Just an aside – while I take a break from relating the lengthy diagnostic saga – I wanted to see what people thought about the language we use when talking about dementia. The original title of this blog was ‘Mum’s Lost Marbles’ and back in the mists of time (three weeks ago) when I first decided to set it up I felt that this was a perfectly appropriate name. It didn’t occur to me for one moment that ‘losing your marbles’ was a negative or demeaning phrase – I wanted a title that was a bit tongue-in-cheek and this seemed to fit the bill. I did consider ‘Away with the Fairies’ but worried that it sounded like a gay travelogue and everything else I could think of seemed either too sentimental or too depressing. So I stuck with ‘Mum’s Lost Marbles’, bought my domain name and starting nudging it out into the great wide cyber-world. But during the first two weeks I began to have my doubts. I was sent this link by Beth from D4dementia who is a total legend of a campaigner and blogger regarding dementia issues:
These guidelines from the Australian organisation ‘Fight Dementia’ makes a serious point (although some of the phrases on the outlawed list are hilarious – my favourite is “He’s got a kangaroo loose in the back paddock”). ‘Lost marbles’ seemed to fall into the category of ‘slang expressions that are derogatory’ along with the kangaroo comment. Initially my response was ‘B**locks to everyone – this is MY blog about how I feel about MY mum’s dementia and it is nothing to do with anybody else’. Of course this is true in part but an online blog is, by definition, a way of foisting one’s own opinions and ideas onto the unsuspecting public and I had no desire to cause widespread offence and outrage in a kind of ‘Katie-Hopkins’ way. Nor, more importantly did I wish to cause distress to newly diagnosed people with dementia. I had thought that “Losing your marbles” was a gentle enough term to be acceptable. But there are many instances where seemingly innocuous phrases become unpleasant over time.
For example ‘Spastic’ is still used as a medical term to describe increased muscle tone and limb contractures often seen in cerebral palsy. It was considered suitable terminology to incorporated into The Spastic Society until it began being used as a pejorative playground term during the seventies of my youth. Now the charity is called Scope and we rarely hear the word ‘Spastic’ because of it’s negative connotations. Friends of mine have been known to refer to themselves as a ‘Total Spaz’ on occasions. Is this OK? Probably not but it’s better than them calling someone else a ‘Spaz’, and it’s a hell of a lot better than calling someone with cerebral palsy a ‘Spaz’ – I mean, can you imagine?! (even writing the word ‘Spaz’ so many times is making me nervous).
So again it harks back to the post ‘Am I laughing at mum or with her’. If I had dementia and was writing a blog called ‘My lost marbles’ or ‘Losing my marbles’ that would be OK wouldn’t it? Because if I was being offensive then I would have offended myself. The fact is however, that I was not writing about myself, I was writing about my lovely mum and it seemed that I was in danger of upsetting folk who are struggling to come to terms with diagnoses of their own. In that context I couldn’t really justify the title so it looked like a rebrand was in order. Thus, http://www.mumhsadementia.com was born! A blog who’s name is so factually correct that it cannot possibly cause offence. Hoorah!