Author Topic: If you could change disability jargon...  (Read 1253 times)

Sunny Clouds

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Re: If you could change disability jargon...
« Reply #15 on: 01 Nov 2021 07:19PM »
If I've got it right, one aspect of what you're saying is to do with there being a problem with lumping disabled people together, and I do see that as a problem as well.

I'm not sure why you have a problem with things like cards and lanyards.  My Ataxia UK cards, with a picture of someone falling over and an explanation of ataxia, have defused vast numbers of situations where people were panicking after I fall over, particularly if someone has knocked me over.  Fantastic bits of kit and I passed some on to another woman I know with ataxia who also found them helpful for reassuring people.

I know some people found lanyards very helpful in places like supermarkets, particularly before they became associated with masks.  They can be excellent for telling staff you may need different help.  There's also a member of staff in a shop near me who isn't very verbal  (not sure what the issue is - some sort of neurodiversity?) and I've seen how it helps customers to undertand he's not being rude if he's not chatty.

It's like deaf badges.  I don't wear one but I've been considering it.  It would save me so much time at places like checkouts explaining that my hearing's not good.  I seem to spend half my life explaining to people that I didn't hear them and getting them to repeat stuff or gesture or write it down.  I've seen how for other people, a badge can save loads of time and hassle.

You'll probably think me naive, but I'd never realised before that some people are hostile to things like cards and lanyards.  It's a bit scary really.  I'd always found them helpful to communicate, but I suppose now I'll be looking behind people's smiles and wondering whether they resent my efforts to reassure them they're doing right to be helpful.

I was going to go out tomorrow, but this has made me think. Do other disabled people resent things I wear or show to indicate my differences and needs?  No one's ever said it or looked annoyed but it feels rather scary now.  I wonder whether there's a way of putting my bus pass in a cover that pretends it's not a disabled pass.  I hadn't realised other disabled people feel so angry about those of us who use things that let people know we're disabled in some way.  No one's ever said it to me.  It feels very frightening.  I don't think it's a world I can relate to.  Could those two lads that attacked me and shoved me to the ground have done it because they were also disabled and didn't like the disability signs on my safety vest?  I hadn't thought they might be disabled and resent it rather than just being nasty.  The world suddenly seems a very different place.  I don't know where to go from here.
(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 #16 on: 02 Nov 2021 12:04AM »
I came back to edit my post, embarassed by my reaction.   But I think I might as well say how I feel.

More to the point, after a break, I feel quite angry.

Why should anyone think it's wrong to wear a lanyard or use a card or something else to let people know what their needs are?  Should people with white canes start disguising them as distance-measuring devices or divining rods?  Should people who need help to walk stop using wheely walkers and start pushing baby buggies?

Why's a lanyard worse than any other way of indicating to a member of staff in a shop or elsewhere that you have hidden disabilities?  I don't see that as any worse than wearing a badge or lanyard telling them you're doing deliveries or that you're a security guard for the mall or that you're a staff member.  It's communication.

Which brings me to this:

Quote
We're trapped by our own demands for different 'labels' when the real answer is to apply none

We need words for things.  It's part of communcation.  If we try to avoid using words that relate to disability, we get back to the absurdity of pretending psychiatric hospitals aren't psychiatric hospitals.

There's nothing wrong with having words to indicate the aspects of me that are different, particularly those aspects that mean I need to do things differently, especially if I need help from others.

What do I do, pretend things aren't as they are?  If I have no word, for instance, for my various visual impairments, then what?  Do I pretend I don't have any?  If I do that, do I have to keep faking having been able to do what I couldn't?  It doesn't seem very realistic to me.

When falling, I've occasionally had people think I was faking it because they couldn't understand why I fell and my martial arts background and frequent falls have led to some very adept 'collapsing' safely.  What am I supposed to do if I don't use any sort of labels or cards or anything?  Say "Yes, of course I was faking it"?  Or say "No, I wasn't faking it but I can't tell you why because there aren't any words for it"?

Madness.

What's the  point in being human with our amazing ability to communicate with a vast vocabulary of words if we deny ourselves words for things that make a difference to our lives?

