Author Topic: If you could change disability jargon...  (Read 1252 times)

KizzyKazaer

  • Global Moderator
  • Super Hero Member
  • *****
  • Posts: 9054
Re: If you could change disability jargon...
« Reply #30 on: 03 Nov 2021 06:46PM »
Sunny, I smiled when you mentioned 'trying to hide your disabled bus pass'.  In the days when I was still entitled to one (when people like me got mobility component under the DLA system) using the thing was always a furtive and slightly shameful business for me because I 'don't look disabled'.  Actually, sometimes I feel like an imposter in the disability world - it seems relatively recently that people with mental illness became 'accepted' as disabled (there certainly wasn't any DLA available or anything like that when I exited one particularly long hospital stay in 1984).

To that end, I wouldn't even want to 'advertise' having a hidden disability to the general public.  I'd rather my 'status', as it were, remained between me, the DWP and close family/friends..


And I know it's not strictly jargon as used in professional circles, but how I loathe seeing a film description where the baddie is a 'psychotic killer'!!  We're really more in danger of hurting ourselves, not other people, during an episode  :f_erm: 

Sunny Clouds

  • Charter Member
  • Super Hero Member
  • ******
  • Posts: 5607
Re: If you could change disability jargon...
« Reply #31 on: 03 Nov 2021 06:59PM »
It's a difficult balance.

I have found times in life when telling people openly that I'm disabled by carrying or wearing something has been very helpful, whether in the form of spontaneous offers of help or in the form of people getting less fraught if something happens.

On the other hand, it can feel in some contexts like wearing a black triangle.

I suppose it depends what it is, and where and how you use it.

I was in a bit of a state when I mentioned the disabled pass.  I read what OtE wrote and had a strong emotional panic reaction.  Not a sense that people without my problems might mind but that there might be other disabled people out there that would resent me.

Yet I can't say I've ever experienced that in real life.  I have had the odd twerp, but usually it's not when people know I have hidden disabilities, but when they don't, e.g. where I've been knocked over and if I don't look like I've been pushed or like I've tripped over, I've had people think I'm faking it, probably for a dodgy compensation claim.

The whole issue of what you do or don't tell people is swirling round my head.  Lots of questions.  It overlaps with the jargon thing because if you do tell people, what do you tell them, how do you tell them?  No quick or easy answer, I suppose.
(I'm an obsessive problem-solver, so feel free to ignore any suggestions or solutions I offer, even if they sound terribly insistent.)

lankou

  • Charter Member
  • Hero Member
  • *****
  • Posts: 3128
Re: If you could change disability jargon...
« Reply #32 on: 03 Nov 2021 07:47PM »



And I know it's not strictly jargon as used in professional circles, but how I loathe seeing a film description where the baddie is a 'psychotic killer'!!  We're really more in danger of hurting ourselves, not other people, during an episode  :f_erm:


I came to the conclusion a few years ago, I know far more psychopaths than is normal.

ally

  • Hero Member
  • *****
  • Posts: 557
Re: If you could change disability jargon...
« Reply #33 on: 03 Nov 2021 09:29PM »
I’m profoundly deaf, and use total communication, lip reading, signing, and whatever else helps.   Therefore, I can’t hide the fact I’m deaf.  I use under elbow crutches.  Without them, I’m at risk of falling, and, I have an uneven gait.  I can be in a wheelchair at times.  I cant hide that, as it’s to large to conceal.   At the moment, I’ve fractured the radial head of my elbow.  I’m in a fetching black sling. And, cant hide that either.  To be honest, I’m not bothered about others seeing me as disabled.  I’m in everyone’s face like it or lump it.  I do understand why some like the idea of lanyards or cards for hidden disabilities.   However, in my case it’s not really hidden. Even so, I don’t get many, if any concessions when out. 


