Time to act now on hearing loss

I felt honoured to be invited to the launch of Action on Hearing Loss’s ‘Hearing Matters’ report recently at the House of Commons. It was launched at a cross-party reception for MPs hosted by the MP Lillian Greenwood, a strong supporter of Action on Hearing Loss and advocate of their ‘SubtitleIt!’ campaign.

Lilian Greenwood

It was great to meet other deaf and hard of hearing people there who I have connected with on social media and who share a passion for campaigning on important issues affecting our lives such as improving the provision and access of subtitled video-on demand and catch-up TV services and trying to reverse NHS hearing aid cuts. It was also great to meet Lilian Greenwood and have a really good chat to the Labour MP Steve McCabe.

There are still so many barriers to access for deaf and hard of hearing people to lots of different areas in society, as well as employment and education and continued discrimination. We need to keep raising awareness of these issues among the wider public and campaign to improve them if we are to make a difference and strive for equality and inclusion in society.

The ‘Hearing Matters’ report is an important report, which covers lots of different areas related to hearing loss. It highlights the fact that by 2035 there will be one in five of us living with some form of hearing loss compared to one in six now.

Steve McCabe

They highlight how important it is, therefore, for our national government to work together with local authorities to implement local, community-based action plans to support people living with hearing loss.

I think it is wonderful that deaf and hard of hearing people from around the country have come together and got involved in Action on Hearing Loss’s recent campaigns, such as the ‘SubtitleIt!’ campaign and the campaign against NHS hearing aid cuts in North Staffordshire. It is amazing what we can all achieve together when we feel passionate about a common cause and empowered to do something about it.

Action on Hearing Loss is also involved in carrying out lots of medical research on hearing loss and tinnitus. I am particularly interested in what they are doing with the cochlear implant manufacturer AB to improve cochlear implant technology. From my personal perspective as a deafened adult, I feel incredibly lucky to have received a cochlear implant last year. It has been truly life-changing for me!

Without it, I would not be able to communicate with my family and friends like I can now. It has also given me the confidence to find work and do the job I’m doing now, which I feel really passionate about.

As our society ages, the problem of age-related hearing loss among the over 65s will only get worse and we need to take action and address it now before it is too late. We need to have more health screening programmes for the over 65s. We also need to think in a holistic way about how we can provide more community-based projects to support people living with hearing loss.

Hear to Meet

For instance, I work on the ‘Hear to Help’ service in my local Borough of Redbridge, run by Action on Hearing Loss. We support people living with hearing loss in my local community by showing them, their carers and family members how to maintain and care for their NHS hearing aids and how to communicate effectively with someone with a hearing loss.

I used to be a volunteer on this service for over four years before I was employed by them and I have seen the numbers of people we see grow over those years. It is still mainly run by trained volunteers, many of whom are hearing aid users themselves. As well as running regular drop-in hearing aid clinics, we also visit people in their homes, care homes and hospitals in the community.

Many older people suffering from hearing loss feel vulnerable and socially isolated. They find the support we give them invaluable. We help them get better use out of their hearing aids when they may be reluctant to wear them because they are not used to them or they don’t know how to maintain them.

We often see the same clients coming back to us regularly and telling us how much better they feel since we have helped them with their hearing aid problems.

Most of the clients we see have moderate hearing loss and before they had their hearing aids, they were struggling to communicate with their family and friends and felt reluctant to leave the house and socialise with other people as they felt isolated and vulnerable, missing out on everyday conversations. I can see how much they have improved and gained in confidence after accessing our ‘Hear to Help’ clinics.

This is why it is so important that older people living with hearing loss feel supported in their local community and are not denied the basic hearing aids they need on the NHS. North Staffordshire Clinical Commissioning Group (CCG) has become the first CCG in the country to stop providing hearing aids to most people. Under the CCG’s new policy, people with mild hearing loss will no longer receive hearing aids and people with moderate hearing loss will have to pass an eligibility test to get them. Four other CCGs are proposing to follow in the steps of North Staffordshire, meaning the cuts could affect over 145,000 people.

