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.
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”.
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.
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!
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 deaf people from the ‘Tree House’ Facebook group for a pizza nearby. We had a chat about the talk in a lovely relaxed environment. I enjoyed talking to the wonderfully inspirational Suzi Rees from iDID, as well as Sara and Lizzie, two of the co-founders of the ‘Tree House’. I am looking forward to many more future events with the ‘Tree House’ crew. Going to accessible talks and events like this make me feel empowered and positive. Label jars not people!