People walk in front of my chair, or, won’t move out of the way.  I have to get around them the best way I can.  As for being deaf, that’s another obstacle,  i have to face every day.  It’s unfortunate, but, since I’ve become physically disabled.  Some, like the nurse practitioner at the A&E obviously thought I was senile as well as deaf.  She implied that since I was ageing I should have help to administer my restricted meds.  Something I’ve done daily for many years,   She came to that conclusion, as I never spoke to her, due to the fact she wouldn’t lower her mask.   Therefore, she effectively disabled me.  I’m now old and incapable of being independent. 












Sunny Clouds

  • Charter Member
  • Super Hero Member
  • ******
  • Posts: 5607
Re: If you could change disability jargon...
« Reply #34 on: 03 Nov 2021 10:58PM »
Even if you were senile, you could still have quite a bit of brain function.  Dementia affects people in lots of different ways.  But hey, let's put someone with communication and mobility problems in a stereotypical box.

I hate stereotypes used by health professionals more than those used by the public, the latter generally more likely to have a genuine excuse for not understanding.

It's not quite the same, but an analogy.  If you're one of us mad'uns, you get assessed according to a list of criteria then a label is stuck on you.  Let's say they assess you for 'annoying patient disorder'.  Let's say there are 8 criteria and you have to meet five.  They assess you as having symptoms such as  'disagrees with doctor' and 'thinks they're entitled to their own opinion' etc. and tick five boxes.  Thereafter, health professionals who deal with you will be fully entitled to regard you as having all 8 symptoms.  Obviously very helpful.

You appear to have met the criteria for Grey Hair syndrome.

I shall make you jealous about an everyday transaction, though.  This evening, I popped out of the house for something, and on my way back a stranger asked something.  I was across the road and headed his way calling out "Hang on, hearing aids!"  I scooped them out of my pockets and waved them.

When I got to him, he asked me for directions to somewhere.  He asked clearly and politely.  I checked.  "[place name]?".  I gave him what I believe were clear directions, gesturing and using more than one wording, aware that people mentally conceptualise direction differently, confident that since he'd been patient with me, he'd understand I'd be patient with him. Yes, he clearly indicated he'd understood.

Those moments when you cross the barriers.

I'm hoping it won't be long before some stranger has an interaction with you that is the opposite of assuming can't hear = can't understand to perk you up a bit after that horrid A&E experience.
(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

  • Global Moderator
  • Super Hero Member
  • *****
  • Posts: 8239
« Last Edit: 08 Nov 2021 10:53AM by Sunshine Meadows »

Sunshine Meadows

  • Global Moderator
  • Super Hero Member
  • *****
  • Posts: 8239
Re: If you could change disability jargon...
« Reply #36 on: 04 Nov 2021 12:20PM »
For me the acknowledgements of need people gave me for many years after I moved to the Midlands made me a brighter more optimistic and open version of me. However things that happened in the past and that followed me into my life here still burn and wound me deeply to the point I can hardly, breath or move. My life force is haemorrhaging and I don't know what to do.


Sorry everyone it is an iceberg situation and no one here triggered this it is just how my life is.


I will be okay.

ally

  • Hero Member
  • *****
  • Posts: 557
Re: If you could change disability jargon...
« Reply #37 on: 04 Nov 2021 12:44PM »
Sorry for more bleating.  We’ve just returned from our booster vaxx.  We were ushered into a hall amongst many other people waiting for the same thing.  Our names were read out one by one by someone standing at the front of us.  Had I not been with my husband, I would’ve sat there for ever.  I was separated from my husband, and, sent to a booth alone.  The person administering the vaxx didn’t remove his mask.  I knew he was talking, as his eyebrows were moving,  I’m not adapt at reading eyebrows, as I am lip reading, so, was at a complete loss.  After a stand off, and, lots of staring, he eventually lowered his mask.  Unfortunately, he was one of the few people I can’t lip read.  I could tell her was getting frustrated, and, I was wishing I was miles away.  We got there eventually.   However, how much easier it would’ve been had my husband been able to stay with me?   I guess nothing in life is ever easy, and, certainly not for me.







