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/

 

 

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The NADP Conference: A Celebration of the Past, Present and Future of Communication

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A few weekends ago I went to the National Association of Deafened People (NADP)’s conference and AGM in Southampton. I was really looking forward to it for two reasons: firstly because I had been nominated to become a Trustee of the NADP, and they were going to announce the new Trustees at the AGM there, and secondly I was looking forward to meeting other deafened people for the first time, who I had chatted to on some deaf-related Facebook forums, but never actually met in person before. I have also never been a Trustee of a charity before, so I was thrilled at the prospect and looking forward to working on deaf-related issues, which I feel really passionate about.

I woke up very early on the Saturday morning and drove to Southampton with my wife Joanna. We arrived right on time at Southampton Solent University Conference Centre, where the conference was being held, and after a quick coffee and a brief chat with a few friendly faces, we headed straight into the main auditorium for the conference. Once inside, I immediately noticed that the access in terms of communication support was excellent. There were two BSL interpreters, a lipspeaker and live speech-to-text reporting (STTR) of the full day’s proceedings, which was being relayed onto a big screen behind the speakers. I thought that this was total communication support done really well to provide great access and inclusion for everyone.

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The conference was celebrating the NADP’s 30th anniversary and also thirty years of Ross Trotter as Chairman, who is standing down this year and being replaced by Lidia Best. The theme of the conference was how communication has changed in the thirty years of the NADP’s existence.

The first presentation, which was given by Anna Duncan and Sara Flynn from the Auditory Implant Service at Southampton University, was fascinating. They talked about the past, present and future of cochlear implants, and also spoke about the experiences of the hundreds of cochlear implant recipients in Southampton.

I am particularly interested from a personal point of view because I am currently waiting to receive a cochlear implant (CI) myself, so I found what they talked about useful and informative. CIs have come a long way since Graham Carrick received the world’s first commercial implant in 1982. The implant totally transformed his life and he said that he “wouldn’t be where he is today without it”.

In 2014 there are approximately 324,000 cochlear implant recipients worldwide. In Southampton, by March 2014 they had 558 adult CI users (with a further 52 undergoing assessment) and 338 child users (with a further 16 undergoing assessment). The youngest recipient was six months and the oldest was 91 years old. After explaining what a CI is and how it works, they then went on to talk about the main issues and challenges for cochlear implantation today in the UK and abroad and what the future holds for cochlear implants in terms of development of both the technology and the sound quality, new research areas and official requirements regarding a person’s suitability for a cochlear implant.

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There are strict NICE guidelines regarding who is suitable for a cochlear implant and currently they recommend bilateral implants for children and unilateral for adults (except for those with a visual impairment). While the average BKB score (a hearing and speech recognition test) pre-implant (with hearing aids) was only 9%, post-implant it is 70%, so there is an average improvement in the score of 61%. The outcomes are variable depending on the recipient’s hearing history.

It’s interesting that children are entitled to two implants on the NHS under the current guidelines, but most adults only one, and this is something they talked about in more detail. Having two implants helps recipients tell where the sound is coming from as they have sound from both ears. Also, listening in noisy environments is easier. Research is currently being carried out on the benefits of having two implants for adults, as there are obviously cost implications, in addition to looking at the benefits in terms of the recipient’s improved quality of life.

Other areas of research currently being carried out are bimodal stimulation (where someone has a CI in one ear and a hearing aid in the other), research on listening to music with a CI and how the quality of the sound can be improved. For me, when I first lost my hearing, not being able to listen to music, which I absolutely love, was one of the things I really missed most, and I still do.

Further developments include the user having an accessory to make the CI waterproof, so that they could wear them while swimming. For the future, they are looking at developing CIs, which would preserve residual hearing via the development of surgical techniques using thinner electrode arrays, as currently, all residual hearing is killed off during the implantation.

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The other really fascinating areas of future research they are looking at is stem cell technology to regenerate auditory neurons and cochlear hair cells, and also the use of drugs within the cochlea at or around the implantation. Scientists think that drugs may improve outcomes with CIs and prevent further hair cell loss in the inner ear, but the problem is that they don’t know how long these effects will last. I think the next thirty years of cochlear implants are going to see some really exciting developments.

After lunch we had the NADP AGM. Ross Trotter was presented with a carriage clock for his many years service chairing the NADP and we all thanked and applauded him. Then he handed over responsibility to the new Chairman, Lidia Best, who gave a short speech. All the new Trustees, including myself, were introduced to the audience and welcomed to the NADP Committee. It was a really proud moment for me.

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Later that evening after the day had finished, a group of us had a meal together at the ‘Premier Inn’ where we were staying the night. It was a great, relaxed atmosphere where everyone felt comfortable and relaxed. It was really good to meet Tina Lannin there for the first time, a fellow Trustee, who had just arrived from London where she had been at City Lit’s ‘Deaf Day’, and I also had a good chat to Sally Clark, who is also now on the Committee. The best part for me was that as a group of deafened, hard of hearing and hearing people, we all got on with each other really well and chatted away happily, no matter what each other’s communication needs were.

Whereas I used a combination of communication tactics such as lipreading, talking, SSE and a bit of signing, some people didn’t know BSL at all whereas one deaf person I spoke to relied completely on BSL to communicate. I was really relieved that people were happy to write notes down for me when I couldn’t follow what they were saying, particularly when I was struggling to communicate in BSL. I was also glad to see that people in the group were writing things down for CJ on his ‘Boogie Board’ tablet, which I’d never seen before. I thought that was a great idea to help support communication.

I went to bed late that night, but happy after such an eventful day. It was lovely to meet all these new people and catch up with old friends too. I am thrilled to have been voted as a Trustee of the NADP and I am really looking forward to working with the other Committee members to campaign for better access to everyday services and employment for deafened people. I feel really passionate about trying to break down barriers to equality and inclusion in our society and also working with younger people on the Committee, who hopefully will bring in fresh ideas and a positive attitude towards change and breaking down divisions. I am excited about the future of the NADP and looking forward to some great things ahead.

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