01 Dec 2015 Podcast: Being Human Festival part 1
This is a recording of David Turner, Daniel Blackie and Alexandra Jones at our event for Being Human Festival 2015, 'Disability and Wellbeing: Past, Present and Future'. Recorded at Swansea University, 17 November 2015. Part two is coming soon!
Thank you very much indeed for coming everybody. My name's Professor David Turner, I'm from the Department of History and Classics here at Swansea University and I'm delighted to welcome you to this event, 'Disability and Wellbeing: Past, Present and Future' as part of the Being Human festival. Being Human is the UK's only national festival of the humanities, led by the School of Advanced Studies at the University of London, in partnership with the Arts and Humanities Research Council, the British Academy and the Wellcome Trust. There are over 300 events in the 2015 programme, organised by universities, galleries and cultural organisations across the country, and we're very proud here at Swansea University to be one of only five hubs co-ordinating events for the festival. If you'd like to check out the full programme of events, it's available at the Being Human website, and you can follow festival updates on Twitter at @BeingHumanFest. And if you want to tweet about the festival please use the hashtag #BeingHuman15. Thank you very much for coming and enjoy this event.
This is an event about wellbeing, so what is wellbeing? Well, before today's event I decided to take the NHS Wellbeing Self-Assessment, which you can do for yourself on the NHS Choices website [link]. I was asked 14 questions which asked me how often, on a scale ranging from 'none of the time' to 'all of the time', I felt certain things about myself. So, wellbeing was measured on the amount of time I spent thinking about the future - basically none of the time, I'm a historian, I've got too much going on in the past. It was about my feelings about being useful, relaxed, being interested in others, feeling close to other people, feeling cheerful and feeling love. It was also measured in terms of whether or not I have energy to spare. "Rarely", I answered. Whether I was able to think clearly, and curious about the world, and had an interest in new things. overall I got a score of 43/70, which placed me in the 'typical range for most people', whatever that means. And it said that to improve my wellbeing it said I had to "get active", "connect with others", "be aware of myself", "give to others" and to "keep learning", which is always good advice for someone working in a university.
But how useful are these criteria for measuring wellbeing, for thinking about the past? Did people measure wellbeing in the same way in centuries gone by? Moreover, does everyone experience wellbeing in the same way? It's been interesting to think about wellbeing in relation to disability, which is what we're going to do this evening. Many people have assumed that disabled people are unhappy. this is as true of the past as it is of the present. So in the eighteenth century, for example, philanthropists campaigning for better education for deaf or blind children saw special institutions dedicated to providing them training as a means of rescuing poor, afflicted children. the founders of these institutions argued that they would ensure the happiness of disabled children by providing the skills that would make them useful productive citizens. Pioneering orthopaedic surgeons of the early 20th centuries, the architects of the medical model of disability perhaps, likewise saw their work as improving the lives of physically disabled children or adults by similarly saving them from the neglect they had experienced in past centuries, through regimes of surgical correction, training and rehabilitation. yet in spite of the assumption that disabled people are unhappy, surveys often suggest that disabled people report a good quality of life. This is what's known as the 'disability paradox'. The sociologists Gary Albrecht and Patrick Debliger, who coined the term in 1999, found in their research that people with disabilities had more positive attitudes towards disability than did nurses or other members of the medical faculty and those of the general public at large. Happiness, they argued, was based on a number of factors, including disabled people having control of their lives, having support from others, having a clear set of values, and having a positive mental attitudes. Conversely, pain, fatigue and unpredictable symptoms could damage quality of life.
Absent from their discussion arguably was the assessment of the impact of public attitudes, media images and government policies on the lives and wellbeing of disabled people, all of which, as recent campaigns against cuts to services, against unhelpful bureaucratic and medical procedures and harmful media images of scroungers have highlighted, might play a role in affecting the wellbeing of people with disabilities.
So tonight, we debate these issues, paying attention to the experiences of disabled people in the past as well as the present, and to the question of what can be done to improve wellbeing in the future. Our speakers reflect a broad range of expertise. Let me introduce Daniel Blackie, Mike Mantin and Alexandra Jones who are researchers on a project Disability and Industrial Society: A Comparative Cultural History of British Coalfields, which is a five-year project funded by the Wellcome Trust examining the experiences of those disabled in coalmining, the industry that powered Britain's industrial revolution. Our other guest is Andrea Gordon, engagement manager for Guide Dogs Cymru. Unfortunately a further speaker, Paul Swann from Disability Wales, was unable to attend this evening due to concerns about travelling as a result of the weather.
I want to begin by talking to Alex and Dan about the experiences of disabled people in Wales' industrial past. After that, Mike will show a short film, talking about the experience of rehabilitation, trying to restore the health and wellbeing of disabled workers. Then Andrea will talk about what disability and wellbeing mean to her. After that we'll open up the debate to you, and get your opinions and allow questions to the speakers. Once again I hope you enjoy the evening.
