Can you benefit by gene therapy?

Who could benefit next from gene therapy that restored deaf toddler’s hearing?

Thousands of children across the world who suffer from deafness and hearing loss have been given hope after a ground breaking trial allowed a British girl to hear noises for the first time. Opal Sandy, aged 18 months, was born deaf because of auditory neuropathy, which is caused by the disruption of nerve impulses travelling from the inner ear to the brain.

Now, thanks to a “one and done” gene therapy trial being carried out in the UK and worldwide, Opal’s hearing is almost normal – and could yet improve after she became the first person in the world to take part in a ground-breaking gene therapy trial. Opal, from Oxfordshire, was treated at Addenbrooke’s Hospital in Cambridge. The surgeon and chief investigator for the trial said he hoped she would be the first of many people to benefit from new kinds of gene therapies that can treat inner ear issues, such as hers, and potentially other kinds of hearing loss as well further down the line.

“These results are spectacular and better than I expected,” said Professor Manohar Bance, a surgeon and chief investigator for the trial. “Gene therapy has been the future of otology and audiology for many years and I’m so excited that it is now finally here. This is hopefully the start of a new era for gene therapies for the inner ear and many types of hearing loss,” he said.

How does the treatment work?

Auditory neuropathy can be caused by a fault in the OTOF gene, which is responsible for making a protein called otoferlin. This enables cells in the ear to communicate with the hearing nerve. To overcome the fault, the “new era” gene therapy – from biotech firm Regeneron – delivers a working copy of the gene to the ear. In Opal’s case, she received an infusion containing the working gene to her right ear during surgery last September.

Opal’s surgery was very similar to fitting a cochlear implant, according to Professor Bance. He said the inner ear (cochlea) was opened and the treatment infused using a catheter over 16 minutes. “We have to make a release hole in another part of the ear to let the treatment out because it has to go all the way through the ear,” he said. “And then we just repair and close up, so it’s actually a very similar approach to a cochlear implant, except we don’t put the implant in.”

Can anyone who is deaf benefit?

Children with a variation in the OTOF gene often pass the newborn screening, as the hair cells are working, but they are not talking to the nerve. It means this hearing loss is not commonly detected until children are 2 or 3 years of age – when a delay in speech is likely to be noticed.

Professor Bance said: “We have a short time frame to intervene because of the rapid pace of brain development at this age. Delays in the diagnosis can also cause confusion for families as the many reasons for delayed speech and late intervention can impact children’s development.” 

How many countries offer free Hearing aids.

Examples of countries that offer free or low-cost hearing aids:

United States:

The National Institute on Deafness and Other Communication Disorders (NIDCD) provides funding for research and development of hearing aids, but it does not offer free hearing aids directly.  Some non-profit organizations, like the Starkey Hearing Foundation, offer free or low-cost hearing aids to individuals who cannot afford them.

Canada:

The Canadian Hearing Society offers free hearing aids to eligible individuals through its "Hearing Aid Program" in certain provinces.  Some provincial governments, like Ontario, offer subsidized hearing aids to eligible individuals through the "Assistive Devices Program".

Australia:

The Australian government's "Assistance for Eldest Residents (AER)" program provides financial assistance for hearing aids, including some free or low-cost options.  Non-profit organizations, like the Australian Hearing Society, also offer free or low-cost hearing aids to eligible individuals.

United Kingdom:

The National Health Service (NHS) provides free hearing aids to eligible individuals who have a diagnosed hearing loss.  Some charities, like the British Academy of Audiology, offer free or low-cost hearing aids to individuals who cannot afford them.

Sweden:

The Swedish government's "Hearing Aid Program" provides free hearing aids to eligible individuals who have a diagnosed hearing loss.

Finland:

The Finnish government's "Hearing Aid Program" provides free hearing aids to eligible individuals who have a diagnosed hearing loss.

Denmark:

The Danish government's "Hearing Aid Program" provides free hearing aids to eligible individuals who have a diagnosed hearing loss.

New Zealand:

The New Zealand government's "Subsidies for Hearing Aids" program provides financial assistance for hearing aids, including some free or low-cost options.

Ireland:

The Irish government's "Hearing Aid Program" provides free hearing aids to eligible individuals who have a diagnosed hearing loss.  These programs may have specific eligibility criteria, such as age, income level, or disability status. Additionally, some countries may have other programs or initiatives that offer free or low-cost hearing aids.

UK deaf: Years behind Latvia...

A deaf woman who moved to the UK to study said the UK was well behind her native Latvia for people with hearing problems. Beate Grinspone was born deaf but said she never felt like an outsider in her home country. Every cinema had automatic subtitles, interpreters were always available and Latvian people were more than happy to find alternative ways to speak to a deaf person, she said. But after moving to the UK she said she experienced discrimination and little effort from others to support her.

Through a BSL (British Sign Language) interpreter, Beate, from Smethwick, said: "I didn't feel disabled in Latvia. I was born deaf but my family are all hearing so I am the only deaf person. "I was always left out of everything because I could not voice my opinion, so I just followed. I was sent to an oral school and I was taught to speak, sign and lip read.

