.  It's the same immune process as an allergy, but it's not an allergy because the threat is real from an immune perspective.  Yet as someone who grew up with an atopy problem, you'd think I'd have sussed that quickly.

The other thing is that years ago, I thought I might have a problem with a food, probably some mild to moderate allergy, and doctors, taking my symptoms seriously (whilst I was a hospital inpatient on a rheumatology ward), not least because they could see I was methodically working my way through an exclusion diet, checked me out for coeliac disease.  Negative.  But what was the problem?  Oh well, not like the reaction I get to something they put in some sorts of cigarettes that gives me 'blues-and-twos' breathing black-out.

Finally, I sussed it.  I have limited lactose tolerance.  I hadn't known that you can have only a bit of lactose tolerance and that it can vary.  I'd thought it was all or nothing.

But you can see why I'd suspect allergy.

I grew up with a range of environmental allergies.  When my immunosuppressant medication was reduced just before the pandemic, it was an 'interesting' experience!  I'd forgotten what it was like to walk along the road and find my nose suddenly streaming as I walk past a garden, or be fine with wood smoke and then suddenly be grabbing for my inhaler because someone's put something in their wood burner that's got some sort of old paint or varnish on it.

But seriously, because of the way our bodies react to things, and because allergies can cause a range of reactions, I think it's very understandable if people who think they have a dietary problem with a food mentally class it as an allergy where actually it may be something different.

I wish there was better information about this, because it could also save lives where people start off with a mild food allergy then it escalates when they'd thought that whether you have a mild allergy to something or a severe allergy is a stable thing.  I had a friend who had a mild gluten allergy and thought that was just how it was and when it got worse, she was caught unawares.
(I'm an obsessive problem-solver, so feel free to ignore any suggestions or solutions I offer, even if they sound terribly insistent.)

Fiz

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Re: If you could change disability jargon...
« Reply #6 on: 31 Oct 2021 05:19PM »


Hands up, I have to admit that I have told a few people that I am allergic to camping 🤭


The fact that they laugh means they realise that I don't actually have an allergy to camping but I use it to convey my absolute aversion to it, something I would never ever consider.

Sunny Clouds

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Re: If you could change disability jargon...
« Reply #7 on: 31 Oct 2021 06:08PM »
That sort of language is difficult.  It's perfectly normal social English usage to use words in a metaphorical sense.

On the other hand, then you get someone who's got a problem with a food, but not yet (if ever) a diagnosed allergy.  If they say they're allergic to it, do they mean an allergy in a literal sense, or metaphorical?

Then you get people who believe that particular foods aren't good for them.  From the point of their understanding, where does unhealthy end and allergy begin?

I suppose mapping that back onto the mental health jargon thing, a lot of it to me seems to be about education.  And the messages that news outlets, blogs, advertisers etc. put out.  Tabloid aargh. 

That being said, on the allergy or other food problem front, I remember a while back when I found that in recent decades, manufacturers of wheat for bread in various countries including the UK have selected & cross-bred for higher gluten levels.  So let's take coeliac disease as what I'll call 'classic allergy', i.e. keep encountering it and your immune system can go into overdrive, eating bread with higher and higher levels of gluten, which the human body can develop an allergy to, would seem to me to increase the likelihood of more people developing coeliac disease and other conditions such as gluten ataxia.

Also, and I can't cite evidence for this but in the past read a bit about it, because of a mixture of globalisation and what I'll call 'messing around with the nature of our foodstuffs', we have different gut flora mixes from before, challenge our immune systems with a wider range of 'threats' than before etc.  I wonder how our atopy rates now compare with a hundred years ago? 

I think we need new vocabulary.  Maybe wider usage of phrases with adjectives - possible allergy, mild allergy, moderate allergy, severe allergy, dangerous allergy.

Or even some new words.  We already  have phrases like "that food doesn't agree with me".   A couple of new everyday-sounding easy to pronounce words to mean 'maybe allergy, maybe not, but my body doesn't like it' and 'this stuff could kill me' to park either side of 'allergy'.

I hope you lot aren't developing an 'allergy' to my linguistic obsessions!
(I'm an obsessive problem-solver, so feel free to ignore any suggestions or solutions I offer, even if they sound terribly insistent.)

