Author Topic: For OtE (On the edge)  (Read 803 times)

Sunny Clouds

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For OtE (On the edge)
« on: 07 Aug 2021 12:37PM »
[Edited to add - I changed the thread title, which originally just referred to OtE because it wasn't clear who I meant.]

I want to say something personal and positive to OtE - you and I disagree very, very strongly on some points, yet I like debating with you because you teach me things and I get to see different perspectives.

E.g. BSL & Deaf culture - two sides to it.

With a multilingual background, I believe strongly that it is as valid to bring up a child to have as their first language Welsh, Gaelic (whichever sort), Cornish, BSL or Makaton.  If you become fluent in one language, you increase your chances of being able to become fluent in another language, and thinking in more than one language can later mitigate the damage done by head injuries and dementia.  And living in a community/neighbourhood that combines multiculturalism with a very strong sense of togetherness, I have no problem with the idea of a Deaf community/culture.  I don't think you feel the same about these matters.

But...


You made me aware that there are places where the Deaf/deaf services/resources are Deaf at the expense of deaf, and that some organisations ostensibly representing Deaf/deaf/HoH seem to divide people into Deaf and HoH and leave out the deaf.

So debating with you sums up for me one of the big positives about discussing things with people we think we disagree with, particularly where we both feel passionately about things.

That being said, I think there are some things we'll never agree on.  I suspect that if I said anything about charities, we'd still be debating it until one of us turned a 'deaf ear' to the other!
« Last Edit: 08 Aug 2021 11:30AM by Sunny Clouds »
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lankou

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Re: For OtE
« Reply #1 on: 08 Aug 2021 08:27AM »
What is OtE please?

Sunny Clouds

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Re: For OtE
« Reply #2 on: 08 Aug 2021 11:26AM »
What is OtE please?
On the edge.

Sorry, I should have made it clear in my OP.  I've got so used to calling him OtE.

I've now modified my first post to explain.
« Last Edit: 08 Aug 2021 11:28AM by Sunny Clouds »
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Sunny Clouds

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Re: For OtE (On the edge)
« Reply #3 on: 08 Aug 2021 04:59PM »
Incidentally, I don't mean I don't learn from others, it's just that OtE and I do rather go at it hammer and tongs sometimes when we get going on deaf issues we both feel strongly about.  We both want a better deal for deaf people and disabled people in general, I just feel I may come across to him as too argumentative.

I think in general here, I'm more concerned about how long-winded I am.  How you lovely Ouchers put up with that, I don't know.  It's a key reason why I take long breaks, feeling I'm outpouring.
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ditchdwellers

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Re: For OtE (On the edge)
« Reply #4 on: 09 Aug 2021 11:57AM »
There's no reason to take long breaks! I enjoy your ruminations. I wish I had the energy to express myself as well as you do  :f_hug:

On the edge

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Re: For OtE (On the edge)
« Reply #5 on: 09 Aug 2021 08:38PM »
[Edited to add - I changed the thread title, which originally just referred to OtE because it wasn't clear who I meant.]

I want to say something personal and positive to OtE - you and I disagree very, very strongly on some points, yet I like debating with you because you teach me things and I get to see different perspectives.

E.g. BSL & Deaf culture - two sides to it.

With a multilingual background, I believe strongly that it is as valid to bring up a child to have as their first language Welsh, Gaelic (whichever sort), Cornish, BSL or Makaton.  If you become fluent in one language, you increase your chances of being able to become fluent in another language, and thinking in more than one language can later mitigate the damage done by head injuries and dementia.  And living in a community/neighbourhood that combines multiculturalism with a very strong sense of togetherness, I have no problem with the idea of a Deaf community/culture.  I don't think you feel the same about these matters.

But...


You made me aware that there are places where the Deaf/deaf services/resources are Deaf at the expense of deaf, and that some organisations ostensibly representing Deaf/deaf/HoH seem to divide people into Deaf and HoH and leave out the deaf.

So debating with you sums up for me one of the big positives about discussing things with people we think we disagree with, particularly where we both feel passionately about things.

