How many deaf genes are there?

There are around +-140  specific genes that can cause hereditary deafness, the exact number is not well-defined. Deafness can be caused by mutations in a variety of genes that are involved in hearing, such as those involved in sound perception, auditory processing, and the structure and function of the inner ear.

According to the Online Mendelian Inheritance in Man (OMIM) database, which is a comprehensive catalogue of human genes and genetic disorders, there are over 1,000 known genes that can cause hereditary deafness or hearing loss. These genes are involved in a wide range of biological processes, including:

Auditory hair cell development and maintenance

Inner ear development and structure

Sound perception and processing

Auditory nerve function and transmission

Cochlear function and maintenanc

Some of the most well-known genes that can cause hereditary deafness include:

GJB2 (connexin 26)

SLC26A4 (pendrin)

TMC1 (transmembrane channel-like protein 1)

MYO7A (myosin VIIA)

OTOF (otofelin)

CDH23 (cadherin 23)

It's worth noting that many cases of deafness are caused by genetic mutations that affect multiple genes or pathways, rather than a single gene. Additionally, many cases of deafness are caused by non-hereditary factors, such as exposure to loud noise or certain medications.

Looks like the BSL Community has its work cut out.....

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.

BSL Deaf attack gene success.

Swiftly following on from a great success in enabling hearing in a deaf child.  Leading UK deafie like Rose Ayling-Ellis admitted she's "heartbroken" and "frightened", and the BSL Charity the BDA attacks gene therapies as undermining deaf people and their culture.  Rose attained fame by NOT using BSL, and was a lip-reader, who went over to the 'dark side' to enjoy BSL luvvie status instead and become a martyr for their lost cause.  The BDA charity a pain in the hearing loss backside.

Go Opal!

What right do these people have to tell parents of a deaf child or us as deaf adults, to not support or opt for medical advances that help us?  Rose isn't this child's mother, the BDA is not this child's family either.  Don't tell others what they should or shouldn't do.

ATR asks, is it not time these extreme areas of 'Deaf' people (Obviously we aren't because our face didn't fit), were put in their place for their relentless assaults on any sort of alleviations of deafness or possible cures and research on hearing loss?  Since day one it is don't have CI's, don't wear hearing aids, don't lip-read (That's oralism), and question the value of BSL under pain of eternal damnation.  

Maybe we could start  by asking fund-givers, and ask the charity commission, to lay down more strict criteria on handing funds over to an area, that represents people who want to prolong reliance, maintain a disability, erect a tiered education system with its own language' dominant, to create deaf have, and have-nots, and to promote some sort of sign-using elite,  and undermine free choice?

10m people exist in the UK with hearing loss from slight to profound degree. 10m these people only recognise when they want more money to promote their own way of life.  Whose entire membership is point.00002% of us all.     Should we be taking any notice of a a small, group of secular deaf miseries who would begrudge a small child an opportunity in life, because they don't want it, or it won't work for them? So who is forcing them? NOBODY is!  They should openly admit it means less deaf they can control, less kudos and ego's to be inflated, and less money for them to spend on themselves.

It's time we exposed these people as totally unrepresentative of fair-minded deaf people.  They shame us all.

How to Zap charitable beggars

 

Manage unwanted charity communications

The Fundraising Preference Service is a free service, run by the Fundraising Regulator, that can help you or someone you know to end contact with charities that you no longer want to hear from.

We know that people can be very generous when giving to charity, but that does not mean they want to hear from every charity. Some people can feel overwhelmed by the number of unwanted asks for donations they get, and do not know where to turn for help.

The FPS is the UK's official service which can help you to manage direct marketing communications from registered charities in England, Wales and Northern Ireland that are sent by addressed mail, emails, text messages or phone calls.

AH! Let's see....

RNID [Check]

BDA  [Check]

BDA [Check again, you can't be too careful]

3 down 2800 to go......

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.

Inclusion For the elite few?

 

ATR - MEDIA

 

Awareness isn't working....

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

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

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

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

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

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

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

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

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

AI, is it a threat to deaf & disability access?

