Tag Archives: deaf

Feel the beat: deaf fans fight for access to live music

Growing up among the reggae soundsystems and pirate radio stations of 1980s Hackney, Troi Lee was surrounded by music, “speakers on the street corners blaring”. After getting a Walkman for his 14th birthday, he would wander through his neighbourhood playing songs by Public Enemy on repeat: “It was pure joy,” he says. This passion led Lee to follow in the footsteps of his cousin John and become a DJ. It’s a common enough path – except that Lee was born severely deaf.

Deaf Rave founder Troi Lee.
Deaf Rave founder Troi Lee. Photograph: Vaya Media

With his hearing aids on the telecoil setting, he could hear certain frequencies of his Walkman – the bass vibrations from the percussion and glimpses of lyrics – through a magnetic wireless signal. When DJing, Lee, now 44, uses digital software to visualise the instrumental elements that he mixes together. “We need to reverse the myth that deaf people can’t enjoy music,” Lee says. “I don’t let my deafness affect me. I want to show the world that deaf people can play music just as well as our hearing peers.”

The idea that deafness impedes the appreciation of music is gradually being debunked. In 2013, sign language interpreter Amber Galloway Gallego went viral in the US for her animated performance for rapper Kendrick Lamar at the Lollapalooza festival. Rather than merely signing the words, she embodies musical textures with her face and movements, showcasing a unique technique that she describes as “showing the density of sounds visually”. To represent bass, she places her arms in front of the lower part of her body and inflates her face, replicating the sign for “fat”, while higher frequencies are placed at head height and above. After her performance, US talk show host Jimmy Kimmel took notice, inviting her and fellow interpreters Holly Maniatty and JoAnn Benfield on his show for a “sign language rap battle” in 2014.

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Amber Galloway Gallego signing for Kendrick Lamar at Lollapalooza festival, 2013 – video

Despite some progress, a report by accessibility charity Attitude Is Everything recently stated that in the UK over 80% of deaf and disabled music fans have experienced problems when booking tickets to live music events. The UK’s live music census in February also found that only 30% of surveyed venues have dedicated disabled-access areas and only 7% of surveyed promoters have a policy to provide PA (personal assistant for deaf and disabled customers) tickets as standard. Yet it’s estimated that more than 3.3m deaf and disabled fans attend live music events every year, with a 70% rise in disabled-access ticket sales reported in 2016.

With one in six people suffering from hearing loss in the UK and around one in 1,000 children born profoundly deaf, the lack of accessibility to live music for deaf people is a significant challenge, and deaf fans believe too little is being done to serve their needs. “I don’t go to live shows very often as they’re not that accessible,” says writer Rebecca Withey, who is profoundly deaf. “There is absolutely not enough provision for us, and ironically when some venues do host accessible shows, they don’t promote them well enough for us to find out about them.”

For some fans, difficulties around access can put an end to nights out altogether. “Being ignored by the music industry has made me disengage from live music,” says deaf journalist and film-maker Charlie Swinbourne. Fans say specialist provisions are crucial: interpreting should be as readily available in the UK as it appears to be in the US, says student Liam O’Dell, while Lee believes that “all promoters should allocate a certain number of tickets for deaf and disabled people”.

Clubbers at Troi Lee’s Deaf Rave night.


Clubbers at Troi Lee’s Deaf Rave night. Photograph: Vaya Media

Small steps are being made towards inclusivity: festivals such as Glastonbury and Festival Republic events Reading, Leeds and Latitude all provide BSL interpreting on request. Still, the provision can face obstacles. “When access is permitted it is often done so reluctantly – it is not widely advertised, left unregulated and is often of an inadequate standard,” says Marie Pascall, director of Performance Interpreting, which provides the service for Festival Republic. She describes one instance where “an act refused to have the interpreter on stage, and then refused for the interpreter to sign any of their performance”.

Troi Lee has taken matters into his own hands. In 2003 he founded Deaf Rave, a quarterly event in London designed specifically for deaf clubbers. The inspiration came from his experiences at illegal warehouse parties in the early 1990s, where the speakers amplified the vibrations he had once enjoyed through his Walkman. “It’s something I can’t quite describe,” he says, “the lasers blazing up the place and the biggest soundsystems I have ever seen or felt, shaking the entire warehouse.” From that moment in 1991, he set out to convince the deaf community that clubbing was as much a part of their culture as the hearing world’s. Through heightened bass levels and the use of new technology such as SubPac – a wearable speaker that intensifies vibrations – Lee can make his events immersive.

