Relative to the UK's RNID charity current campaign about inadequacy in helping deaf/HI people remove ear wax, which can render you deaf, and as covered here, triggering trauma and fear too. .Loose Women's Kaye Adams has shared with fans how she took a trip to A&E after losing her hearing on the show. The presenter, 61, has given details of the health scare after the incident as she appeared on the ITV panel show.
Dame Kelly Holmes, Judi Love, and Nadia Sawalha all joined her to discuss the day's topics on Friday, January 26, when Kaye revealed she lost all hearing in her right year just minutes before she was due to be on air, reports the Mirror. During Friday's show, Kaye opened up on the scary moment as she told viewers: "We showed you a clip of what happened to me last Friday just before we went on air.
"I just completely lost my hearing in my right ear." A clip was then shown of Kaye struggling to hear the producers in her ear piece last week, where she said she could "hear nothing".
Note: 'Loose women' is a woman's program on UK ITV network.
His father's voice, the sounds of passing cars and scissors clipping his hair: An 11-year-old boy is hearing for the first time in his life after receiving a breakthrough *gene therapy.
The Children's Hospital of Philadelphia (CHOP) which carried out the treatment -- a first in the United States -- said in a statement Tuesday the milestone represents hope for patients around the world with hearing loss caused by genetic mutations. Aissam Dam was born "profoundly deaf" because of a highly rare abnormality in a single gene. "Gene therapy for hearing loss is something that we physicians and scientists in the world of hearing loss have been working toward for over 20 years, and it is finally here," said surgeon John Germiller, director of clinical research for CHOP's otolaryngology division.
"While the gene therapy we performed in our patient was to correct an abnormality in one, very rare gene, these studies may open the door for future use for some of the over 150 other genes that cause childhood hearing loss."
In patients like Aissam, a defective gene prevents the production of otoferlin, a protein necessary for the "hair cells" of the inner ear to be able to convert sound vibrations into chemical signals that are sent to the brain. Otoferlin gene defects are highly rare, accounting for 1 - 8 percent of hearing loss present from birth.
On October 4, 2023, he underwent a surgical procedure that involved partly lifting his eardrum and then injecting a harmless virus, which had been modified to transport working copies of the otoferlin gene, into the internal fluid of his cochlea. As a result, the hair cells began making the missing protein and functioning properly. Almost four months since receiving the treatment in one ear, Aissam's hearing has improved to the point he only has mild-to-moderate hearing loss and he is "literally hearing sound for the first time in his life," said the statement.
The New York Times reported that despite being able to hear, Aissam, who was born in Morocco and later moved to Spain, may never learn to talk, as the brain's window for acquiring speech closes around the age of five. The US Food and Drug Administration, which greenlighted the study, wanted to start the research on older children first, for safety reasons. The trial, sponsored by Akouos, Inc, a wholly owned subsidiary of Eli Lilly and Company, is one of several underway or about to start in the United States, Europe and China, where a handful of other children have already been reportedly cured.
"As more patients at different ages are treated with this gene therapy, researchers will learn more about the degree to which hearing is improved and whether that level of hearing can be sustained over many years," Germiller said.
[From the SEE HEAR Facebook site). Camille Piper, It isn't a debate (SEE HEAR program BBC2 24/1/2024), it is another excuse to blame society for everything. SEE HEAR still hosting a debate using the same old arguments from 1888 but with different people.
Young deaf moved on years ago, it is pointless asking people who cannot change if they want to. The 'hearing pill', an old chestnut and a pointless question because only the CI user and the other younger deaf man are able to use choice via experience. The rest CANNOT change, and don't want to, they are scared they won't cope. CODA's were downgraded to mere support, OK they understand their deaf parents needs, (Of course they do!), but they aren't deaf and have no deaf ID (why would they?). Then we had Mr Buxton et al blaming 'society' for everything wrong in the deaf world, exhibiting the old deaf paranoias.
The world has changed since 1950 or indeed since 1888. Whilst SEE HEAR said post in responses, the reality is SEE HEAR removed the right of alternative viewpoints at the BBC many years ago, because HoH and non-signing deaf complained they were being deliberately excluded or ignored. So did the Disability area at the BBC. Few 'Deaf' or Disabled on the BBC represent the rest of us, and all clones toting the same mantra that doesn't really apply to anyone most of us know. Deaf at the debate (We call it a debate but it wasn't really), were disabled, and weren't, they aren't sure, basically, that question only gets answered when it's time to apply for funding.
