Remembering My Hat

11th October 2011

End of life care for LGBT people

I’ve been at a seminar on End of Life Care for LGBT people today, mostly focusing on older people, although with briefer mention of younger people who are also coming to the end of their lives.

I’m no specialist in end of life issues, although I know a bit because of knowing about later life, which is when end of life issues come up for most people. I went along partly out of guilt because one of the organisers had asked me for help with recruiting older bi people to attend and I had tried but (as far as I know) failed.

(cc 19melissa68)

We started by going round the table, saying what our particular interests were in later life and why we were there. At the beginning of that process someone said ‘same sex partners’ as if that was a common experience to all of us and I prepared to start banging the bi and trans drum of ‘same sex partners does not cover us all, all of the time’. But then someone said how important it was to include trans issues in our discussions and gave some examples of how and why. And then someone else said that they particularly wanted to include bi issues because they are bi. And then someone else mentioned bi stuff again, and someone else trans and, really, by the time it came round to me, I felt almost redundant. Which was very nice indeed, and very encouraging. We also had some good discussion of particular issues for LGBT people of colour and people who have been living with HIV for decades.

Someone other than me was talking about the importance of separating out data from bi people from data from lesbians and gay men, which was very encouraging in terms of the likely reception of BiUK (and friends)’s forthcoming The Bisexuality Report (watch this space) which is going to argue just that.

I was delighted to hear that Age of Diversity, which is the successor organisation to Polari, are going to launch their website next month (it’s still in construction at the moment, but you can find it by googling).

There was quite a lot of discussion of the issue of people using a different name than their official name and the difficulties and distress this creates when someone is not fully compos mentis, or when their friends ring the hospital to ask after them but don’t know their legal name. I don’t know whether using a name other than your legal one is particularly common in the LGB community (I know it is in the trans community). I can imagine that it might be, but to me it feels an entirely standard issue in later life because, I now realise, 3 out of my 4 grandparents/pseudo-grandparents went by a middle name, so it’s an old chestnut to me (but none the less important).

People also talked about the importance of debunking the notion and scrapping the phrase ‘next-of-kin’. It has no legal meaning when someone is alive, only once they are dead, and it’s one of the main routes by which LGBT people do not get to have their nearest and dearest involved in their care. Lots of (sadly familiar to me) stories of estranged family turning up and making decisions for someone they had not seen for twenty years, while their partner or close friend is shut out.

I loved a passing comment made by a hospice chaplain when introducing himself and his organisation ‘we’re lovely. In fact, like most hospice people, you could say we’re terminally nice’.

One of the outcomes of the meeting was that the organisers are going to collect together useful resources on this topic. I’ll post the link for that once I know it. But for now, a few resources that I managed to jot down:

  • REGARD (organisation for LGBT disabled people) and their campaign for ‘Sue’s Law’ (if you just search for ‘Regard and Sue’s Law you should find it)
  • Kathy Allmack published a lit review on End of Life Care for LGBT people about three years ago
  • NHS (don’t know which bit) has apparently just produced a guide on bereavement for (re?) trans people.
  • Report on palliative care for LGBT people: National Council for Palliative Care (2011) Open to all?, NCPC and Consortium of LGBT voluntary and community organisations, London ISBN 978-1-898915-89-8
  • Opening Doors Camden (part of Age UK) is launching a checklist for care homes and care providers on practical ways to be LGBT friendly. Out next week, should be available as a pdf on their website.

8th October 2011

Theorising Age in Maastricht: Part 3

Filed under: Uncategorized — rememberingmyhat @ 16:47
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Back to note form, sorry.

Symposium on critical approaches to dementia, ageing and identity

Wendy Richards
Sleep and dementia [not their titles, throughout, I’m summarising]

A really interesting paper on the different meanings of sleep to carers of people with dementia, people with dementia and their families, written up already in Sociologlical Research Online. [get a copy]

(cc brianisinyou)

Julia Twigg
Clothing and dementia

Clothing associated fashion and frivolity, not world of dementia. Identity and display, which needs active subjectivity. Dementia erodes that. Evidence that people with dementia do often lose interest in clothes. But new views of dementia after Kitwood emphasise supporting subjectivity even through dementia.