The organisation celebrates its 15th anniversary this year, but Lee says there is still much to be done. Deaf people are twice as likely to suffer from depression as hearing people. Withey says: “There’s still a huge stigma attached to being a deaf music fan.” Says Lee: “We are one of the most marginalised groups in society, owing to our isolation, unemployment, lack of BSL in mainstream schools and the daily frustrations of communication barriers. We organised Deaf Rave because we have empathy for our community.”

What I’m really thinking: the deaf parent

What’s going on? Am I missing out on something? Or should I say on something else: all the opportunities for small-talk that might make me feel more comfortable and confident in asking if your child wants to come to ours for tea, because our kids are friends. I am bamboozled. I feel the opening gambit has been lost.

My audiologist is great. He tries everything, but it’s about how the brain processes the reduced amount of sound I get, which is about half what anybody else might hear. Lip-reading goes only so far. I’d swap my arm for your hearing. Or my leg. It depends what day it is and how many times I’ve had to get someone else to answer my phone. Or how many times I’ve had to ask the woman in the supermarket to repeat herself, only to realise she’s asking if I have a loyalty card, as she has every other time I’ve been at her till. As a single dad, I’m in the shop a lot.

I think everybody else is friends, and even if I know this is untrue and ridiculous, it still bothers me. I can see fractures after a couple of years, anyway. People who have excised themselves from cliques, new ones brewing. I’m good at reading people’s faces, but I’d rather know what they were all going on about.

I worry I’m stopping my child from having the life yours have. I worry I won’t pick up on something he says, and he won’t repeat it because he’s embarrassed or tired. Could he miss out on a school trip because of me? Will he tell me about his work, because it takes so long? Maybe I’ll miss a clue that he’s being bullied, or not get the punchline to his jokes. It’s exhausting, because I’m deaf all the time. I even dream in mumbles.

Tell us what you’re really thinking at mind@theguardian.com

What I’m really thinking: the deaf parent

What’s going on? Am I missing out on something? Or should I say on something else: all the opportunities for small-talk that might make me feel more comfortable and confident in asking if your child wants to come to ours for tea, because our kids are friends. I am bamboozled. I feel the opening gambit has been lost.

My audiologist is great. He tries everything, but it’s about how the brain processes the reduced amount of sound I get, which is about half what anybody else might hear. Lip-reading goes only so far. I’d swap my arm for your hearing. Or my leg. It depends what day it is and how many times I’ve had to get someone else to answer my phone. Or how many times I’ve had to ask the woman in the supermarket to repeat herself, only to realise she’s asking if I have a loyalty card, as she has every other time I’ve been at her till. As a single dad, I’m in the shop a lot.

I think everybody else is friends, and even if I know this is untrue and ridiculous, it still bothers me. I can see fractures after a couple of years, anyway. People who have excised themselves from cliques, new ones brewing. I’m good at reading people’s faces, but I’d rather know what they were all going on about.

I worry I’m stopping my child from having the life yours have. I worry I won’t pick up on something he says, and he won’t repeat it because he’s embarrassed or tired. Could he miss out on a school trip because of me? Will he tell me about his work, because it takes so long? Maybe I’ll miss a clue that he’s being bullied, or not get the punchline to his jokes. It’s exhausting, because I’m deaf all the time. I even dream in mumbles.

Tell us what you’re really thinking at mind@theguardian.com

When a deaf singer gets death threats from other deaf people, something’s wrong | Josh Salisbury

When the America’s Got Talent finalist Mandy Harvey first appeared on the show, she caused a social media storm. Harvey became deaf due to an illness, but decided to pursue her love of music, feeling the beat of the music through her feet. However, her singing caused a backlash among a very small minority, who sent Harvey death threats for promoting a “hearing” activity.

There is a long history of oppression faced by profoundly deaf individuals of which most hearing people are too little aware. Sign languages have historically been the target of repression, and many who are profoundly deaf have suffered at the hands of hearing people. Oralism – the practice of favouring speech over sign in deaf education – and the assumption that speech is an inherently superior form of communication can be damaging, both to deaf individuals and the deaf community. Even today, organisations will equate speech with potential, ignoring an equally valid language and culture in sign.

Deaf people – those whose preferred language is sign and belong to the capital D “Deaf community” – have had to fight for their rights, language and culture against this oppression. In that context, the strong feelings of an unrepresentative few can be understood, even if their behaviour can’t be condoned.