We even had the other old chestnut of 'Deafhood' and Paddy Ladd, most under 50 have never even heard of and talks in hieroglyphs, only Americans took Deafhood in, then changed it to suit them and made money out of it, selling the emperor's new clothes again. Basically you cannot stand out, if you fit in, and 'fitting in' is oppressive, you get the gist! SEE HEAR is well past its sell by date, has next to no viewers, and next to no online following either. Even the Sign Zone bans debates that mean anything, and a nationwide tour by them of deaf clubs found nobody knew who they were either.
THESE are issues that need addressing, it just looks like there is a hard core of deaf people living in a world of its own (Either in London or Manchester), and prefer that, who claim we all want the same, but the real discriminators are inclusion and access. Horrors! If everyone signs including hearing, we will disappear, erm.. it's called inclusion, you won't need to make a song and dance after. These people much prefer to be oppressed it seems to me, it gives them a cause celeb, and, importantly a job as well. It helps if you impress on young people or the system, society is going to make their life terrible, that is being positive about a deaf ID.
SEE HEAR still discriminates against Hard of Hearing, and downgrades mere 'deaf' as persona non grata, or even hearing people. Along with the BBC who removed feedback from them and disabled at SEE HEAR years ago. To solely promote BSL alone. They would never have got away with it but for playing the cultural ace. People don't realise how this divides all with hearing loss. A clear case when a right, becomes a fence to keep out others.
Several different coping strategies are linked to difficult listening situations. Strategies are sometimes described specifically as addressing fatigue and effort, Many of us mentally or physically avoid or withdraw from difficult listening or communication situations, or need to plan and prepare for listening tasks. Most commonly around our work and social situations.
Mental or emotional withdrawal
A strategy of mental withdrawal is often utilised in order to deal with experienced fatigue and effort. In conversational situations, particularly group conversations, we would stop engaging in listening. This was usually described as a response to the situation being “not worth it” or 'pointless'. Sometimes this is accompanied by nodding along so as to appear engaged in the proceedings. We are NOT being deliberately rude.
Physical withdrawal
Occasionally we just remove ourselves from challenging situations, rather than just 'switching off'. This tends to be due to a decision that the conversation was not really viable, particularly in noisy group environments. We can make toilet requests, need to make a phone call, really anything that allows us to retire from what is going on. We have been known to just run!
Avoiding events or situations
As well as withdrawing from some situations, we can also pre-emptively avoid events due to expected problems resulting from hearing issues/stress's. Avoidance is a strategy that we tend to introduce ahead of time. A dilemma between our dislike for challenging situations and a wish to maintain a social life or not offend people.
Avoiding interaction with others
Some decisions are taken to deliberately not engage with others when they were already in a social situation. Usually this is at group events such as restaurant meals or weddings where there are multiple potential conversational options with a decision already having been made to attend. It would then be decided that to avoid negative effects such as increased fatigue or embarrassment, certain people would not be engaged with.
Evaluating situational demand
We can use many detailed and different ways in which to plan ahead of time to mitigate challenging listening situations. we don't do 'spontaneous' unless we feel very brave! This means identifying what location to go to, who was going to be there, and whether or not the effort is worth it.. Planning, in general, can then be interpreted as additional effort rather than as a coping strategy, however, planning is an essential way to avoid negative outcomes rather than being a negative outcome in itself.
Planning where to sit
A specific but common example of planning deemed necessary, was deciding where to sit. Where to position ourselves so we can see faces and improve audibility. There’s a lot of thought that goes into it before; i.e. before I meet the person and attend the venue, I scan the tables, surroundings for the best place to sit, least stressful person to sit next to! I'd arrive early to ensure I maximised the potential to engage.
Preparing for work/responsibilities
I’d prepare well in advance and build on names, who is there, what their position was etc. If you can only sit far away from the main participation, don't go, or at least ensure people are aware why you don't want a back seat. I would do a lot of preparation that other people wouldn’t do in order to help myself, and minimise any potential stress points. I always assume inclusion is not a given, or an issue could prevent it, so I make sure first.
BSL GCSE welcomed but 'will be a struggle' says Manx Deaf Society CEO (Isle of Man News.)
Not thought out, un-resourced, maybe impracticable?
Lucy Buxton.