"Latvia is a small country and they had interpreters, if you go to court or a theatre they have connections to deaf organisation who make it accessible. All films have subtitles and on a court date they provide an interpreter immediately. "You (UK) are regarded as quite advanced but you are quite behind. There is a massive fear in England of being sued, health and safety breaches and fear of us."

1,9m live in Latvia, London alone has  9.7m.  The issue is Language, if she had stuck with Latvian she she may have been better off, because the UK BSL area is chaos anyway. Immigrants tend to have fewer issues accessing support than the locals. Immigrants know what they have to do to manage life and work in the UK.  The UK deaf natives just complain and do nothing, instead, demanding everyone else conforms to them.  NOT going to happen, we have to be pro-active and adjust.  

Incidentally London and Wales are the best areas of the UK to be deaf in.  The UK isn't a village, currently not even a country or a kingdom United.  The key thing is to not get angry about it, the UK is still way ahead of France and other countries (sorry best we can suggest!).  Deaf have to stop sniping from cultural cover and get with it.  There are laws in Wales empowering the native Welsh speaker, not really working either. less than 29% do, in perspective, only ONE percent of deaf are fluent in...... BSL, or have a qualification in it, perhaps start there?

Deaf people and Isolation.

More than a quarter of deaf people say they have been ignored in public, according to a major survey by a leading charity. The Royal National Institute for Deaf People asked more than 8,000 deaf people and people with hearing loss about their experiences and found that many say they still face considerable stigma in their daily lives.

Two-thirds (67%) of respondents said they had experienced negative attitudes or behaviours in the past year. Nearly half (48%) said they had experienced this from their own family members. The regular exclusion from social situations has an impact, with large numbers of those surveyed saying it had left them feeling lonely, isolated and lacking in confidence.

Sarah Adedjei, 23, from Erith in southeast London wasn't born deaf but lost her hearing as a child. "One time, somebody came up to me and asked for directions. I said: 'Sorry I didn't catch that, I'm deaf,' and they said 'Oh, it doesn't matter'. I said, 'No, I can help, just repeat what you said,' and they just said 'Oh, sorry, it doesn't matter,' and walked off. This happens so often. It makes you feel like you don't matter."

Crystal Rolfe, director of strategy at the charity, said: "Our research shows that every day people face negative attitudes and behaviours at work, when they're out shopping, and even from their families.

ATR Comment: A percentage of deaf people may never be able to integrate, regardless how accommodating others are.  Issues of communications, degree or type of deafness, time acquired, and lifestyles can have a direct bearing on inclusion, as can societal attitudes of a minority of deaf areas.

It is all too easy to go to media and apportion 'blame' to everyone else because deafness has limited your options,  or affected your ability to effectively socialise.  Of course there are areas within mainstream who don't have the patience or take the time to include, you just have to accept this will always be the case.  We deaf work at percentages 100% inclusion is a pipe dream, I could suggest 30% or less is nearer the most accurate guess, the same percentage as the effectiveness of lip-reading..   You cannot legislate the man in the street to accept or include you, so it comes down to their attitude, and, ours.  various inclusion laws and Acts only apply to SYSTEMS.  We both have to work at it. Many areas of the Deaf community don't actually want inclusion as most would assume the definition is, but prefer 'own' society as such. 

We can take examples or racial/ethnic or religious areas e.g. who like  'Deaf' prefer their own 'community' with own ethos and norms, and own 'language'.  Deaf people are just one area of 100s who already run social areas on a parallel direction, but not along with,  what we define as the 'mainstream'.  The endless drive to attain status for the Deaf communities, 'deaf-only' areas, even sign language which may well assist some deaf, but just is another 'barrier' perhaps mainstream won't try to overcome to help, and anyway is only one type of communication assist amid numerous others deaf use. 

Even then there is no consensus which 'format' is 'best' for deaf people.  Each deaf person has own road to travel, it is perhaps illogical to insist mainstream accommodate them all.  Nobody mentions the elephant in the room deafness itself is a debilitating sensory disability, and no amount of portraying deafness and hearing loss,  as something else, is changing the realities, because 10m suffer from it, and most of those would want rid of it, even those who go deaf after formative education, are against the aspect of a deaf community,because it is still Isolation, a cell with curtains on the bars,  with strict rules and norms to accommodate a drive for cultural status, and in an endless linguistic war it isn't really winning.  Many deafened or HI, don't  adopt sign language use, because they believe it restricts options, and it means reliance on others.  Whilst Deaf BSL users may accept this as a norm, most of us won't, we have had hearing  so we know what we have lost, or are losing.  We also know the first reaction to deafness is why me? followed by anger at others.  Deaf who never heard, rebrand it as a personal discrimination.

LOSS is the main criteria here, loss = Disability.  Those for whom hearing is something they have never had, are really in no position to declare deafness is not an issue, and the simplistic answer is to teach everyone with hearing to use sign language, it would not meet many millions who either do not want it, or want a cure or alleviations instead.  Taken in perspective (And playing Devil's advocate), Mainstream has 1,000s of areas (Hearing and disabled), demanding they adapt to include all manner of needs (And some not so much needs but politics).  Whilst BSL/Culture/clubs can meet a social need, it probably ruins members of it, for seeing a valid point in integrating with others not like them, or even unable to communicate with properly. Statistically the basis of the culture is diminishing too, with an 80% reduction in deaf schools, mainstreaming of deaf children, and huge demise's of deaf clubs too.