First of all, I'd like to talk to the two academics on either side of me about their work looking at disability in Wales' industrial past. And I suppose one of the questions we're thinking about tongiht is about the meaning of wellbeing and about whether we can apply our understandings of wellbeing today to the experiences of people in times gone by. So Dan, what do you think about that?
It's a good question. I was thinking as a disability historian, although wellbeing is an important concept to our field, it's something that I haven't thought about historicising much. So before I came to this panel, I was thinking very much along the lines of the opening panel: what is wellbeing and can we apply the concept to the past? Like a lot of people when you come to a concept for the first time I did what I normally do which is look in the Oxford English Dictionary and looked at the definition of wellbeing. There are several definitions that the dictionary offers but the first one is the one that perhaps applies to what we're speaking about today, and it associated wellbeing with physical, psychological and moral welfare, and I think this is something most of us agree on. If we think people’s welfare means their psychological, physical and moral mental wellbeing.
Now I sometimes think, OED is great, especially the online version we have at the university. It gives you a sense of when this understanding of wellbeing was first used. And according to OED, this definition is current in the English language from the 16th century onwards. As a historian I spend a lot of time looking at 18th and 19th century documents that were generated by the general public but also by policymakers and politicians. I was struck by this cos I started to think that the term ‘wellbeing’ doesn’t come up very much when you read policy documents. I did a few searches – one of the wonderful things about being a scholar now is you can digitally search through documents that would’ve taken ages and ages to look through in a couple of clicks of a mouse. And it seemed that wellbeing isn’t used very much in the 19th century policy context. And this made me think, can we really talk about wellbeing in the way we do today, in the past? And I think, given my area of specialism which is the 18th and 19th century, I think it is fair enough to say actually politicians and Britain’s workers in the 19th century did have a concept of wellbeing even if they might not have referred to it as that.
I think one thing that strikes me is that the concept of wellbeing may be a bit different from what David was talking about earlier in regard to NHS Choices, which I think is quite psychological and it’s very much about how does the person feel, think, how it is to be an individual, how do you make sense of the world. But my understanding of wellbeing through the lens of Victorian written material sources, it seems to me there’s much more emphasis on the material aspects of wellbeing. So for instance nowadays we would expect all citizens in our community as a civilised society would have shelter, care and food, and I think this is something the Victorians would have recognised: they would have said a very basic foundation for somebody’s wellbeing is food, shelter and care, should you need it. One thing I’ve been struck by my research, I think there’s less of this psychological understanding of wellbeing. For me it seems that 19th century Britain would have seen it as a material question: are people receiving enough care, support, clothing, food – the basic necessities of life. In saying that however, I have come across a few instances of reports of disabled workers committing suicide. And newspapers reporters were keen in the 19th century to attribute suicide to a poor sense of their own wellbeing.
It seems to me there is an acknowledgement that the psychological aspects of a person’s wellbeing are important. However, one thing I’m struck by when I look at these sources from a modern perspective that there is an understanding that people can feel bad because of psychological issues but it’s very much individualised, something seen as ‘well the problem’s individual, poor old Joe lost his leg in a mining accident, it’s obvious that’s why he killed himself’. But I think from a modern disability studies/activism perspective, that would be an unsatisfactory way of looking at wellbeing nowadays. Because although most people would understand that there were aspects of wellbeing that were psychological and rooted in individuals, a disability studies perspective would urge us to say ‘hey, come on, the fact that a disabled miner’s killed himself is not because there’s something’s wrong with him but that society is not set up to such an extent that it enables him to still be accommodated and integrated into everyday activities.
So if you think about wellbeing as perhaps a combination of the psychological and material. Alex, you look at literature in your work, what do you think wellbeing means in the context of things you look at?
Well, I think that in terms of wellbeing, we're at the Being Festival, and I don't think that the physical or emotional embodied experience of being human is what necessarily changed over the past. More the way that societies and cultures is what has changed. I think when we're looking at literature, we're looking at a creative art form, a way of expressing an attitude to disability, representations. But it's not always as straightforward: just because somebody is being described in literature it doesn't mean we can directly take that as being said, because of the form of what's being expressed, which is another issue we're looking at in literature in the past. So I think one of the issues that come up for disability in modern representations - not just in literature but in film and television - there's some hotly contested issues about representation, and often these are built on what's gone before - on conventions, on the way things have always been represented.
There are certain types of stock characters, people who occur again and again, and I think through looking at literature that's gone before, and built into where we are today, you can also see how some of these patterns have developed and interpret them as well. And I think in terms of the representation of wellbeing in the literature I look at in particular, there's more of a pursuit of people's emotional relationship with disability so it goes into a lot of detail into personal relationships that you get in the novel form that you wouldn't get in a historical source, so you can look at the way people were treating these sort of relationships and attitudes.