That being said, I think there are some things we'll never agree on.  I suspect that if I said anything about charities, we'd still be debating it until one of us turned a 'deaf ear' to the other!

Unless we challenge perceptions that we feel are wrong, they become a norm and create more problems for others.  You rightly stated there is no common ground really as regards to charity, I don't like them, I don't want them, that is because I feel inclusion and access is a right and a legal entitlement, so I wouldn't support any charity trying to beg for it, I Just find it frankly appalling charities raise cash for poor 'deaf' children etc.   20 odd years ago we had telethons to raise dosh for people, and quite rightly then, parents pulled their deaf children out of the show for demeaning their kids. 

Now they do it with flashing lights, sob stories and celebs nobody knows or cares about to show their latest dress or plug their failing careers.  We just seem to have gone backwards, not forwards.  However, the UK are suckers for charity (assuming you have fur or paws, that is), and if deaf or disabled are 'militant' that doesn't get them funds, they don't get support, charity means they have to be grateful, I've watched £6B in disability funding go down the drain with no benefits being seen, I see 876 'deaf and HoH' charities that gain £1,000s in funding and then fail to manage 7 weeks.  Nobody demands they prove they can provide a service or if are just duplicating what is there already, or have people who know how to run the provision they asked money for.  Most had no plan at all.

Of course challenging service provisions often means you may challenge charities and vested interests who make a living supplying this provision, it can't be helped if they adopt the position.  I really have no issues with these random deaf who feel there is nothing else to do but sign to each other and talk to each other  at the expense of everything else, if it works for them fine, but it is no way ahead, it is all designed (In my view), to consolidate a 'way of life' no longer supported, it is the 1930-1960 way, not the 21stc way. 

Obviously with government running scared of stating the obvious in case they get accused of opposing diversity or some other, and current populist bandwagon, it is easy pickings at present.  'Deaf Culture' was unknown 25 years ago,  'BSL' wasn't, people don't check their history.  But these deaf are quite adept, more than they let on, because culture is THE edge to getting what they want, I disagree it is what most deaf want, since nobody has asked us.  It may be impossible to even do it, nobody can get 10m disabled to unite on anything or 10m HoH.

We mostly come from a position of wanting everything hearing and able-bodied already have, the last I'd want is to go off on some tangent or parallel set up, where doing your own thing just becomes another fancy name for still being isolated. It doesn't stop being a prison because the cell window has curtains.  We want choice.  If we want in, we have to be there, compete, and compromise, so there again I feel charities are out, and support should be as legally stated anyway, a right and available by the state. NOT at the whim of tin rattling amateurs basically.  ELS for the deaf went bankrupt, put 60 deaf out of work and 100s of other deaf who relied on them, because they were financially incompetent, and spent it oin cultural awareness not basic need, their sole answer was to ask for more money.

They are no use to anyone.  It sounds harsh, it sounds derogatory of people 'trying to help' but realists know the way ahead and how it is done currently, is not the way.  I was there with 'Rights Now! at the start, and arrested for demanding access to public transport for wheelchair users,  the ONLY deaf person at the launch of the original DDA 1995. These are not the rights I fought for.

I'm sure I'd buy you a few wines :) but the end game is the point.  People don't listen if you pamper them.  If you are out for popularity then rights campaigning isn't the job for you...


.

Sunny Clouds

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Re: For OtE (On the edge)
« Reply #6 on: 09 Aug 2021 09:53PM »
I think our disagreement over charities isn't so much about what certain organisations do, it's about technicalities.

Where I think I see agreement between us in relation to charities and similar is...

1.  Our government and many of those in power and influence expect us to be satisfied with the help of charities as a substitute for a proper amount of help/entitlements as part of the welfare state and as part of the way society operates.  This is not acceptable. 

2.  Too many of the big name charities relating to disability, difficulty, illness etc. are not DPOs, and are not necessarily fighting for our interests.  My favourite example is not a deaf one, but I believe the principle is the same.  It relates to what is now Rethink and was originally the National Schizophrenia Fellowship.  It set out to be the public voice of schizophrenia, as it were.  But it wasn't a DPO, it was an organisation, as I understand it, set up and run by relatives of people with schizophrenia, particularly parents.  Unsurprisingly, they were hostile to concepts like schizophrenogenic parents and the contribution of life experiences, including early life, to the development of schizophrenia, and very happily worked closely with drug companies to promote a notion that schizophrenia is inbuilt and you need to be drugged up to the eyeballs.  I believe they've done enormous harm over the decades.  That's just one example albeit not a deaf one.