Online UK BSL campaigners said yes, because of widespread issues with English and its grammar. Europe says no it doesn't.   Find below examples of huge advantages AI offers.   Accessibility tech hasn't traditionally been popular among developers. In 2022, disability tech companies attracted around £3.2 billion in early-stage investments, which was a fraction of the investment to other areas.

One reason is that disability tech start-ups are often considered too niche to attain business viability -- at least on the scale that venture capital demands. By definition, they are assumed to be building for a minority. However, some start-ups in the space have also begun serving the wider population — and throwing in some AI always helps.  Both cases are a balancing act: The wider business case needs to make sense without losing sight of the start-up's mission statement. AI, meanwhile, needs to be leveraged in a non-gimmicky way to pass the due diligence sniff test.

Some accessibility-focused start-ups understand these necessities, and their strategies are worth a look. Here are four European start-ups doing just that. 

Visualfy

Visualfy leverages AI to improve the lives of people with hearing loss. The Spanish start-up is focused on safety and autonomy -- this includes a sound recognition AI that recognizes fire alarms and the sound of a baby crying at home. "AI is crucial for our business," CEO Manel Alcaide told TechCrunch last month.  The firm offers consumers an app that also serves as a companion to Visualfy Home, its hardware suite consisting of three detectors and a main device. It also entered the public sector with Visualfy Places -- it’s no coincidence the start-up recently raised funding from Spain's national state-owned railway company, Renfe.  One reason Visualfy is gaining traction on the B2B side is that public venues are required to provide accessibility, especially when health and safety are on the line.

In an interview, Alcaide explained that the devices and PA systems Visualfy will install in places like stadiums could also monitor air quality and other metrics. In the EU, meeting these other goals could help companies get subsidies while doing the right thing for deaf people.  The latter is still very much top of mind for Visualfy, which is set up as a B Corp and employs both hearing and non-hearing people. Incorporating deaf individuals at all steps is a moral stance — "nothing for us without us." But it is also common sense for better design, Alcaide said.

Knisper

People with full hearing disability are a smaller segment of a large and growing group. By 2050, 2.5 billion people are projected to have some degree of hearing loss. Due to a mix of reasons, including stigma and cost, many won't wear hearing aids. That's the audience Dutch B2B start-up Audus Technologies is targeting with its product, Knisper.  Knisper uses AI to make speech more intelligible in environments such as cinemas, museums, public transportation and work calls. In practice, this means splitting the audio and mixing it back into a clearer track. It does so without increasing background volume noise (something not every hearing aid company can say), which makes it comfortable for anyone to listen to, even without hearing loss.

A former ENT doctor, Audus founder Marciano Ferrier explained that this wasn't possible to achieve with similar results before AI. Knisper was trained on thousands of videos in multiple languages, with variations such as background noise and distorted speech. This took work, but Audus is now leaving the development stage and focusing on adoption, managing director Joost Taverne told TechCrunch in February. "We are already working with a number of museums, including the Museum of Fine Arts in Boston," said Taverne, a former MP and diplomat who spent time in the U.S. "We also do audiobooks with a Dutch publishing house, where we make the audio book of Anne Frank's diary accessible for people with hearing loss. And we now have the solution for the workspace."

B2B go-to-market is not an easy route, so it makes sense for Audus to focus on clients like museums. They are often noisy, which can make audio guides hard for anyone to hear. Using Knisper's technology to make them more intelligible brings benefits to the general public, not just those with hearing loss, which makes adoption easier.

Whispp

Dutch startup Whispp also focuses on speech, but from a different angle. As TechCrunch reported from CES earlier this year, its technology converts whispered speech into a natural voice in real time. Whispp brings electronic larynx voice boxes into this millennium Whispp's core target audience is "a currently underserved group of worldwide 300 million people with voice disabilities who lost their voice but still have good articulation," its site explains. For instance, individuals with voice disorders that only leave them able to whisper or use their esophageal voice; or who stutter, like CEO Joris Castermans. He knows all too well how his speech is less affected when whispering.

For those with reduced articulation due to ALS, MS, Parkinson's or strokes, there are already solutions like text-to-speech apps -- but these have downsides such as high latency. For people who are still able to articulate, that can be too much of a tradeoff.  Thanks to audio-to-audio AI, Whispp is able to provide them with a voice that can be produced in real time, is language agnostic and sounds real and natural. If users are able to provide a sample, it can even sound like their own voice.