We are in transition mode, and the 'Deaf' community looking like it's fighting a desperate rear-guard action to stem the tide. In any case, they are a minority amid deaf and HI, so consensus on what they believe is the way ahead, isn't actually relevant to the majority.  If they lose a deaf culture to deaf being included is that not a price worth paying?  Clearly some say no, it is that area, which will basically oppose real inclusion.  

The article included from the RNID, I fear is unhelpful, it's stats including non-deaf people, workers in the field, and vested interest charities too, 6,000 out of 10m suggests, nothing substantive, or definitive.  We cannot keep blaming the many, for the antics of the few, or, we alienate them too. Life happens, we just need to accept and get on with that.  We also need to clarify the minority are not the majority or can speak for them either.  Nothing for us without us, but nothing without mainstream either.   If we treat them as enemies we are always at odds.  We aren't numbers, but we have very complex needs, with no single answer.

Blink and you will miss it!

 ATR successes and multi-blogging

Blogs you can read now...LOOK RIGHT ---->

The Deaf hear again.

A baby girl born completely deaf can hear for the first time after receiving ground-breaking gene therapy. Opal Sandy from Oxfordshire was eleven months old when she was treated at Addenbrooke’s Hospital in Cambridge. She is the first British patient and the youngest child to receive this type of treatment.

Opal was born deaf because of a rare genetic condition, auditory neuropathy, caused by the disruption of nerve impulses travelling from the inner ear to the brain. Within four weeks of having the gene therapy infusion to her right ear, Opal responded to sound, even with the cochlear implant in her left ear switched off.  Clinicians noticed continuous improvement in Opal’s hearing in the weeks afterwards.

At 24 weeks, they confirmed Opal had close to normal hearing levels for soft sounds, such as whispering, in her treated ear.  Now 18 months old, Opal can respond to her parents’ voices and can communicate words such as “Dada” and “bye-bye.”  Opal’s mother, Jo Sandy, said: “When Opal could first hear us clapping unaided it was mind-blowing.

We were so happy when the clinical team confirmed at 24 weeks that her hearing was also picking up softer sounds and speech. "The phrase ‘near normal’ hearing was used and everyone was so excited such amazing results had been achieved.”

ATR COMMENT:  We know there will be mutterings this is a one-off success over a rare deaf gene, but ATR welcomes the brilliant work of those dedicated professionals attacking this pandemic of deafness and hearing loss.  We know certain deaf areas oppose intervention, but today nobody is going to listen to them.  Today one gene is addressed tomorrow maybe more, at least something positive is beginning to emerge, after years and years of 'breakthrough's' that never manages to.

Why we need to avoid AI.

Hard pressed researchers have hit a brick wall as regards to search options online via AI, those with deafness and hearing loss get told why by AI itself, do NOT use us. Sadly for cultural deaf this means AI doesn't recognise you...

AI Quote: As an AI language model, I do not have the capability to "research" specific types of news or differentiate between capitalized and uncapitalized terms such as "deaf" and "Deaf." My responses are generated based on a vast dataset of text that has been pre-existing in the model. 

When asked for news updates on a specific topic, I draw upon the information available in that dataset to provide relevant information. The information provided is not based on real-time or current news sources but rather on patterns and data contained within the model. For the most current and accurate news on a specific topic, I recommend referring to reputable news sources and websites related to that topic.

AVT. The fight goes on...

Despite BSL-using deaf  attacking AVT as oralism and an attack on deaf people. (Isn't attacking Makaton enough for them?).

LINK:  Sade and Topaz Oram from Warminster are supporting a call for auditory verbal therapy to be made available on the NHS. 

Two deaf sisters from Warminster are backing a call for auditory verbal therapy to be made available on the NHS. (An appeal  for AVT support was made in Wales also, but rejected in favour of BSL.

Sade Oram, 24, and her youngster sister Topaz Oram, 22, were both diagnosed as deaf soon after birth and wear cochlear implants. They attended an auditory verbal therapy programme supporting them to learn to speak as young children. They are backing a call by the Auditory Verbal UK [AVUK] charity during Deaf Awareness Week, held from Monday, May 6 to Sunday, May 12, for the government to make the therapy available on the NHS.

New research by AVUK, has revealed that more than a quarter (27 per cent) of adults in the South West of England believe it is not possible for a child born deaf to learn to speak as well as a child without hearing loss. Sade and Topaz say that with early and effective support from auditory verbal therapy, deaf children can learn to speak like their hearing peers.

Sade said: “I am proud to be deaf and proud of what both myself and my sister have achieved because of the support we had as young children with auditory verbal therapy and of course our family. “But it is disappointing that so many people still aren’t aware of what deaf young people can achieve. I am never held back by being deaf. “I love travelling to new places - going skiing in the winter and going to different music festivals in the summer. I'm always looking for a new adventure.”