What next?  Not have words for shoe sizes?  For literacy & numeracy?  Not have words for age?

We have our views on which words should be used for things, but the notion of no labels doesn't compute.

OtE - are you ashamed to be disabled?  Sometimes what you write seems very contradictory. We're all contradictory.  But there's an aspect of what you write that I just can't get my head around.  You seem to object to how other deaf people behave, talking of the deaf community in a way that indicates that you don't consider yourself to be part of it.  Yet you seem to take exception as to how various D/deaf & HoH people behave or what abilities they have or what they ask for in the way of help.

And you seem ok to tell us here that you're deaf yet you seem to object to people using objects to tell people what their differences and disabilities are.  You don't want labels.  But you use the deaf label to describe an aspect of yourself.  Let's get rid of the deaf label and all other labels relating to anything connected with it.  If you can't hear someone and they're trying to communicate with you, perhaps a police officer going about their duty.  You have no labels whatsoever for your deafness.  What are you going to say?

I find myself flooded with emotion over this.  Maybe that's what you wanted.  Do you want people like me to be ashamed if we use a card or a lanyard or some other visible item? 

If someone like me uses a card relating to a disability, be it an information card or a "What help I need" card for when I'm struggling to breathe, can't speak and need an ambulance with hardcore stuff to get the air into my closing down airways, or whatever, how does it harm you?  For that matter, how does it harm anyone else?  Things that assist communication can same time, trouble, anxiety, confusion etc.

I'm baffled by all this.

And stressed.

Part of me feels embarassed by that and part of me keeps reminding myself that I promised myself I'd speak up about things I feel strongly about that so many others don't in a world that shames people for almost anything.
(I'm an obsessive problem-solver, so feel free to ignore any suggestions or solutions I offer, even if they sound terribly insistent.)

lankou

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Re: If you could change disability jargon...
« Reply #17 on: 02 Nov 2021 08:19AM »
I am very tempted to wear this:-



On the edge

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Re: If you could change disability jargon...
« Reply #18 on: 02 Nov 2021 11:08AM »
I am very tempted to wear this:-





Luv it (But won't be wearing it :)

On the edge

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Re: If you could change disability jargon...
« Reply #19 on: 02 Nov 2021 11:31AM »
I came back to edit my post, embarassed by my reaction.   But I think I might as well say how I feel.

More to the point, after a break, I feel quite angry.

Why should anyone think it's wrong to wear a lanyard or use a card or something else to let people know what their needs are?  Should people with white canes start disguising them as distance-measuring devices or divining rods?  Should people who need help to walk stop using wheely walkers and start pushing baby buggies?

Why's a lanyard worse than any other way of indicating to a member of staff in a shop or elsewhere that you have hidden disabilities?  I don't see that as any worse than wearing a badge or lanyard telling them you're doing deliveries or that you're a security guard for the mall or that you're a staff member.  It's communication.

Which brings me to this:

Quote
We're trapped by our own demands for different 'labels' when the real answer is to apply none

We need words for things.  It's part of communcation.  If we try to avoid using words that relate to disability, we get back to the absurdity of pretending psychiatric hospitals aren't psychiatric hospitals.

There's nothing wrong with having words to indicate the aspects of me that are different, particularly those aspects that mean I need to do things differently, especially if I need help from others.

What do I do, pretend things aren't as they are?  If I have no word, for instance, for my various visual impairments, then what?  Do I pretend I don't have any?  If I do that, do I have to keep faking having been able to do what I couldn't?  It doesn't seem very realistic to me.

When falling, I've occasionally had people think I was faking it because they couldn't understand why I fell and my martial arts background and frequent falls have led to some very adept 'collapsing' safely.  What am I supposed to do if I don't use any sort of labels or cards or anything?  Say "Yes, of course I was faking it"?  Or say "No, I wasn't faking it but I can't tell you why because there aren't any words for it"?

Madness.

What's the  point in being human with our amazing ability to communicate with a vast vocabulary of words if we deny ourselves words for things that make a difference to our lives?

