Friday, 12 October 2018

DON'T Call me Deaf!

Silvana Kasi
When Silvana Kasi was 12 and an up-and-coming ballet dancer, she used to engage in a unique ritual before she danced. She would ask a friend to tap her on the shoulder when it was her turn to dance onto the stage for her solo. 

A violinist would also begin playing, signalling her to dance onto the stage. Trouble is, she couldn’t hear it. Once she was actually dancing, she didn’t have trouble hearing the entire orchestra. Her ear problems date back to when she was 9-years-old and had surgery on her right ear. 

Kasi had repeated ear infections as a child living in Albania. The result of her surgery was “devastating,” she says. The operation restored her eardrum but two weeks after surgery, her hearing was worse than pre-surgery. She explains these events in a matter-of-fact way. “My parents didn’t have a choice. Two or three times a year I had an ear infection." Getting tubes inserted, one possible treatment for North American children with reoccurring ear infections today, wasn’t an available treatment at that time, she said.

Astellas Pharma Canada gives back to the community She became increasingly aware of the taboo associated with having a physical disability. “I didn’t want to be called deaf.” When she and her husband were first married, even her own husband didn’t even realize she had a hearing problem. It took her mother-in-law to point it out to him. The woman had noticed she would sometimes call Kasi from behind and she wouldn’t hear her. 

Should pharmacists learn British Sign Language?

Saffah Huseeba Danial is a second-year pharmacy student at the University of Lincoln
Erm, HoH too!  Technically the UK state encourages all BUT those with hearing loss to use pharmacists as a consultation area for 'low level' health issues like colds etc, and issues of using tablets and medications that may clash.    But the legal reality, is they are prevented from actually doing a  diagnosis, the BMA states they aren't qualified to do that.

The inclusion in many pharmacies of hearing loops for aid users is as far as Pharmacies went because when challenged to provide signed support as the state told them to do, no one could sign or was willing to pay for it, and most don't switch loops on.  At the UK's largest one (BOOTS) and they said although they DID advertise access for sign users, they relied on staff who had attended taster sign sessions, and, she had left their employ 3 months ago....  After we left they removed the posters stating they were BSL accessible.  The problem we have with this item is no one is mentioning access for those who don 't sign and cannot benefit from a loop, deaf-blind need not apply.  So what's new?  Learn a bit of finger spelling?

Saffah Huseeba Danial is a second-year pharmacy student at the University of Lincoln. Have you ever wondered if sign language is communicated the same universally? I have — so I decided to delve further into the subject by booking a British Sign Language (BSL) taster session organised by the careers and employability department at my university. 

The session was delivered by someone who had lost their ability to hear after contracting meningitis as a young child. There were around 15 students in the session. I was the only pharmacy student; most of the others were studying psychology. I felt very excited to participate in such a rare opportunity, but I also wondered how people like me, with no previous experience with BSL, would be able to understand a session delivered in sign language. 

My query was resolved a short moment later: the teacher was accompanied by a translator so that we newcomers could understand. First, we were taught each of us what our names were in BSL. As the session progressed, I learnt that not only are there different versions of sign language around the world, but also different dialects of sign language in the United Kingdom. We studied the alphabet, how to tell the time and common phrases. I also discovered some of the many struggles that deaf people regularly encounter, such as people shouting in frustration and being impatient. 

However, I came to realise that something that is quite upsetting for the vast majority of deaf people is when someone gives up attempting to communicate altogether and walks away. We also learned that some signs in BSL would be considered profanities by the general public, regardless of the fact that the signs mean something completely ordinary in BSL, and are not profane at all. This was one of the points that I felt the need to raise awareness about. The session was by far the most interactive session I have ever experienced and I learnt a great deal about a subject I previously knew nothing about. 

After the session concluded and many questions had been answered, I began to ponder how my learning could be applied to the practice of pharmacy.

Charity News. Quit the teasing?

Sometimes we have to despair at charitable attempts to lobby on our behalf. This week the UK's largest hearing loss charity did yet another campaign about deaf (Not HoH?), people being teased and mocked in the workplace and elsewhere, which I am, sure is non-news to 99% of us who are at the cutting face of it all.

UK charity's reluctance to actually take employers, joe public, or the state on for contributing to it,  hate crimes, and even contributing to many premature deaths of deaf and disabled, suggests that after 107 years in existence they need to get a grip or give it up entirely. Grassroots are fed up of constant repeats of old campaigns stating the obvious but with no actions being taken to address them, while state mouthpieces on disability relentless attack us on a  daily basis.

