Tag Archives: feel

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.

[embedded content]

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.”

My mental illness has always affected my work, but at last I feel supported

With public support from figures like Prince William and Prince Harry, there is a growing public acknowledgement that mental illness is nothing to be ashamed of. But it doesn’t always feel that way. Even in the charity sector, mental health conditions aren’t often well understood.

That’s despite the evidence that they are becoming more common. According to the mental health charity Mind, one in four people experience a mental health issue each year. In other words, up to a quarter of the voluntary sector workforce may be affected. Many people – regardless of their profession – deal with their mental illness behind closed doors, afraid that talking about it with their manager or colleagues could put their career at risk.

Certainly, this is how I was made to feel. I have been diagnosed with bipolar disorder, with emotional instability personality disorder, and faced extreme mood swings. The first psychiatrist I saw told me I’d never be well enough to live “a normal life”. He was one in a long line of people who told me not to expect too much from my career. I was young, my confidence was low and, naturally, I started to believe they were right. But I wanted so much to live an independent life.

When I started working – first in retail and then sales – life was very difficult. I tried to be honest and talk to my manager early on but his reaction stunned me: “Everyone gets sad,” he said. He didn’t give me any additional support and expected me to pull myself together. My colleagues also didn’t understand and began to comment on the amount of time I had to take off. They started calling me “sick notes”.


My colleagues didn’t understand and ​​began to comment on the amount of time I had to take off

Working in this environment inevitably worsened my condition and I was signed off work for about six months. I felt shaken by the experience and it was incredibly hard to build up my confidence to the point where I felt ready to give work another shot. Eventually I did, but when I took on another sales role with a different company, the same thing happened.

Having spent some time volunteering for Rethink, I applied for a position in the charity sector with HOME Fundraising. I knew that knocking on people’s doors to collect money for charity wasn’t going to be easy, but I wanted to do something positive at work.

I had intended to keep my concerns about my mental health to myself but found the culture was entirely different. At the start of my second week, I had severe anxiety and had to take a day off. Rather than the usual brush-off I’d experienced from past managers, my manager asked questions and sounded as if he cared.

From the start I was encouraged to share how I was feeling and to take time off when I needed to. I’m able to talk about changes in my mood and medication, and my line manager and I plan coping strategies together. I also get plenty of support from my team. They know if I say I need to go off for a few minutes that I just need a bit of space. It’s made a huge difference to what I feel I can achieve.

This doesn’t mean that life is easy. Mental health will always be a big part of my life and impact on my work. At times, depression can get the better of me and I have to work from home or in a quiet room at the back of the office. Manic episodes can also be hard to deal with, and I have to make an effort to slow down when talking, especially when discussing charitable beneficiaries. But I don’t have to brush my symptoms under the carpet. That is such a relief.

Mental health is a daily battle for many, but it shouldn’t define us. Being able to do my job – and being recognised for being good at it – has given me confidence to develop a career in fundraising. I’ve been promoted and now manage teams of fundraisers in Norwich.

All employers have a responsibility to make that a possibility for people living with mental health conditions. They need to prioritise creating a culture of understanding that provides support, rather than focusing on limitations. Until that’s commonplace, many people will never reach their potential. And that would be a waste of the huge amount of talent that makes our sector a diverse, creative and wonderful place to work.

  • Fran Holland is the deputy fundraising manager of HOME Fundraising’s Norwich office

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What does the cold virus get in return for making its host feel grotty | Notes and queries

What does the cold virus that I’m carrying get in return for making me, its host, feel grotty? Are there any viruses that can improve human wellbeing?

Robin Tebbutt, Monmouthshire

Post your answers – and new questions – below or email them to nq@theguardian.com

What does the cold virus get in return for making its host feel grotty | Notes and queries

What does the cold virus that I’m carrying get in return for making me, its host, feel grotty? Are there any viruses that can improve human wellbeing?

Robin Tebbutt, Monmouthshire

Post your answers – and new questions – below or email them to nq@theguardian.com

What does the cold virus get in return for making its host feel grotty | Notes and queries

What does the cold virus that I’m carrying get in return for making me, its host, feel grotty? Are there any viruses that can improve human wellbeing?

