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09 Dec 2015 Podcast: Being Human Festival part 2

 

This is a recording of Andrea Gordon of Guide Dogs Cymru and the audience discussion 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!

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Transcript

DAVID TURNER:

I’m going to hand over finally to Andrea Gordon, who’s going to say a few words about her experiences of disability and wellbeing today and after Andrea’s spoken we’ll open up to the floor for questions and discussion. Over to you, Andrea.

 

ANDREA GORDON:

Thank you David. Interesting, that film [Fit to Work] makes me quite sad. What I find sad about it is – what was that, 1942? Well, we actually are doing a piece of work at the moment – Guide Dogs and the Royal National Institute for the Blind in Wales – around the provision of rehabilitation for children who have a visual impairment. And adults, but more particularly for children. I find it quite interesting that, albeit that the language in the film makes me cringe in many ways – to be ‘useful and normal’ - I find the recognition of the need for rehabilitation in that film is quite innovative because we are now in 2015 and we can’t get people the support they need. I wonder how much we’ve come on? I wonder how much we’ve learned about what rehabilitation really means and what people need to make them ‘useful and normal’, or actually my language be to be fully contributing members of society. I think that’s quite an interesting question.

Anyway, I have no sight at all. I’ve been blind all my life. My grandfather was a coalminer. My dad was a mechanic, and I grew up in a very poor, very working class – I think that term still has some credibility? – environment in Wales. We were very poor, we struggled immensely and the fact that I was blind I think was an interesting challenge for my parents. They had no understanding of disability at all, except perhaps in the context of industrial injury, because my granddad and the people he worked  with suffered from accidents in the mines, and that was part of our family history, it was very much part of our understanding of what it was like to be underground. We knew it was dangerous and it resulted in destruction and terrible, sad consequences to people’s lives. So when I acquired my visual impairment as a baby, it came as a bit of a surprise to everybody. Where did that come from?

I grew up in a situation where no one knew anything about visual impairment. It was my salvation that I was able to go to a special school – another way of putting it was absolutely horrendous but, hey, let’s try and be positive about this. I went to a boarding school when I was 5 for children with sight loss, and then I went to a different school when I was 11. In the 1970s I ended up here [Swansea University]  as an undergraduate in English. I did manage to graduate – goodness knows how though, with the amount of alcohol I took on at the time. From there I moved on to a variety of jobs, first of all in the civil service. I tunnelled out of there in the end – I hated it. I worked around training and staff training. Then I moved on to a job in Shaw Trust which, pertinent to this discussion today, worked in that particular organisation at the time to enable disabled people to get employment, and I supported some of that work.

To come back to the topic of tonight and what we’re talking about in terms of wellbeing, that’s a kind of potted history of my life and what is important to me, picking up on the discussions this evening, what’s important to me is that I understand wellbeing as a number of things. For me it’s very much about how much I can contribute, it’s very much about understanding that, to build my self-worth, for me I have to be for example mobile. I have a guide dog who helps me to achieve that. I at a very early age, because I went to special school... I’m a great advocate for special schools – unfashionable I know because the disability movement advocates ‘inclusive’ education – I don’t believe that mainstream education is always inclusive for disabled children, I think we often get left out and I was lucky enough to go through special education process and be equipped with more skills. One of those skills was the ability to get around safely and independently and I don’t really think that if you’re visually impaired, if you’re blind in particular, you’re not going to get far unless you’re able to get out the door and get around with some degree of enjoyment as well. Otherwise it can be a pretty dark world and pretty isolating. So for me getting out and about is fundamental to my wellbeing.

Also being able to access and use technology. I have a feeling – this might be a weird thing to say – that we may almost be at the best point to live as a disabled person. Certainly speaking for blind people, technology has come so far and is so much better than it was 20,30 years ago, that online shopping and online banking are now possible. For me that is a really important aspect of my wellbeing. How much privacy I have. I don’t have to show anyone my bank statements anymore cos I get them all in Braille. I don’t have to ask anybody to read my water bill cos I can ask for it in Braille or large print, if that’s what I needed. So there are things about being blind that are easier now, and that’s a huge contributor to my wellbeing. How empowered I feel. And that links into the issue of control. I’m big on control. I think control and choice are fundamental to wellbeing, and thinking of the lives of people who had and still have industrial injuries to deal with and the pain. I am fortunate, I don’t experience that, but I can’t even imagine what that must be like. And please understand that I speak only from my perspective tonight, it’s very different. But for me, at least I can be well, physically well – I just joined a gym. I have joined gyms before but I get a huge amount of enjoyment from running, using the treadmills, using the equipment – it makes me feel really good. I like to be physically fit, in terms of wellbeing it makes me feel physically well. So for me it’s about those choices I make to enable my participation in society and equip myself of the skills that I need to do that.