Image result for sign language UK
Even deaf bloggers and activists are stuck records on repeat ad infinitum even supporting charity non-events like this one. Not a single campaign of awareness has succeeded in years for the HoH, and with the rise of cultural attitudes what there is, is bias.

It would be sad if it wasn't for the fact Deaf BSL members left this charity for dissing BSL and sacking its one and only BSL CEO years ago, because rank and file believed him unable to relfect issues of hearing loss, after that CEO left out 90% of the charity membership to concentrate on sign users instead.  They ended up handing him his P45.

Charity is dead, yet we still see some deaf and HoH bloggers plugging their wares, mainly because leaders and groups have lost out to the net.  Anyone with half an eye (Or ear!) can see that the 'Deaf' charity campaigns take the usual opportunist stance of turning the whole thing into an anti-Deaf one, instantly burying the reality of the hard of hearing suffering the same and indeed, more discriminations than they endure.  Each HoH campaign is a free gift to the BSL one, as media immediately seeks out the sole image of hearing loss ...... the BSL user, to front that awareness.

Related image
The only time we SEE the Deaf at hearing loss charities it is to complain they aren't included, and the HoH complaining their image is an old fart with a hand cupped to their ear. talking about the 'real' issues of ear wax removal and how to put batteries in their aids. We have near 10m doing this for goodness sake.

This 'Back to the Future' approach of raising awareness is a complete and utter waste of time, because they aren't taking the culprits on who distort awareness, or, the areas who think the D in deafness means Daft, Deaf or just plain Dumb.   ergo:

People are teasing us, employers won't give us jobs, welfare agencies say we are a con act, all deaf sign, stand in plain view and orate clearly,  yadda yadda, get a bloody grip we KNOW!  What we don't see is any change.

ATR has been lobbying 47 years and the record needs changing or we just accept nothing is going to change, and hide away in full view on the net, and pretend it is still all happening for us, as clubs, and deaf schools close around us all and educational access a system of haves and have-nots.  There are whole areas in the UK that don't have a single club or school, and when did anyone last see the Deaf join a charity?  They deserted their own BSL ones as soon as they got a mobile phone.

By far the glaring omissions in all campaigns for access is the reality only we can make it work, not a campaign.  We could suggest sitting there demanding everyone else complies to you is a complete waste of time.  Assuming the fact we are on a permanent fringe of everything and expecting others will adjust is pie in the sky thinking, especially and given the cultural areas prefers the fringe as this gives them both profile and edge and opposed to inclusion unless it keeps them apart!  Both sides of the hearing loss spectrum heading in different directions paying some sort of lip-service to each to avoid direct confrontation on the access and equality issues.

Wednesday, 10 October 2018

Smart TV listening.

Image result for noisy TVs zvox
The AV200 uses hearing aid technology to make voices crystal-clear, even at low volumes. The technology lifts voices out of the sound track - and then modifies the voices to make them understandable. 

We have never heard dialogue this clear and sharp. You'll hear every word, even on poorly mixed programs or British programs. The Speaker uses patented technology to make voices clear and easy to understand when you watch a program, movie or sporting event on TV. It uses a high-speed computer processor and advanced algorithms to separate voices from the rest of the soundtrack. 

It then manipulates those voices to make them clear and understandable. The results are remarkable. "  It works well above or below your TV, or to the left or right. Hookup is simple – just one connecting wire to your TV. 

Then plug it in the wall, turn down the sound on your TV speakers, and you get high-quality sound and clear voices on every program. It’s so easy to use it has a one-page owner’s manual.  If you've ever been blasted out of your chair by a too-loud commercial - you'll love our Output Leveling (OL) feature. Just push the OL button and a sophisticated processor takes over, making soft sounds louder and loud sounds softer, so there are fewer jarring moments when switching channels or when commercials come on. This system also helps by boosting the audio levels from a DVD or Blu Ray player that are not loud enough. 

The battle goes on...

Related imageBut is the war already lost? (ATR's delving into current social media issues and comments.)  This week why aren't the deaf or disabled a united force?

#1 We need to stop fighting each other, divide and rule which is the state welfare and care approach to need and which isolates has meant we are all less tolerant even of each other with a disability.