What next?  Not have words for shoe sizes?  For literacy & numeracy?  Not have words for age?

We have our views on which words should be used for things, but the notion of no labels doesn't compute.

OtE - are you ashamed to be disabled?  Sometimes what you write seems very contradictory. We're all contradictory.  But there's an aspect of what you write that I just can't get my head around.  You seem to object to how other deaf people behave, talking of the deaf community in a way that indicates that you don't consider yourself to be part of it.  Yet you seem to take exception as to how various D/deaf & HoH people behave or what abilities they have or what they ask for in the way of help.

And you seem ok to tell us here that you're deaf yet you seem to object to people using objects to tell people what their differences and disabilities are.  You don't want labels.  But you use the deaf label to describe an aspect of yourself.  Let's get rid of the deaf label and all other labels relating to anything connected with it.  If you can't hear someone and they're trying to communicate with you, perhaps a police officer going about their duty.  You have no labels whatsoever for your deafness.  What are you going to say?

I find myself flooded with emotion over this.  Maybe that's what you wanted.  Do you want people like me to be ashamed if we use a card or a lanyard or some other visible item? 

If someone like me uses a card relating to a disability, be it an information card or a "What help I need" card for when I'm struggling to breathe, can't speak and need an ambulance with hardcore stuff to get the air into my closing down airways, or whatever, how does it harm you?  For that matter, how does it harm anyone else?  Things that assist communication can same time, trouble, anxiety, confusion etc.

I'm baffled by all this.

And stressed.

Part of me feels embarassed by that and part of me keeps reminding myself that I promised myself I'd speak up about things I feel strongly about that so many others don't in a world that shames people for almost anything.


My response was not a criticism as such of lanyards etc but to prove the point on advertising your issue, in the hope this makes inroads to inclusion and understanding, I've not seen that.  Of course, people wear whatever they want if they feel it helps.  I know areas of deaf people reject disability, (Some, other disabled people!), especially in regards to deafness itself. 

Most responses went along the lines 'I am not disabled, but hearing people are disabling me.'  A message they still put out.    Others saw it as a rejection of deafness and indeed hearing loss, as a disabling factor in their lives.   They fell foul of their own peers and Hard of Hearing, who WERE/ARE suffering as a result of loss via trauma and isolation etc, many lost friends, families broke up, mental health was incurred, isolation a norm, and they were horrified at Deaf campaigns to 'trivialize' or dismiss its effects, or that deaf culture and language was the way forward.  It wasn't for the majority.

They responded by telling born Deaf 'don't talk about things you know nothing about', 'you may be deaf, but you are no authority and have no experience of losing hearing.'     Deaf respond 'You know nothing about never having had it..'  Then bandy culture and language as well as part of making a point they missed day one.

Their image as an isolated sector reliant on each other and utilizing translating support, just suggested a VERY disabled sector to the mainstream, image was all it didn't suggest independence at all.  To a degree do cards and lanyards suggest that? In their own circles, they can get immune to others realities.   But, there is a polarisation.  I've said it before loss defines disability in this respect.  which support alone, only partially addresses.

It is the sensory loss area that seems to invent all these tags and labels on a very regular basis, (albeit I am not up with other disabled areas as to how many variations on a theme they are using), but what I see in media is they act for all the general good mostly, the Deaf don't.  When the very first DDA of 1995 was mooted deaf didn't turn up in defiance of the term disability.  I was the sole person deaf there at the launch.


I also did research on NHS sites etc (Areas the deaf reject too!), and found my area had 13 'definitions' of deafness all listed under disabilities, and another 9 areas dedicated to 'Deaf' alone as well as multi-inclusions in minority inclusion, language, and access areas.  No other disabled area had that coverage.  Surprisingly 80% of all this confused campaigning came from in or around London or Glasgow/Scotland.