3. Thus charities shouldn't be there to provide essentials in life, except for temporary stop-gaps.

However...

Where we would disagree, I think, is that as I see it...

1.  Charity is basically a legal tax status.  You can do good things without being a charity and you can be a charity and do things others don't consider good. 

2.  The majority of charities are not what I'll call high street names.  An example of what I'll call an everyday charity would be where a group of people in an area get a grant or a donation via a will, or raise funding from their comunity, then take over a bit of land and/or a building, and turn it into what I'll call a community resource.  It might have all sorts of things, maybe craft rooms, places for people to have get togethers and meetings, a playground, a small animal place or whatever.  Then they apply for charitable status because they're entitled to do things like that without paying certain sorts of tax.  But they're not claiming to represent anyone and they're not claiming to provide a service to replace a public service.

3. Many DPOs aren't charities and probably should be.  Maybe they don't realise they could be or maybe they don't have enough resources for it to be meaningful or relevant.  We need some sort of status that isn't so much about tax as about function, in addition to charitable status.

I wonder whether we could meet in the middle on something?  That there needs to be more public information and campaigning to get people to understand that just because an organisation is constituted legally as a charity and gets charitable status doesn't give it a bigger right to speak up for the people whose interests it's set up to help than other organisations, which may or may not be charitable; and that DPOs need to be the organisations listened to most in relation to disabled people's needs, not organisations, charitable or otherwise, that aren't DPOs.
(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: For OtE (On the edge)
« Reply #7 on: 09 Aug 2021 09:55PM »
Quote
I was there with 'Rights Now! at the start, and arrested for demanding access to public transport for wheelchair users,  the ONLY deaf person at the launch of the original DDA 1995. These are not the rights I fought for.
:thumbsup: :f_hug:
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Sunny Clouds

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Re: For OtE (On the edge)
« Reply #8 on: 09 Aug 2021 10:07PM »
BTW as regards deaf community, before we had the notion of a deaf community, we had 'deaf and dumb' meeting places, clubhouses, didn't we?  There was one in walking distance of my grandad's place before the war, although it later moved.  I wonder what the atmosphere and shared identity was like.
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On the edge

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Re: For OtE (On the edge)
« Reply #9 on: 10 Aug 2021 07:35PM »
The olde deaf and dumb communities (Just had that flagged up as offensive lol), were the only social hub of deaf institutionalism (The deaf schools).  The deaf lacked the wherewithal to engage on many basic communication levels with anyone but each other.  Around the 1960s many decided there has to be a better way to include people than leaving them without the means to move forward hoping they can find own way.

By 1970s and 1980s there was a revolution of sorts, a BSL dictionary came out (A rank amateur and botched attempt but it made their point),  and young deaf decided there had to be more to life than a deaf club and then a deaf community, or even just sign language, they eyed hearing peers with envy, and wanted the same as they had.  To that end they turned anger on their support (There was a dedicated Deaf social service provision at the time),  they served deaf from birth to death, helped them into the world, managed their family issues, and helped them get jobs.

They decided to go at that service provision as they said this was perpetuating an image that was damaging, patronising, and negative to them, after a massive survey they found that only 35% of deaf social service staff had any qualification in sign language.  Yet these social workers ran deaf lives for years, reading the deaf mail replying to it, handling their bank accounts etc, deaf who struggled simply got sectioned, the level of 'control' was unacceptable. People need to understand there were no real classes teaching 'BSL' because it wasn't recognized as a language, just a step-up from mime in many cases.  The LEA started running a few, via 'hobby' class definitions, but there was no organization or norm as such, whoever taught it, did their own thing no structure or anything.