Since there's no text in the middle, Whispp is also more secure than alternatives, Castermans told TechCrunch. This could open up use cases for non-silent patients who need to have confidential conversations, he said. How much users without voice issues would be willing to pay for Whispp's technology is unclear, but it also has several monetization routes to explore with its core audience, such as the subscription it charges for its voice calling app.

Acapela

Acapela Group, which was bought by Swedish tech accessibility company Tobii Dynavox for €9.8 million in 2022, has been in the text-to-speech space for several decades, but it is only recently that AI changed the picture for voice cloning. The results are much better and the process is faster too. This will lower the bar for voice banking, and although not everyone will do it yet, there may be demand for individuals who know they are at risk of losing their voice after getting diagnosed with certain conditions.

Acapela doesn't charge for the initial phase of the service, which consists of recording 50 sentences. It is only when and if they need to install the voices on their devices that users have to buy it, either directly through Acapela or via a third party (partner, reseller, a national health insurance program or other). Besides the new potential unlocked by AI, the above examples show some routes that start-up's are exploring to expand beyond a core target of users with disabilities.  Part of the thinking is that a larger addressable market can increase their prospective revenue and spread out the costs. But for their customers and partners, it is also a way to stay true to the definition of accessibility as "the quality of being able to be entered or used by everyone, including people who have a disability." 

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.

The Deaf, and Artificial Intelligence (I)

 ATR debates with AI   

ATR Poser:  Deaf cultural members have suggested AI offers huge barriers to their access, as AI technology uses language and grammatical formats that aren't theirs, also, that where AI software originates, can determine what 'stance' AI takes on cultural/language debates and issues.  Is this not a barrier itself, to true AI interaction, in that AI cannot then offer true neutrality in any debate?

AI:   The intersection of AI technology and deaf culture poses unique challenges and considerations regarding access, inclusivity, and cultural sensitivity in AI interactions. Let's explore the potential barriers to effective AI interaction for deaf individuals and the implications of AI origins on cultural and linguistic issues:

Language and Communication Barriers: 

AI technology often relies on standardized language and grammatical formats that may not align with the linguistic preferences and communication styles of deaf individuals, including users of sign language(s). This mismatch can create barriers to effective communication and understanding, limiting the accessibility and usability of AI for deaf cultural members who may require alternative modes of interaction.

Cultural Sensitivity and Representation: 

The cultural and linguistic context in which AI originates can influence its understanding and representation of diverse cultural and language issues. AI systems developed in specific cultural contexts may exhibit bias, assumptions, or limitations in addressing the nuanced perspectives and experiences of diverse linguistic communities, including deaf individuals.

Neutrality and Bias in AI Debates: 

The notion of AI neutrality in debates and interactions is complex, as AI systems are designed and trained by human developers who bring their own biases, perspectives, and cultural backgrounds to the technology. This human influence can shape the stance and responses of AI on cultural and language issues, potentially leading to unintended biases, inaccuracies, or misrepresentations in AI interactions with diverse user groups.

Cultural Competence and Inclusive Design: 

Addressing the barriers to true AI interaction with deaf cultural members requires a commitment to cultural competence, inclusive design practices, and user-centered approaches that prioritize accessibility, diversity, and equity in AI development. By involving diverse stakeholders, including deaf individuals and cultural advocates, in the design, testing, and deployment of AI technologies, developers can enhance the inclusivity and relevance of AI interactions for diverse linguistic communities.

Ethical Considerations and Human Oversight: 

As AI technology evolves and becomes increasingly integrated into various aspects of society, ethical considerations regarding bias, discrimination, and cultural sensitivity in AI interactions become paramount. Human oversight, transparency, and accountability in AI decision-making processes are essential in addressing potential biases and ensuring responsible and respectful AI interactions with diverse cultural and linguistic communities, including deaf individuals.