Wales had appeared next to no viable campaigning going on, (they recently rejected the BSL Bill proposal too), due no doubt to the demise of deaf schools there and the dearth of deaf clubs.  NI did better. But they all quoted the same mantra. I spent years plugging away for inclusion in the past with hearing loss card-carrying, lanyards, badges etc. That was mainly a Hearing aid/loss area that did it.  Most were turned down outright by Deaf people, who rejected dedicated access to 999 at the time, as well as refusing to have Minicoms, because 'Hearing don't have to do that, so why should I?'.  Now every single one of them has telephonic access but still not using them to move outwards but strengthening own area.
« Last Edit: 02 Nov 2021 11:44AM by On the edge »

Sunny Clouds

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Re: If you could change disability jargon...
« Reply #20 on: 02 Nov 2021 05:56PM »
Deleted my post - too rambly.
« Last Edit: 02 Nov 2021 10:11PM by Sunny Clouds »
(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 #21 on: 02 Nov 2021 06:29PM »
Deleted my post - too rambly.
« Last Edit: 02 Nov 2021 10:11PM by Sunny Clouds »
(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 #22 on: 02 Nov 2021 10:10PM »
Deleted my post - too rambly.
« Last Edit: 02 Nov 2021 10:11PM by Sunny Clouds »
(I'm an obsessive problem-solver, so feel free to ignore any suggestions or solutions I offer, even if they sound terribly insistent.)

lankou

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Re: If you could change disability jargon...
« Reply #23 on: 03 Nov 2021 07:02AM »
Deleted my post - too rambly.


Have you contracted Bojo-The-Clown disease?

Sunny Clouds

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Re: If you could change disability jargon...
« Reply #24 on: 03 Nov 2021 12:44PM »
Deleted my post - too rambly.


Have you contracted Bojo-The-Clown disease?

Nah, I don't know how to do that desperate sideways look for a spad to tell me what to say.

I was having a bad day yesterday.  An old friend who's very stressed out called me in the morning for a couple of hours at the end of his tether, then I went to an exercise group that's a couple of scary bus journeys away, then I took another scary bus journey to a bank and got knocked over by a youngster not paying attention and hit my jaw.  I was very confuddled and people were kind.

The youngster came to help but I pretended I didn't know who'd done it, just made a thing of how it was obviously accidental.

I don't think OtE meant anyone to feel uncomfortable, but suddenly I felt awkward about telling people about my disabilities or giving them cards or anything and I tried to hide my disabled pass on the bus.

I hadn't realisd that other disabled people might feel so hostile to the social model of disability, which to me is just about adjusting for everyone's differences.  Using the classic example of seeing someone who can't climb a flight of stairs into a public building being disabled by the lack of a ramp rather than by their inability to climb stairs, the way I'd always seen it is that if you put a ramp in, it doesn't just help people reliant on wheelchairs, it helps people with baby  buggies and people with arthritic knees and children with legs too short to cope with steps and people who are tired and people who are pushing/pulling something on wheels like a luggage trolley or the sort of thing you carry parcels or equipment on etc.

Yesterday, I felt discombobulated like I'd completely misinterpreted the world around me, but whilst I was out and about, I saw how it is and now I'm registering that when OtE refers to this sort of thing, he must just move in very, very different circles from where I do.
(I'm an obsessive problem-solver, so feel free to ignore any suggestions or solutions I offer, even if they sound terribly insistent.)

lankou

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Re: If you could change disability jargon...
« Reply #25 on: 03 Nov 2021 01:13PM »


I hadn't realisd that other disabled people might feel so hostile to the social model of disability,


That is because (excuse my language) Mansel Aylwards bastardised version of it is what the DWP uses for disability "assessments."

Sunny Clouds

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Re: If you could change disability jargon...
« Reply #26 on: 03 Nov 2021 02:01PM »
Ah yes, the potentially useful but a bit vague biopsychosocial model that got horribly distorted. 

Where convenient to certain politicians and theorists, psycho became "just imagining it" and social became "because it's the trendy thing".

And I think I'd map bio onto the urge by some people, particularly certain politicians, to blame what they see as moral failings (i.e. being a psychosocial faking benny scrounger) as something to do with epigenetics.

Because of course if you tell people they're scrounging, it'll improve their genetics.

Aha, I've gone from rambly to ranty - I'm perking up!