Lip-reading classes also were non extant, when they started they refused to have anything to do with signing or gestures because of it.  Those who look at very old films of the deaf 'mute' from 1920s on would see no 'BSL' as such but dominant 'finger spelling', the speed was amazingly fast, and up until recently still the main sign format in Cornwall e.g.  They used English grammar were taught to read and write it that way, some old timers I met, had a better writing hand than I did, copperplate.  It's actually gone downhill since as they argue on the merits or not of english its grammar, speech yes or no?  You needed a lot of patience to even listen to half of it.  I ran out 10 years ago.

They were taught to get as near to the host language as they could, that has been reversed lately, I'm not a fan of that, and I believe young deaf will ditch it.  Charities that supply support instead of the system are ones I don't want at all.  Of course the state supports charities, they are doing their job for them and at far less than actual cost.  It is why the Charity commission won't challenge charitable status in that respect, the state has 51% say.  The problem then, is that deaf relying on charitable help are at the whim of fund givers, already we see the NDCS asking for more money to supply  support the state is supposed to be supplying.  The RNID/BDA 'rationalising' every other month as funds dwindle, the RNID was in the doo doo last year when Covid virtually killed their income, it is why they sold off deaf care they ran, and stopped 70% participation on social media, as well as closing down many regional offices, they had to move out of London too.

A recent revamp the 3rd in as many years is farcical.  The BDA relying totally on bequests from people's death estates.  If people really want to help the disabled or the deaf then go to parliament and get it legislated into action, we don't want your money, but your vote, and, it's free.  It will stop opportunists making a mess too.  Nobody is really regulating deaf support or charity.
« Last Edit: 10 Aug 2021 07:38PM by On the edge »

Sunny Clouds

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Re: For OtE (On the edge)
« Reply #10 on: 10 Aug 2021 09:13PM »
I knew a fair chunk of that, but far from all of it, so thank you for filling in historical/timeline gaps.

I'm worried, though - are we agreeing on more things?

Do you read John Pring's Disability News Service?  I'm hooked on it.  He's been covering DPO outrage at being excluded from most of the government's plans relating to provision for disabled people. 

We can argue whether charities should exist, what structures there should or shouldn't be for organisations, but we can agree that it's disabled people and DPOs that should be listened to, not organisations that have taken on a life of their own and are not controlled by disabled people.

I have been involved in charitable fundraising, but have also been very much involved in campaigning for better public services.  E.g. it's not enough to raise charitable funding for a community playground, it also matters to campaign to get the local authority to provide public play areas, especially where they've sold off school playgrounds to follow government requirements.

It's often a compromise and one I don't like making.  Analogy - foodbanks.  We shouldn't need them.  I ooze outrage that such a rich country has so many hungry people, particularly children, and particularly where our government gets people onside with leaving third and subsequent children hungry by portraying it as penalising the parent not the child.

But then do I walk past my foodbank and say "No, I won't donate because it props up a system that lets the government get away with starving those it deems undeserving" or do I drop off a donation and say "It's disgusting it's needed, but whilst the current government is in power, I can't let my principles stop me donating."  No easy answer.

You've doubtless read one of my rants about how I believe that when neoliberal politicians have finished dismantling the welfare state, we won't be back to the eve of the welfare state, we'll be back to the dissolution of the monasteries, and totally dependent on the donations/help of others, even more than we are already.

Then what of the Deaf/deaf stuff?  Who'll give a toss?  And a government that thinks the way to level up is to teach kids Latin isn't going to want to do anything to ensure that deaf children are, subject to intellectual ability, brought up bilingual English and BSL, even if much stronger in the one than the other.

(Declaration of interest - I have a degree in Classics so am not hostile to Latin, I just think there are lots more valuable languages to teach children.  You may recall my views on how every child should learn either Makaton or basic BSL, if for no other reason than health and safety in noisy workplaces as adults.  I also think every child should be taught to lipread.  Then a foreign language, not selected on the basis of what's traditional, but selected on the basis of which countries we trade with.)
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On the edge

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Re: For OtE (On the edge)
« Reply #11 on: 11 Aug 2021 11:42AM »
I knew a fair chunk of that, but far from all of it, so thank you for filling in historical/timeline gaps.