Fiz

  • Charter Member
  • Hero Member
  • *****
  • Posts: 4610
Re: If you could change disability jargon...
« Reply #38 on: 04 Nov 2021 05:18PM »
Ally  :f_hug:


Sunshine  :f_hug:

Sunny Clouds

  • Charter Member
  • Super Hero Member
  • ******
  • Posts: 5607
Re: If you could change disability jargon...
« Reply #39 on: 04 Nov 2021 08:37PM »
I read Ally & Sunshine's posts then didn't know what to say.  Encapsulated so much reality and feeling. 

I've also just read a Guardian opinion piece about disability.  I think it overlaps strongly with what we're saying, and explores issues to do with equality, but is a bit pessimistic about the current situation.

https://www.theguardian.com/society/2021/nov/04/the-high-cost-of-living-in-a-disabling-world

May I echo Fiz's hugs?

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

ally

  • Hero Member
  • *****
  • Posts: 557
Re: If you could change disability jargon...
« Reply #40 on: 05 Nov 2021 08:52AM »
Sunshine  :f_hug:   Also  :f_hug:  for everyone else on here who needs it. 

On the edge

  • Marmite 5050
  • Diamond member
  • *
  • Posts: 223
Re: If you could change disability jargon...
« Reply #41 on: 05 Nov 2021 11:35AM »
I am having trouble reading atm so it took a while to read all the new posts but I got there in the end- thank you. There is so much I want to say in reply but I lack the spoons.


It does sound like us oldies could give the youngsters and newbies a lot of food for thought.


When it comes to lanyards reading what people wrote made me think some people don't accept the disabled label and don't want to feel pushed into advertising their differences. Others are just nasty people who see any request for help and consideration as people taking advantage, wanting more than their allotted entitlement in life. Then there are the mostly youngsters who more through life wearing their limitations and disabilities with pride and a sense of being in the right.


Crikey I just triggered myself into tears. Okay more than anything sick and disabled people need to be acknowledge as being entitled to help and consideration. Often the best way to show sick and disabled people that it is okay to come out of 'hiding' is to help them. For the DWP to be set up to assess need and not focus on the scroungers narrative. For the families we grow up in to not label us as spoiled, useless, bad, a black sheep, never going to amount to anything, or worse label them as a lazy underachiever. The biggest one of all is we need able bodied to stop competing with us for acknowledgement and a right to be needy. Sorry this one is hard to explain other than someone telling me it was okay that my Dad left everyone equal shares in his will, the validation being Dad could not predict who might be sick and disable so in need by the time he died. AND of course there was and is for all of us the hovering cloud of flies that says why should you get more than them.


I remember hearing once that DLA was not meant to be a compensation payment to sick and disable people, well feck that of course it is. I can't get suitable housing in any renting sector that would be secure and long term so my PIP pays our mortgage. Having to pay the mortgage means I cant use my PIP to enable me to pay for things like a helper or cleaner.


Ally I am sorry that happened to you and at the same time it is good that you posted it because we need to know to guard and proactively push against assumptions about us.


Grey hair syndrome scares me, currently I am home Mr Sunshine's daughter will be able to leave me somewhere with a mountain view and plenty of snow.


being of a certain Vintage (I knew Queen Victoria and Bert personally), when DLA first emerged, in fact it wasn't the deaf or HoH who pushed for it, but they befitted most apparently.  There was a huge row on the SEE HEAR program at the time, when they went to some university/college to get feedback from deaf people.  They responded with 'Lovely Jubbly, more pocket money and beers'.

None of them had any intention of using DLA for access or inclusion and viewed it 'compensation for being deaf to spend as they want.  They very nearly had it withdrawn from deaf by the DSS/DWP at the time.