Kate Green

These people have paid their national insurance all their lives and it is cruel that they are denied access to hearing aids when they really need them, which results in them being cut-off from their friends and family and excluded from society.

It is a very short-sighted approach, aimed at saving paltry amounts of money, but over the long-term it will end up costing our already overstretched NHS much more as a result of increased mental and physical health problems brought on by their untreated hearing loss, resulting in reduced wellbeing and a lower quality of life.

I really hope that more people read this important report and share it widely. We all need to take more action to improve equality and inclusion for deaf and hard of hearing people in our society.

Instead of cuts to funding and NHS hearing aid provision, we need more community-based support services and holistic approaches to stop more problems building up in the future as a result of not planning properly for our rapidly ageing population and adopting short-term thinking.

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Link to Action on Hearing Loss ‘Hearing Matters’ report:

http://www.actiononhearingloss.org.uk/supporting-you/policy-research-and-influencing/research/hearing-matters.aspx

 

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Dalai Lama at the O2: compassion and the foundation of wellbeing

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I never would have imagined myself going to see the Dalai Lama a while ago. If you had mentioned the idea to me even five years ago I’m sure I wouldn’t have been interested. I imagined the Dalai Lama as being a mystical, God-like person with a deep spirituality but far removed from my own world, much as the North Pole is from the South Pole.

Well no doubt he is living in a completely different world to me and that of most people I know but I think I have changed a lot as a person over the last five years and perhaps I have also become more open to new ways of thinking and being.

So when my stepbrother mentioned that the Dalai Lama was going to give a public talk at the O2 arena in London a few weeks ago and asked me if I wanted to go along with him, I immediately said yes. His talk was called ‘Compassion: The Foundation of Wellbeing’ and it was to be followed by a Q&A session with the audience afterwards. I was really looking forward to it.

When we arrived at the O2 that day, there were huge crowds of people queuing outside to get in. It was obviously a very popular event. When we took our seats, which were not far from the main stage, I looked around the arena and saw hundreds of people taking their places. It was absolutely packed.

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I used the hearing loop, which was excellent, and there was also a BSL interpreter signing at the side of the stage. The access would have been fully inclusive if they had also provided speech-to-text reporting, but I managed to follow it well with the hearing loop.

The stage looked beautiful and serene, with images of snow-capped Tibetan mountains being projected onto a screen in the background. After a very touching musical intro with a large group of Tibetan children dressed in brightly coloured traditional costumes and a musician serenading the Dalai Lama with Tibetan welcome songs, he began to address the audience.

Dalai Lama wih Tibetan children in O2

He talked about lots of different things but kept bringing it back to his key messages about how having compassion for others will make you happier and enjoy better health.

He described how there are seven billion people in the world, each facing their own personal emotional and physical difficulties. He said that despite differences due to culture, race, religion, gender, education, disability, sexuality or age, underneath it all, we are all fundamentally the same.

He said that we are all human beings, who came from our mothers and have the same brains, hearts and organs. There is too much emphasis on differences and divisions between different people, instead of treating people equally, as we are all the same underneath.

Negative emotions such as fear and distrust of others resulting in divisions lead to all sorts of problems such as bullying, abuse, oppression, conflict, war and killing others. We can see this happening all around us in the world today, whether it is brutal terrorist attacks in the Middle East, senseless shootings in the US, online bullying and trolling on social media or different groups of people being treated unequally and discriminated against in our own country.

Dalai Lama Sept 15_candles

“Compassion is the basis of happiness and good health”, he said. He also spoke about how the key to a more peaceful, happier world was education and that we must educate ‘Generation 21st Century’ young people to be more compassionate towards others.

He said that the whole of humanity has the responsibility to build a happy humanity because most of the problems in the world are man-made. “You are your own master”, he said.

To me, although you may think that this is an oversimplified and simplistic view of today’s world, there is a lot of truth in it. All over the world we see negative images and hear stories everyday of people killing, abusing, torturing or attacking others because they believe those people are different or inferior to them.