I'm worried, though - are we agreeing on more things?

Do you read John Pring's Disability News Service?  I'm hooked on it.  He's been covering DPO outrage at being excluded from most of the government's plans relating to provision for disabled people. 

We can argue whether charities should exist, what structures there should or shouldn't be for organisations, but we can agree that it's disabled people and DPOs that should be listened to, not organisations that have taken on a life of their own and are not controlled by disabled people.

I have been involved in charitable fundraising, but have also been very much involved in campaigning for better public services.  E.g. it's not enough to raise charitable funding for a community playground, it also matters to campaign to get the local authority to provide public play areas, especially where they've sold off school playgrounds to follow government requirements.

It's often a compromise and one I don't like making.  Analogy - foodbanks.  We shouldn't need them.  I ooze outrage that such a rich country has so many hungry people, particularly children, and particularly where our government gets people onside with leaving third and subsequent children hungry by portraying it as penalising the parent not the child.

But then do I walk past my foodbank and say "No, I won't donate because it props up a system that lets the government get away with starving those it deems undeserving" or do I drop off a donation and say "It's disgusting it's needed, but whilst the current government is in power, I can't let my principles stop me donating."  No easy answer.

You've doubtless read one of my rants about how I believe that when neoliberal politicians have finished dismantling the welfare state, we won't be back to the eve of the welfare state, we'll be back to the dissolution of the monasteries, and totally dependent on the donations/help of others, even more than we are already.

Then what of the Deaf/deaf stuff?  Who'll give a toss?  And a government that thinks the way to level up is to teach kids Latin isn't going to want to do anything to ensure that deaf children are, subject to intellectual ability, brought up bilingual English and BSL, even if much stronger in the one than the other.

(Declaration of interest - I have a degree in Classics so am not hostile to Latin, I just think there are lots more valuable languages to teach children.  You may recall my views on how every child should learn either Makaton or basic BSL, if for no other reason than health and safety in noisy workplaces as adults.  I also think every child should be taught to lipread.  Then a foreign language, not selected on the basis of what's traditional, but selected on the basis of which countries we trade with.)
I think you have to make that stand, just because we have a government committed to leaving people unsupported, doesn't mean we prop it all up by throwing a few quid at charities to compensate, and of course it doesn't anyway, we perpetuate it all.  The degree of empowerment and support required needs a national effort.  We campaign every day for new rules and laws to get what is needed, then campaign again for more because no one is enacting any of them.  I am aware of at least 4 major access, human rights laws, and also aware none of them work for the disabled.  The UK goverment pulled a fast one by limiting 'rights' to  individuals who set a legal percedent.

If they won they got some of  their rights, but that didn't mean the rest of the disabled in same circumstances then got theirs, every single one of them has to lobby for themselves, this was the government policy of 'divide and rule'.  A lot of disabled aren't able to fight that fight on their own.

Of course disabled, Deaf (Whatever!), don't run own provision, e.g. the RNID the UK's largest Hearing loss charity has just 9% of staff whohave hearing loss, none are in any position to influence the direction of RNID support, indeed at one point, they were paying Visa costs for European staff to work with them causing huge rows, as they were all hearing.   the Deaf are political more than they are lobbying for need.  Most of the  funding they get goes on 'cultural' hoo ha at the expense of addressing why these deaf are marginalised and isolated.  The point about learning Makaton/sign is where on earth are hearing going to use it? We know from massive surveys regarding discrimination, it starts age 7, before that, children tend to accept anyone without fear or favour.  When they get into primary and the secondary education, peer pressure kicks in, and it isn't 'cool' then.

At 16+ it becomes 'cool' again to accept everyone and anyone, because teens need to rebel and look individual, they support all sorts of causes lost or otherwise.  It's a right of passage really.  The facts tend to suggest BSL still hasn't a norm or structure, we know it has no academic signs, or teachers to teach the deaf those, that came from the deaf teaching association who complained they cannot teach what doesn't actually exist.  Completely oblivious, the BDA and others demand a BSL based educational system which they hope to enact if or when the BSL Bills become a UK norm.  Currently, it is 50-50, with Wales and England (the majority), still resisting a BSL Bill, while Scotland and N Ireland have enacted it.