I did not see the point of DLA at the time, it did not enable deaf to hire own support or anything and it was unclear HOW it enabled access to 'get around' (As the allowances are designed for.  Neither did it suggest how an allowance could be used to enhance access.  The help to get around thing was obviously for disabled less mobile, deaf made a point they missed trains and all sorts so gained DLA that way.

Again the allowance did not make an iota of an impression on improving those situations. The 'DIRECT PAYMENT' system was/is a minefield, deaf tried for that too and were turned down flat.  As I understood it, it was approved or denied NOT by the DWP but local authorities.  They told deaf you need extra disabilities to qualify E.G. to be blind or partially sighted as well.  In reality, hardly anyone got DP because the funding to LA's was far too low to be allocated to anyone really, and with LA's expected to make a contribution to, they just decided to make a claim near impossible instead.

Since the inception of PIP deaf or HoH claims for that have near zeroed few if any get it at all now for any degree of hearing loss, HoH suffered the worst with 68% having claims withdrawn entirely and being turned down for PIP as well.  By comparison BSL using deaf maintained near 80% still OK for PIP.

Clearly suggesting a deaf person who signed was severely disabled.  The DWP decides who is or isn't, not medical staff.

The interesting comment about having control over allowances and support payments is moot.  Why should we not have the financial power to decide who helps us, how, or when?  Well, professional support objects, they don't want to work for us, or for us to have the power of who hires them.

They claim the deaf e.g. would not hire pros but pay family instead, or not have support and pocket the cash anyway.  It was discussed they give the deaf 'vouchers' instead so for 8 hours a month they could buy in what support they wanted.  Professionals said NO, again.  Deaf were too unreliable and unaware of hiring and firing support to get that power and it was open to abuse, notwithstanding the vouchers created issues in huge delays of payment by the DWP, pro's said it was untenable to wait months to get paid for what they do, while the DWP scrutinized what they did etc.

They didn't feel deaf were capable, or reliable enough to run their own support.  Many elderly certainly didn't have that capability or wanted the responsibility. The deaf looking up the proposed new payments found it would not cover ONE hour's support a month, let alone 8.   Compensation is no answer to support or to enable it, maybe the young deaf were right, it was pocket money, as it was nowhere near enough or targeted enough to effect better access and did zero for inclusion.  For people to receive compensation, where were the issues to blame and at fault? It's a minefield.

Do other disabled feel, that complete control over the hiring of support should go to them?  it would show real demand, even if, it decimated professional help, because they are against it. We also know the DWP would never allocate enough funding for real choice.
« Last Edit: 05 Nov 2021 11:49AM by On the edge »

Sunny Clouds

  • Charter Member
  • Super Hero Member
  • ******
  • Posts: 5607
Re: If you could change disability jargon...
« Reply #42 on: 05 Nov 2021 12:40PM »
I think from your use of the jargon that maybe some things are/were done differently in Wales with a different timescale of which benefits, allowances, payments etc. were provided by whom and on what basis.

However, in relation to DLA, I do think it helps to bear in mind that it had two components and three rates of one, two rates of the other.  Thus not everyone would get both care and mobility components.

For helping people to get around, it might pay, for instance, for a taxi or for an extra bus/tram/train in a sequence of connections for simplicity.

That being said, I feel rather uncomfortable about what appears to be rather sweeping statements about what deaf people would need or would use it for.  It's a very individual thing, with different needs.  In particular, I think you're ignoring the psychological element.  You're not alone, though.  It's not so very long ago that the government decided to withdraw the mobility component of PIP from people who needed it for psychological reasons until the uproar and legal challenges caused them to make a U-turn. 

I say that because there is something in relation to social security that I feel very, very strongly about.  It's that there's a shame attached to the psychological element and it tends to get hidden not just in public but in open debates, campaigns, discussions etc. about what help people need. 

So to take the issue of what help is needed to get about, you could have two people who are deaf who have difficulty getting about, and for one, the main obstacle might be communication, and for the other, the main obstacle might be emotional.  But how easy is it for a deaf person to say when campaigning for support to get about that what their biggest obstacle is is the almost overwhelming distress of it?