Topaz added: “Challenging perceptions about the abilities and opportunities for deaf children and young people is so important to me, my sister and our whole family. It really is time to raise expectation and change attitudes of what deaf children and young people can achieve.” The charity's chief executive, Anita Grover, added: “We know that when deaf children and young people, like Sade and Topaz, have access to early and effective support, their opportunities in life can be transformed. Early and effective support is vital whether a child uses sign language, spoken language or both.

“This Deaf Awareness Week, we want everyone to increase their expectations of what deaf children and people can do and take action, big or small, to challenge the current knowledge gap so all deaf children can have the same opportunities in life as their hearing peers.”

Deafness communication is NOT just about hands (Take note BDA).

ATR - MEDIA

 

Why do BSL online sites block feedback?

 Argument for preventing feedback

Privacy Concerns: By preventing feedback on sign language using deaf online sites, users can maintain their privacy and avoid potentially harmful or unwanted comments.

FACT: 80% of BSL sites DON'T use sign language to write own  posts.  The claim all deaf are bilingual is unproven, even opposed.

Accuracy of Information: Allowing unfiltered feedback could lead to inaccuracies in sign language translations or information shared on the site, which could be misleading to users.

This means any challenges, or statement of real facts, can be blocked and the poster banned, if this undermines their 'message'. Only 1% of the deaf community has a qualification in BSL.

Respect for Diversity: Preventing feedback can help create a safe space for all users, especially those who may be more vulnerable or sensitive to negative comments.

Deaf BSL diversity is to discriminate, if you don't sign, you don't get in, and has nothing to do with inclusion or listening to others.

The argument against preventing feedback:

Accessibility and Engagement: Feedback can enhance the user experience by allowing for interaction, collaboration, and learning opportunities among users of sign language on the site.

Improvement and Growth: Constructive feedback can help site administrators and users make necessary improvements, updates, and corrections to the content and services offered.

Community Building: Feedback can foster a sense of community and connection among users of the site, promoting inclusivity and mutual support.

Conclusion:

In conclusion, while preventing feedback on sign language using deaf online sites may have some benefits such as privacy protection and maintaining accuracy, allowing feedback can also promote accessibility, engagement, improvement, growth, and community building. 

It is important to strike a balance between ensuring a safe and respectful environment while also encouraging participation and fostering a sense of community among users. Ultimately, the decision to allow or prevent feedback should be carefully considered based on the specific goals and needs of the site and its users. [BSL-Only?]

The Power of Oral Communication

Why Verbal Exchange is Essential in Today's Digital Age

In a world dominated by emails, texts, and social media, the art of oral communication is often overlooked. The power of spoken words cannot be underestimated. In fact, verbal exchange is essential for effective communication in both personal and professional settings.

One of the key benefits of verbal communication is the ability to convey emotion and tone. When we talk face-to-face, we can use tone of voice, facial expressions, and body language to enhance our message and ensure it is understood correctly. This is especially important in sensitive or complex situations where written words can be easily misinterpreted.  

Oral communication allows for immediate feedback and clarification. In a conversation, we can ask questions, seek explanations, and address misunderstandings in real-time. This helps to avoid confusion and ensure that both parties are on the same page.

Verbal communication fosters stronger connections and relationships. When we talk to someone in person, we can build rapport, establish trust, and show empathy through our words and actions. This human connection is vital for building successful collaborations and partnerships.  Oral communication is essential for public speaking and presentations. The ability to communicate confidently and effectively in front of an audience is a valuable skill that can set individuals apart in their personal and professional lives.  

The power of oral communication cannot be understated. In a world that is becoming increasingly digital, it is important to remember the importance of face-to-face conversations and verbal exchanges. By honing our skills in verbal communication, we can improve our relationships, boost our careers, and effectively convey our ideas and messages to others.

Disability groups aiding discrimination?

Disability Wales is searching for Black, minority, and ethnic areas to support, because these areas enhance Disability Wales' option of getting more funding.  Should we not be questioning all these charities switching to populist areas to get money, and not asking the questions as to why funding is NOT going towards the wider populations of the UK?  

We know it is nothing at all to do with inclusion or equality, as stats can easily show the wider population of the UK, has a higher statistical incidence of deprivation than minority areas do.

What 'general' searches tell us:  

There are a number of charities dedicated to minority black and ethnic disability support, *but it is difficult to provide an exact number as new organizations may continue to be established. Some well-known charities that focus on providing support to minority black and ethnic individuals with disabilities include Disability Rights UK, Scope, and the Black and Minority Ethnic Safer Communities Network.

As for statistics on funding specifically dedicated to minority black and ethnic disability support, *there is limited data available. However, research has shown that charities and organizations that serve minority populations, including those with disabilities, often receive less funding compared to mainstream organizations. This is often attributed to systemic inequalities and biases within the funding system. Additionally, there is a lack of transparency and reporting on funding allocations specifically directed towards minority black and ethnic disability support.

(1)  The number of charities dedicated to minority black and ethnic disability support is also unclear due to new organizations continually being established, and a lack of recording them.

(2)   There is limited/No data on the funding for these charities.

(3)   Transparency and reporting on funding allocations for minority black and ethnic disability support is poor, to non-extant.