Kontos embodied selfhood. String of pearls over the bib story.

Clothes affect how we move and sit. Helps remind people who they are. Care homes favour comfort and ease. But a man who has always worn shirt and tie may not feel comfortable in casualwear. Comfort is also about social comfort, being at ease with your social presentation.

Clothes as closest-in environment, especially with the closing in of the world with extreme frailty. Clothes can help promote benign interactions w PWD, continuity of person.

Clothing often very important to relatives too. ‘She would never have worn that’. One of the few presents you can give someone with dementia [as in the film Mimi show in the opening to the conference]

Foucault standardised bodies. Concern for clothes for PWD can be malign. Lee-Trewick ‘lounge standard’ residents, specific kind of femininity.

Imputed wishes but what if the person has changed therir mind? What about comfort and ease? Is there truth in the body when there is no truth  if the mind?

Richard Ward, Hair and Dementia

Hair and Care project


Ordinary hair care is headwork only. Body literally cloaked off. But in haircare for people with dementia, the body keeps intruding

Cover of easily Kitwood book ‘person to person’ shows someone transformed by grooming (before and after picture). Grooming as way off maintaining worth. If identity is performative, how do the identities of people with dementia get performed?

NICE dementia guidelines make no mention of grooming and presentation

Hannah Zellig
Poetry and dementia

Ordinary language of dementia is poetic: Forests of neurons, tangles of plaques. Poetry as way of apprehending dementia which is so baffling and awful.

‘Who is that can tell me who I am?’ King Lear

Poems about dementia:

  • The Solitary by Vuyelwa Carlin (2008) – Ellen and Lydia [I think more, not sure whether whole book is poems about dementia, might be]
  • ‘Incredible shrinking brain’ diminishing poem by Laws each version more words cut out, like dementia
  • ‘Somewhat unravelled’ by Jo Shapcott (2010) from Of Mutability

Precise language of poetry  and the loss of language in dementia is a fantastic paradox.

(Sheila Peace) Blank verse perhaps a particularly appropriate form because of blankness of dementia

(Hannah) Yes. There’s also some other poetry with very tight rhymes, brings you up against an endstop abruptly
Also ike the experience of dementia.

Is there poetry written by poets who developed dementia? Don’t know, would be very interesting if so.

More Theorising Age in Maastricht

Filed under: Uncategorized — rememberingmyhat @ 15:28
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Largely cross posted from the CABS blog, so in more complete sentences (but without the annoying extra white space of that. I don’t get along with Blogger half as well as I do with WordPress)

I went to an extremely interesting panel called ‘Critique of Ageing Well’ which was mainly about critiquing what is variously known as active ageing, successful ageing, positive ageing, productive ageing and so on. There are, of course, nuances between these phrases, but the critique can be general as well as specific to particular approaches. This is something I’ve written about myself for K319, (in Learning Guide 2 – out this coming February!) but I wish I’d been able to attend this symposium first.
Just picking out bits from two of the abstracts gives you a nice, if very dense, summary:
[Debbie Laliberte Rudman, The University of Western Ontario, Canada]
… ‘positive aging’ discourses [can be] conceptualized as technologies of government. Such discourses enlist aging citizens in a duty to age well through shaping and idealizing possibilities for identity and activity. This […] raises concerns regarding ways ‘positive aging’ discourses create demands for ‘aging well’ which are differentially achievable and narrowly defined.
[Thibauld Moulaert, K.U. Leuven, Belgium]
…International discourses of AA have slowly moved from a general framework supporting many dimensions of ageing toward a concentration of the active side, thanks to the confusing notion of “activity”. Would it be possible that this trend consequently neglects some major aspects of ageing like its diversity and inequality? [yes!]
The final speaker, Silke van Dyk, University of Jena, Germany was the most challenging. It was difficult stuff and I was tired at the end of a long day (I’m going to ask her if she has a written copy of her paper) but what I took from it was a challenge not only to active ageing but also to where the critics of active-ageing often (probably inadvertently) end up.
Her argument was that active ageing is a paradigm of sameness – older people should be as much like middle-aged people as possible. But, in resisting this, critics of active ageing end up positioning older people as too different from younger people. They end up renaturalising old age as a homogenous category with its own characteristics distinct from those of younger people. Her answer was deconstructing chronological age and theorising midlife, via postcolonial and queer perspectives, which I think are good projects (although not as novel as she positioned them to be) but I’m struggling with quite how that would play out and how you could use that to challenge mandatory active ageing in practice contexts. I’d like to think more about this, though, as I do think she is on to something.
Phew! That was long and difficult, sorry. For some light relief (although also making serious points), and especially for Caroline Holland:

(cc Capital M)

I also went to a paper about cultural representations of the ageing of Lemmy from Motorhead. It was by Magnus Nilsson from Karlstad University, Sweden. I won’t try to cover everything he said, just pick out some bits I was particularly interested in. Lemmy (or rather, Lemmy in his fans’ imaginations) is the antithesis of healthy ageing. He’s still drinking and taking drugs and having as wild a life as ever. In the famous song Ace of Spades he has apparently changed a clause so he now sings ‘I don’t wanna live forever … but apparently I am’. His fans view him as indestructible, telling a joke that only two things will survive a nuclear holocaust, cockroaches and Lemmy. 

I was interested that some audience members were quite uncomfortable with this. One commented that it was very ageist of his fans not to let him age and another pointed out how dangerous a role model he provided to other people who wouldn’t be able to continue to abuse their health in these ways without major health problems or death. I can, of course, see their points of view entirely, but my own response was to enjoy the transgressive figure as a ripost to the pressures on people to age healthily. I mean, I wouldn’t want to do it myself, and I wouldn’t recommend it to anyone I knew (or even to Lemmy himself, if it is indeed true – this presentation made no claims to be about the real Lemmy, just about his cultural representation) but I think we benefit from a wider range of models of ways of being older, including Lemmy.

Conference notes: Theorizing Age in Maastricht

Here are the usual idiosyncratic notes from a conference I am currently attending. As ever, my additions and thoughts are in square brackets.

It’s Theorising Age: Challenging the Disciplines, which is the 7th International Symposium on Cultural Gerontology and also the inaugual conference of the European Network in Ageing Studies.

(cc d6v1d)

(I have walked over this bridge over the river Maas. It’s lovely. But the sky was a more ordinary grey.)

It’s one of the best conferences I’ve been to for ages. But I’m not going to end up blogging as much of it as usual as I’m having an exciting range of technical issues. But here’s some.

Opening Plenary: Kathleen Woodward Taking care: Population aging, globalization, assisted living 

Who cares for carers of older people? In the US home care workers don’t get minimum wage or overtime (the logic being that the state should not be intruding into people’s homes)

Famous case of a care worker, Evelyn Coke, who sued for overtime, the case went to Supreme Court. Lost. Died.

Highly racialised, with Black women caring for White older people [I think less so in the UK and also Phillippino, Polish? But still racialised, and increasingly so?] Global flows of care givers, transnational, globalisation.

book recommendation: Evelyn Nakano Glenn Forced to care: Coercion and caregiving in America

 New frontier of worklife balance is not child care but elder care [academic feminists finally becoming interested in old age as it starts to affect them] 

Film Paper Dolls (2006) Tomer Heymann,

(cc golauglau)

Documentary about Phillippino MtF transsexuals, working in an ultra orthodox community in Israel as carers to old people. In the evenings, performing a drag act together called ‘The Paper Dolls’.

 Asked what he thinks about having a transsexual care worker, one man said “I got used to it, that’s life”. He had asked for a male caregiver but by the end of the film he gives her a skirt and matching gloves. 

Are ‘men who are women’ forced to care? Their trans-ness is not incidental to their finding employment as carers. Looking after older people is important part of Phillippino culture, they say, [does this extend to men looking after OP in the Phillippines or is it something that is culturally important but done by women?]

 Both carer and cared for are acutely vulnerable in this set up.

Historical context. Since second intifada, no more Palestinian migrant workers. Came from other parts of world. Visas instantly revoked if fired, sent home. 3 Paper Dolls left Israel for the UK where is at least a path to citizenship

In the UK the drag act become ‘The Paper Dolls fromIsrael’ transnational identity included into their performance.

Frail Italian elders, migrant workers [paper in recent-ish edition of Sociology about this] – previously odd couples in public spaces like parks, becoming unremarkable.

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