Fiz

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Re: If you could change disability jargon...
« Reply #8 on: 31 Oct 2021 06:53PM »
😂

Sunny Clouds

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Re: If you could change disability jargon...
« Reply #9 on: 31 Oct 2021 07:05PM »
Here, have this virtual antihistamine eye spray!
(I'm an obsessive problem-solver, so feel free to ignore any suggestions or solutions I offer, even if they sound terribly insistent.)

ditchdwellers

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Re: If you could change disability jargon...
« Reply #10 on: 01 Nov 2021 08:27AM »
Fiz, I don't see anything wrong with using the term allergy to camping in the way you do. It made me giggle!


Sunny, I'm pleased you brought up the issue of added gluten to commercially produced bread. I find this sort of bread difficult to digest and it leaves me feeling bloated, so I changed to an artisan sour dough that the milkman delivers and I don't have the same problems at all. It's more expensive to buy this however I'm prepared to make other sacrifices to have food that I can actually eat without consequences!

Sunny Clouds

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Re: If you could change disability jargon...
« Reply #11 on: 01 Nov 2021 11:17AM »
Years ago, when I was on the "What is it, let's get rid of the usual suspects like gluten" rampage, I took to making chapatis with a range of flours such as maize, rice, chickpea/gram etc.   A Punjabi friend taught me to use hot water for maizemeal.  I used to mix the different flours. 

The main reasons I don't make stuff like now is that I've abandoned my hob.  If it won't go in my microwave, countertop oven, thermos, stockpot or toaster it doesn't get made.  And laziness.  I used to make wheatflour bread in the oven.  Then I moved down to a breadmaker then stopped that. 

But you've reminded me there's loads of different bread to be had out there in the shops and markets, depending on where you look.

And also all this is a reminder to me to use my limited lactose tolerance as another reason to make more of an effort to kick my biscuit habit.  It started during lockdown then I thought I'd kicked it, then recently I started again.  I've been exploring what other foods make me feel I'm having a snacky treat. 

There you go, I rabbit on a bit about misuse of disability jargon and end up with helpful thoughts/info from others.

I still think I need to work on my 'thesis length analysis disorder'.  I wonder if I can get therapy for it.  I think my sessions would need to be 3-4 hours, though.  On a more serious note, though, I mention that because after a few interactions with peope telling me I talk too much, think too much, analyse things too much etc., I suddenly recognised it's rather like telling someone they limp too much.  Why do we see limping as a negative in the way we do?  We focus on the 'bad' leg not the 'good' leg. Why aren't we seeing limping as one leg compensating for the other, stepping up to the mark, like a spouse moving from equal couple to supporting a spouse in difficulties?

A 'disorder' mentality rather than a 'compensation' or 'variation' or 'individual difference' mentality.
(I'm an obsessive problem-solver, so feel free to ignore any suggestions or solutions I offer, even if they sound terribly insistent.)

Sunshine Meadows

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Re: If you could change disability jargon...
« Reply #12 on: 01 Nov 2021 11:57AM »
 :f_smiley: :thumbsup:


Online I have noticed that youngsters can end up policing words and phrases, it is what we used to call political correctness and at the same time so much more.


There are words I don't like to see like handicapped or retard, but when people use those words it tells me more about them than it does about the people they are referring too One interesting point is my dad would  refer to me as handicapped when strangers were around and my mum did the same only used the word disabled instead. Yet to the entire family I was deemed to need/be deserving of the least amount of 'freely' given help.


Maybe help is a word that puts me in a minefield because there can be so many strings attached, things the puppeteer might not be fully aware of even.


Already mentioned service user #cough cough eeek no  :f_steam:

Sunny Clouds

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Re: If you could change disability jargon...
« Reply #13 on: 01 Nov 2021 03:15PM »
I think it's difficult about youngsters policing things.

Let me put it in the context of other activities.  I see today's students shouting and marching and campaigning and I think "Good for you!" What? Well we campaigned as well, climbing on roofs and hanging banners etc. 

These days some of their campaigns from small to big are about things I never thought to campaign about.  For instance, these days they get very vocal about whether they get value for money.  I think of some of the rubbish teaching I had and a lack of proper re-sit provision when ill or, in my case, an amanuensis after an accident making my writing hand temporarily unusable. 

And generations of youngsters around the world have been the ones that often campaigned to change how we relate to one another.  Some are what I mentally categorise as 'nasty extremists' but, controversial me, I think that that sort of thing is almost always led by older people.

But daring to campaign for girls to be able to study boys' subjects or vice-versa?  White students daring to say they wanted the black students in their classes?  That sort of thing often actually dominated by the youngsters.

So it's difficult on the words & phrases thing, because I don't think we should shame 'oldies' for using out of date words, but if youngsters have an attitude that they'll speak up for kinder language, I'm behind them.