In conclusion, the barriers to AI access and interaction for deaf cultural members, rooted in language disparities, cultural representation, and bias in AI development, underscore the need for proactive efforts to enhance inclusivity, cultural sensitivity, and equity in AI technologies. By fostering greater dialogue, collaboration, and understanding between AI developers, cultural advocates, and diverse user groups, we can work towards overcoming barriers to true AI interaction and promoting respectful, accessible, and inclusive AI experiences for all individuals, regardless of their cultural and linguistic backgrounds. Embracing diversity and cultural competence in AI design and implementation can pave the way for more meaningful and inclusive interactions that reflect the rich diversity of human experiences and identities in an increasingly technologically driven world.

ATR:  The irony is that it couldn't include a BSL or ASL user to debate with day one. But could interact with a deaf person who didn't sign, and wasn't cultural, but wasn't included in real terms via the 'debate' either.  AI also agreed BSL and ASL had insufficient academic language formats to debate with because it didn't use text, or didn't have the grasp of English to enagage.... oops!

Get a CI, you know it makes sense.

To be fair, not if you are white either!   Few people who are eligible for a cochlear implant actually get one.  Cost is the primary issue.  The total average cost of a cochlear implant for one ear, including the surgery, is £22,919 and for two ears, it is £37,904.  In perspective,  the cost of supporting a person with profound deafness in the UK can be significant, with estimates ranging from £15,000 to £30,000 per year or more. On balance, it makes more financial sense to implant all the deaf.

This cost may be covered by various sources, including the National Health Service (NHS), local government social care services, and private funding or insurance.  Cochlear implants have successfully improved hearing loss for decades, but few people who qualify for an implant actually get it. Even in countries with universal health care, the adoption rates are dismal.  Researchers are finding further disparities for marginalized communities, especially for Black and Asian patients, according to a recent study of British hospitals published last week.

This study assessed referral patterns for cochlear implantation among UK adults with severe-to-profound hearing loss. The study found that many eligible patients were not being appropriately referred for assessment, with disparities in access based on socioeconomic status, ethnicity, and gender. Patients residing in more deprived areas, living in London, males, and older individuals were less likely to be referred for assessment. 

Ethnic minorities, particularly Asians and Black individuals were also less likely to be informed of their eligibility. The study highlighted the need for targeted efforts to improve referral rates among underrepresented groups and address disparities in patient management. Further research is required to understand and address these inequalities and improve informed decision-making among healthcare providers and patients.

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.

Nine Stats.

 9 Statistics many deaf and HI activists may prefer to ignore.

(1)   Statistics from (Sign Health, a leading charity for deaf people in the UK), the annual cost of providing British Sign Language (BSL) services to the UK is estimated to be around £93 million per year. This cost includes professional interpreters, technology, education and training, as well as support services for the Deaf community.

(2)   According to a report by the UK charity Action on Hearing Loss, hearing loss in the UK costs an estimated £30.71 billion per year. This includes costs related to healthcare, social care, productivity loss, and welfare support for individuals with hearing loss.

(3)    Approximately 2 million people with hearing loss rely on hearing aids in the UK, and 3 million others who need them won't wear them.

(4)    A survey conducted by Action on Hearing Loss in the UK in 2019, suggest that approximately 1.7 million people with hearing loss rely on mobile phone apps to assist them with communication.

(5)    Official statistics from the UK's National Health Service (NHS), state, there are approximately 11 million people with hearing loss in the UK. This includes individuals of all ages who are registered with the NHS for support and assistance with their hearing loss.  It is not stated how many are defined as, or needing help and support.

(6)    No specific data available on the exact number of people with hearing loss who are identified as 'good' lip-readers in the UK. Lip-reading abilities can vary greatly among individuals with hearing loss, and it is estimated that only a minor percentage of the population have strong lip-reading skills. Lip-reading is only effective to a certain extent and should not be solely relied upon as a communication method for those with hearing loss.

(7)     As of 2021, there are 55 deaf clubs in the UK. No statistic records numbers of membership.  deaf clubs are located across various regions in the UK, with concentrations mainly, in cities such as London, Manchester, Glasgow, and Birmingham.

(8)     As of 2021, there are no specific statistics available regarding the number of hearing impaired clubs in the UK, or ones that do not use signing as a primary form of communication. These types of clubs may vary in size and scope, ranging from local community groups to national organizations.

