Awareness isn't working....

ATR has long advocated that since disabled and deaf people were given major inclusion and access laws, we have less now than before they were enacted. It is as if once laws were on the statute, we stopped making sure they worked properly. 

At core, was the disability organisations over-focus on the individual, as averse to the collective approach. Once we pushed the individual right, we abandoned the collective rights of others. Removal of legal aid ensured only a very few disabled could take areas to court and force them to obey the laws we all fought for. 

The Deaf area ignored this, and campaigned solely for themselves, with recent successes via a BSL Act, which wasn't needed in Wales, because the local government there had accepted the inclusion law day one, they also blurred the definitions between the individual and the collective, by using a master-stroke that was so simple, the systems never saw it coming, they just capitalised a single letter (d, to D), then, all, became one.  A minority became the majority by default, a sensory loss became a way of life and a right, and a cure or alleviation, cultural genocide. Unfortunately it also created divisions, by Db, language, and way of social life, defeating own inclusion policies.  

It labelled most with deafness and hearing loss, with a culture they never had, and a communication format they never used, which caused many to actually LOSE support, because systems had bought into the hype of the minority, and re-applied it wrongly, all emphasis was on support they didn't use or want.

Support and funding went to the minority instead.  The rest of the UK government/business has clearly not accepted or endorsed, access and inclusion laws. Even when going to court, no precedent is being set so other disabled unable to speak for themselves,  could benefit, the individual being paramount, meant all have to go to court one at a time to get needs met. The disabled/deaf communities just lobby for another Act or law.  Grassroots find legal action is impossible. HM Government had removed free legal aid.

The biggest issue we face today is a total lack of real awareness, and the state dismantling the welfare state, and attacking the most vulnerable.  Despite various charities and others going it alone, they all appear to have failed, and by own admissions, as campaigns complain society (Whoever they are), are not aware of what they need to do, but still taken £M's in funding with them, with nil, to show for it, least of all awareness. 

Others quickly realised there was a profit to be made from us, non-disabled people set up courses online, many with zero awareness or qualifications themselves, via training, and 'lessons' in awareness, etc, and they now run most of not it all. Just sub-standard and biased/poor awareness tips. Disabled/deaf became a commodity to be exploited, and others got the work and got paid for it and still do.  Charity became corporate, a business, and the bottom and their relentless line was to keep us all reliant, if not on the state, on charity itself.  The state helped them along, by offering less and less support themselves, so many had to rely on charity.

Funding has not produced awareness or any advances.  Given so many random areas joined the awareness bandwagons, setting up 'hubs' as a catch-all, centre for awareness, they endorsed 'political' campaigns and approaches to awareness, campaigning as if access and inclusion laws didn't exist at all, when the reality, was they just didn't work. This was obvious in the 1990s when Disability Act demands were well advanced.  However, Charities reneged on grassroots fearing lack of own support, and persuaded the government to adopt the Act, but agree to water down any effect it might have.

The real aim of charity, was kudos and funding for set ups run by a few, on a computer somewhere.£1000s vanished overnight as no checks were made on them. The systems then proceeded to endorse nothing with us, or to include us, and disabled memberships of leading campaigns became selective and isolated in approach. Deaf do this, Blind do that, mental health do another etc. Nobody seems to understand we cannot succeed this way, united we stand, divided we fall etc... Our biggest enemy y is our own refusal to support each other. cest la vie has made us all reluctant to say 'Look, this isn't working, you going that way, and us going the other, we need to go together.'

CODA's picking up the support tab?

The whole truth, and nothing but?   The degree of ignorance around BSL usage and support just enables more campaigns, but doesn't explain anything in any real depth. Anecdotal evidence say shortages are NOT the main issue, but, deaf parents preferring their family support them, its 'on tap' and immediate. (One statistic suggests 68% of deaf have rarely if ever uses BSL interpreter support.)  Other issues are that only 1% of deaf sign users are proficient in BSL themselves, not having taken any exams to attain BSL level competences, neither have their children.

ATR draws attention to a 12yr old campaign it ran via the BDA, insisting that NHS GP's and medical staff stop immediately, asking deaf people to bring their children with them to translate, and to respect the law that demands they provide BSL help and professional/neutral support.  The BDA refused to support that request, insisting deaf people had a right to use whatever support they wanted, despite this killing demand, and, putting Deaf patients at risk via family support that lacked training, and were in essence speaking FOR their parents.