#2 Their strategy appears to be working well! While people are scared and vulnerable they will go at getting the best for themselves or try to. The emergence of 'no one size fits all' or that ambiguous 'each according to need' gig, means no unity of approach either, we need to form the collective approach, in the long or short run '2 heads are better than 1'. 

#3 We are being picked off by bias and fear (those of us who do stand up). If the term 'we' is used then that will invite opposition from others, (No-one speaks for me.), etc.  Even established disability groups will attack their singular own who dare to 'speak in their name'. Terminological warfare used by the more able to oppress the lesser ones but who use the same terminology to endorse it.  Crazy doesn't even begin to cover it,  some sort of 'acceptable discrimination policy' against own peers fuelled by differences that should not matter at all.

#4 You need to get to grips in what holds us back, in short, we (!) are doing it to ourselves. 

#5 Aren't charities there to help?

#6 They are solely concerned with 'help/support' not to lobby, just occasional 'concerns' about how lack of care affects their situation, not ours.  The state holds them in check by allocating funds selectively.

#7 True, continuing that concept means they won't back any sort of independence from it or they would cease to exist. Even the horror that is the welfare system is geared to isolate you so you cannot call upon the help you need. Then we saw charities signing a declaration not to criticise those who abuse us in case their funding was withdrawn.  Attacking that concept invited charities attacking you for 'undermining the help they provide..'

#8  We (Are all in it together), need to get back to mass action/inclusion and stop acting as if we are the only people with an issue. Because alone we cannot win.  10m with an issue and 10m individuals tearing own hair out? and jealous if someone else gets something they don't?   What purpose does that serve?  We have the means we have the people, what we don't have is the will to unite.  Exactly what the UK state wants. (That and ridding the United Kingdom of its disabled).

The Centre that saves your hearing...

These people still have their hearing... but only thanks to 20-year-old centre 

ANYONE who has ever suffered even just temporary hearing loss will know how isolating it can feel. So patients of The Hearing Care Centre in Colchester arrived in their droves to help it celebrate 20 years of life-changing hearing treatment and to share their stories. 

The centre was founded by managing director and senior audiologist Vicki Skeels in 1998 and was based in Crouch Street in the town before it relocated to its home in Headgate, in 2002. Today it has around 6,500 patients on its books who opt for non-NHS hearing care. It also has satellite centres in Tiptree, West Mersea, Frinton, Manningtree and at the Oaks Hospital, Colchester. Patients who attended the centre’s 20th anniversary afternoon tea at the Wivenhoe House Hotel included Pamela Boulden. Pamela, 69 and from Colchester, said: “I started using The Hearing Care Centre because I became deaf when I was aged about seven or eight from measles. 

“My mum didn’t take me to the doctors and I’d picked it up from a playmate. A neighbour rang the doctor but by then the damage was done.” Pamela had lost about 60 per cent of her hearing but managed to lip read. “I got victimised at school, I hated it,” she said. “But you manage to adapt.” She left school to work as an office junior but avoided answering the phones through fear of not hearing what people said. Naturally, her confidence was affected. “People think you’re stupid but you’re not. I wouldn’t go up to people and talk to them,” Pamela added. 

Years later, having moved to Colchester, Pamela was attending lip reading classes and was advised to try The Hearing Care Centre for more advanced hearing aids than the one she had tried briefly when younger. That was 19 years ago. Pamela, who is married to John, said: “I couldn’t afford it at the time so they said I could pay in instalments and I’ve never looked back.” 

Today the grandmother-of-three continues to visit the centre for check-ups but credits it with changing her life.


Google: New automatic caption options.

Google Slides chat
Google is rolling out a new automated closed captions feature for Slides that will make the presentation tool a lot more accessible for individuals who are deaf and hard of hearing. 

The feature uses the microphone in a presenter's computer to detect what they're saying and transcribe it in real time as captions on the slides. The captions appear at the bottom of the screen for audience members to read. "Closed captioning in Slides can help audience members … who are deaf or hard of hearing, but it can also be useful for audience members without hearing loss who are listening in noisy auditoriums or rooms with poor sound settings,"

G Suite Accessibility Software Engineers Laura D'Aquila and Abigail Klein wrote in a Monday blog post. "Closed captioning can also be a benefit when the presenter is speaking a non-native language or is not projecting their voice."

Crowdfunding helps deaf boy to hear again.