Robin Tebbutt, Monmouthshire

Post your answers – and new questions – below or email them to nq@theguardian.com

What does the cold virus get in return for making its host feel grotty | Notes and queries

What does the cold virus that I’m carrying get in return for making me, its host, feel grotty? Are there any viruses that can improve human wellbeing?

Robin Tebbutt, Monmouthshire

Post your answers – and new questions – below or email them to nq@theguardian.com

As a GP I feel increasingly burnt out, but the buck always stops with me | Dr Lucy Carter

It’s 6.15am on a Sunday and I am up early and in front of the computer again. I spent yesterday filing 150 letters when my son wanted to play football and the older one wanted go climbing.

I can’t remember the last time I had a lie-in. It’s not because the kids or the cats wake up early for breakfast, it’s because I am working from home, logging in to my GP computer system, looking at patient notes.

When I started 20 years ago in hospital the volume of work surrounding every encounter with a patient was relatively limited. True, the hours were horrendous but the patients seemed to have more straightforward needs, there was less demand for referrals or tests and there was a team around you.

Now I face filing another 50 letters, a similar number of blood results, adjustments to patients’ medication; I have a to-do list that is ever growing.

Cancer referrals have to be done the same day, social services want more and more information for children protection reports. I worry if we miss noticing that one odd consultation between parent and child, or unusual injury, we could be held accountable if something subsequently happens to that child. So you feel you have to get it right all the time – an impossible task.

It feels like half of my consultations are about PIP [personal independence payment] appeals and “… can you write another letter to support me, doc?”. Every patient encounter produces at least three pieces of work.

I have often said the job can be so fulfilling. Patients are remarkable, their narrative and the adversity they face physically and mentally constantly surprises me. It is the reason I stay in general practice.

But increasingly I feel almost burnt out. I resent being at work for 12- to 14-hour days, not seeing my children through the week, constantly rushing to pick them up when I can, but always distracted by “one more referral to do”.

I have reduced my hours after having children, but being a GP partner, becoming more senior, means the workload stays the same, and if your colleagues go on holiday the work doubles.

I don’t believe it is just my practice that experiences this problem. I speak to many colleagues, both male and female, in London and beyond who are shocked by the sheer volume of work, never mind patient interactions, when they qualify. As a result, new GPs are resisting partnership, working as locums with fewer hours to try to take control.

As we move towards more inter-professional working, with nurse healthcare assistants taking on more responsibility, the buck always stops with the GP.

I often wake in the night, jaw hurting from grinding my teeth, remembering a blood result or letter to write or realising I should have spoken to the hospital about a patient.

It’s a fine tightrope between being a good GP and a complaint coming your way because you didn’t quite pay enough attention. Complaints are par for the course realistically, but when you get one you question your ability to be a doctor.

It can be devastating, particularly if the patients write to the General Medical Council. Doctors know how little support they get during the GMC complaints process. I think what is forgotten is that GPs are human and also need support.

The government has to take some responsibility for placing unrealistic expectations on GPs. The newspapers have to stop being so negative, thinking we all earn more than £100,000, never do any out-of-hours and close the practices for half days for our own pleasure. I would like Jeremy Hunt [the health secretary] or Simon Stevens [the NHS chief executive] to come to my practice to sit with me and be a fly on the wall for a week.

At times I think about quitting medicine. When you dread getting up, dread the days ahead and never see your family.

I don’t think this way of working is sustainable for another 20 years.

As a GP I feel increasingly burnt out, but the buck always stops with me | Dr Lucy Carter

It’s 6.15am on a Sunday and I am up early and in front of the computer again. I spent yesterday filing 150 letters when my son wanted to play football and the older one wanted go climbing.

I can’t remember the last time I had a lie-in. It’s not because the kids or the cats wake up early for breakfast, it’s because I am working from home, logging in to my GP computer system, looking at patient notes.

When I started 20 years ago in hospital the volume of work surrounding every encounter with a patient was relatively limited. True, the hours were horrendous but the patients seemed to have more straightforward needs, there was less demand for referrals or tests and there was a team around you.

Now I face filing another 50 letters, a similar number of blood results, adjustments to patients’ medication; I have a to-do list that is ever growing.