The subject will be rolled out in schools in England from 2025 The Manx Deaf Society says it wants to see British Sign Language offered as a GCSE option but believes there are issues to iron out before it could be correctly implemented. Chief executive Lucy Buxton told Manx Radio it's easier to roll it out there as it's already considered an official language - whereas it isn't on the Island:
Lucy Buxton: "Here and in the UK, in England, they are going to struggle to find qualified teachers who are capable of teaching the BSL GCSE. As such, I haven't even seen the syllabus so I don't know what's included at the moment when you learn BSL.
If you take examinations and qualifications, so you're taking a registered course, you have to do a certain minimum number of hours and there are standards that are applied. And ideally you are taught by a member of the deaf community, so someone who uses sign language themselves. It's their first language, or possibly somebody who is a close family member of someone who uses sign language and the number of teachers qualified teachers in England who are qualified to teach BSL is shockingly small. I think from memory there are about 1000 teachers and about 2000 secondary schools, so that's going to give you an indication of how difficult it is.
But here on the Island, I'm not aware of anyone who is a registered, qualified British Sign language teacher. So when we offer courses, we offer a level one and a level 2. We work with a deaf teacher from the UK. I don't know how schools are going to manage to do that without somebody here to actually be able to deliver that.
Chanelle Sukhoo: How beneficial would it be if we had something like that here?
Lucy Buxton: You never know who is going to find themselves with hearing loss, and BSL can be helpful for a lot of people.
Chanelle Sukhoo: Have you noticed more people interested in learning BSL?
Lucy Buxton: Yes, there are definitely more people interested in learning BSL, but the actual number of people who use BSL as their first language is decreasing here on the Island. It would be lovely to have a thriving growing population of British Sign language users. However, the support that is needed for that community, it's not just being able to use the language, you have to think that it needs some sort of formal legal recognition. You also need all the other support that are in place. For example, if a BSL user wants to go and make a will and see their solicitor, how they going to manage to do that? You need an interpreter. The number of sign language users that we have at the moment aren't enough to have somebody working here full time as interpreter too.
We are interested to knowing what's happening across the water, and it's not something that I think we should rush in too quickly here. I would like to see how things develop in the UK, but obviously if people are interested in becoming a BSL teacher, then please get in touch.
How the promoters of the GCSE manipulated input to avoid being accused of bias, and discriminations against other deaf people, and those with hearing loss by pretending they didn't exist. This doesn't stop them however utilising 'Inclusive remits' and quoting disability stats etc and non-signers as referring to them.. 10/11m with hearing loss is not, 10/11m BSL using deaf, yet, the myth is accepted as a fact, and a norm. As is the 151K BSL using deaf. They have NEVER been identified.
No charity has to validate what its statistic is, or where it is obtained, indeed, they are the sole source of them too. At the root of it all is Charities and campaigners are primarily exempt from FOI requests etc that others are bound to, so don't have to justify or validate the statistics they put out, the Charity Commission allows it too, so is equally complicit on assisting the provision of false data to the government. As a side issue it was reported online more charities than deaf people existed. Nobody questions, nobody checks, and nobody can. In the right areas, charities and campaigners have free reign to quote anything they choose to.
Just when you thought there could not be any more diversity extant, a major area of the hearing loss community, has dropped the basic stereotypes of deaf/HoH/HI and 'Deaf' to declare they wish to be known as 'Trans-deaf'. They redefine themselves via the following major differences to the 'Deaf Community' and sign-language-using minority.
Bronwen Artur sent us this podcast for ATR Media (Cymru), of a discussion with Mervyn James, a profound deaf man, regarding his suggestion he and others be called Trans-deaf persons. It contains no sign language, reasons will become apparent...
Bron: "How can the trans terminology, be applied to deaf people with no gender description inclusion?"
Mervyn: "The dictionary definition and the general acceptance and rights, do not define gender as the sole basis for using trans terminology, as people with hearing loss, we are using the term to describe basic and diametric differences that exist in the hearing loss lifestyle, culture, social, loss disability, access, inclusion, and support needs. Basically, so the wider mainstream does not label us as just another sign language-using stereotype."
Bron: "Are there no trans individuals in the hearing loss area?"
Mervyn: "Trans in this respect describes different areas unconnected with sex or gender. There are areas already who describe themselves as trans and use it to describe a preference to be recognised as individuals, with individual needs. We believe using 'trans' in the hearing loss sense raises the profile of 300,000 in Wales with hearing loss hitherto ignored, I understand there is some opposition to this term being applied but that is down to the assumption it is sex/gender-based. Let's bury that assumption here. It is in response to the media and mainstream, already baffled by the rising demands of trans acceptances and the almost daily addition of more trans definitions. It is about our difference, and own perceptions of difference, which we feel is our right to state too."