Lister Road green, Beechdale, Walsall
A deaf boy who had his hearing aids ripped out by bullies was moved to tears after a Crowdfunding appeal topped £5,700. 

The ten-year-old was shoved to the ground before being kicked and stamped on in Lister Road, Beechdale, Walsall. A group of six older boys repeatedly kicked him before ripping out his hearing aids and stamping on them. 

Lister Road green, Beechdale, Walsall Lister Road green, Beechdale, Walsall  Heartwarming response 'shows there are more good people than bad' after deaf boy's hearing aids ripped out in brutal Walsall attack Michele Mansell had set up the JustGiving page with a target of handing over £2,500 to the boy and his family. But as of Tuesday, kindhearted donors had raised £5,700. She passed on a message from the boy's family thanking everyone for their support. The family member wrote: “I found him crying in his room the last night. I signed ‘whats the matter’ and his reply was 'why are all the people being nice to me?' 

"I tried to explain but, being deaf, he does not always understand. “Its been such an emotional time for us all... we are just so grateful to you. x" 

Monday, 8 October 2018

Set up own hearing aids.

Image result for The U.S. Food and Drug Administration
The U.S. Food and Drug Administration beginning last Friday allowed marketing of a new device, the Bose Hearing Aid, intended to amplify sounds for individuals 18 years or older with perceived mild to moderate hearing impairment Bose logo(hearing loss). 

This is the first hearing aid authorized for marketing by the FDA that enables users to fit, program and control the hearing aid on their own, without assistance from a health care provider. “Hearing loss is a significant public health issue, especially as individuals age,” said Malvina Eydelman, M.D., director of the Division of Ophthalmic, and Ear, Nose and Throat Devices at the FDA's Center for Devices and Radiological Health.

“Today’s marketing authorization provides certain patients with access to a new hearing aid that provides them with direct control over the fit and functionality of the device. The FDA is committed to ensuring that individuals with hearing loss have options for taking an active role in their health care.” 

85% of deaf/HoH can listen and speak.

‘My mother practically cried when I heard a cricket chirping in the house,’ says a woman who got a cochlear implant at age 11. 

Jane R. Madell, a pediatric audiology consultant and speech-language pathologist in Brooklyn, N.Y., wants every parent with a child who is born hearing-impaired to know that it is now possible for nearly all children with a severe hearing loss to learn to listen and speak as if their hearing were completely normal. 

“Children identified with hearing loss at birth and fitted with technology in the first weeks of life blend in so well with everyone else that people don’t realize there are so many deaf children,” she told me. With the appropriate hearing device and auditory training for children and their caregivers during the preschool years, even those born deaf “will have the ability to learn with their peers when they start school,” 

Dr. Madell said. “Eighty-five per cent of such children are successfully mainstreamed. Parents need to know that listening and spoken language is a possibility for their children.” Determined to get this message out to all who learn their children lack normal hearing, Dr Madell and Irene Taylor Brodsky produced a documentary, “The Listening Project,” to demonstrate the enormous help available through modern hearing assists and auditory training. 

Sunday, 7 October 2018

Stephanie in 2023

Deaf boy beaten up by gang of 6.

The shocking and unprovoked attack happened on the evening of September 28 on Lister Road in Beechale, Walsall (pictured)
A deaf 10-year-old schoolboy was chased and beaten up by a gang of six, who then ripped out his hearing aids and stamped on them. The unprovoked and 'hateful' attack happened around 7pm on September 28 on Lister Road in Beechdale, Walsall. 

West Midlands Police say that the 10-year-old was pushed over, kicked and then stamped on. They say he is 'very frightened and shaken' by the shocking assault. The shocking and unprovoked attack happened on the evening of September 28 on Lister Road in Beechale.

The shocking and unprovoked attack happened on the evening of September 28 on Lister Road in Beechale, Walsall (pictured) The gang, who were all older boys, tore the 10-year-old's hearing aids from his head, flung them to the ground and crushed them underfoot. Police say that it will cost several thousands of pounds to replace the destroyed hearing implants.

The PIP Sagas...

Image result for PIPProbably the UK's most hated welfare benefit undertaken by the UK's most hated state arm who already are found guilty of 110,000 disabled deaths by welfare cuts.  

So effective the Americans sent own senators to the UK to see if they could cull the USA's disabled too, (perhaps one export that won't be welcomed from the UK!).  Tales of the social media tape...