Cancer referrals have to be done the same day, social services want more and more information for children protection reports. I worry if we miss noticing that one odd consultation between parent and child, or unusual injury, we could be held accountable if something subsequently happens to that child. So you feel you have to get it right all the time – an impossible task.

It feels like half of my consultations are about PIP [personal independence payment] appeals and “… can you write another letter to support me, doc?”. Every patient encounter produces at least three pieces of work.

I have often said the job can be so fulfilling. Patients are remarkable, their narrative and the adversity they face physically and mentally constantly surprises me. It is the reason I stay in general practice.

But increasingly I feel almost burnt out. I resent being at work for 12- to 14-hour days, not seeing my children through the week, constantly rushing to pick them up when I can, but always distracted by “one more referral to do”.

I have reduced my hours after having children, but being a GP partner, becoming more senior, means the workload stays the same, and if your colleagues go on holiday the work doubles.

I don’t believe it is just my practice that experiences this problem. I speak to many colleagues, both male and female, in London and beyond who are shocked by the sheer volume of work, never mind patient interactions, when they qualify. As a result, new GPs are resisting partnership, working as locums with fewer hours to try to take control.

As we move towards more inter-professional working, with nurse healthcare assistants taking on more responsibility, the buck always stops with the GP.

I often wake in the night, jaw hurting from grinding my teeth, remembering a blood result or letter to write or realising I should have spoken to the hospital about a patient.

It’s a fine tightrope between being a good GP and a complaint coming your way because you didn’t quite pay enough attention. Complaints are par for the course realistically, but when you get one you question your ability to be a doctor.

It can be devastating, particularly if the patients write to the General Medical Council. Doctors know how little support they get during the GMC complaints process. I think what is forgotten is that GPs are human and also need support.

The government has to take some responsibility for placing unrealistic expectations on GPs. The newspapers have to stop being so negative, thinking we all earn more than £100,000, never do any out-of-hours and close the practices for half days for our own pleasure. I would like Jeremy Hunt [the health secretary] or Simon Stevens [the NHS chief executive] to come to my practice to sit with me and be a fly on the wall for a week.

At times I think about quitting medicine. When you dread getting up, dread the days ahead and never see your family.

I don’t think this way of working is sustainable for another 20 years.

As a GP I feel increasingly burnt out, but the buck always stops with me | Dr Lucy Carter

It’s 6.15am on a Sunday and I am up early and in front of the computer again. I spent yesterday filing 150 letters when my son wanted to play football and the older one wanted go climbing.

I can’t remember the last time I had a lie-in. It’s not because the kids or the cats wake up early for breakfast, it’s because I am working from home, logging in to my GP computer system, looking at patient notes.

When I started 20 years ago in hospital the volume of work surrounding every encounter with a patient was relatively limited. True, the hours were horrendous but the patients seemed to have more straightforward needs, there was less demand for referrals or tests and there was a team around you.

Now I face filing another 50 letters, a similar number of blood results, adjustments to patients’ medication; I have a to-do list that is ever growing.

Cancer referrals have to be done the same day, social services want more and more information for children protection reports. I worry if we miss noticing that one odd consultation between parent and child, or unusual injury, we could be held accountable if something subsequently happens to that child. So you feel you have to get it right all the time – an impossible task.

It feels like half of my consultations are about PIP [personal independence payment] appeals and “… can you write another letter to support me, doc?”. Every patient encounter produces at least three pieces of work.

I have often said the job can be so fulfilling. Patients are remarkable, their narrative and the adversity they face physically and mentally constantly surprises me. It is the reason I stay in general practice.

But increasingly I feel almost burnt out. I resent being at work for 12- to 14-hour days, not seeing my children through the week, constantly rushing to pick them up when I can, but always distracted by “one more referral to do”.

I have reduced my hours after having children, but being a GP partner, becoming more senior, means the workload stays the same, and if your colleagues go on holiday the work doubles.

I don’t believe it is just my practice that experiences this problem. I speak to many colleagues, both male and female, in London and beyond who are shocked by the sheer volume of work, never mind patient interactions, when they qualify. As a result, new GPs are resisting partnership, working as locums with fewer hours to try to take control.