*ATR's own research on the Government's own charity website actually revealed that 161,098  charities supporting the Disability Wales target area already, so how is Disability Wales justifying the lack of support for them? Basic perusal of the links between deaf and disabled charities UK-wide reveal 80% are now switching focus to minority and ethnic/black/migrant support in a desperate drive to get more funding, and run the risk of discriminating against the majority.

Health support for digital Luddites...

Apparently, we needn't hold our breath, there isn't any. As a deafened person who doesn't have a mobile phone, I can share their pain, but I gave up when I realized online access, isn't, and is designed as a deterrence, not a supportive system, so demanded face-to-face again. Forget 111 sign health and that stuff, strictly for the BSL birds.

A recent survey conducted by Healthwatch, has, highlighted that digital barriers are making it difficult for people to access healthcare services. The survey revealed that elderly individuals, those with sight or hearing impairments, and non-regular internet users are facing challenges in booking appointments online or over the phone.

These barriers are causing some individuals to give up on seeking care, said Hannah Davies, the CEO of Healthwatch. Digital healthcare saw a significant shift during the COVID-19 pandemic. While some benefited from improved access, others, like Gemma O'Connell, who has deaf parents, struggled with the new digital approach. Angie Pullen, another respondent, expressed concerns about vulnerable individuals being unable to access GP services due to digital difficulties.

Dr. Richard Vautrey, a senior doctor, acknowledged the benefits of digital systems in healthcare. However, he emphasized the importance of ensuring accessibility for all patients. He highlighted the need for various avenues such as online, telephone, and face-to-face consultations to accommodate different patient needs.

Overall, the Healthwatch survey results indicate that the transition to digital healthcare is creating obstacles for certain individuals, ultimately hindering timely access to essential care services.

150 years later..

Recent disability (UK), support for 150years of disability media, feels like a damp squib.   In reality, it tends to suggest nothing has happened since.  1944 saw the first attempt to include the disabled in the workplace, via the law.  1945 saw it overruled when the war ended when the able-bodied demanded their jobs back.  Employed areas developed FOR disabled-only (Remploy/Monwel etc), guaranteed regular work and good pay for a few years, until able-bodied who were suffering unemployment wanted disability subsidies stopped so the work came to them instead.  Every step forward entailed another step backwards.

Disabled/deaf are more vocal, more visible, and more 'adopting the position', we need a change of direction. Many suggest only the disabled read disability media, so preaching to the already converted springs to mind, just activists chatting amidst themselves. Charities do it too.  We have become issues to exploit, rather than advancing things. We are talking cash basically, e.g, £6B is spent yearly, supporting  15,000 deaf people, and that DOESN'T include funding that charities get and the UK has 17,600 of them dedicated to ONE area of people disabled by profound loss. 

With lots of money and employment involved, these deaf quickly lost any control over it all, as corporate charities cashed in on them.   Major charities also use corporate strategies to head-hunt staff from others, and in effect caused the closure of many of them, any system that didn't provide cash inflow, wasn't entertained. Running at a loss wasn't a proposition, despite many well-meaning support areas, claiming many support approaches took precedence over profit.

You won't read a single disability or deaf area that believes all that has contributed to their inclusion or equality. Anecdotal evidence suggests we actually have fewer rights and support than 30 years ago when a plethora of equality and inclusion laws came into being.  The catch 22, was that a pandemic of individualism was created, which led to 'each to their own' approaches, so cohesive action was unable to gain traction, via numerical support. Disability and deaf areas are fragmented into more secular, and singular approaches by degree of disability, or type, or as in the deaf case, by language, background, social, and loss degree.   

In essence disabled areas and deaf ones created their own form of discrimination and made them the norm.  Legal action neutered the ability of disability groups to set a precedent, each individual had only a success, (or a loss mostly), for themselves. Another person had to DIY, but the state took away legal support for them to do so. 10m disabled and 11m with hearing loss, but the lack or actual support for these inclusive areas means it is basically nil where it counts.  Charities have next to zero as regards to membership support, but, the total power to speak for everyone else. It's tails wagging dogs. The few at the charitable 'top' getting the kuds/recognition, but the bottom line we are interested in, is as far away and in the smallest print, as it ever was.

Gissa Job..... I'm disabled.

What Access to Work will not pay for:  Access to Work will not pay for reasonable adjustments. (These are the changes your employer must legally make to support you to do your job.)

ATR has  expressed concern to the UK central government, about the current state of employment and accessibility for disabled individuals. We believe that merely declaring one's disability or minority status does not guarantee a job, as employers demand that skills and qualifications are essential. The statement above taken from the official government website, seems to also act as a real barrier to actually getting a job. In essence any 'reasonable adjustment', must be affordable, and 'affordable' is defined by the Employer, and if the state is prepared to pay the costs or contribute to them. 

Example of when an adjustment is not reasonable because of the cost:

An employee who uses a wheelchair asks for a lift to be installed so they can get to the upper floors of their workplace. The employer makes enquiries and finds the cost would be damaging to their business. The employer can turn down the request because it is not reasonable for them. However, they must make other workplace adjustments that are reasonable, for example making changes so the employee can do their job entirely on the ground floor.