As ATR pointed out this meant children as young as 8-10yrs of age were expected to translate for the NHS and explain diagnosis to them, even regarding bad news like cancer, or sensitive areas like sexual education.  ATR complained to Social Services, who explained it was ILLEGAL for deaf parents or families to use ANY child under 16 tears of age, it was deemed abuse.  ATR said even IF they are of that age, the NHS had no way of knowing if the translations provided by family, were accurate or not or subject to bias by CODA's, e.g. how to tell your Dad 'They say you have terminal Cancer', or, 'You have a sexually transmitted disease'  Cases emerged some parents simply weren't told by CODA's because 'They won't understand..'

ATR stepped up a campaign at the NHS directly suggesting, that in the event of a diagnosis not understood by a patients and subsequently got very ill or worse, the NHS said 'Deaf chose family support, the onus is not then on the NHS to be legally  responsible, the NHS has respected deaf choice..' We tried approaching NHS insurance companies, who were unhelpful, because deaf choice passed responsibility to others, and saved the NHS costs hiring a professional Interpreter. Nothing short of a total ban on any amateur BSl support will create any demand.  It has to be said 80% of BSL interpreters do NOT have a medical expertise either, there is a total lack of specialisation in BSL work, with 999 and legal systems etc, it is basically, he said, she said, they said, and hoping at least someone follows everything.  

It is not enough to use medical jargon at people and assume the terp understands it all, or the patient does.  Even social services itself using trained BSL terps to assist, can opt out of issues emerging when misunderstandings reveal themselves, and SS/BSL terps CANNOT be taken to court to testify on who said what, BSL interpreters say NOBODY can guarantee a deaf person follows everything, so a court lists it as 'hearsay' thus inadmissible.  Deaf have NO real cover in reality, unless video recordings are taken in addition to BSL interpretation, but again, systems have another opt out on data protection grounds and privacy.

A shortage of BSL terps is nobody's fault at present, until systems enact the law and only allow professional support provision, that forces demand.   Compromise would be family/friends there to act as 'personal support' but not in any translation role, this offers the best solution, and enables the deaf more likely to be making own decisions, and not allowing others to do it for them.  You cannot be sure in certain sensitive subjects family will not provide bias into the proceedings. Expecting a child to make those decisions is outrageous, deaf need to stop doing it.

NEWS ITEM:

Children are having to translate doctors’ diagnoses to their deaf parents because there’s not enough sign language interpreters, a City Hall Conservative has claimed. Andrew Boff, a Tory member of the London Assembly, branded the situation ‘ridiculous’ and said there was an urgent need for better sign language services.

Mr Boff made the comments at a London mayoral hustings in Westminster hosted by deaf and disabled people’s charity, Inclusion London, on Tuesday (April 9). He was responding to a question from an audience member about what Conservative mayoral candidate Susan Hall would do to support the British Sign Language (BSL) charter - a list of pledges that aim to improve the rights of deaf people.

Mr Boff said: “There are not enough interpreters. We [have] had situations where young people are being asked, children are being asked, to interpret for their parents when receiving information about diagnoses from doctors. I mean this is a ridiculous situation to be in. We need more interpreters.”

A 2015 City Hall report authored by Mr Boff noted there were less than 1,000 registered BSL interpreters in the UK. The report blamed the shortage of interpreters on the cost and length of training. It said that interpreters often had to study for seven or eight years before becoming fully qualified. A reduction in council grants meant students were increasingly having to seek sponsorship from employers, the report added.

Rachel Blake, Labour’s parliamentary candidate for Cities of London and Westminster and a Tower Hamlets councillor, said Mayor of London Sadiq Khan had already signed the BSL charter and was consulting with deaf people. Zoë Garbett, Green Party candidate for mayor of London, said she fully supported the BSL charter and said City Hall politicians needed to be held accountable to make sure they were meeting the pledges within it.

Who needs to Campaign, we don't!

The NADP National Association of Deafened People replied to our questions:

ATR:  'Why is there little campaigning being done at all by acquired deaf and others with hearing loss?  BSL campaigns are running at 31 this month already, even about world hearing (?!), whilst hearing loss campaigns are in single  figures over the last 12 months, despite the overwhelming majority of sufferers by over 1,000s to 1?'

NADP:  Hello. There is no specific research, but quite a lot 'discussions' related to low level of acquired deafness and hearing loss  campaigning. Many feel, the low level comes from huge diversity of how we communicate.  Born deaf people have 1 single goal - BSL.