One thing I continue to find very difficult is just how much vocabulary to do with what I'll broadly call equality and fairness gets distorted and used against people, whether it's vocabulary saying "we want to be treated as well as other people" or whether it's "maybe this would explain it if we did more research into it".

It's a funny world.
(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 #27 on: 03 Nov 2021 05:08PM »
Thinking further on the issue of whether labelling yourself e.g. with something visible, increases or decreases inclusion, doesn't that depend on context?

Where I live, I struggle to think of any everyday context where telling others you've got extra difficulties, disabilities, needs or whatever by carrying or using or wearing something that tells people about them is a negative, except very occasionally with nasty thugs who, quite frankly, would attack you anyway on the basis of perceived weakness. 

Even if lots of people did it, would it outweigh the help?  It's like the illustration I give of re-branding psychiatric hospitals and making the signage small etc.  Psychiatric units can try to be furtive about what they are, but you can still ask total strangers the way to the 'mental hospital' or the 'asylum' or the 'psychiatric unit' or whatever and get directed there, maybe even offered help to get there.

I'm realising now that I must be very privileged in the places where I've lived in terms of people's attitudes.  No, not all wonderful. There are unpleasant people everywhere.  But amazing kindness as well.
(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 #28 on: 03 Nov 2021 05:57PM »
I think sometimes in the disability community there's a sort of belief of either heirarchy or ownership of disabilities and they may view people using lanyards or cards as usurping their position in their perceived view of heirarchy or importance.


Even within a single specific disability there will be differing views on how they would like to be treated or terms used to address them in communications and I think it's helpful to accept that no single view is right and others may feel differently to how we feel ourselves and that's okay. It's good even, and respectful.


I used to belong to the sunflower invisible disabilities Facebook group for years before Covid and was using my lanyard to gain a seat on busy trains. Then Covid came along and people realised that a sunflower lanyard could demonstrate their exemption from mask wearing so the use of the lanyards escalated massively to the extent that Joe Public tends to think that's the purpose of sunflower lanyards, to signal an exemption from mask wearing. The anger of the Facebook group members towards this influx of "usurpers" who didn't really have a disability as defined within the Equality Act (in their view) was so unpleasant that I left the group. A definite sense of ownership, superiority and judgement of others wasn't nice to be witnessed.


I have pondered on how Joe Public will respond to people wearing and using their sunflower lanyards long after the need for masks has gone. They'll probably find it very bizarre.

Sunny Clouds

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Re: If you could change disability jargon...
« Reply #29 on: 03 Nov 2021 06:14PM »
Yes mask + sunflower lanyard has become very contentious.

The whole mask thing challenges our view of things like disability and exemption etc.

I'm probably unusual in one respect in terms of how I perceive people who don't wear masks.  You see, whilst some reasonably consider themselves to be exempt in a range of ways that most people would probably broadly accept, and whilst some appear to me to be selfish wotsits, and whilst some appear to me to be people who for whatever reason don't believe in the necessity or helpfulness of masks, I think there's another category not often mentioned.

It's people who, because of toxic anti-mask messages, genuinely believe that wearing a mask is dangerous.  People who are genuinely scared that if they wear a mask, they'll breathe in their own exhaled air and this will somehow harm them.

So then for all that I find this terribly frustrating, I have to concede that being very afraid to wear a mask is a genuine ground for exemption.

And for me, that epitomises the difficulties surrounding our notions of what is or isn't genuine disability/impairment/difficulty etc.

As for heirarchies, gosh, nightmaresville.  I love moving in the sort of disability circles that stick to the mantra 'no heirarchy of disability', but human society is all about heirarchy, and politicians love it, don't they.  Lots of others trying to get us to do things, for instance, buy a product or service, push heirarchy buttons.  So that finds it's way into disability contexts, it's just that usually I'm the sort of person that tries to ignore it, finding it uncomfortable.

I don't know if there'll ever be a way of tackling the human need for heirarchy in a way that actually works other than temporarily.  We can try to improve things a bit, though.
(I'm an obsessive problem-solver, so feel free to ignore any suggestions or solutions I offer, even if they sound terribly insistent.)