So I guess there's two points then: the material side and the emotional side. I'd like to ask you both about those things. So in terms of support first of all, Dan, I guess nowadays the issue of support for disabled people is an important political issue. What kind of support is there for disabled people in the Victorian age, is it all just about workhouses and shutting people away?
No, I think it's diverse. The word I would best describe the kinds of support I would describe disabled people in the 19th century having is a patchwork of care, a patchwork of support. There is no one super source of support or care. People don't necessarily turn to the state, they turn to formal and informal sources of assistance. And there's a lot we can talk about, but I think the state is only one aspect of the formal system of care and support that disabled people could turn to. There is also a very rich tradition of mutualism in the Welsh coalfields, where workers would get together and concoct schemes where they could support each other in times of hardship or need.
One of the best examples of this are the friendly societies that were formed in many working-class communities in the nineteenth century. These paid out sick benefit for people that paid in money to these essentially insurance schemes. Then you could get informal support. People that were disabled, like people today, had husbands, wives, daughters, aunts, uncles, friends and family, and very often support was provided to those nearest and dearest to these people, so there's a lot of different avenues of assistance and support that disabled people drew upon, but it was much more diverse, and disabled people would look to various systems of assistance rather than necessarily turn first and foremost to the state.
I guess a lot changes over the course of the Victorian period, but towards the end of the 19th century the state is providing more of a legal framework for those who are injured on the job to get compensation. So can we talk about things in terms of progress for disabled workers?
It's like anything, there are two sides - one the one hand you could say, "well, compensation legislation is a great thing" and at first glance, great, if you're injured at work it would be nice to think that if you're unable to work or you have financial difficulties due to an injury at work then your employer would compensate you. But it's a little bit of a two-sided affair because, although disabled workers are provided financial compensation, there's an argument to be made - although more research is needed - that compensation laws are actually, in the period we're looking at, quite bad for disabled people. Because it means employers are more reluctant to re-hire disabled workers. And this is because disabled workers in the eyes of many employers in the late nineteenth and early 20th century, are seen as greater liability to further injury and therefore creating further compensation claims.
So yes, we think in the 21st century we think - great - of course they should have financial compensation if they're unable to pursue their occupation, but it's a little bit more complicated than that because in the eyes of the employer the giving of compensation made disabled workers potentially a greater liability because they're worried that, OK, Jack the coalminer's hurt his leg, he's going to suffer further occupational injury in the future, therefore I'm going to not bother re-hiring this guy because I don't want to have a big legal compensation bill in three more years' time.
So I guess that's an example really of how things which are on the surface meant to help, actually having a long-term damaging effect on the prospects of disabled people's working chances?
Well if we're talking about wellbeing, if we all agree - maybe we don't agree - that participating in the workplace is quite an ordinary everyday life activity, being excluded from the workplace could be seen as marginalising or exclusionary, that could be construed as a negative impact. That's how I would interpret it personally.
I guess we can interpret these things from material evidence but it's through the literature really that you can access some of the feelings about this. You mentioned emotions earlier, can you explain a bit more about that, Alex?
Yes, I think that the literature offers an interesting picture of emotional reactions to disability and how people reacted to an accident in the coal mine, which is what I've been looking at. But it's not always straightforwardly a tragic or sad event - it is a big stereotype that we see. Dan mentioned a disabled miner committing suicide and how that was interpreted. And this actually occurs in the literature. Particularly miners that had a crush injury and had become paralysed, you would have the story almost always involving feelings of depression, isolation, crisis of masculinity, and it always seems to descend the same way into the final point of crisis - suicide. That's a literary convention that speaks to the stereotype of tragedy and of what Alison Kafer calls the "grim imagined futures" for disabled people, where the future prospects are imagined to be grim, regardless of whether they are or not, and that feeds into the way literature then depicts these futures.
But in contrast, there are also characters who are not as bleak as that. One particular character who is a stock feature of the literature is the man with the wooden leg, and this character is quite jolly - you can interpret it as being quite condescending, but he's quite an upbeat character, tends to tell jokes and be quite sarcastic, and he's not treated as a tragedy. There are different ways disability is interpreted, and it depends a lot on the type of disability being represented I think. Again in both those examples I've used the examples of men who've been disabled in the coal industry in particular, but I think we get a different picture when we look at the representation of women. One of the things I've found is that women are represented as being ground down by the work they do looking after the men and the household. So the kind of disability represented for women tends to be premature ageing and being eating away, almost consumed by the work they are doing. They become increasingly frail and develop various complications. One of the novels refers to this as "the breaking", meaning you're physically breaking and he refers to women's bodies like 'machines' that wear out, a metaphor for the coal industry. And I think therefore that when you're looking at women, there's a lot of representation of emotional strain which ties into how their disability is depicted. Even though there would have been women disabled in other ways, the way that literature represents women, it falls into these sort of categories and pigeonholes of types of disability.
Thanks very much Alex, I think it'll be useful to mention women because ideas of wellbeing and disability can be distinctly gendered.