(9)    While progress has been made in promoting inclusion and accessibility for deaf and hard of hearing individuals in the UK through various campaigns and initiatives, there is still much work to be done to ensure they have equal access to services, opportunities, and support. No major successes have been highlighted in surveys so far.

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.

Does anyone care for the UN, or the ECHR?

In numerous disability and deaf areas, ATR has discussed/debated the UN's involvement with disability issues, including the British Sign Language (BSL) Act. Although Scotland has made some progress, it is mainly through recognition and job opportunities rather than access or inclusion, which doesn't appear to be any different from before. Wales has no specific act, as it recognised BSL years ago.   Northern Ireland faces the question of prioritizing BSL or Irish Sign Language (ISL), and overcoming sectarianism. England seems to now focus on the UN/European Court of Human Rights (ECHR) approach, since endless campaigns at the UK central government in London, end up getting nowhere, as London pays no attention to their efforts, it didn't pre-millennium, when the EU 'recognised' BSL (And 27 other European 'minority languages'). 

Today the UK government  still hasn't endorsed BSL as a deaf teaching aid in schools, and all of them since closed entirely in Wales. (ATR has published many points, as to why this is the case, highlighting that none of it relates to discrimination).

Deaf campaigners appeared more interested in individual fundraising and specific campaigns, using disability status for funding and cultural purposes rather than applying the 'disabled' description to themselves, ignoring sensory loss and deafness descriptives, holding mainstream to account for issues they face. Disability and Deaf areas view social/medical modelling quite differently. 

The majority of disabled/deaf people appear to have scant interest in it all, and there is little recorded statistical/numerical support among the 10m disabled, or 151,000 alleged deaf.  Many will argue that trips to the UN and EU are pointless and fruitless and only serve as talk shops, or in the deaf case, social-interaction events. Pre-Brexit, BDA members attended many various EU events, funded by charities or local systems, to a lesser degree this still is the case.  E.G. The creation of a Deaf-EU website reflected their opposition to Brexit and support for the Labour Party, hoping for a return to the previous situation. E.G. At the launch of the 1995 Disability Act, disabled groups had to pay the BDA to support deaf people attending, who actually failed to turn up.  ATR did, and paid for himself.

The UK Government was criticized by the UN Committee for the Rights of Disabled People for their poor track record of upholding disabled people's human rights. Deaf and Disabled People's Monitoring Coalition and deaf activists were present to witness the Government being held to account. The Government's defence was deemed inadequate, with accusations of tokenism and lack of real progress in implementing the UN Convention on the Rights of Disabled People. The Committee highlighted violations of certain articles of the convention and criticized the Government's social welfare policies as demonizing disabled people. 

Disability activists are calling for the UK Government to incorporate the Convention into UK laws to ensure the protection of Deaf and Disabled people's rights. The final report from the Committee with recommendations to the UK Government is awaited.  ATR does not believe the UK government will comply, but draw attention to areas such as the BSL Act which is already empowering deaf people.  Obviously disability campaigners are targeting UK welfare systems, primarily the DWP, who they claim as agents of the UK government , the system is now designed to attack disabled rights, and disempower their inclusion and access need.

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.

Who needs to Campaign, we don't!

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

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

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

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

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

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

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

Disabled people are dispensable

Croeso Y Cymru....

Debbie Foster said how Covid restrictions impacted disabled people should have been understood. Debbie Foster said how Covid restrictions impacted disabled people should have been understood earlier

Debbie Foster, from Cardiff University, produced a report on the impact of Covid on disabled people in Wales.

She said problems included things like "the wearing of face masks which disadvantaged people with hearing impairments, the social distancing regulations which were problematic for people with visual impairments, and the locking up of a lot of people with learning disabilities” due to lockdowns. She added that many of these issues “should have been understood” early on.

The inquiry heard that seven in 10 deaths between March to July 2020 were of disabled people. Asked if that was seen as inevitable, she said there was a culture of “inevitability” coming down from the UK government when it came to people who were vulnerable because they had pre-existing health conditions.

She said there had been a feeling among the group involved with the report that “disabled people were generally seen throughout Covid as dispensable."