There are times when I feel extremely blind. They are times when I get quite cheesed off with the whole thing – I was going to swear then but I’d better now. And there are times when I’m with people who aren’t particularly good at guiding me and I walk into stuff. Or I’m with people who aren’t particularly gifted in explaining the environment I’m in. Maybe I’m in a different country and I need to interpret my surroundings – that’s extremely hard to do, my language skills are not as good as they should be. So my appreciation of different environments may be limited. That is very annoying, it makes me feel very blind. My wellbeing scale isn’t very high up then, cos I get pretty fed up then. And that’s when my self-worth does take a few knocks, because I begin to feel pretty fed up of the situation that I’m in. But for the most part – let me put a percentage on that – for 70% of the time, I feel pretty OK. I feel pretty fulfilled. I have a good job that I enjoy. I have the unique and – something that is beyond value for me is to contribute something meaningful in society so I campaign, I do a lot of campaigning for Guide Dogs and I’m a total pain in the backside for a lot of people who need to have a bit of a pain in the backside sometimes. And that’s a gift and I really appreciate that. So yeah, I think my life is pretty much where I want it to be. There are times when my wellbeing is not that great but they’re temporary and I’m glad I’m alive now and not 100 years ago. That’s all I can say.

 

DAVID TURNER:

Thank you very much indeed Andrea. So we have – in the words of the X Factor – been on a journey this evening. We’ve seen the generalised ways of thinking about wellbeing that were on the NHS Wellbeing Self-assessment, we’ve gone through the historical variations of wellbeing and the relationship between the material and the emotional in the wellbeing of people in the past. We’ve talked about the impact of medicine and rehabilitation and the need to make people useful and normal as a powerful influence in 20th century medicine, and we’ve come round to Andrea’s list of things that affect wellbeing in her life. Striking really when you mentioned empowerment. I wasn’t asked, when I filled in the NHS survey, whether I feel empowered but it is such an important thing and very much related to some of the things you were talking about.

We’ve talked enough, so can I open the floor to discussion and any questions you might have? I’m afraid we don’t have a great deal of time cos our event does finish around about 7.30 but we have about 5 or 10 minutes for people to contribute to tonight’s event. Nathan?

 

NATHAN, AUDIENCE MEMBER:

Unfortunately I have left the quote that I was gonna read out in the office. But I wonder about the definition of disability. My understanding of the legal definition we’re using at the moment was developed in 1995, and it’s been reinserted into the Equality Act which was 2010, something like that? Obviously 20 years have passed since that developed, and disability has a wide spectrum of disability. Myself, I have a hearing impairment and dyslexia, and I feel very uncomfortable with the label disability because of the definition. I’m more likely to refer to myself as a disabled bastard than a disabled person. I wonder whether there is a debate that needs to be have 20 years later to possibly review the definition?

 

DAVID TURNER:

Would anyone like to comment on that, the idea that current definitions of disability are perhaps a bit limited and people necessarily don’t want to identify with?

 

ANDREA GORDON:

I can just throw in a personal perspective if that’s helpful. I think the problem is that the definition of disability in the Disability Discrimination Act 1995, that’s been superseded now by the Equality Act now of course, I think we are tied into a legal framework in a way that perhaps gender doesn’t emulate. So sometimes I try to draw comparisons between the equality issues disabled people face and those that people from ethnic minorities or with different sexual orientations face. And I think that unfortunately the definition we have is based on a medical perspective. But I don’t know if the world is ready for any other definition. What we have is not good, but I don’t know what else we would look for? I do a lot of work around the rights of disabled people, I’m not sure. How the legal world categorises disability is quite important. It may not be what we like, but I think there is a risk of throwing the baby out with the bathwater.

 

DAVID TURNER:

Thank you Andrea. Any other comments or questions?