ATR also criticizes some aspects of disability policies, including Access to Work (A2W), which they consider to be inefficient and patronizing. E.G. the state paying 4 or 5 times what any disabled employee could expect as a wage, just on support provision, e.g. funding an BSL Interpreter for as many hours as a deaf person works, can be very expensive.  ATR has seen examples of £800 per week in London via deaf arts, and part, not full time work.  Strict limitations on how, and who, can apply for A2W funding, has so far proven entirely prohibitive, and negative.  

A number of disabled are taken on as employees BECAUSE they are disabled, and to fill legal quotas, this tends to only apply to larger business/companies, but many disabled are unable to 'learn on the job', or lack the skills or support required to adapt.   Anecdotal evidence suggest there are 'scams' attached to this, as some employers appear to be rotating disabled employees to maintain funding, and fulfil their obligations, in essence to avoid making any meaningful contribution themselves. Disabled employees can be replaced by another, after only 3 months, and/or they leave because the support doesn't really work for them, or the job wasn't suitable in the first place.  

ATR suggests that A2W funding should be redirected towards education and skill development from the beginning, rather than focusing on aftercare and support.  This should be accompanied by further retraining as required to meet changing employer need. There are no effective systems for that currently.  It all contributes to failure of Access to Work to be meaningful. Overall, ATR emphasizes the importance of a more effective and comprehensive approach to inclusion and employment opportunities, and training, for disabled people.

AVT funding for deaf children refused in Wales

So why is the Senedd NOT funding it, but IS funding BSL, while sign language campaigners are attacking Makaton, cochlear implants, oral therapy, hearing aids, and alleviation approaches? All useful additions in addressing deaf communication issues in Education? BSL is NOT a sole answer to deaf communication. What happened to total communication?  Is it now commercial BSL interests that determine what is best? 

A five-year-old profoundly deaf girl named Grace from Cardiff has made significant progress in speech and communication after receiving auditory verbal therapy (AVT) and a cochlear implant. Her mother, Rhian, emphasizes the importance of early intervention and the positive impact it has had on Grace's confidence and social interactions. AV UK, a charity that provides AVT, is requesting funding from the Welsh government to train more staff in this therapy. 

Deaf adults like Harrison Steeple also share their success stories with AVT, highlighting the need for more accessibility to this therapy on the NHS in Wales. The charity's Hear Us Now campaign aims to secure funding to train more therapists and support vulnerable children. Rhian believes that all deaf children should have the same opportunities for success, and hopes to see AVT become more widely available on the NHS. The Welsh government acknowledges the importance of hearing care but has not yet committed to funding for AVT.

AVT (Audio Verbal Therapy).

All Party Committees (Wales).

ATR's Open letter to BDA Cymru, disputing they are actively participating in this area, and indeed not addressing issues BSL users face in Wales either, relying on campaigns developed elsewhere by non-Welsh deaf.

"ATR's own experience of APC at the Senedd is that nothing ever happens at all, indeed, I gather that the RNID stated the same thing, and threatened to pull out (twice), at the time, as the RNID was footing the access bill for those attending, and later withdrew much social online access in Wales due to lack of interest from grass roots.   

The BDA also refused to devolve their charity sites to localised control, taking away the ability of Welsh deaf to decide themselves how support/access and Inclusion should proceed, given, the Welsh need is entirely different from other regional areas, but we have no effective say. It goes without stating, the BDA shows no support to the majority of Welsh deafened, or hard of hearing in Wales, being a secular organisation.

Who is talking for Wales?  Leeds/Manchester/London BDA?   The last  APC  'meeting' never took place in person, but was done online in July last year. Just who knew about it?  Most deaf I talked to had no idea an APC actually existed, let alone saw the 'Zoom' thing.

Prior to that, there were 3 years when hardly any viable meeting took place at all, one or two meets a year if that.  Requests at the time from grass roots to participate, were refused outright, including a request ATR made to respond to one issue. Sadly BSL was then used as a 'barrier' to participation, as the BDA insisted on the 'D' approach, side-lining 300,000 with hearing loss in Wales.

At the end of the day, we are told grass roots cannot attend or represent at APC as the Senedd recognises only their representation, this is a 'rule' via all government centres apparently, but Wales?  There is an option to make it public, and we know,  the Senedd website is not going to be accessed by deaf people. It's a complete travesty of a website, that defines deaf people via 11-13 alternative descriptions, it is impossible to get any accuracy or detail from it, deaf areas are duplicated 3 or 4 times, under different headings.  This appears to be a major discrimination against grass-roots deaf of all kinds, as charities make the decisions, in essence, behind closed doors.  In effect nobody is represented except a few sign using deaf.

Neither the BDA or RNID have a mandate of Welsh membership TO represent, i.e. if we are to attach any validity to the RNID and BDA's own statistics.    It is widely agreed by most areas the APC is a pointless exercise, and the BDA/RNID operating singularly and in a vacuum.  There seems to be a lack of awareness that Wales has no  deaf schools any more, and that mainstreaming has proven a huge success, despite BSL areas criticising at every opportunity.  Neither does Wales have a BSL Act, apparently the fact Wales recognised BSL many years before the BSL Act was mooted, was ignored by the BDA.