As for me, as you can tell, I'm literate and multilingual.  I have hearing aids, but sadly they're the rubbish modern ones with all the microphones at the back, leading to background noise drowning out what the person in front of me is saying, not my lovely old baby pink analogue ones, carefully tuned into what my brain coped with balance-wise, not what a computer says it should cope with.  Of course, which aids suit depends on the individual. 

I find some aspects of getting about a nightmare.  I certainly can't make out what someone says to me in many environments.  Whether I can hear on my local railway station depends on time of day and which bit of the station, but don't expect me to make out what people are saying at most information desks. 

If I, as someone not profoundly deaf can have difficulties getting about in some contexts, why would it be very much easier for someone who's profoundly deaf?  Over the years, a significant chunk of the care element of my DLA went on extra travel costs.

I am lucky, for example, that I have a local taxi company with a recorded message system so I phone, wait for the automated thing to go quiet and press one for pick me up at home and two for pick me up where they dropped me off.  I don't have a problem, though, with giving someone my mobile phone and asking them to phone for me, and I didn't have a problem when younger and asking someone to use a phone box for me. 

But not everyone can cope with that aspect of it and likewise there are aspects of getting about that I cannot cope with psychologically. just as there are aspects of socialising or using facilities that I cannot cope with psychologically. 

I'm interested in what you say about direct payments.  Round here, it's based not on your disabilities in the sense of impairments, but upon your needs. That's assessed on an individual basis.  Here as where you are, central government funding for local authorities has been cut and cut and cut over the years, so it's very competitive.  It's not enough to have needs, you have to have more needs than others. 

(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

  • Marmite 5050
  • Diamond member
  • *
  • Posts: 223
Re: If you could change disability jargon...
« Reply #43 on: 06 Nov 2021 10:57AM »
The issue is basically that allowances for deafness (Or any disability), are tokenistic and hardly if ever, can cover the real costs of support.  My quotes on the 'fickle' attitudes of deaf were memory recalls from professional support areas at the time, and a televised Deaf program.  I expect they would be silenced now.


BSL support costs a lot of money, and regional costs have huge variations, in many areas, a minimum booking must be 2 hours, regardless if taking up only 15 minutes of interpreter time. That has to include travel time etc.  The costs here used to be a minimum of £40 per hour.  So any GP would look at a potential cost of £80 for one diagnostic attendance.  Little wonder they (And other areas legally bound to provide support), looking for cheaper options.


I covered issues here of SS trawling BSL learner classes and asking them would they do it for free!  Of course, the bane (And issue) a lot have is deaf NOT wanting to use professional help and insisting on a right to use family or a hearing friend, regardless of bias or if that 'support' has any qualifications in BSL.  I argue having hearing alone, is not a qualification.


Many people don't follow medical or other technical jargon, Covid is a recent example!  I lobby today to remove that right, because I feel it kills demand and puts deaf people at risk.  I don't get a lot of support for that because the right of choice is all, I think some are over-rated and an issue.  The only concession as I would see is such family/friend support could still attend a meet, but NOT be allowed to translate, that is to ensure the patient/client has access to neutral and more informed help and still has 'personal support'.


To that end, I lobby NHS insurance companies to point out them accepting unqualified help risked court action if errors crept in and the deaf patient suffered.  They shrugged me off with 'It's a personal choice, when they provide their own support they accept that risk.'  The BDA endorsed the right and the risk.  However, the deaf can still sue the NHS even if their support made a mess of helping them so playing both ends to the 'rights' middle.  GP's also lean on deaf patients to provide personal support to cut costs.