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Mandy Harvey: Deaf Singer Earns Simon’s Golden Buzzer With Original Song – America’s Got Talent 2017

The Harvey story, however, reopened the binary oralist versus signing argument. A recent segment on BBC’s Newsnight reporting on the story asked whether we should “promote oralism in the deaf community”. That’s such a frustrating way of framing the debate. The focus should be how we can spread awareness and greater accessibility for everyone, not forcing deaf or hard-of-hearing people to declare themselves as belonging to a speaking or signing camp.

Increasing our deaf awareness is a lesson we can all continually learn, even those with the best of intentions. Newsnight’s producers deserve some kudos for attempting to draw attention to an under-represented issue, and for inviting deaf guests on television. Paradoxically, however, the clip was not accessible to many viewers. There were no subtitles for those struggling to follow the British Sign Language interpreter. The camera panned away from signing guests, breaking the flow of conversation for anyone following along.

I’m severely deaf, and was born to a hearing family. Instead of being taught sign, I was taught to lip-read, and went to speech therapy classes. I rely on my hearing aids and I have a well-honed instinct for when to smile and nod during a conversation, if what’s being said escapes me. But the dichotomy between sign and speech can leave people like me feeling stuck between two worlds: too deaf for the hearing, too hearing for the deaf.

It also risks promoting a myth of a militant deaf community, acting as jealous gatekeepers of what it really means to be deaf. A casual observer reading the story about Harvey could be forgiven for thinking that the deaf community, in America or elsewhere, is far more intolerant than it really is.

It would be more productive to ask how we can make things more accessible for deaf people, accounting for their needs and choices. Deafness is a spectrum, and our needs will vary. For some people, signing is a more accessible way of communicating than speaking. For others, speaking and lip-reading work for them.

Hearing people need to play their part in this. Practically, this can be something as small as not turning your back when speaking, or enunciating clearly to make lip-reading easier. But more fundamentally, it means a normative change in how deafness and deaf people are viewed. Deaf people are commonly seen as broken – in need of fixing. But with deafness can come a rich and vibrant language in sign, and a culture and community based on that.

Hearing people need to be sensitive to that fact when thinking about deafness. There are, for instance, endless videos on social media of deaf children given cochlear implants, hearing sounds for the first time, often shared by hearing people as inspirational modern-day miracles. Yet to many signing deaf people, they can represent something far more sinister: the absence of choice and the removal of deaf culture. The implicit message of such videos can be to underscore the supposed superiority of speech over sign.

However, we also need to be careful about how we refer to other people with hearing loss. To refer to someone as “oral” can be an insult – a way of denoting that someone isn’t truly deaf. But being born into a speaking family, and communicating by speaking doesn’t invalidate my deafness.

We don’t need to reductively frame this as a clash of communication. Deaf people, whether they choose to sign, to speak or both ought not be forced to pick sides. In moving beyond the dualism, we can focus on what matters: making a world that is accessible to everyone who is deaf, however they may experience that.

Josh Salisbury is a freelance journalist who writes about politics, disability and books

Dawn Butler stood up for deaf people. But we need more than gestures | Letters

The Labour MP Dawn Butler made an unprecedented contribution to parliament last week by asking a question in sign language (Why I stood up for British Sign Language in parliament, 17 March). Demonstrating so publicly that the views of deaf people should be represented in the Commons is a valuable act in itself.

However, the rights of deaf people do not simply start and end with a single signed question. Deaf children all too often fall behind their hearing peers in school because of insufficient support. Councils are cutting vital services that deaf children rely on. The government’s NHS reforms have left audiology services uninspected and unaccountable. And as Butler rightly points out, British Sign Language – an indigenous language that has been in use for centuries in this country – does not have its own legal status in Britain. So while it is an important step for deaf people to see BSL being adopted by our parliamentarians, it also shines a light on how much work lawmakers still have to do to support the deaf community in the UK.
Susan Daniels
CEO, National Deaf Children’s Society

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Make some noise about going deaf | Katharine Whitehorn

There’s no denying we all suffer in some way at some time and, except in the sense of choosing certain lifestyles, we are rarely able to choose our own ailments. Some of them we inherit, some we bring on ourselves because they go with a certain job or place.

But even if we could choose our ailments, we would not necessarily choose them appropriately.

Ask someone if they would prefer to lose their sight or their hearing and the chances are they would choose hearing, because it’s so easy to envisage the awfulness of blindness – being unable to read or see beautiful things, or horrid things you can bump into. You only have you put your hand over your eyes to feel helpless.