ATR:   And the hearing loss sector has none? Maybe the fact there are paid jobs, courses, and funding involved with BSL that makes this rarely used format BY deaf people so attractive to others?  There is not even a valid qualification to lip-read via classes, so that format has something to aspire to.   Is it true, the RNID felt it was becoming impossible to promote hearing loss because the hearing loss campaign terminology was too positive?  That funders are more willing to offer funds if 'support, and Help' was involved, but not for real empowerment, and more medical intervention to address hearing loss and deafness?  The hearing loss area has  adapted technology instead? That is is diversity? Born deaf can't adapt to technology?  It doesn't answer the query as to where £6B a year is allegedly going our way, nobody but charity ever sees. 

I'd rather hoped the NADP would challenge the shambles and bias, that is UK deaf awareness, which is not about us at all, and with the RNID and BDA being the leaders of disinformation, sadly. E.G. 11m DEAF and hard of hearing, is a total lie is it not, even the Pinocchio's at the BDA do not claim those figures. No distinctions are being made between this 'political wing' of deafness, (the 'Deaf'), and the majority, i.e. US, despite distinct cultural, rights campaigning, and language differences.  Hard of hearing and acquired deaf complain the sole support they are being offered is sign language, a format they don't use, and don't need or want, and this is down to misleading support claims by UK leading charities, influencing health and 999 systems via bias.

The fact such charities are their OWN source of statistics, isn't queried, either by the state, or by rank and file, why?  Can the NADP demand that awareness correctly  identifies people accurately?  As this otherwise suggests we are  getting more support than we actually are, and, the wrong sort, as it is for a different sector entirely.   There is NO established NHS hearing loss area in Wales except for a f ew 100 BSL users, and none for 3/400K (RNID own estimates), of those with hearing loss, not even a deaf school exists there..  On the face of it, we are all labelled BSL users.  The ASLI  also clarified that there is no support for lip-readers in Wales, we can't ALL be using apps.

NADP: Thank you for contacting us....................

Health massage for signers.

SS 'Hearing Loss'

 "10,000 Welsh patients waiting for hearing aids"

It's essential hearing aids are issued quickly.  Going deaf costs the UK in excess of £6 Billon a year and that is just deaf support, that doesn't take into account 10m have hearing loss, or, helping 3 million with severe loss, who are refusing to wear one, because they experience ridicule from peers.  

Most of those with hearing loss suffer traumas, and many difficulties getting a job, or holding one down,  managing a social life, even accessing the 999 services, is a lottery for all except a few deaf who use sign language, estimated at 6-700, which pale into insignificance given Wales has near 3/400,000 with  hearing loss issues, who are the majority area of hearing loss NOT being supported in Wales at all, as hearing loss, is a 'loss loser' to charities who raise funds to support them, indeed many in Wales have pulled out of doing it concentrating on sign users instead.  

It is overkill, given Wales hasn't a deaf school, and very few who need specialist schooling either. It is a total and false economy to ignore hearing loss, be it in Adults, or children, as if it cannot be managed or addressed then the NHS/999 and the Senedd will have to foot the bills for their care and support as the hearing gets worse. Which they aren't even doing for the minority who have been deemed eligible for an Hearing aid.  There is an increasing pandemic of hearing loss, being hidden or obscured by technology, to make up for no hearing aid, which increase their isolation, and inability to hold down any conversation for more than a few minutes.  Those who struggle to hear properly are 10% of the Welsh population and the numbers are rising, we live in a world of noise.

The Welsh government throws much support being sign-using deaf, who now have the best deaf support in the UK, but it has been at the expense of 300,000 others, in Wales, and millions of others UK-wide, displaying, that appalling indifference, bias, and profile hunting is behind that area of Senedd support, as they ignore the majority in actual need.  Easier to address one small area of hearing loss, and hoping nobody realises there are many many more. So they blow own trumpet to deaf ears. It is no secret mainstream are fed up of charities asking them for money, and in these difficult times who has money to spare anyway.

They, and the governments need to understand ignoring it is going to cost them a lot more than a few coins in a tin, or an ad to crowd fund half a dozen people.  It is going to cost the economy and the NHS more £billions.  Basic digital hearing aids are not expensive, they can be bought for as little as £30/40, the government could afford that, given it is £100s of £1,000s a year, they are going to have to find when unaddressed loss leads to deafness.

