Friday, 10 July 2020

AOHL on the ZOOM trail...

Having watched AOHL (Cymru), recent Zoom offering I feel compelled to respond to it.

I have to disagree with a number of AOHL statements made regarding lack of BSL to Boris/English COVID updates, as early as March 18th he was on screen with a BSL terp explaining the lockdown, and I published the link to it here and on social media at the time.

There WAS a breakdown as regards to not informing deaf BSL access was already there on the BBC news channel, but have to say when informed of that access later and on-screen, not only by myself but on screen later on the BBC1 channel, campaigners chose to ignore it and decided to campaign on the basis there was none instead.  

As regards to lack of BSL online, also not true,  a number of charities including the RAD and SignHealth as well as many individuals went to social media giving a breakdown and daily updates as well in sign language.  The prime question was why the dedicated BSL channels of BSL ZONE and SEE HEAR chose not to do their part? It was very late in the day before the COVID penny dropped for them and only after criticisms. They are both funded to educate and inform the BSL deaf and failed, choosing to cover trivia instead and standing by watching the prime BBC media doing their job.

Maybe we should withdraw funding for those areas?  Of course, many elderly deaf/HoH don't go online, so perhaps that is an issue AOHL can address as to how you get them to do that? I can point out to an around wales videoed survey undertaken at the time by the BSL Zone (who visited near all major deaf club in Wales), only to find few if any deaf had heard of them.  Cardiff being the least interested with just 9 people turning up. A lot of deaf are not regularly online although they have iPhones and such because they tend to use them only to contact each other or family.  

Much is made of poor BSL access and is unfounded in reality, the major COVID campaigns were about lip-reading not BSL, although there was no background to the demand for that lip-reading access or if it applied to BSL users, or just the HoH who mostly rely on that.  What we did see were 'Deaf' demands for face mask removal at NHS staff, which was never going to happen. 

There was and still is ample BSL access to health areas, obviously, a lot is currently by remote, and it seems there was some reluctance in certain BSL areas to adopt remote interpreting.  What I didn't really see was any great demand for HoH access, or campaigning for it, this is mostly down to the fact they adapted to text and technology possibly.  

There are 'cultural' issues in that some BSL deaf still refuse to adapt or use alternatives even when they are able to, as some 'sop' to culture or the perceived language.   I was surprised but found it welcome, suggestions there needs to be more Signed ENGLISH, (now all we need is SE teachers and Interpreters!), as BSL is a major issue of access, and HoH and others are reluctant to go with it because of cultural and grammatical differences.  

It should be, but isn't, 'horse for courses', having said that most of us opted for captions and ignored BSL anyway so had access all the time.   We can only assume the sign language user cannot read or doesn't want to and prefers to make their own access difficult.  You adapt or go without they chose to go without in many cases.

The health and social care issue is split between the sign user demands and the needs of the rest of us.  Far too many health areas are not offering HoH any access but BSL, a format they don't use.  We saw much demand for clear masks and access for lip-readers, but no demand for clear speakers, so how does that work?

A number of NHS staff are almost impossible to lip-read with or without a mask especially some from BAME areas with beards or poor English, HoH and deaf patients have expressed these issues, then called racists, Why is that?  A clear mask would still be no use and Interpreters can have difficulty following too.  In reality, if you are a lip-reading patient or have issues with hearing loss and aids that don't really give you the access you need in full, there is none in reality to the NHS, this is a particular concern in Wales e.g.  

Of course, this video is predominantly covering  English-oriented output, and that in itself has created issues of misinformation, not only to the deaf, but, to the hard of hearing who live elsewhere also, who have been assuming updates on COVID on the BBC applied to the UK, I was unsurprised to hear some welsh TV sets were turned to BBC West which didn't cover BSL signed welsh COVID updates. I also noticed interpreters used BSL and not welsh signs.  If there are regional variations the welsh aren't aware of them.

Not enough clarifications came from AOHL or anyone else that what the BBC was putting out in England was not applicable elsewhere.  As we know Wales, Scotland and N Ireland all have different approaches and agendas as regards to updates and approaching the COVID issue.  This is still the case.  

I must express disappointment with the continuing over-emphasis on BSL, this is not a major format 12m of us ever use (And there aren't 12m in Wales, only 3/500K, and we don't KNOW how many rely upon BSL because there is no way to find out),  but it is still getting 76% of all posts and campaigns, we can be forgiven for feeling 12m or 500K whatever, don't really exist.

In reality, there is NO 'national' access set up for anyone but the BSL user.  AOHL we see as a predominant Hard of Hearing support area not a deaf or BSL one, which is the 'domain' of minority and mostly unsupported groups like the BDA or RAD and don't include HoH anyway.