Having noise stop, on the other hand, is often very welcome. Even people who have lived near the deaf often have no idea how it cuts one off; what it’s like when even ordinary conversation isn’t possible.

My mother, who was totally deaf but good at lip-reading, was once when she was a widow taken out to dinner by one of my father’s ex-pupils. She looked forward to it very much, but the next day she said: “It was so disappointing. The restaurant was very dark, only candles and I couldn’t read a thing he said.”

This well-meaning, highly educated man simply didn’t realise he was making conversation impossible. Ears may not always be less precious than eyes, but all too often you need both, and I suppose it’s no pity that we can’t choose anyway.

What do you think? Have your say below

How auditory-verbal therapy is assisting deaf young children talk | Oren Gruenbaum

Campbell family audio-visual therapy

The Campbell family members are ‘passionate advocates of AVT for their daughter Alice and younger son Oliver. Photograph: David Levene for the Guardian

Being advised their daughter, Alice, had a unusual hearing disorder was devastating to Chris and Claire Campbell. Even much more upsetting was being told she may possibly need to have lifelong aid. Alice had been diagnosed with auditory neuropathy spectrum disorder (ANSD), a condition affecting how sound is transmitted from the inner ear to the brain and the potential to recognize speech. Alice, nonetheless, has confounded the audiologist’s prediction: she is at a mainstream school and learning music alongside other 6-12 months-olds, and has language abilities past what is regarded “age-proper” for a hearing-impaired kid.

Her parents put this success down to auditory-verbal therapy (AVT). Alice started AVT right after she was fitted with a cochlear implant – a little electronic device that provides a sense of sound to a particular person who is profoundly deaf. AVT is an intensive perform-primarily based technique utilizing residual hearing to pick up speech sounds for finding out spoken language.

According to a 2008 study of 37 deaf young children, AVT raised the language abilities of 80% of them to individuals of their hearing peers by the time they commenced school. Advocates argue that it also assists children’s social and emotional improvement.

AVT has been pioneered in the United kingdom by charity, AVUK, which aided both Alice and her younger brother Oliver. The Campbells are passionate advocates of AVT, charting their daughter’s hearing reduction in the weblog Alice’s Ears, which has grow to be a resource for mothers and fathers globally.

“What surprised us was the minimal expectations the specialist local community had,” says Claire. Chris adds: “I will not think our hopes are any diverse for Alice and Olly than for their older [hearing] brother, Joseph.”

Since 2001, babies have been routinely screened by the NHS for hearing loss, which has aided detect issues far earlier. Whilst this has permitted cochlear implants to be fitted to younger young children on the NHS, it has unveiled the shortage of skilled speech therapists.

“When you have received the early diagnosis, what are you putting in area?”, asks Anita Grover, chief executive of AVUK. “There is a small window when you can make a important impact. If you do not carry on to speak to your kid, which several mothers and fathers will not, you are not retaining that technique alive.”

She would like to see AVT turn out to be as regimen in the NHS as screening babies’ hearing. However there is still resistance, she says, with families being informed by speech therapists and teachers of deaf young children to choose among signal language, AVT or a “total communication” approach, in which speech, signing and writing are produced alongside every other.

The Royal College of Speech and Language Therapists (RCSLT) and the British Deaf Association the two advertise the use of sign language. In a statement the RCSLT mentioned that signing is “entirely satisfactory and available”. David Buxton, chief executive of the BDA, says: “Deaf youngsters who talk orally (as opposed to utilizing indicator language) were assessed [in a examine] and the results showed that these deaf young children had extreme reading through troubles and in some instances had been a lot more significant than issues faced by hearing young children with dyslexia.”

Sapna Sharma was suggested to carry up her son with British Sign Language. “It was quite challenging. You assume music, conversation, laughter, birdsong won’t be part of his planet,” she says. “We did plenty of study and came across parents’ testimony [about AVT]. We have been impressed.”

She says that soon after utilizing AVT, Josh, 4, is catching up. “He is got into mainstream college, which we’re very proud of.”

But a lot of deaf folks stay opposed to implants. Deaf activists in the US argue that integrating hearing-impaired young children into mainstream schooling amounts to “cultural genocide”.

Grover understands their issues: “If you select the technologies, you are creating a future choice for your child. It’s about parental choice.”

In the United kingdom, the place AVT was only launched just over 10 many years in the past, speech therapists’ attitudes are gradually modifying. AVUK now runs a group for practitioners through the RCSLT. “We are absolutely sensing a culture shift,” says Grover.