 

DANIEL BLACKIE:

I think, maybe just adding onto Nathan’s comment there, we can talk about legislation and legal definitions, but we also have to think about the popular representation of disabled people. I think part of the problem is lots of people who might legally be defined as accepting disability have a problem with accepting disability as an identity, is that disability in popular culture is very often of social dependency and the idea that disabled people are not contributing, aren’t full members of society, some of the issues that Andrea touched upon with her discussion of wellbeing. So when we’re thinking about definitions of disability we must go beyond legal definitions, because there are popular definitions of disability that perhaps don’t always square with policy definitions of disability, and the disconnect is sometimes the problem, it’s how everyday men and women on the street define disability. So that’s why some people who might be legally defined as disabled are reluctant to embrace it as an identity.

 

AUDIENCE MEMBER:

One of the many problems I deal with is people do not totally understand. Somebody says they’re disabled, the first thing they look for is can they walk? Can they did this, can they do that? As we all know, most of us in here have got some impairment or other. It is not always visible. Look at you there, you’ve got glasses on, I’ve got glasses on. If I take them off I can see you, but you’re a blur.

 

DANIEL BLACKIE:

I look better as a blur, don’t put your glasses back on just yet.

[Laughter]

 

AUDIENCE MEMBER:

There’s this perception people have got about disability. If you can walk, are you disabled? Going back 20 years ago, if somebody said somebody’s disabled, they were in a wheelchair. That was the definition of it. You didn’t hear about people with mental health problems being classed as disabled. Which they are in much the way as being unable to walk. Sometimes even more cos they’re locked in there and can’t get out.

 

ANDREA GORDON:

There are many visually impaired people who don’t accept the label of disabled at all.

 

AUDIENCE MEMBER:

Exactly. It’s what you expect. People look at you, and unless they actually knew you or seeing you walking with a dog, you look no different than the person next to you.

 

ANDREA GORDON:

Or maybe I’m as different as the person next to me?

[Laughter]

 

AUDIENCE MEMBER:

Again it’s the definition. You cannot see it with you until you see the dog. A lot of people as you say don’t class themselves as disabled. You might class yourself as ‘sight challenged’ or something like this, I don’t know, there’s various ways.

 

DAVID TURNER:

Kirsti, did you want to say something?

 

KIRSTI, AUDIENCE MEMBER:

Leading on from that then, I was just wondering how far the term disability or disabled is useful as a category except possibly beyond the legal, the Equalities Act.

 

ANDREA GORDON:

Not particularly. [laughs] The trouble is with the Equalities legislation, it’s just chucked everything into one bucket. So there’s nothing to be gained or lost. I think it’s become so much an issue of individual perception and identity now, and I think the term has very little meaning now. Probably 10 years ago, Kirsti, it had more because of the disability rights movement. I was very much involved in the early 1990s, campaigning for the Disability Discrimination Act. I’d argue we’ve actually gone backwards since the DDA was introduced. I think we’ve lost ground, I think we’ve lost public support, and I think the media has a lot to do with that.

 

DAVID TURNER:

We’re almost running out of time. The lady at the front, would you like to say something?

 

AUDIENCE MEMBER:

I think attitude is a lot. Is your glass half full or half empty? Do you class it as ‘what can I do’ or ‘what can’t I do’? And the way you live your life, obviously the perception of other people as well, depends on attitudes.

 

ANDREA GORDON:

It’s the ones you empty your glass you’ve got to watch out for. [laughter] They’re the ones you really don’t want to know.

 

DAVID TURNER:

Well thank you very much. Obviously this is a discussion we could carry on much longer, but we do need to wrap things up. So thank you very much indeed everybody for the contributions tonight. I’d like to thank first of all Elaine Canning and her colleagues from the Research Institute for the Arts and Humanities who organised all this on our behalf, and we’re very grateful for all the support we have for this event and all the other great things going on in the Being Human Festival and throughout the year in Arts and Humanities in Swansea. I’d also like to thank Cerys for the sign language interpretation tonight. I’d like to thank all the speakers for their fascinating contributions. I’d like to thank you the audience for coming. And he’s going to be really embarrassed but I’ll tell you this now, I’m teaching a second-year module on the history of disability and I told my students that they should come to this event and only one student has turned up. [Laughter and applause] So well done, very good ethics tonight. We’ll be dealing with the others on Friday. So thank you very much for coming. 

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