What I have found during this epidemic is a lot of campaigns having little or no basis, simply because they chose not to really seek out information that was already there.   The Initial TV updates were charts and statistics mostly followed by stay home, that was it basically, a turn off for hearing let alone the deaf. 

ATR posted updates and links to BSL to all online sites It could manage to, including the mooted BBC ones and they ignored the links.  By far it is NOT the BSL user who is deprived or lacking in either support or access, but the rest of us having to totally rely on text, who are now a 'community' of text users,  and because lip-reading is a failure for most and lacks the wherewithal to teach via its classes, and countered, by BSL classes that encourage no speech to be used even amidst NHS care and support staff.    What price lip-reading then?

AOHL tries to sit between two such stools and is obviously not going to succeed.  It has been losing out to a few dedicated BSL activists despite its corporate approaches, and can apparently speak for everyone.    Wales has near half a million with hearing loss, which on the face of it suggests next to none have any access at all.

'Seeing is believing' and not reality, in that hearing loss, cannot be seen and being deaf can, via sign usage.  Again if AOHL needs a campaign or two it is to balance that out by concentrating on its core membership the Hard of Hearing and leave the BSL users to their own dedicated and specialist areas.  Albeit it is agreed they are making a real mess of it so far, its their choice. 

Apart from re-branding for RNID to 'hearing loss' but still retaining the D and confusing everyone, it now needs to take the next step and concentrate solely on the Hard of hearing instead.  We would also like to see a lot more support for the deafened and acquired deaf who are stuck between some sort of ideological war going on between the deaf charities and the Hard of Hearing ones, which has seriously undermined access for them all.

The 'all deaf sign' is applied to all hard of hearing sign too, which suggests the HoH ae getting branded with some other sort of identification by default.   The AOHL is contributing to the myth and needs to stop doing it.

To be frank, AOHL on this video does not come across as any sort of a BSL/HoH set up anyway, it comes across as very 'hearing' oriented and appealing only to those with useful hearing anyway. It should not be an issue to 'specialise' solely on the HoH area, which AOHL keeps stating is 12m people, but 12m the AOHL has no way of addressing at present. 

As AOHL rightly stated its main 'strength' is in that the system tends to take note of what they say, but in regards to access or inclusion it is not a simple matter of stating we need this and that to happen when there is no real direction on what the need is for 12m with hearing loss or what support they actually need, loops? lip-speakers? etc, these aren't identifying any sector really.  First, find your base then find out what they want. Then TRAIN them.

Most of us find nothing at all if we turn up at a clinic GP or hospital if we don't use sign.  There were no actual statistics of ANY HoH demand with 7 health areas in Wales NONE at all for HoH they only held some statistics for the BSL users.  

At one point 48+ BSL interpreters existed for the Deaf, and just 2 of them who also qualified as lip-speakers, text operators were invisible, allegedly only 2 of them with 6-8 weeks waiting lists which is actually zero access because you cannot wait that long in health terms, that transpired in zero demand then.  We don't get access, because the support supply does not exist, then a demand cannot be seen either.  Then 12m/500K become invisible again.

There are no viable records the Welsh NHS had any demand for the HoH.  I just think the AOHL is grabbing at straws with the most obvious contenders,  the sign users, rather than identifying its own membership, which means you are doing the BDA's job for them.

Address abysmal and non-functioning lip-reading classes and opt for a new set up that includes total communication and more individual tuition, since many attending such classes drop out a few weeks in because they cannot follow the tuition, this has a knock-on effect of deterring such potential learners of bothering to learn to lip-read at all, many approach such classes very much as a desperate and last resort, for them to drop out soon after means those in most need are the first being sidelined in favour of those still able to use a hearing aid effectively, but then still fail to cope when that no longer works for them.

Even that isn't helping the most to learn to lip-read as no qualifications are required and no skill level has to be met. IT suggests communication classes for those with hearing loss are treated as some sort of hobby course (Like flower arranging).  There is no point in teaching lip-reading this way as it stands. 

A dozen 'Zoom' videos are not going to address the chaos that is (Or rather not), hearing loss support, which is completely different to DEAF support, make the break, move on.  AOHL is allied to areas like NDCS etc but even they are at odds with the cultural demands of the few who are disrupting the very thing they say they want, equality and access by default, not only for themselves but for us too.

We need a clean break so AOHL can concentrate ON the majority.

Deaf Mental Health a cause for concern?

Health State Values of Deaf British Sign Language (BSL) Users in the UK: An Application of the BSL Version of the EQ-5D-5L.