AVUK charges about £15,000 a year for three years’ therapy. But fundraising has permitted just more than half the one,000 households it has supported to get cost-free therapy. Says Grover: “This is about receiving the ideal achievable end result for disadvantaged kids, transforming their odds.”

Deaf girl describes hearing for the 1st time

Joanna Milne was filmed by her mother as health care employees activated her cochlear implants, enabling to hear sound for the first time in her lifestyle.

The moving video footage swiftly became a global news sensation, and right now she described as “so moving” the minute she heard the voice of a younger relative.

She mentioned her 5-12 months-previous niece had come up to her and asked: “Auntie Joanne, where’s the biscuit?”

“I just heard what she mentioned and it was just so sweet to hear a child’s voice,” she explained.

Ms Milne suffers from Usher Syndrome. The uncommon situation meant that not only was she profoundly deaf, but the situation also induced her eyesight to deteriorate to the level she was registered blind, meaning her new sensory capability is all the a lot more useful.

Profoundly deaf girl hears for initial time

“Hearing items for the very first time is so, so emotional, from the ping of a light switch to running water. I can’t cease crying.

“I can previously foresee how it really is going to be lifestyle altering and the implants will get better and greater above time, I am so so content.”

Ms Milne, who operates for charity Sense, mentioned she was now a lot a lot more aware of items about her, which was a huge help offered that she is also blind.

“I am also attempting to use the phone at one particular point but it’s 1 stage at a time as it truly is all so daunting. It is the little factors that are large existence shifting experiences to me correct now and this will possibly final a few months,” she mentioned.

“More than the final 48 hrs hearing somebody laughing behind me, the birds twittering and just getting with friends – they did not have to tap my arm or leg to get my consideration, which is a huge leap for a deaf man or woman.”

She thanked the team at the Midlands Implant Centre at the Queen Elizabeth Hospital, Birmingham, for the procedure and explained their support had been fantastic.

Source: Caters News Company / PA

Minute a deaf woman could hear for 1st time

Although she is nevertheless acquiring employed to her implants – even the rustle of a bag of crisps has “made her jump” – she hopes she will quickly be in a position to use a telephone and the factor she has looked forward to much more than anything at all else: the sound of music.

“Getting deaf was just who I was and I did not actually have any unfavorable ideas about my deafness, just the one point of missing out on music,” she mentioned. “I have usually wondered what it have to be like.”

She has been to concerts with buddies and enjoyed the environment, even although she could only pick up vibrations with the use of standard hearing aids now her buddies have chosen their favourite songs from each year of her life, ranging from Paul McCartney to Elbow, to give her a crash program on what she has missed.

Miss Milne, who operates for the charity Sense, underwent surgical treatment at the Midlands Implant Centre at the Queen Elizabeth Hospital, Birmingham. Cochlear implants, which were initial developed in the 1960s and have been given to more than 300,000 men and women considering that then, stimulate auditory nerves to make patients artificially hear noises.

Miss Milne’s implant has been doubly crucial to her, as the unusual Usher Syndrome that influences her hearing induced her to commence shedding her vision in her early 20s. She now has severe tunnel vision and is registered blind.

She said: “The switch-on was the most emotional and overwhelming encounter of my existence and I am still in shock now. The hearing globe sounds so loud and alien. The first day everyone sounded robotic and I have to find out to recognise what these sounds are as I create a sound library in my brain.

“I can already foresee how it truly is going to be life shifting and the implants will get much better and greater above time. I’m so, so satisfied.

“I’m hearing words without having lip-reading through currently new sounds like the Tannoy at a train station, my knife clinking my plate as I eat – even the rustle of a packet of crisps manufactured me jump!

“I’m attempting to use the telephone but it’s one particular step at a time as it really is all so challenging. It’s the tiny issues that are enormous daily life altering experiences to me right now and this will probably last a few months.

“Wearing hearing aids I could nonetheless hear some sounds which helped me be mindful of the atmosphere I was in. If I walked into a room exactly where a tv was on I would hear the noise but not what was becoming said.

“I recognise the vibrations but have never ever, ever heard the words to music.”

Her best buddy Jo Knight stated: “It will open her up to more experiences. We have been away collectively and been to see bands. Even although she could not hear them, she really appreciated the environment and vibe.

“Now when we go on days out she will be capable to hear the birds singing and her canine, Matt, barking.”