As we move towards more inter-professional working, with nurse healthcare assistants taking on more responsibility, the buck always stops with the GP.

I often wake in the night, jaw hurting from grinding my teeth, remembering a blood result or letter to write or realising I should have spoken to the hospital about a patient.

It’s a fine tightrope between being a good GP and a complaint coming your way because you didn’t quite pay enough attention. Complaints are par for the course realistically, but when you get one you question your ability to be a doctor.

It can be devastating, particularly if the patients write to the General Medical Council. Doctors know how little support they get during the GMC complaints process. I think what is forgotten is that GPs are human and also need support.

The government has to take some responsibility for placing unrealistic expectations on GPs. The newspapers have to stop being so negative, thinking we all earn more than £100,000, never do any out-of-hours and close the practices for half days for our own pleasure. I would like Jeremy Hunt [the health secretary] or Simon Stevens [the NHS chief executive] to come to my practice to sit with me and be a fly on the wall for a week.

At times I think about quitting medicine. When you dread getting up, dread the days ahead and never see your family.

I don’t think this way of working is sustainable for another 20 years.

As a GP I feel increasingly burnt out, but the buck always stops with me | Dr Lucy Carter

It’s 6.15am on a Sunday and I am up early and in front of the computer again. I spent yesterday filing 150 letters when my son wanted to play football and the older one wanted go climbing.

I can’t remember the last time I had a lie-in. It’s not because the kids or the cats wake up early for breakfast, it’s because I am working from home, logging in to my GP computer system, looking at patient notes.

When I started 20 years ago in hospital the volume of work surrounding every encounter with a patient was relatively limited. True, the hours were horrendous but the patients seemed to have more straightforward needs, there was less demand for referrals or tests and there was a team around you.

Now I face filing another 50 letters, a similar number of blood results, adjustments to patients’ medication; I have a to-do list that is ever growing.

Cancer referrals have to be done the same day, social services want more and more information for children protection reports. I worry if we miss noticing that one odd consultation between parent and child, or unusual injury, we could be held accountable if something subsequently happens to that child. So you feel you have to get it right all the time – an impossible task.

It feels like half of my consultations are about PIP [personal independence payment] appeals and “… can you write another letter to support me, doc?”. Every patient encounter produces at least three pieces of work.

I have often said the job can be so fulfilling. Patients are remarkable, their narrative and the adversity they face physically and mentally constantly surprises me. It is the reason I stay in general practice.

But increasingly I feel almost burnt out. I resent being at work for 12- to 14-hour days, not seeing my children through the week, constantly rushing to pick them up when I can, but always distracted by “one more referral to do”.

I have reduced my hours after having children, but being a GP partner, becoming more senior, means the workload stays the same, and if your colleagues go on holiday the work doubles.

I don’t believe it is just my practice that experiences this problem. I speak to many colleagues, both male and female, in London and beyond who are shocked by the sheer volume of work, never mind patient interactions, when they qualify. As a result, new GPs are resisting partnership, working as locums with fewer hours to try to take control.

As we move towards more inter-professional working, with nurse healthcare assistants taking on more responsibility, the buck always stops with the GP.

I often wake in the night, jaw hurting from grinding my teeth, remembering a blood result or letter to write or realising I should have spoken to the hospital about a patient.

It’s a fine tightrope between being a good GP and a complaint coming your way because you didn’t quite pay enough attention. Complaints are par for the course realistically, but when you get one you question your ability to be a doctor.

It can be devastating, particularly if the patients write to the General Medical Council. Doctors know how little support they get during the GMC complaints process. I think what is forgotten is that GPs are human and also need support.

The government has to take some responsibility for placing unrealistic expectations on GPs. The newspapers have to stop being so negative, thinking we all earn more than £100,000, never do any out-of-hours and close the practices for half days for our own pleasure. I would like Jeremy Hunt [the health secretary] or Simon Stevens [the NHS chief executive] to come to my practice to sit with me and be a fly on the wall for a week.

At times I think about quitting medicine. When you dread getting up, dread the days ahead and never see your family.

I don’t think this way of working is sustainable for another 20 years.