At their WITS end?

With respect, the issue is about freelance Welsh BSL interpreters fighting with WITS approaches, in a nutshell, WITS wanting to set a wage standard, and uniformity of availability, freelance doesn't want that.  Systems and deaf users are stuck in the middle of it.  The issue is UK-wide and no organised system of BSL interpreting is effectively run, or governed, because a high proportion of BSL Interpreters are part-timers and turn up dependent on other responsibilities, you may have to shop around!  Obviously 999 support is essential and a must.  WITS is a stab at it. 

Various options do exist in Wales via mobile phone access e.g. except awareness is an issue and some deaf are refusing to register their number on 999 systems because hearing people don't have to.  Obviously deaf relay systems exist, but again some deaf prefer the real thing not a relayed image.  There is a pretty random approach to supporting BSL using and reliant deaf, and a random choice being exhibited BY these deaf.  They do need a norm and a standard, but are reliant on part-time Interpreting, so if they disagree that's it, and there is nowhere much else to go, given a reluctance to opt for relay systems etc.  These deaf are a captive clientele with few if any other options. Curiously, no issues exist as regards to Welsh LA access or, the NHS/GP's either, despite the same questions should have been applied to Health.. It should be noted many deaf, prefer family not Interpreters too, and that right is established also.

Monitoring of Interpreters and setting rules to follow as well as wages etc, has also been met with opposition. ASLI does not have control over terps much, and at loggerheads with the BDA who appear to attack them at every opportunity, apparently wanting to manage BSL Interpreting themselves.  At the root of issues is nobody wants to rock the Interpreter boat given the alternatives.  Cedric is a well respected deaf campaigner, but as always BSL lobby areas tend to omit essential background details readers need, to follow what is being said. You cannot assume everyone will know it.  I think it counter-productive to go at the 999 systems when the real issues are within the support system itself and the choices deaf people are exhibiting themselves.  

Deaf have too much choice, a lot of it not really sustainable, they should be fully entitled to Interpreters, but NOT have family options to use (especially if they have no sign qualifications which would disadvantage the BSL user's ability to follow, take decisions away from the deaf, or damage their well-being, especially if the law is involved), nor use relay systems they may not be trained to use, or are familiar with. SIGN ZONE  e.g.  found many older deaf who primarily use these systems, had never used online for BSL access or knew about it.   A moot point is Interpreters, is that many are unqualified in legal situations such as the law or Health, they have to specialise to follow Jargon etc, but still they are not required to specialise. I'd be asking the question is that Interpreter qualified to translate effectively to that deaf person, if they struggle to follow legal  aspects?  Do not deaf also question the neutrality of police provided support?

CEDRIC MOON:

How the Welsh Government failed the Deaf community.

The WITS system for Sign Language interpreting has some parallels with the Post Office Horizon system issue for the Deaf community in Wales.  The Deaf community relies heavily on qualified British Sign Language (BSL) interpreters to communicate with statutory bureaucracies, especially for NHS-related appointments. Interpreters were commissioned by charities for Deaf people, including the South West Wales Interpretation Agency at Swansea (which was taken over by the Royal National Institute for Deaf People (RNID)), the Wales Council for the Deaf, and the British Deaf Association.

The system operated by the charities was easily understood by their Deaf clients. One would contact the charity for an interpreter to attend an NHS appointment. The charity would discuss this with the health board concerned, agree payment, and inform the client that a named BSL interpreter would be present for the appointment. Although the system was not foolproof, it was Deaf-friendly, fairly bureaucracy-free, and easily understood by Deaf users. But then everything changed.

Welsh Interpreter and Translation Service

In 2009 a bureaucratic triarchy comprising Gwent Police, Cardiff Council, and the Cardiff and Vale University Health Board instigated an initiative to provide an interpreter service for foreign-born nationals who needed access to statutory services like the NHS and the courts. This well-intentioned initiative was designed to save public money and reduce bureaucracy.

It was titled the Welsh Interpreter and Translation Service (WITS) and was based in a Gwent Police station, managed by senior police officers. Until 2014 it was managed by a chief inspector of police and then, until 2016, by a police superintendent. Obviously, a low crime rate in Gwent meant that its police force had the spare time to effectively run a business.

However, those involved with WITS decided to include BSL interpreting for Deaf people within its provision. There was no consultation with the Deaf community about this seizure of Sign Language services. Gwent Police and WITS unilaterally and undemocratically took control.....