People are creating divisions everywhere, because they belong to a different community or culture, they have a disability, they are not as well educated or they are poor or disadvantaged. It is all around us and seems to be getting worse with the constant onslaught of public criticisms or negative attacks being made against people on social media or in the press.

I really don’t like all these divisions or labelling people who we feel are somehow different to ourselves. I agree with the Dalai Lama that we have a responsibility to be more compassionate towards other people, to listen to their concerns more and always treat them with equality and respect. I abhor discrimination of any kind.

Dalai Lama_Everyone smiles

He also spoke about personal happiness, health and inner peace. His message was that if we are constantly searching for happiness in external, material things, we will never find it. There will always be something else we want to buy or something more exciting that we want to experience, so we will be permanently restless. If, on the other hand, we can learn to be mindful and just focus on our inner peace, we will become much happier within ourselves and will also enjoy better health.

I think the Dalai Lama is a very wise man, who speaks a lot of simple, universal truths about humanity. He is a Buddhist but he respects and values people of all religions, cultures and faiths. He comes across as being a very peaceful, respectful man with a very playful sense of humour. He clearly enjoys the company of others too.

At the end of the talk, one of the contestants from ‘The Great British Bake-Off’ TV series came onto the stage and presented the Dalai Lama with a cake he had made for him to celebrate his 80th birthday. It was a surreal moment but a really touching tribute. The audience cheered and sang ‘Happy Birthday’ to him in unison. I came out of the O2 arena feeling really happy and uplifted. It was a great event.

Dalai Lama Sept 2015_cake

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.

Latitude festival_crowds

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.

Latitude blog_The Vaccines

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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Information Age at the Science Museum: The Web Brings Freedom and Equality to Deaf People

Last October I was invited to the opening of the new ‘Information Age’ exhibition at the Science Museum in London. I felt really honoured to be part of this event, which was opened by Her Majesty the Queen, who sent her first ever tweet. It was the culmination of a project I had been involved in lasting several months, with a group of hard of hearing people working with the Science Museum.

Information Age blog_Queen

The project’s aim was to help the Science Museum tell the stories of how the World Wide Web has changed the lives of hard of hearing people. We worked together on this project, sharing our ideas about how the Internet has transformed our lives, making it much easier for us to communicate with others on an equal basis, find out and share information and socialise with other people. You can find out more about the project here.

http://www.sciencemuseum.org.uk/visitmuseum/Plan_your_visit/exhibitions/information_age/participants/web-hearing-project.aspx

The Internet has really opened up the world to many deaf and hard of hearing people. It makes you feel part of a wider online community and support network. I know it really helped me to be able to communicate with other people and seek deaf peer support when I became deafened a few years ago and I felt very isolated.

Some members of this group made short films about how the Internet has had a massive impact on them and changed their lives. These films are now being shown at the exhibition in the Science Museum, as part of an interactive digital screen display, which is captioned and interpreted into BSL. I worked with my friend Andrew on one of the videos shown at the exhibition.

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In it, Andrew, who is hard of hearing, describes how without access to the web, there are huge barriers to communication for him. Asking directions for him, when he is in an unfamiliar area, is a nerve-wracking experience, as, like most deaf and hard of hearing people, he finds it difficult to follow what other people are saying. He describes how it is so much easier for him to search for directions and maps on his smartphone, and to arrange to meet up with people for a drink or to watch the football in a pub, for instance, through instant messaging and texting.

Information Age blog_Andrew

It reminds me of when I wanted to watch my football team Manchester City play in the FA Cup Final a few years ago. At that time I didn’t want to go out or socialise with anyone apart from my wife and immediate family because I found it too difficult to follow and communicate with anyone, so it was much less frustrating for me to stay at home. But it would be the first time that City had been in the FA Cup final for thirty-five years, so I really didn’t want to miss out on the opportunity of finally seeing my team playing in the Cup Final at Wembley. In the end I was lucky to get my ticket from a friend online and I arranged to meet my friends and family there through social media. It would have been impossible for me to make the arrangements without the web and in the end Manchester City beat Stoke 1-0, which was fantastic! I had a really great day, even though I could hear very little.

