Latitude 2015: much more than music!

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The last music festival I went to was Glastonbury in 1997. I went camping with a group of friends and despite being covered in mud and not being able to have a shower all weekend, we had a fantastic time.

I was a lot younger then with a lot less responsibility and a bit more stupid! I’ll never forget my excitement at watching Radiohead and The Prodigy playing live to thousands of people and having a really great time.

But after I lost my hearing a few years ago, I couldn’t see any point in going to a festival anymore. I thought that if I can’t hear the music, it would never be the same again. I still had the memories of the bands and songs I loved in my head though even if I couldn’t hear them anymore.

Since I had my cochlear implant operation a year ago, I was wondering what it would be like to go to a festival and hear live music again. A friend of mine, Carole, then told me about Latitude Festival in Suffolk, which was held every July. She also told me that she would be involved in working with the BSL access at the event.

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The festival was made accessible for deaf and disabled people by the organisers, Festival Republic. Also a charity called ‘Attitude Is Everything’ were involved in making the festival accessible and inclusive.

As well as access rate tickets, there was an accessible camping area and volunteers there to support disabled people when needed, providing information and recharging points for mobile phones, cochlear implant batteries and wheelchairs. There were also accessible viewing platforms provided for disabled people and their PAs/carers to watch the performances.

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So, I decided to go there with my wife Joanna. It had been a long time since either of us had camped and we didn’t know what to expect. But we were well looked after right from the minute we arrived, with an accessible check-in area and disabled parking close to the camping area. Two friendly volunteers even carried our stuff for us and put our tents up!

Latitude Festival is set in the stunning Suffolk countryside with a beautiful lake, acres of wild woods and open fields with sheep painted bright pink especially for the festival! It is a much smaller festival than Glastonbury and it had a very creative, colourful vibe to it, with lots of different stages, bars and tents spread around the whole site, which took on a magical appearance at night.

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There was also a huge diversity of music, literature and performance art on offer. It had a really wacky, unpredictable feel to it. We often stumbled upon some really random, crazy stuff going on in the woods or by the lake. I loved it!

Some of the musical performances and comedy acts were interpreted into BSL. I saw a BSL interpreted performance of a live band playing on my first night, which was good, although I think it would have been better if the interpreter had been allowed on the main stage instead of on the viewing platform in the middle of the field. I also wish that there had been more BSL interpreted performances as they seemed to be quite limited.

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I enjoyed listening to the writer Hanif Kureishi reading out one of his entertaining short stories in the Literature tent, followed by a Q&A session with the audience there about creative writing. I have always enjoyed his novels and films ‘The Buddha of Suburbia’ and ‘My Beautiful Launderette’. The tent was packed with people but I was really disappointed to discover that the hearing loop there was not working so I had to rely on my cochlear implant. I managed to catch the gist of what he was saying but had to ask my wife to fill in the gaps.

It was also a shame that there was no speech-to-text reporting or captioning provided at Latitude at all for deaf and hard of hearing people. I think a talk like this and some of the live comedy shows would have been much more accessible with speech-to-text reporting, so I hope STAGETEXT will consider providing this access next year.

I was really looking forward to seeing The Charlatans, one of my all-time favourite Manchester bands. Well they definitely didn’t disappoint! I watched them from the viewing platform in the BBC Radio 6 music tent and they were fantastic. They played all their old songs and sounded just like I remembered them from twenty years ago!

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It was great to be amongst lots of disabled people in wheelchairs or mobility scooters all letting their hair down and enjoying themselves with their families, friends and PAs on the viewing platform.

My other musical highlight was watching The Vaccines play live on the Saturday night. This is a fairly new band I’d never heard before but they were fantastic! The atmosphere was electric in the music tent with the lead singer throwing himself frenetically around the stage and into the audience at one point. I could feel the energy and intensity of the band’s performance, as well as sense the vibrations of the drums and guitars from the viewing platform.

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One of the best things about the weekend for me was meeting lots of disabled people there, who were just enjoying themselves without having to worry about barriers to access or discriminatory attitudes from some other people. I met a great bunch of people and hope to keep in contact with some of them.

I was so glad I decided to go to another festival again after all these years. Latitude was brilliant! I don’t think I would have gone without the great access and support provided there though. The diversity and inclusion was great. I’m already looking forward to going back next year and will hopefully bring some more deaf friends with me too!

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Come and meet cochlear implant users

Cochlear implant candidates
It has been just over a year since I had my cochlear implant switched on. If has made a huge difference to my life, enabling me to hear much better and communicate without constantly struggling with my wife and family.

It has also given me much more confidence in social situations and family gatherings. Whereas before, I would make constant excuses about not going out and mixing with groups of people as I found it too frustrating and isolating, now I am going out again, meeting new people and attending social gatherings.

Having a cochlear implant is not a miracle cure for deafness and everyone’s experience of having one is different depending on your previous knowledge and perception of sound, among other things, but all I can say is that in my case it has been truly life-changing. I can now listen to music again, which I hadn’t been able to in years and I can use the phone again and speak to my family, which I hadn’t been able to do for about five years since I first started to lose my hearing.

I’ve recently become a cochlear implant mentor for AB, the company who made my cochlear implant. The idea of being a mentor is to meet with anyone considering having a cochlear implant and just to chat with them informally about anything they want to ask me about cochlear implants, whether it is the implantation process and what to expect after the switch-on, or what it is like now for me as a cochlear implant user.

We’re having one of these informal meet-ups soon on 8th August in London for potential cochlear implant candidates, so if you or someone else you know is a cochlear implant candidate, why don’t you come along? There’ll be a few of us there and we’ve all got our own personal experiences of being cochlear implant users. We’d love to see you there, have a chat with you and share our experiences with you.

When I was going through the cochlear implant assessment process, I spoke to quite a few cochlear implant users who talked about what it meant for them to have a cochlear implant and how it had changed their lives. I wish I had also had a mentor at the time to help talk me through it.

If you’re interested in coming along, please contact Ben Leigh from the advert above. We look forward to seeing you there!

My thoughts on Tom Shakespeare’s talk: “Can disabled people fly high?”

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We seem to live in a society with very polarised attitudes towards disabled people. On the one hand, disabled people are often told that they are “brave” or “inspirational”, even when they are just doing normal, everyday things non-disabled people take for granted. On the other hand, they are being stigmatised and labelled “scroungers” by a government increasingly determined to slash the welfare bill by driving through cuts to disability benefits and scrapping and limiting funds designed to enable disabled people to work, study and lead independent lives.

I recently went to a fascinating talk by Tom Shakespeare, the academic, disability rights campaigner and sociologist, who explored these themes about social attitudes towards disability and why some disabled people become high achievers, but so many others don’t.

When I first read the title of his talk “Can disabled people fly high? Removing barriers to achievement”, I must admit that I thought that it sounded a bit cheesy. But I wanted to find out more. I have heard Tom Shakespeare speak before about disability and I have found him really insightful and knowledgeable about the subject.

I had spoken to the organisers at the London School of Hygiene & Tropical Medicine beforehand about what communication support they could provide. I am really grateful to them and STAGETEXT for being able to provide live speech-to-text reporting of the event at the last minute, as well as providing a BSL interpreter. It meant that the event was fully inclusive to all deaf and hard of hearing people, including non-BSL users like myself.

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Tom spoke about a lot of areas related to the social and medical models of disability, as well as barriers to achievement and what makes a successful disabled “high flyer”. I just want to focus on a couple of things he said which I could really identify with and which really seemed to resonate with me as a deafened person living with a disability myself.

He spoke about disability being diverse and complex. Disabled people are not alike and they differ in many ways. Even people with the same disability or medical condition do not have the same experience of it and often react to it in different ways. We cannot compare “apples with pears” so we shouldn’t generalise and make assumptions about different people living with a similar disability.

He explained that this is why the work capability assessments introduced by the Department of Work and Pensions do not work because they make assessments about disabled peoples’ capability to work based on general assumptions and criteria, which don’t match their individual complex medical and social care needs.

He also talked about the “paradox of disability”, which I can really relate to. When you first get an impairment or disability, especially if it’s unexpected, it’s understandably very difficult for most people to deal with it. Unsurprisingly, you feel really depressed and people often find themselves having panicky, suicidal thoughts. You think that life couldn’t possibly get any worse and go through a whole spectrum of emotions, just as if you are going through a grieving process.

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Then you get used to it and after a while, you find that living with it is not as bad as you thought it would be. Human beings are incredibly resilient and you often adapt pretty well to your new disability and changed circumstances. He said that according to academic studies, most people with a disability report a “high quality of life” against the odds, as long as you are not living in constant pain.

I can definitely relate to this and think that although I went through a very difficult time in my life when I lost my hearing unexpectedly, eventually I learned to adapt to it, although it was very difficult to communicate with other people.

Now I think my life has changed to such an extent that there have been a lot of positive things, which have come out of my experience. I have met some really great people along my journey, have changed a lot as a person and I am now looking forward to the future with renewed positivity and confidence.

Tom also talked about the common factors, which tend to make a disabled person become a ‘high flyer’. Having a good education was a big factor, according to his research. But the other common factor driving the success of disabled high achievers was they had worked incredibly hard to get there. They have struggled so hard against the odds that they are more determined than anyone else to make it.

For example, look at the hugely successful Paralympic athletes. These are clearly exceptional people, who have pushed themselves beyond their limits and exceeded everyone’s expectations of them. They are incredibly positive role models for disabled people. But are their achievements also achievable for the majority of disabled people? Do non-disabled people think all disabled people should be more like these role models?

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Tom said that the majority of disabled people, like non-disabled people, just want to lead ordinary lives. They just want to have a normal job, a family and all the things that non-disabled people want too. ‘

We need to recognise that ‘high flyers’ are exceptional people in any walk of life, whether disabled or non-disabled people. They do not represent the majority of people like us in our society.

He also talked about how disabled people are often told by non-disabled people that they are “brave” or “inspirational” etc., often just for doing normal everyday things that most people take for granted like getting dressed. This can come across as being incredibly patronising to a disabled person, when all they want is to be accepted by people and treated no different to anyone else.

On the other hand, I do think that some disabled people do some incredibly inspiring things and I am truly in awe of them. I don’t think that most non-disabled people mean to sound patronising at all. They just can’t imagine themselves doing the things disabled people are doing, if they were in their shoes. The problem is when they praise disabled people for doing normal things that they themselves take for granted. They should just treat disabled people as they would others.

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What about the barriers to achievement for disabled people? Tom talked about some of the external barriers to achievement, such as society’s attitudes towards disabled people and barriers to employment. According to government figures, 48% of disabled people are in employment, compared to 79% of non-disabled people. But the gap between the employment rate of disabled people versus non-disabled people has remained static, at around 31%, for over a decade.

It is clearly more difficult for a disabled person to become employed than a non-disabled person but the reasons for it are complex. Employers’ attitudes towards disabled people during the recruitment process remain a huge barrier, despite the existence of the Equalities Act. But Tom also said that there were also internal barriers holding disabled people back. This is due to psychosocial factors such as a lack of confidence in themselves or a doubt that they could actually do the job, despite having the necessary qualifications and experience.

Disabled people also don’t push themselves when it comes to seeking a promotion or a better skilled job. They often stay in low skilled, lower grade jobs. This is because they feel comfortable and accepted in the work environment they are in, so they don’t want to risk a new environment where others might not be so accepting of them and their disability.

During the Q&A session at the end I asked Tom what he thought about the impact of the government’s recent cuts to communication support for deaf people on the ‘Access to Work’ scheme. He replied that it was a “no brainer”. By limiting deaf people’s access to the communication support they need to carry out their jobs, it is obvious that they wouldn’t be able to do their jobs in the same way. It would reduce their chances of being successful in their careers and increase unemployment among deaf and disabled people. He said he thought the government’s decision was “blinkered”.

Overall, I agree with Tom that in terms of how and why some disabled people reach their potential and achieve great things and others don’t, we can’t just blame it all on external factors such as society and employers’ attitudes towards them. It’s a complex situation. To put it in his words “We need to strike a balance between recognising the role of oppressive barriers and celebrating individual personal qualities”.

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Running for Sound Seekers

My wife Joanna will be running in the Vitality British London 10K run through Central London next Sunday, 12th July. She’s really looking forward to it and has been training hard, not only because she will be running with thousands of people past iconic London landmarks such as Big Ben, The Houses of Parliament, St Paul’s Cathedral and Buckingham Palace, but also because she hopes to raise money for a really fantastic charity, which we both love to support.

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It’s a small UK-based charity called Sound Seekers, but the work they do makes a huge difference to people’s lives. They help deaf people, particularly children, in the poorest communities of the developing world, particularly Africa.

Deaf children in Africa haven’t got access to the services that we take for granted in the UK such as a good education, the provision of hearing aids and cochlear implants on the NHS and access to audiology and free basic healthcare. For instance, in Zambia, one of the countries where Sound Seekers have been working, there is only one trained audiologist in the entire country, which has a population of 16 million people.

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With over 50% of the population living in poverty there, there is no money and little incentive to provide deaf children with the help that they need to get an education, stop them feeling socially isolated and unable to communicate with others, improve their life chances and employment prospects. Most of them end up being the poorest and most disadvantaged in their society.

But also, people living in Africa are much more likely to be deaf or have a hearing loss than in developed countries like ours because they are much more likely to have ear infections and health conditions, which go untreated. This often leads to significant hearing loss and deafness. According to the World Health Organisation (WHO) up to 50% of hearing loss cases could be prevented, and many very early on, through early hearing screening and basic ear and healthcare.

Sound Seekers works in many areas to tackle these issues. They partner with hospitals, usually government hospitals, to develop audiology services in many African countries. They also partner with schools for the deaf to provide specialist teacher training and sign language training, as well as upgrading their teaching facilities and the infrastructure.

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They also work with mainstream schools to train teachers on deaf awareness and what they should do if they suspect a child in their class has hearing loss, to avoid them dropping out of school altogether.

They have introduced targeted paediatric hearing screening services in Sierra Leone and Zambia, and they have a new project in Zambia on primary ear and healthcare, aimed at trying to prevent ear infections and conditions leading to permanent hearing loss.

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One country where they have done a lot of work is Malawi. They launched their ‘Hear in Malawi’ fundraising appeal and project last year with the help of Sam Evans, a former ‘Big Brother’ contestant, who has been involved in filming their project. Through their fundraising, they are currently building a comprehensive audiology unit in Blantire, Malawi, with the building of the clinic already underway.

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Dr Courtney Caron, a qualified audiologist from America, is volunteering in Blantire for four years and is apparently brilliant. She and her team have already helped many deaf children there such as Happy, who you can see in the photo below. Happy is a ten-year old boy, who lost his hearing three years ago. He was bullied at school and felt completely isolated as a result of his hearing loss. He remained in the same class at school for three years.

Dr Caron recently fitted him with two donated hearing aids. From being really withdrawn, Happy now feels much happier and more confident in himself. He has even moved up a year in school. They hope to help thousands more Happys in the work that they’re doing out there.

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Dr Caron and her team have also managed to bring about the first two successful cochear implant operations in Malawi carried out by the British cochlear implant surgeon Dr David Strachan last year. Joyce, a nine-year old girl, and fifteen-year old Richard, both became profoundly deaf a few years ago as a result of illness. In Malawi no surgeon is trained to carry out a cochlear implant operation and the children’s parents couldn’t possibly have afforded it anyway, so it was really great that MED-EL (the company which makes the cochlear implant devices) donated the cochlear implants and Dr Strachan agreed to carry out the operations.

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They wouldn’t have agreed to it if they hadn’t been convinced that Dr Caron and her team would give Richard and Joyce all the rehabilitative support they needed both before and after the operation and switch-on.

I was pleased to hear that Joyce and Richard’s cochlear implant surgeries went really well and that they are both now hearing much better and getting used to their new hearing environment. I am really pleased for them both and wish them both well. It’s wonderful for them to have been the first people in their country to have this life-changing surgery.

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It’s really important that the projects Sound Seekers are involved in are sustainable and support the local communities there. That’s why capacity building of African people is at the charity’s core. Wherever possible, they delegate project administration to local people, providing employment opportunities. Examples are training existing nurses in Cameroon, The Gambia and Zambia to provide audiology services, providing them with equipment and using volunteer audiologists from the UK and abroad to help train them. They are also supporting Dr Alfred Mwamba (the only audiologist in Zambia) to set up a diploma training course for local people in audiology in Lusaka, Zambia.

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It is really important that everyone living with hearing loss throughout the world has equal access to the same basic standards of education, healthcare and audiology that we take for granted here. That reality may seem a long way off but I think that the work that Sound Seekers is doing in Africa is helping enormously. As a small charity, though, they rely on our support and donations to keep it going and develop it further, helping to lift people out of poverty and isolation, as well as providing local training and employment opportunities.

It would be really wonderful if you could help support their work by donating whatever you can via my wife’s online fundraising page (link below). We would really appreciate it a lot. As for me, I’ll be there cheering her over the finish line!

Joanna’s fundraising page: http://bit.ly/1RmhoqA

Sound Seekers website: http://bit.ly/1LPqnST

Sound Seekers Twitter handle: @SoundSeekers

Thanks very much to Sound Seekers for permission for me to use their photos!