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Dementia – the Disability Debate

Considering half of all disabled people are older people it is little wonder that Tom Shakespeare, Professor of Disability Research at the University of East Anglia (and yes, he is related to the Bard), finds himself talking more and more about issues which affect older people.  ‘I’m not an ageing specialist let alone a dementia specialist,’ admits Prof Shakespeare, ‘but if we’re truly to move forward then the partnership between disability, my area, and ageing, particularly dementia, has to be fruitful.’

Latest Research

His latest research paper argues the case for thinking differently about dementia and disability.  In ‘Rights of Mind’, he and his two co-authors explore whether dementia should be considered as a disability, and whether people with dementia might consider themselves as disabled people. And recently he gave a very thought provoking talk on the subject, on BBC Radio 4, arguing that viewing dementia as a disability could help those living with the condition win greater rights.

‘It had a really positive reaction,’ says Prof Shakespeare. ‘Loads of people recognised what I was saying – including people who are advocates in the field of dementia but also people who are caring for elderly relatives.’  Getting dementia on the disability rights agenda ‘offers the possibility of rethinking it and looking at it from a different perspective,’ he adds.

He and his co-authors suggest that dementia is more than a medical condition, and people with dementia are activists, too (Terry Pratchett being a good example of one well-known UK dementia activist). Prof Shakespeare says: ‘What we want is the voices of people with dementia to come through loud and strong and that’s been lacking.’

A more than well qualified team

Prior to UEA, Prof Shakespeare worked at the World Health Organization, where he was an editor of the World Report on Disability (2011). He moved to the UEA in 2013 and met co-author Dr Hannah Zeilig soon after. Based at the University of Arts London, Dr Zeilig is also a Research Fellow at the UEA, and is interested in the participative arts for people living with dementia.  She says: ‘I’ve done some work – in 2013 – in which I was based in a care home in North Norfolk and I was using the arts to educate the care home staff and to help them reimagine what living with dementia might be like.’  Prof Shakespeare says of them working together: ‘We started talking about rights and dementia and whether my work on disability rights and her work with people with on dementia overlaps.’  The third co-author of the research paper is Peter Mittler from University of Manchester. Now diagnosed with dementia, he is Human Rights Advisor to Dementia Alliance International.  Prof Shakespeare says: ‘He’s very much in the same background as me but the difference being he’s 87 and he has a diagnosis of dementia.  ‘We all came to this from different but very overlapping perspectives and started batting ideas back and forward.’

Learning from the disability rights movement

Last year Prof Shakespeare spoke on Ageing with Disability at Norwich Older People’s Forum Annual Meeting. ‘The theme of what I was saying was could older people learn something from disabled people? For example, he spoke about what older people could learn from the disability rights movement’s motto: ‘nothing about us without us.’

And he gives this personal perspective on disability: ‘I’ll be 51 this year and I’ve had my impairment all my life – I’m in a wheelchair now.  ‘Ten to 15 per cent of the population are disabled and most of those people will grow older. They have been used to being listened to and being respected; and having rights and having supports throughout their lives, so they are not going to get to the age of 65 or 70 and go ‘OK, that’s it, I’m going to sit at home with my pipe and slippers,’ they’re going to say ‘I want to participate, I want to be respected and I want to be listened to.’

He concludes: ‘I think this is very exciting for the world of ageing because there’s a whole bunch of people who are not going to take it, but who are going to work with other older people and say ‘come on look let’s try and achieve our rights here’.’

Hear Prof Shakespeare in this BBC download on Dementia  or read the full research paper Rights of Mind, here