So far deaf haven't benefitted with any BSL Bill except that 'some' deaf and sign have attained higher profile, but profile isn't what deaf need, it is support and an approach that really will enable them.  The frustration, is that young deaf people know what they need to move forward and it isn't a BSL Bill and certainly not an enhanced isolation, they want what everyone else has.  Many hearing lip-read subconsciously anyway, but how will lip-reading help them follow deaf? It won't as speech is an issue as is a signing preference.  As regards to noisy area, a law exists to address that already, although I do recall the RNID selling a telephone that went way beyond health and safety db output.

As you say the D/d frustrates and annoys more than is accepted as a reality.  It's all a part of the cultural gig. You have to ID who is, and who isn't.  Here is where the current battles rage.  Cultural deaf have sold the idea to systems, but haven't sold it to deaf people themselves.  You can identify less than a 50 UK activists selling the whole thing, but they are very adept, and ironically schooled far better than most other deaf are, indeed a high percentage came from the Mary Hare grammar deaf school, which actually isn't sign based but almost completely oral, and a superior education.  I debate with these people day in and day out, they are in it for the kudos and jobs it provides, I don't believe they want deaf emancipation but to keep deaf in their communal isolation. In case choice means they won't be listened to.

Meanwhile, they reap the benefits of an oral education to promote sign, you could not script that.

Sunny Clouds

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Re: For OtE (On the edge)
« Reply #12 on: 11 Aug 2021 12:12PM »
I'll pick up on the rest of your post in a bit.  There's some really good stuff in it. But first I want to pick up on this.


Quote
The point about learning Makaton/sign is where on earth are hearing going to use it?


As I said - health and safety in noisy workplaces.  For instance, a whole range of very basic sign languages developed naturally in the past in places like mills, and there are lots of workplaces today where people use lots of gesturing and develop local signs.  Watch workmen with noisy machinery taking their ear defenders off and shouting.

I have helped people who aren't deaf but who can't hear what's being said because of background noise communicate by giving them pieces of card I carry round with me and lending them a biro, when they want to communicate essential stuff like "How do I get to...?" etc.

Meanwhile, look at the deafness/hearing loss curve.  Leave aside the issue of profoundly/severely deaf people and include all those for whom it's enough to be a communication obstacle.  It's about one in six or seven.  It's one in three in the over eighties.  Is that a good time to get your brain acclimatised to communicating with your hands?  No, at that age you probably wouldn't remember the signs you'd used at school, but the concept of communicating that way would be deeply embedded, and if sign were used more widely, it would feel less stigmatising.  And boy do we stigmatise hearing loss in elders.  Must make the hearing aids hair-coloured and tiny, the emphasis being on hiding them not on making them easy to use.

Though if basic sign were more widely used in society, people would probably remember some of it when they got old, even when demented.

As I say, I'm multilingual.  I believe, for instance, that if you take two children of average ability aged about seven, and one is brought up bilingual and the other isn't, the one that is bilingual is likely to be more adept in the language the monolingual child speaks.   So I very strongly believe that if we encouraged communication in sign as an everyday second language, it wouldn't detract from using English as a primary language by all that can and wouldn't reduce people's fluency in English, it would simply add to communication options and improve health and safety.

As I say, I want to respond to more of your really interesting post a bit later.
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Sunny Clouds

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Re: For OtE (On the edge)
« Reply #13 on: 11 Aug 2021 01:16PM »
Quote
I think you have to make that stand, just because we have a government committed to leaving people unsupported, doesn't mean we prop it all up by throwing a few quid at charities to compensate, and of course it doesn't anyway, we perpetuate it all.
The difficulty I have with this isn't with whether we campaign or not, it's just a sense that when I see something like a foodbank, I know I have to weigh up short term and long-term.  Long-term, I hope that campaigning will change things; short-term, I feel I must help that way even if I shouldn't need to.


Then again, I'm ambivalent about many charity shops.  I buy most of my clothes in charity shops because I hate shopping in big shops, but some charities are very predatory.  For instance, Oxfam has a reputation for setting up bookshops close to private secondhand bookshops and putting them out of business.  I could name two close to me and read heartbreaking discussions about it on a bookseller's site.