Information Age blog_RT + Andrew

In another video we see Ruby, who is hard of hearing, using Skype to speak to her friends and family. “The web has changed my life, by making me feel equal to everyone”, she says. I think that communicating on equal terms to everyone else is one of the most important and powerful aspects of the web for deaf and hard of hearing people.

In her video Lidia expands on this idea of the web bringing the deaf and hard of hearing community together and empowering them. She describes how empowering it is to get the information you need from the web. “Being given the information you need empowers you in some ways and gives you the chance to take charge of your life”, she explains.

I went back to see the ‘Information Age’ exhibition with my wife last week. It celebrates 200 years of innovation in communication and information technologies and it is divided into six zones, each representing a different information and communication technology network: The Cable, The Telephone Exchange, Broadcast, The Constellation, The Cell and The Web.

Information Age_Richard

The whole exhibition is completely accessible to deaf and hard of hearing people and in each zone, there are lots of interactive videos, which are captioned and interpreted on screen into BSL. There are also very clear hearing loops throughout the exhibition. The videos explain the stories behind these groundbreaking historic technical inventions and new communication media.

We spent a couple of hours wandering around the exhibition. It was absolutely fascinating and well worth a visit. Some of my highlights were looking at the first telephone inventions, some of the very first radios and TV sets of the 1940s and 1950s, the first computers and mobile phones right up to the present day with social media and the latest smartphones.

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Some of it makes me feel really old! I can remember having a BBC computer in the 1980s, which was state-of-the-art at the time but now looks almost like an antique. I can also remember having a ‘121’ mobile phone in the early 1990s, which now looks like a brick compared to the compact smartphone I have today.

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One section had the original NeXT computer, which was developed by Steve Jobs, the co-founder of Apple Computers. It showed the original Internet interface from 1990. The display described how British man Tim Berners Lee, who worked at CERN in Switzerland, invented the idea of a ‘WorldWideWeb’ a year earlier in 1989 as a global information management system for CERN. He described a ‘web’ of ‘hypertext documents that could be viewed by browsers. It is incredible how much and how rapidly the web has developed since those early days.

Information Age blog_Tim Berners Lee

I also found it fascinating to discover the story of Alexander Graham Bell there, who invented the telephone, and learn about his connection to the deaf community. He was born in Edinburgh in 1847. His mother was profoundly deaf, so he learned to communicate with her through basic sign language. His mother’s deafness led him to become preoccupied with studying acoustics and the idea of transmitting speech by turning electricity into sound.

Later, he moved with his family to the US where he became a teacher at a Deaf school in Boston. There he met a profoundly Deaf student called Mabel Hubbard, who later became his wife. In 1875 after researching and studying the physics of sound technology and transmitting speech he invented a simple receiver for turning electricity into sound.

Information Age_Bell exhibition

A year later, in 1876, he set up the Bell Telephone Co and his device was patented. It became the first satisfactory working telephone and it quickly became a common sight in households across America. Despite this, he considered his most famous invention an intrusion on his real work as a scientist and teacher of the Deaf. He even refused to have a telephone in his own study. I didn’t know his story before and how he invented the telephone as a direct result of his lifelong research into hearing and speech because of his wife and mother’s deafness.

This exhibition makes you realise how much information technology and communication has moved on in the last two hundred years. In fact, it has only been in the last twenty to twenty-five years that digital technology, such as the Internet, social media and mobile phones, has had such a massive impact on our lives. It has been a real game-changer in terms of giving deaf and hard of hearing people the opportunity to communicate with others on an equal basis, giving us a voice and breaking down the barriers to inclusion in our society. Who knows what the next twenty years will bring?

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Peter Pan at the Chickenshed: a magical, inclusive adventure

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Last weekend I went with a group of deaf and hard of hearing friends to see an accessible performance of ‘Peter Pan’ at the Chickenshed theatre in North London. We were all really excited to see this Christmas show and it was the first time that I had ever seen a performance at the Chickenshed.