Of course, that's according to my biases.  If youngsters want to police the language of those that want to be kind and tell us...oh dear, are my prejudices showing?

All very difficult.
(I'm an obsessive problem-solver, so feel free to ignore any suggestions or solutions I offer, even if they sound terribly insistent.)

On the edge

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Re: If you could change disability jargon...
« Reply #14 on: 01 Nov 2021 03:38PM »
...what would you change?  (You're allowed to change your mind later about what you'd change!)

As you know, I'm obsessed with linguistics.

I was very annoyed by a Mail Online article in which a journalist, who is American (according to various sources) followed American custom and practice, not British custom and practice, and used a term coined as a psychiatric term as an insult.  The term in question was schizophrenic.

In the UK, social nicety would usually make it ok to use 'manic' in a non-diagnostic sense, albeit not as an insult, but not 'schizophrenic'. 

My personal misuse loathing is 'passive aggressive' which I regard as an obnoxious diagnosis anyway, but its use increasingly as a form of insult is what I regard as cruelty to people with a passive aggressive personality disorder diagnosis.

Think how 'spastic' stopped being used after it and variations on it such as 'spaz' and 'spazza' became everyday insults.  Ditto 'moron' and 'retard'.

Some people with schizophrenia started pushing for the word to stop being used and for the term psychotic to be used instead.  But whilst 'schizo' and 'schizophrenic' are used as insults, 'psychotic', often abbreviated to 'psycho', gets confused with 'psychopathic' and all that cluster of words gets used to mean dangerous and violent.

I get annoyed with 'swivel-eyed' as an insult.  I want to scream "You try living life with swivel eyes - I don't need you reinforcing people's assumptions that if my eyes are wandering round, I'm expressing feelings I'm not!"

In a perfect world, given that English has oodles of words for everything, I'd make it utterly socially unacceptable to use terms that describe disabilities, whether technical terms or not, as insults or other than as per a technical or literal description of the condition.

It wouldn't work, though, would it?  Someone would be bound to say it's a block on freedom of speech, and if I protested, I'd be told I'm just a swivel-eyed lunatic obsessively-compulsively turning a deaf ear to them like all the demented retarded midgets who want to control people's speech...

Ah, but what if it became the social norm only to use words that describe disabilities in a non-textbook sense if used as compliments?  It'll never happen, but I can dream, can't I?


We're trapped by our own demands for different 'labels' when the real answer is to apply none, we are people first who happen to have a disability, making the disablement prime focus lessens the emphasis on us as individuals or people like everyone else. Of course, it kills your desire to be seen as more than the disability.

Goodness knows charities repeatedly 're-brand' (The RNID did it 3 times mostly to dump the deaf signer), as well to try keeping up, and even other disabled areas are disabling themselves daily with silly name changes, new identity labels, that just means we are still second class citizens but calling ourselves something else to offset the reality will sort it, it's like a parallel universe to live, and for some by choice, I expect there IS a psychological description for it all but...  I'm wondering how we can manage as we keep shooting ourselves in the foot twice daily.  In an online world where 4-6B are around, shouting 'Hey I am here too!' seems the justification for most of it.

I realize people get annoyed with the 'mental' assumption of disability, but we DO appear confused ourselves with the mixed  'messages'  and divisive 'acceptance' approaches and 'rules of engagement, we keep dishing out to the long-suffering 'society, which makes some 'more' acceptable, or some higher priority, than others, and a sort of hierarchy kicks in, immediately suggesting discrimination of some kind.

Do we even know we are doing it? I suppose it comes with trying to compete with 1,000s of other disabled people who are convinced their particular experience justifies a total re-think of how it, or yours, should be seen.

Inclusion and Diversity were the first victims of it.  Disability areas are a bit further forward in dropping the disabled tags which hang around their, and our necks like the proverbial albatross.  But the whole area of disablement is in flux and anything goes at present, if able-bodied can not make any sense of it all, how can we?  Disabled tribalism? You can read here how it works, people wanting 'cards', or 'lanyards' or 'special treatments', differing awareness, and personal 'access formats', etc to promote their issue, it all adds up to a contradiction, you won't be seen as a person but an issue to be addressed. 


No UK system can support 80m people all with different views of how they should be seen.  So loudest voice determines, which means the individual has next to no chance of any success. Forget the labels as the old adage suggested, they are for jars really, why on earth keep inventing new ones?
« Last Edit: 01 Nov 2021 03:47PM by On the edge »