At The Rim: The Deaf and Mental Health (II).ATR: A pretty amateurish attempt with far less involvement with enough deaf to gain any realistic data.  It fails to differentiate across the deaf board or to offer comparisons, and localised to England.  

In as much as conclusions, they have come to, it suggests sign users suffer more than hearing with poor mental health (The hearing mental Health Stat is about 25% of the population).  Hardly news, but it would appear the unequal bias and involvement of the BDA caused a lot of it, probably underpinned to provide ''ammunition' for more inclusion.   You need outsiders looking in who can compare.   You also need co-operation from these 'Deaf', and that is extremely difficult to obtain.  They also cloud issues by suggesting poor mental health is simply down to poor access or lack of BSL and this interferes with treatments.

The 43% stat seems to mirror the same statistic we get from the assessment of deaf children.  Basically, it suggests more physical health issues are presenting. This could be the reluctance of  'Deaf' to get health issues seen to, and accepting symptoms as a norm others would not.  There are a lot of long words and stats involved but we don't get the nitty-gritty of what they are trying to say, there is mention of CI's as 'mean', that actually infers CI users suffer less because they have them.  So is the key mass implantation day one? Why use CI's, when the survey focus is on BSL using deaf?

I am unsure how they compare like with like aka hearing with the 'Deaf' (Not to be confused with the rest of the people with hearing loss).  They only assessed in England too so no comparisons there either.  We know the 'Deaf' have many issues mainly down in many cases to a total reliance on sign language, a lack of inclusion in mainstream, inability or reluctance to adapt, or even to further own communication skills as adults, and it doesn't cover the historical background of this area, many who actively avoid inclusion and/or are unable to make it work for them even with support. Their 'contentment' to be with other deaf in the same position is hardly helping is it?  It is feeding the indifference.

The key here suggests addressing deaf education approaches day one, not discovering that as adults, it has all just fed the isolation and depression by default, and that via various rights and access campaigns and their complete inability to address root causes of failure to include or fend off poor mental health, are major contributors too.

It just means more specialisations, more isolations etc, a never-ending rubber stamp, poor mental health is the price of hearing loss.  It isn't, we would disagree it feeds into inevitable dementia too.  Blame hearing, blame lack of inclusion, blame.... but making a virtue of isolation and calling it something else isn't working is it?  There is an issue poor mental health is some sort of norm to accept because so many are suffering with it.

When ATR looked at specialist deaf mental health 2 years ago  it was a chaotic mess with mostly psychologists and psychiatrists being unable to assess the deaf as the communication wasn't effective enough, and the deaf not really able to express what the issue was.  To offset that some areas employed a few level 4 BSL care workers to act as the go-between.  As ATR covered at the time abuse of deaf people was exposed as a result.  But there just wasn't enough level 4 aware BSL deaf with the issues to make it clear what the issue was.  Ergo 'dumbing down' took place and assessments became suspect and over-medication became the norm.

Differing areas of the UK offer no specialist centres or clinics at all, so most will be 'exported' out of the area, and away from family and peer support too, which adds to their health issues, them being even more socially isolated.   What IS a specialist centre for the 'Deaf'? just an area where everyone signs to them?  There are many who are still in own homes being cared for by people with no sign knowledge at all,  simply because it is cheaper to do that than a local authority paying a lot of money to export the 'problem' somewhere else.  Wales is one example where those needing intensive help have to go to England for it.

Currently, some of these specialists areas erstwhile run by deaf or HoH charities are being sold off privately, we cannot know if that is going to improve things or make them a whole lot worse, specialisation costs, and those who fund it are reluctant to cover the true costs, and this means less specialist help.   It is no way to run an effective MH system or to offer treatment for it.  

By far most Deaf MH areas simply do not have the BSL professionals to enable effective treatment, there are grave doubts if using the basic BSL interpreters assisted (Or hindered!), by a social worker is the way to do things.  Usually, by that time of referral,  poor mental health has advanced too far to be treated locally, there seems no system within that community to ensure these deaf are being helped or monitored.

Logic suggests as it starts day one being identified in school there is the place to start.  Not as an adult when habits are fully established and more difficult to address.  Their 'base' (Usually deaf clubs or similar), are closing as we write, fragmenting further any cohesive attempt to approach the problem.  Few BSL interpreters are qualified to assist in mental health matters even fewer being trained to assist in what appears to be an epidemic of poor mental and physical health with 'Deaf' people.   There is a need to train Terps to specialise given 43% of their clients have this issue. 

All we are seeing are BSL groups rambling on about culture, and blaming mainstream for everything,  whilst apparently, 43% of their community needs urgent mental health support, and not getting it, it is by far a more pressing issue than guess what happened in 1880s Milan surely?