Bron: "Just how do people who are deaf differ from 'Deaf' people, I don't understand, Deaf sign, deaf don't, they hear with hearing aids?"
Mervyn:"Well, if you are profoundly deaf then you don't hear anything! It is a clinical fact. Currently, anyone with a degree of hearing loss can call themselves deaf, it's a social versus a clinical model of the disability or how the person views its effect. Another distortion doing the rounds is that ALL deaf sign, you pay your money, etc, it is the hype of successful, but misleading, or false campaigning slogans, as it uses BOTH deaf and Deaf terminology in the campaigns. In clinical terms, both areas can be deaf, even sign language use doesn't mean the user is even deaf. Campaigns leave that open to misinterpretation. It is clever lobbying, 15K English BSL deaf can become 150K etc. There is complete confusion of statistics as to who they are talking about. The key is to keep society always on the back foot. You have made the point I was making. It is lack of awareness, lack of understanding, and this has reflected on our area negatively, via a lack of access, covert discrimination, and poor care and support."
Bron: "Can you give us any examples, of what you mean?"
Mervyn:"We can demonstrate statistics, but that is playing the system games, lies, damn lies etc, none are accurate, none validated, consultation doesn't take place, nobody but vested interests participate, it is all done by rote, and people read into them what they want to read, or manipulate them (for kudos/gain mostly), charities for funding, campaign areas for publicity. The state has no statistics but the NHS, who are prevented from identifying those with hearing loss by law, and relies on the same people wanting money/funding from them to provide 'facts', who can in effect quote any number they please, obviously the higher the number, more demand for funding appears. The BDA declared a 10X increase over 2 years e.g. It was never validated.
Bron: "Are you saying, charities lie to get funds?"
Mervyn:"Well misinform, distort, or blur the numbers, yes I do. 1 in 6/7 may well have hearing loss or deafness, but no statistic says they all require help or support, and no statistic says they are all deaf. Local authorities/regional governments declare very little demand, and they are the people who are by law obliged to provide support. The NHS only tells us how many have hearing loss, (the clinical statistic), which charities then can 'suggest' means all of them need help and aren't getting it. Obviously, the state tends to go via how many ASK for it. If we can take e.g. the case of NHS/999 access, then you are more likely to be offered BSL (British Sign Language), support than any other communication format, regardless of hearing loss degree, personal preference, or established need. In the case of Wales, over 50 BSL interpreters exist for less than 800 sign users there, again we don't know how daily reliant on BSL they are, or if they utilise alternatives about their daily lives, or indeed how often they use an interpreter. Part of the issue is the 'global' view of the UK that ignores devolution. It's common to read English campaigns being sold as Welsh, Irish, and even Scottish ones. Such ignorance existed during the BSL Act lobby, who were unaware Wales had no need for it, and still hasn't adopted the Act.
Indeed the BSL Act lobby launched in Wales came from Newcastle and Manchester, but 'sold' as a welsh lobby. Cardiff held a meeting about it, only 9 deaf attended. Sign language is just one option open to deaf people among others. E.G. Only 2 STTR's (Speech to text), operators were listed as available for deaf and others with hearing loss who may prefer text access, with waiting times up to 6 weeks or more, there is no organised system like BSL for others with hearing loss, BSL interpreters are primarily freelance people who don't rely on it as a full-time job, this could suggest far less demand exists for BSL than is being claimed.."
Bron: "So people with hearing loss suffer a shortage of text professionals, lip-speakers, note-takers etc, but the Signing Deaf show demand for BSL, those with hearing loss do not, is that correct?"
Mervyn:"It is more the case the acute, or non-extant shortage of help, suggests any demand we make is academic, that doesn't mean the demand isn't there. It is a 'chicken and egg' situation. 10m with hearing loss in the UK have to fend for themselves mostly, maybe using text on mobiles, or apps, or asking relatives to make oral calls, manage their internet access, etc, technology has been a boon, but personal interactions and support is still dire. Access isn't working with the NHS/999, or other vital systems like the DWP. System areas and charities are currently pouring funding into sign language accessible contact instead because regular income is there, a new BSL Act has emerged, Wales didn't need it, because BSL users in Wales got full access nearly 15 years ago. Access has become the norm for the welsh sign user, and no access, the norm for everyone else with hearing loss.'