I wanted clarity and I want amateurs no matter how well-meaning out of it.  Current deaf campaigns exhibit a lot of arrogance, as do campaigners.  But signed support is a lottery and region-driven, you are 25 times more likely to get BSL support if you live in a city than if you don't.  Cities also determine how access and inclusion works for everyone else.  I pointed out earlier a cost of £40 an hour.  London can cost near £300 a time depending on the place and technicality required. Living costs are silly money in the smoke.  Most support is free-lance and charges can vary because of that too.


You need level 4 BSL and above in many areas to identify technical issues and then, extra qualifications to 'break down' the complexity to a more easily identifiable explanation to many deaf people, it's a skill to know and very important, many terps vary in that skill set!  Many SS care support provisions accept basic level 2 is enough.  It's called 'dumbing down' in some areas.  What to 'leave out' and what you cannot.  That is usually based on the on-site and immediate assessment of an Interpreter of their client.  I've argued at least a 15 minute one on one terp to the client so that assessment can take place, many terps may only meet the client for the first time, so have no idea what level to 'pitch' BSL at.


In reality, that assessment does not take place and initially, the terp is 'winging it'. A terp really needs to know what academic level to pitch BSL at, as well as assessing what the client can take in. Some deaf are excellent signers some really are not, and you get all shades between.  I considered a lot of BSL support a lottery initially and was amazed deaf got all the information they needed at all.  The is a BSL equivalent of the HoH 'nod' as well.  That nod as well know is unsure deaf or HoH signaling they can follow when they maybe aren't or have misunderstood.  One issue many deaf don't understand is that BSL INterptreer support itself cannot be taken to task if a mistake is made by the Interpreter, legally, everything is retrospective and 'hearsay', no court would back a deaf person against a glaring error by a terp.

Courts get no record of proceedings, none is taken usually at the time of support so there is nothing to refer back to apart from 'memory' hence hearsay.  Perhaps filming BSL support is the way forward.   I cannot see BSL terps agreeing to it.  Another set of reasons why I want amateurs out of it.  Allowances tend to reveal the scale of support these deaf need. If we take Access to Work payments, the Deaf are primary claimants to the maximum allowance.   Deaf art areas in London e.g. some actors and artists were claiming near £800 per WEEK.  BSL lessons/culture et al is a money-spinner too, I am doubtful personally the deaf benefit themselves from it.  I  see no point clouding communication issues with ramblings about Milan in 1880!   Stick to essentials.  There is a lot of hype but not a lot of substance to it, BSL success is based on the fact it has a qualification, and why the hard of hearing despite being THE majority, fail to get the same success.


However, nobody knows how qualified the DEAF are, hence the specialism of the Interpreter.  In reality, nobody knows how many BSL-reliant deaf there are, the data protection act prevents anyone from asking or assessing that.  just because someone is deaf, is no indication that person signs, or is a daily user of it and needs support.   The support set up despite being a national one should be re-assessed itself, and deaf people assessed as to what support works best for them, a 'preference' isn't a need.  But preference is driving all the campaigns currently.


If you are losing hearing, assessment of loss takes place to gear a hearing aid to your db loss.  It doesn't assess the effects of loss in other ways such as communication assists, traumas, isolation, etc.  That is left currently to you. Sign may seem very attractive and only option to deaf already, but may not really a viable option at all for those who acquire it later, and there are a lot more of them, 100s to 1 more than born deaf.  This suggests support is random and assessment and viability of 'preference' needs to take place.


I might prefer to use Afrikaan (Or Welsh), because I know a few words of it, but it won't be a viable option will it.  Wales has its own grammar and language too and its own version of sign language, but none of it is taught to deaf here.
« Last Edit: 06 Nov 2021 11:25AM by On the edge »

Sunshine Meadows

  • Global Moderator
  • Super Hero Member
  • *****
  • Posts: 8239
Re: If you could change disability jargon...
« Reply #44 on: 06 Nov 2021 02:49PM »
Thank you for the hugs  :big_hugs:  I am having a better day today. Unfortunately I can't fully read and take in information so not reply to the good stuff on this thread.


I shall return... :coffee: