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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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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Tom Shakespeare on Enabling Equality: Label Jars Not People!

Last night I went to a very interesting talk at the British Library by Tom Shakespeare called ‘Enabling Equality’, which was made accessible via live speech-to-text reporting provided by STAGETEXT. This talk seemed to attract a lot of interest from several deaf and hard of hearing people who I know and some of us arranged to meet up beforehand.

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Tom Shakespeare is an academic, leading writer and activist against disability discrimination. He currently teaches at the University of East Anglia. Before that he worked for five years at the World Health Organisation.

Before I lost my hearing I was unaware of the concept of the social model versus the medical model of disability, because as a hearing person with a full-time job and fairly normal life, I suppose I had no reason to know about it as it didn’t affect me personally. But over the last four years I have felt increasingly aware of the way that society views disability, whether through barriers to access and exclusion, discrimination, lack of employment opportunities or the way that society views disabled people in general.

Tom talked about what the social model of disability means, how it came about and how it has evolved over the years. The original idea came from a group of “organic intellectuals” of disabled people. They didn’t come from the ivory towers of academia, but they witnessed the oppression and daily struggle of disabled people through their own eyes. They came up with the idea that it was society which disabled people, not the disability itself. In 1970 these people gathered together for talks at Le Court Cheshire Home in Hampshire. Many of the key ideas, which formed the disability rights movement, came from this meeting and they formed “The Union of Physically Impaired against Segregation”.

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Many books about the oppression of disabled people by society have been written since this time, and many sociological researchers have carried out academic studies of the social model of disability. In Britain in 1991 Colin Barnes wrote an influential book on social policy and discrimination against disabled people. This book was critical in getting disability discrimination passed, but it wasn’t until 1995 that the legislation actually came into law, despite years of lobbying by disability rights campaigners.

In 2006, a major global treaty, the “United Nations Convention on the Rights of Persons with Disabilities” was signed by over 150 countries, including the UK, and then in 2010 the Equalities Act was introduced in the UK, which includes requirements that “reasonable adjustments” must be made to ensure that disabled people are not put at a disadvantage to non-disabled people.

The idea of the medical model is that disability is caused by the physical impairment itself, and that physical limitations are what disables the individual, not society. This model focuses more on the individual’s limitations and looking at ways of reducing those impairments or using technology to adapt them to society.

He then asked how we should think about disability. Should we think of it in terms of the medical model, the social model, or both? He said that although it is entirely right that disabled people should have the same rights to equality as any other minority group, the solution is much more complex.

In his own research among disabled people the results show that they believe they are disabled by society and their own bodies. He believes it is not enough to have a level playing field in terms of employment opportunities and access to public services and the NHS etc. because disability is very diverse. The needs of the individual disabled person and their physical limitations must be taken into account and support given accordingly.

For example, people with severe learning disabilities may not be able to work at all, and they must be supported through the social security system. But there are many others with various physical limitations and they may be able to work part-time as long as the correct adaptations are made in their workplace. The equality legislation framework needs to be there, but they also need support and considerations of their physical limitations.

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I thought Tom spoke a lot of common sense. For instance, I want to be treated equally and I do not consider myself disabled. But I often feel disabled by society because barriers to normal communication and access are put in my way. When I feel most empowered and confident it is because these barriers have been removed and the appropriate communication support has been provided for me. But I also know that I have physical limitations and suffer badly from tinnitus and exhaustion when I have to concentrate for long periods of time on trying to lipread people and following their conversations.

However, despite anti-discrimination legislation being in place, we still have a long way to go to reach equality. He painted a pretty depressing picture of disabled people in employment in Britain, for instance, and those on benefits and low incomes. They are still 50% more likely to be unemployed than non-disabled people. Even for those in work, they are much more likely to be in low-skilled jobs on the lowest salaries and they face a glass ceiling, not being promoted or being willing to risk moving to another job for fear of not being accepted by their new work colleagues.

Also, under this government, many disabled people working in the public sector have lost their jobs due to major cuts and austerity measures. In the private sector, the situation is much worse with many companies still not employing any disabled people, even though many of them have the same educational qualifications as non-disabled people. Furthermore, they have been the hardest hit with benefit cuts and the introduction of the bedroom tax.

He also talked about labelling. In general, we now consider the labeling of disabled people to be a bad thing, as it often creates divisions and barriers, leading to feelings of exclusion and a “them and us” mentality. He mentioned how disabled people, who have a growth impairment like him, are often labelled, stared at, harassed or bullied. Some are campaigning as they want to be treated as individuals, just like anyone else. I loved the photo of the disabled person wearing the T-shirt against labeling. I really want one of those T-shirts!

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It was interesting, though, that he thought that sometimes labelling is actually helpful, like when someone has a major health problem and is waiting for a diagnosis, which inevitably creates fear and uncertainty. The diagnosis, then, which is a label, finally puts an end to the uncertainty and provides hope for a possible treatment or cure.

After the talk, there was an interesting Q&A session with the audience. Somebody asked about how Tom reconciles equal treatment with cultural beliefs about disability. He said we should recognise that to be human is to be frail. If we acknowledge that as human beings we are all vulnerable and frail, then we avoid typecasting disabled people as the only incapable, frail ones.

A deaf man in the audience commented that disabled people seem to be going backwards in terms of equality and anti-discrimination compared to other minority groups. He asked how we could enable and empower people to gain full equality in society. Tom answered that the problem is that different social movements and disability groups have different aims, so it is difficult to campaign with a single voice when they are so fragmented. The only way forward, he said, is to keep campaigning and raising awareness. You have to fight for it, which is not easy, but progress is constantly being made.

Afterwards, I went with a group of friends for a pizza nearby. We had a chat about the talk in a lovely relaxed environment. Going to accessible talks and events like this make me feel empowered and positive. Label jars not people!

@RichardTurner

http://www.ididadventure.co.uk/

 

 

My Discovery of Access and Human Rights

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I never really thought about human rights issues or equality before I lost my hearing. I didn’t think these issues affected me personally. My life then revolved around making money, watching football, going to the pub and socialising with my friends and family.

But then I lost most of my hearing and my whole life changed. I suddenly saw things from a different perspective, and many things that I took for granted no longer seemed accessible to me. It wasn’t just the obvious things, like not being able to make a simple phone call anymore, but also things that never would have occurred to me such as not being able to go to the cinema or theatre spontaneously anymore and not being able to go to hospital appointments on my own without taking someone with me. Without them I couldn’t understand what the doctors were saying to me and most of the staff there didn’t have any deaf awareness. Daily problems accessing public services have caused me real stress and frustration.

Through my voluntary work in my local community I became interested in learning more about social care. I did a course in Health & Social Care at the City Lit in London, which was excellent. It was so refreshing because of the good access, which is so important. They provided me with two electronic note-takers in the class to help me follow it and gave me the access I needed. The tutor Rebecca and the electronic note-takers Fiona and Anita were very supportive.  This is an example of equality and inclusion done at its best and I felt equal to the other students in the class.

On the course I learned about equality legislation in social care, which was directly related to my voluntary work. It really opened my eyes to how important it is to understand how equality and access affect our everyday lives. It is also about respecting other people’s values and rights, and how diversity and tolerance of other people’s differences are essential to a better functioning society.

It led me to thinking more about our basic human rights and how they affect us all, so I wanted to learn more. I saw on Twitter that there was a one-day introductory workshop last week on human rights run by the British Institute of Human Rights (BIHR). My wife called them up to ask about arrangements for communication support for me and they told her that they would arrange an electronic note-taker to support me. I was delighted to hear this and really excited about doing the workshop, as I wouldn’t have been able to do it without this support.

There was a mixture of people on the workshop from different backgrounds, but I was the only deaf person there. It was really interesting to learn about what human rights are, how they are the building blocks of a healthy democracy, what the legislation on human rights is about and how it is enforced on governments, which abuse their powers and deny people their basic human rights throughout the world.

I learned about the evolution of Human Rights legislation since its introduction after the Second World War, how it is applied in practice and how it affects all of us in our everyday lives. It was fascinating to learn about a subject which is so fundamental to our everyday lives, but which I knew very little about before.

I learned that human rights are universal protections for everyone and serve as a safety net for us all. In the UK we are protected by 16 fundamental rights in the Human Rights Act, which cover many different aspects of our lives. Human rights relate to the relationship between the State and individuals. Our society hands power to the government to make decisions for us and human rights are there for when it goes wrong, as it has done many times in history, such as during the Holocaust, and even now with the terrible situation going on in Syria.

One of the most interesting things I learned was that the Human Rights Act relates to all levels of government and public services provided, for instance the police force, local government, the courts and the NHS, as well as voluntary and community sector organisations. The situation becomes complex when private organisations provide a public service, for instance when a local authority hands over the operating of a care home to a private company or a charity or a voluntary organisation provides a public service. The net has been spread wide in the Human Rights Act so that any body or organisation, which delivers public services, is included in it.

The Human Rights Act is meant to act as a floor for basic human rights and freedoms, but it works in conjunction with other UK legislation, which is more detailed and specific, such as the Equality Act 2010, which includes legislation on disability discrimination, and the duty to make reasonable adjustments where a disabled person is put at a substantial disadvantage. All these laws are meant to be compatible with each other and work alongside each other.

I was so glad I did this workshop. The communication support provided by Simon, my electronic note-taker, and the BIHR, made it fully accessible to me so that I felt included and equal to the other people in the class. It made me realise that all too often there are instances where both public and private organisations are not taking their duties and responsibilities towards deaf and disabled people seriously and not providing us with the proper access to services that we need. In some cases they are actually breaching people’s human rights, such as the right to be treated with dignity.

I intend to do more accessible courses and workshops like the ones run by the BIHR. I want to learn more about how equality and human rights issues affect us all. This is particularly relevant to people with a hearing loss, as with any disability. I’d like to see more deaf and hard of hearing people attend these courses with good communication support. You learn a lot from them and they make you feel much more empowered and aware of your access and equality rights in an inclusive society. 

You can find out more about the British Institute of Human Rights (BIHR) and their training courses via their website http://www.bihr.org.uk and follow them on Twitter via @BIHRhumanrights