Topic: The scandal of professional advisors who compete with the CAB on PIP claims, and the misguided disability advice groups who encourage it?

#1 If communication/hearing loss is your PIP issue here is one area that can advise it's quite important as CAB and others don't have the means to enable adequate advice. And, deaf in S Wales had to rely on the RNIB instead. 

#2 I got in touch with a group on FB called Fightback4Justice and ended up paying a fee for them to complete my form. Got my PIP renewed plus got full mobility component which I didn't get previously! They also deal with mandatory reviews and appeals. They have a 98% success rate and are very understanding. Hope this helps.

#1 This suggests if you cannot afford a fee then you lose out which doesn't seem very fair. We had to rely on the RNIB charity or would never have got PIP. I was handed a link in S, England and they said pay these people they will get your PIP for you.

#2 F4J is a non-profit, non-funded organisation run by qualified solicitors, the fee is for costs(postage, printing, phone lines/calls, premises etc.) They started in their home but because of massive client base had to get premises. 

#1 All I can add is that searching re PIP advice online threw up 800,000 UK  links to law firms (!) who certainly ARE for profit. I can also add when approached by a sign language user some said they would have to pay for own support too. The fact most cannot claim a welfare benefit without professional advice suggests we should be addressing why that is. Why are forms given out that people cannot understand? and, the DWP offering a BAN on legal advice during an assessment? (especially given a lot of medical people were unqualified to undertake the assessment via lack of speciality or training).

We have become easy prey for lawyers and solicitors, which means a 'Class/Postcode'  approach to welfare claims. Ergo if you are poor or have learning/literacy/mental health/support issues you cannot afford to, or be able to pursue a claim. 4 out of 10 claimants are deterred from claiming. It's become a lottery on claiming. You are 8 times MORE likely to qualify for PIP if you live in southern England with an identical issue.  

Wales e.g. had no deaf charity or advice area with anyone professional enough to advise or able to use sign language as a medium. Deaf groups like the BDA told deaf signers to ask the RNIB (A charity for blind people) to help.  Links offered to English advice areas demanded an up-front fee first or even a personal commute to advise.

We would not need such advice if the DWP were not so determined to deter claimants they:

(a) made the forms unreadable 

(b) the questions totally ambiguous, 

(c) The assessors unqualified to assess with 

(d) A remit to prevent claims, 

(e) Vital and time-controlled areas impossible to address, 

(f) Support difficult or impossible, 

(g) Charities to help who had no funds to do so, and even if you managed to wade through some of it, there would be 

(h) A catch 22 at the other end via a questionable 'points' system,.

(i)  No inclusion of issues of communication.

If you qualify they go for the lowest award and challenge it months later again.    The continual stress and even suicides that are following is dismissed by national media, who label all disabled and vulnerable as frauds, and benefit claimants as work shy and lazy, even those receiving benefits and working because the wages don't cover basics like food, rent or even the cost of a commute to the workplace itself...  Social mobility is bollocks.

The DWP have just created job opportunities for lawyers and solicitors and the more aware. With no guarantees, a claim will stand later on after a review so you go through it all again. Atypical DWP challenges we got as deaf people, are that we were constantly asked to prove we were STILL deaf, a speaking voice equals hearing, so we tell them lies. We counter, then we are told our own deaf organisations insist we have no disability either, so we are under assault from without, and within. 300,000 HoH lost all entitlements to claim, 58% of deaf failed too.

By far the initial barriers were that communication issues were neither defined or included properly in the forms, and if you are of a sector of the deaf who claim English isn't your first 'language' there was no viable alternative for you. At best you might get a BSL terp for an assessment, by then the form you screwed up because you couldn't follow has already damned you.  Most deaf relied on hearing family who could not follow either.  

Whilst additions to include communication issues have been made recently if they contradict your first claim you cannot challenge effectively or demand the first assessment was void because of the initial non-inclusion of your issue.

The DWP hired the top lawyers in the country to contrive benefits application forms and an assessment system that would be almost impossible for the claimant to understand or follow through without legal advice which they then duly blocked, along with last months ban on 3rd parties (Like your MP or councillor etc, being allowed access to your details at the DWP)  Which also raises an issue of can the DWP prevent the statutory advice areas helping you, by refusing them access to your claim file?

If you cannot get this access, the advice is impossible to give. I don't want links to other people, I want a form I can understand. Give us all legal advice no win, no fee!