Bron: "There are charities who can provide what you need, the RNID or the BDA, even the NADP, without taking the extreme act of using the 'Trans' term to get it?"
Mervyn:"We make no apologies for using the term. It is no more extreme than people using trans terminology to describe every preference they may have, ours is about recognition and support for our hearing loss. We believe it will be really effective in making systems and the government take more notice of our needs, the means justify the ends. Sign language has been effective in ensuring that area gets them included. We needed another 'angle' because sign-accessible systems cannot be accessed by us, it demands we sign too. We need systems that cater for our needs. We are left out of 'Deaf' access, even via an equality law designed to include deaf people. The BSL Act, via culture and sign, excluded us by default, it was a singular attempt to divide deaf people via formats they used, that dumped millions with hearing loss too, it is ludicrous we would have to campaign for an Act for us, whatever happened to inclusion? 2% of deaf people set up a system that was applied to 10m others by default. Systems and charities also failed to include by endorsing the subtle capitalisation of our profound loss, which we won't recognize on those divisional terms. It creates resentment."
Bron: "You say charities excluded, what do you mean? How are they they doing that?"
Mervyn: "You mentioned the two major hearing loss charities, RNID, and the BDA, actually, the BDA (British Deaf Association), has no hearing loss community members in it, it has a very loose 'affiliation' system which they go with to enhance own area mostly. Affiliations suggest division too and the endorsement of it. The BDA has less than 1,000 UK members, the majority of whom are 'passive', i.e. take no active part in what the BDA does, the RNID is the same. The BDA are remnants of older deaf school people, brought up with huge BDA involvement in the past, but is hardly relative today, as Wales, has no deaf schools. It exists via sectarian-type approaches to 'defend their culture'."
Bron: "Defend it against who?"
Mervyn:"Against anyone who suggests they should utilise alternatives to sign language. It isn't feasible in my view to expect a hearing society, or a hard of hearing society, to adapt to them. The BSL Act simply endorsed their own view they are not going to make efforts to be included themselves, and that is now legally recognized as a right via their 'culture'. They want everyone else to adopt sign language for them, it is doomed to failure, especially with poor integration advice coming from community leadership rooted in the past. Their leadership demands are to maintain isolation approaches.. Personally, I feel the BDA is the root source of that, using paranoia as a means to control vulnerable deaf people. I also feel most deaf people know it, hence only 1 in 15, profess any support for it. They rely on old people in deaf clubs mostly."
Bron: "The RNID caters to your area doesn't it?"
Mervyn: "Yes, and No, inclusion being relative, as to gain funding and support, the 'Deaf and Hearing Impaired' remit is mandatory. It suggests inclusion and equality but follows the 'money/services' BSL provides. Primary BSL demand comes from a singular source in the UK, London, and the South East of England, which has 44% of all deaf signers living in, or near there, campaigns are city-based. It is important to point out that regions have huge variations of need and demand, and, all have a much higher population with hearing loss, not deafness, also regional governments approach health and support differently. Demand can be non-extant for BSL in many areas of Wales."
Bron: "But laws have to include don't they?"
Mervyn: "Inclusion relies on demand, nobody is going to subsidise support hardly ever used. Use it or lose it applies. Charity and systems have to show they are inclusive, hence the global remit but it is in title only. The BDA doesn't have to include and can claim culture and language rights as an exemption, providing their area with an exception to that inclusive rule. I see this as a deliberate specialisation, that suggests they need more 'help' or a higher priority, than others with hearing loss. It establishes a tiered support set up with deaf have, and have-nots, who can be left unsupported because they use a different means to communicate. I respect these deaf have effective campaigning people, but I question their inclusive bottom line. The RNID mainstay is offering professional support at cost, to establishment areas, and charities provide care on the cheap acknowledging the state no longer wants involvement. We cannot control our own support needs, so cannot establish demand for communication preferences that suit our need, there is great inequality."
Bron: "How can such demand be established?"
Mervyn: "With great difficulty, I admit, Charitable areas cannot 'sell' hearing loss to the public. 'Noise is life', as a politician once stated, and our youth have always endorsed it too. Awareness is simply getting a hearing aid or a cochlear implant. Hearing loss groups where they exist have no campaigning core, they, and campaigners too, such as exist, are isolated, access is not there confidence is zero, and grouping doesn't take place. Many fear being attacked as discriminating against BSL users, and online BSL areas heavily censor or block pleas for HoH support. Using trans, shifts the focus away from that."