The fact Wales is the best-served area for BSL users in the UK, having a surplus of BSL interpreters due to fewer deaf using BSL, and the BDA itself on record, as providing support for deaf to use unprofessional support (families, friends, etc), if they so chose.  This included e.g.  'mentors', many of whom did not possess qualifications IN BSL, and were ungoverned, and unmonitored regarding privacy laws, and neutrality, professional BSL terps are, some are actually their own friends, who had access to their private lives. One rather telling fact, is that according to the BDA itself, only 1% of deaf BSL users, appear to have any qualifications in it.  So the BDA is campaigning for access they cannot effectively use, BSL?

All current campaigns regarding BSL are aimed at awareness for HEARING people, given the reluctance by all regional governments to endorse BSL itself.  Also targeting children and young people, because they fail to connect to adults.  Overall, there is a 'hype' around BSL that is ignoring the realities for deaf people. We still have deaf people leaving school and then plateauing, and further education and training simply doesn't happen, even literacy improvements don't.  Perhaps the BDA needs to look AT deaf people and BSL and recognize where the need is.  

As my blog will verify, the ability to advance academically for deaf people, cannot happen because BSL lacks academic, and reference signs to teach with.  Perhaps the BDA really does need to start at the ground and build BSL up as a viable language first, and not just a glorified social tool?  What is clear, is that Welsh deaf and hearing loss charities have lost any sort of awareness about their own area."

Why barriers exist for a BSL curriculum.

This is before education  departments can find, or train enough teachers to make it happen. (The BSL GCSE is not about this issue, as it is aimed at making  hearing students aware of sign language, who can follow English anyway).  

Addressing the challenge of creating academic classes in sign language that can match the depth and breadth of spoken and written sources, particularly e.g. via specialized fields like science, or advanced theory, and other complex topics, presents a unique set of considerations. While sign languages, such as British Sign Language (BSL), are said to have their own grammar, syntax, and vocabulary, it is still viewed as a 'social tool' more than an academic one. There are many major obstacles to achieving parity in academic content across languages. 

Some factors to consider when seeking to bridge this gap:

(1)  Limited Academic Material in Sign Language: 

Despite the progress made in developing educational resources for sign language learners, there is a lack of specialized academic material in sign languages for advanced subjects. This scarcity can pose challenges for Deaf individuals who wish to pursue higher education or engage with complex academic content in their preferred language.

(2)  Challenges in Translating Specialized Vocabulary: 

Translating technical and specialized vocabulary from spoken or written sources into sign language poses unique challenges, as sign languages lack established signs for certain terms or concepts. The process of expanding the lexicon of sign languages to encompass these complex terms requires time, effort, and collaboration between linguists, educators, and 'Deaf' experts, who don't exist in sufficient qualifications or numbers currently.

(3)  Education and Literacy Levels: 

Another factor to consider is the variation in education and literacy levels among sign language users. While sign languages are primary modes of communication for many deaf individuals, there are disparities in literacy skills, especially in written languages like English. Addressing literacy challenges, promoting bilingual education, and providing additional support for academic literacy in both sign and written languages are crucial for enhancing educational outcomes.  This isn't happening currently, due to many factors.  E.G. training teachers, the availability of sufficient academic reference materials, and disagreements regarding conflict of BSL/English grammar, and issues of bilingual comparisons. 

(4)   Access to Higher Education: 

Providing equal access to higher education for Deaf individuals requires not only the availability of academic content in sign language but also inclusive teaching practices, curriculum design, and support services. Institutions must be proactive in addressing communication barriers, fostering a supportive learning environment, and promoting diversity in academia.

AI. Is it a threat to diversity?

ATR says:  Disabled business's is concerned AI is ruining them and they cannot 'compete' with other non-disabled areas utilising AI to keep 6 steps in front of them. Frankly and being a bit brutal,  keep up or get left behind regarding AI, that genie is well out of the bottle. It would help if disabled people were more savvy about AI and embraced it. So far, the free versions of it are barely worth using, what it does is scrape existing data already online, that has a universal agreement, (e.g. statistics), even if they contain little validation, AI won't do your investigating. The paid AI versions, if the disabled could afford them, would revolutionise campaigns and disabled businesses at lesser advertising levels. 

We can't be luddites, we will just be left behind. AI produces e.g. text and images, that some disabled areas will struggle with.  As regards to using its scraping modus to target specific areas, it WON'T help you, as the software via the yanks is NOT able to trawl personal sites, social media areas, or most other websites., AI also says you CANNOT criticise or challenge many established areas at ALL, a barrier to disability areas who would use it to aim at constantly moving targets, like politicians, minority extremes, the DWP even charities, who are already aspects of AI to target you. 

AI is the ultimate 'leveller' (Yes I know they said the intent was, look what happened), in that it doesn't recognise those who provide input to it via disabled profiles or racial identities online, only in as much as that may be the site declaration. 95% of disabled data AI scraped was from 'official' sources, not from small groups or individuals, especially those that challenged established 'norms'.  AI fought back (below).