Two of my friends, Lizzie and Sarah, have a personal connection with the Chickenshed theatre company, since they have both been involved in it since they were young children and their mother works as the in-house captioner there, having been trained by STAGETEXT. Sarah now works as the Assistant Sign Director there too.

It is a fairly small, intimate theatre, but that night it was absolutely full. The stage set was beautiful, and it felt like you were walking into a children’s magical dream, complete with fairies and Neverland adventures.

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Once the performance started, I was immediately struck by how accessible and inclusive the whole experience was for everyone, deaf and hearing. The live captioning above the stage was faultless and for those people who preferred to read the captions up close or who were visually impaired, they were seated next to the stage and given hand-held tablets to read the captions from their own devices.

But what I was really amazed at was that throughout the performance, some of the actors were signing in BSL. This was different to anything I had ever seen before on the stage because they were not just interpreting it in BSL for the other actors, but it was immersed into the performance as a fundamental part of telling the story. Loren Jacobs, who played Peter Pan’s Shadow and Georgina Jacobs, who played Tinkerbell the fairy, signed on the stage most of the time. As I watched them signing, I found it incredible that they could to this as well as act in their characters. They signed so clearly, in a very beautiful way.

Peter Pan + Tinkerbell

It seemed to add a whole new dimension to the performance, which was captivating and very visual. It also meant that it was inclusive for all deaf people, not just those who can read English well and follow the captions.

Afterwards, as I was in the bar chatting to my friends, I discovered a bit more about the Chickenshed, their ethos and values. One of my friends very kindly gave me a book about them as a present, which has recently been published to celebrate the fortieth year since the company was founded.

Through my friends and the book I found out that the Chickenshed was founded in 1974 by Jo Collins and Mary Ward. In those early days they literally met for rehearsals in a chicken shed on a farm owned by a local landowner and big fan of theirs. Since these humble beginnings, the company has expanded a lot until now it has over 800 members, and a waiting list twice that long. They moved into their new purpose-built theatre in 1994, where they have been ever since.

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They also have 260 regular volunteers and admin staff working there. They run educational and outreach programmes across the country, including offering a BA degree in Inclusive Performance in partnership with Middlesex University, as well as having 9 satellite ‘Sheds’ around the country and 2 in Russia.

The thing that has really impressed me about the Chickenshed more than anything is its inclusive ethos. Over the years they have worked with hundreds of people of all ages, abilities and backgrounds. Their ethos is about not labelling anyone, and bringing out the creative potential within everyone. This feeling of being valued and part of a family brings out the best in people and it has changed many people’s lives.

I thought it was wonderful that night to see the stage full of children of all ages and abilities. Everyone was included. In some of the pirate scenes with Captain Hook, there didn’t seem to be an inch spare on the stage as it was packed with children looking like punk pirates in their costumes, jumping around the stage energetically in their excitement and enthusiasm. They seemed to be having such a great time.

Peter Pan_children

The Chickenshed goes to great lengths to make sure that their performances are as inclusive and accessible to everyone as possible. My friend Sarah explained the process of how they went about interpreting the script of ‘Peter Pan’ into BSL and integrating it into the performance. It is a painstaking process, which takes many months of preparation beforehand and working closely with the actors to allow the characters to shine on stage through their signing. They work very hard to ensure that through the actors’ signing, the right mood, intensity and emotions are evoked, as well as making sure the signing is clear, concise and accurate. I found it totally amazing to watch and I surprised myself that I could follow it.

My friends and I all thought that this production of ‘Peter Pan’ was really fun to watch. I loved seeing the actor who played Peter Pan flying around the stage with Tinkerbell, Wendy and the other characters, and I thought all the acting and singing was brilliant.

I also really enjoyed watching Joseph Morton, who played Captain Hook, acting in such a dramatic, villainous manner. He was brilliant. I am really looking forward to my next visit to see another wonderful, inclusive performance by the Chickenshed. I’m hooked!

Merry Christmas everyone!

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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”.

Tom Shakespeare

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.

Tom Shakespeare screen

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!

Tom Shakespeare_label jars

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