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/