AI technology has the potential to recognize and address diversity by allowing challenges to existing systems. By utilizing diverse data sets and incorporating feedback from a wide range of perspectives, AI can help identify and address biases that exist within current systems. Additionally, AI can be used to promote diversity by creating more inclusive and equitable solutions.  However, it is important to note that AI systems are only as unbiased as the data and algorithms used to train them. If bias is present in the training data, it can be perpetuated in the AI system. Therefore, it is crucial to carefully consider the sources of data and to actively work towards mitigating bias in AI systems. Overall, AI has the potential to recognize and promote diversity, but it also requires intentional efforts to ensure that it is done effectively and responsibly.

The key wording is 'potential' to recognise diversity, currently it doesn't really. Also AI admitted it isn't sentient... yet, and is governed by programmers and algorithms that themselves are restricted via various laws, the issues being, those laws are applied in the USA, where the AI apps etc are being created, so in effect we are told to obey American laws.

To be fair I have included the *AI version below, it IS more concise and to the point, but  it ignored the issue of American or other country influences in AI, who decides what AI can produce, but I feel it lacks the individual touch and a bit too business-like, probably an easy way to spot if who is using AI, to suggest they are more erudite than you are, which to be frank would cause issues of disability identifications and their accepted norms, and leave me barely literate.

*AI  A disabled business expresses concern about being left behind by competitors due to their limited ability to utilize AI technology effectively. They believe that embracing AI is crucial for success in the modern business landscape, as it has the potential to revolutionize campaigns and enhance their businesses if they can afford the paid versions. The company highlights the limitations of free AI versions that only scrape existing data. They stress the importance of disabled individuals becoming more proficient in AI technology to stay competitive.

The company acknowledges the challenges faced by disabled communities in utilizing AI effectively, particularly in targeting specific areas and dealing with established norms. They note that AI may not recognize the input from individuals or groups that challenge existing systems. While AI technology has the potential to address diversity issues by incorporating feedback from various perspectives, it is essential to address biases in training data to ensure fairness and equity.

The company emphasizes that AI's ability to recognize and promote diversity is currently limited and contingent on the programmers and the legal framework in which AI operates. They underscore the importance of actively working towards mitigating biases within AI systems and ensuring responsible AI implementation. Ultimately, while acknowledging AI's potential to promote diversity, the company highlights the need for intentional efforts to achieve this effectively.

The X VOTE

'Great news from Germany. Deaf MPs in the past: Belgium, Spain, Austria, Hungary. Never in UK political history, will it happen in my lifetime? Deaf BSL I mean!'

(Another Mr Buxton) desperate post to suggest the European Union is more willing to encourage deaf as politicians. Just showing his ignorance, as to how the EU actually works, i.e. as a collective, a totally different set up to the UK and governed by minorities and the UN-elected.

Nobody disputes a disabled or deaf person (Whatever ilk they claim to be), should be allowed/empowered to stand for office, but the case for the deaf who promote BSL as a language and it's perceived culture as some norm, tends to make their election as Members of Parliament completely academic, unless Mr Buxton is suggesting 'positive discrimination' ( A system that is discriminatory and patronising in itself), should be adopted as a means to by pass the electorate?  Too much goes on already.

I can e.g. point Mr Buxton to such a system tried in South Wales to  shoe-in women automatically to create balance, by asking parties to not put forward male candidates, that was completely opposed by women themselves, who quite rightly, preferred to be accepted on merit.  The electoral result, meant NO women got elected.  Be careful Mr Buxton, what you wish for, even if deaf would try justifying themselves via 'preferential treatment'.  It is unlikely the majority with hearing loss OR deafness would support any sort of campaign just based on sign language.

At the end of a very long day not enough deaf exist (ATR has produced numerous factual proof on its blogs/media), for deaf to put any sort of majority vote in to get elected, not even in London where 44% pretend they speak for 100%, (Or just ignore the rest)

There is considerable doubt, enough deaf care about standing for office, or, they posses enough localised or 'Hearing' nous, to appeal to any significant area of the electorate, given their nomadic and solitary lifestyles in clubs etc, they just do not have the necessary to appeal to any other area. Whilst utilising Interpreters to campaign and lobby, that image loses them most votes before they start, voters see the terp they don't see the client, and what they do see appears 'negative' despite all the awareness and inclusion campaigns that have failed to dispel that image.

Whilst Mr Buxton has some success himself, he comes from an area of privilege, most deaf don't, and, London is hardly the place to view democracy given the rabid minorities living there and the bias of 'inclusion', that operates via blocking free speech and censorship, as indeed, did Mr Buxton's old workplace of charities, and indeed  himself online where he bans all discussion and concerns raised regarding BSL promotion.

A stance of  'Adopting the position', and blaming everyone else for the fact they don't sign or are not deaf, seems de rigour with his adopted area. AS a minority they cannot stand or win elections, unless they use at least 25% of the inclusion and access they have and demand, we are not seeing that happening.  To expect voters will vote deaf just because they are a minority or some culture, shows why deaf get no electoral traction.  To call it discrimination  and suggest we ignore our own parliament and electorate, and allow an unelected European one to decide, is ridiculous.

That the UK isn't a member of the EU any more seems to have been missed as well, as has the reality, the UK doesn't recognise the ECHR or, despite recent posts during 'Deaf week', the UN either. Do you wonder WHY you aren't elected Mr Buxton? Nobody else does!