Some of the charity shop chains have also been too involved for my liking with punitive government workfare schemes.

But if your local non-charity secondhand shops go out of business, then what?  Do you buy what you need where you can, do you do what I do and get picky about which charity shops you'll shop in, or do you maybe make an extra trip or do without the item you want at a price you're ok with, bearing in mind that every day of the week, most people buy stuff made in or with materials from overseas workplaces with appalling conditions.  Aargh!

But ok, so whatever we do in the meantime, we take a stand to improve the future.  I'm not sure, though, what taking a stand has to mean.  I don't mean that you're being woolly, I'm exploring the idea.

I do the stuff like going on marches and demos, and I've done my share of lobbying politicians and sitting on committees.  (And you may think that committees do nothing, but sometimes they can give you some influence in relation to politicians.)

It's difficult, because my life was torn apart by the responses of corrupt people in public institutions in various contexts.  I don't know how people have the guts to litigate.   For instance, the sheer viciousness of my local mental health team after I gave evidence about a particular incident I witnessed to a parliamentary enquiry into NHS cover-ups was frightening. 

Not the cover-up issue, but something I campaigned on for years, was the mental health trust's concept that you're Deaf and need care from a specialist team or your hearing is just fine.  Why would someone not on a Deaf ward need an amplified phone or hearing aid batteries or even a way to get in the building without being able to hear someone speaking through an intercom? 

Well, that's not Deaf/deaf services in the abstract, as it were, but it's Deaf & deaf services within other public service provision.  I ended up utterly demoralised over it.  

I wish I'd understood then that formal consultations tend to be a waste of time unless you go very public on stuff, preferably in a way that will make for good 'tabloid' headlines.  A careful balance, though.  Not simply embarassing the people with power, but getting the message across they'll be severely embarassed but giving them a get-out if they do what you want, even if it's not all that you want.

And I wish I hadn't lost my confidence and my courage when it comes to leading and organising things.
(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: For OtE (On the edge)
« Reply #14 on: 11 Aug 2021 08:50PM »
:f_peacedove: As I am aware there are no charity shops that are dedicated to deaf people, unless YOU know different lol.  Yes we need considerable energy and determination to plug away at systems to get things done, even to create awareness, and you are pitched against charities who have their version of what we need etc. Charities that kow tow to business or Royalty or the odd TV celeb etc, but I feel they get nervous and obstructive of disabled who don't portray themselves as needy but just want rights, because they can't sell that to fund givers. Any image of independence then people won't give money to your allocated charity, they need pathos, dire need, independent or demanding disabled aren't that.

We still go without, but we aren't hang dog about it.   Do I get tired?  only every single day lol but inequality exists so you have to do what you can, of course you get 'professional' disabled and deaf, you know the ones who make a life out of attending pointless meetings, or act as trustees token wise for charities, in the hope of a gong from queenie or an MBE or something, one woman I know was on committees of no less than 14 charities at the same time, that is all she did attend meetings.  People like us are more the necessary evil, we kick down doors, we annoy people, but like Moses in the wilderness are doomed to wander outside and get little thanks for it after, the meek or rather the opportunists then inherit the earth and become almost part of the system in so doing, but essentially little changes and that annoys.

Today it's the net. Social media, technologies, you would think change must happen, but it consolidates or empowers difference, which is in the long run anti-inclusion.  Without going on too much about current events, the BLM and ethnic issues today are a prime example off how not to do things. I know the deaf community doesn't understand what inclusion means except more support to 'drop in' to mainstream more easily, but they still don't want in to it, they fear a demise of culture and language as they know it, if they do, they haven't yet the faith in what they ask for, that it can stand on its own merits and compete.  They are also unforgiving of those who suggest, hey! Maybe there is more to life than a deaf community, 60m others have one. At some point the penny may drop who knows, or, maybe time will sort it.

Wales e.g. closed all its deaf schools and less than 20 now exist elsewhere, 5 under threat of closure recently, so change is happening whether they want it or not.