Dementia in the spotlight at the Edinburgh Festival

Dementia in the spotlight at the Edinburgh Festival
August 18, 2018 admin
road with arrows pointing to free comedy painted on it

18/08/2018 

My emotional rollercoaster of a week at the Edinburgh Festival, dementia in the spotlight and good news for accessibility and inclusive design?

Read time: 4 minutes

I have just got back from my annual trip up to the Edinburgh Fringe where my husband has been performing for his ninth year: this year in A Practical Guide to Attacking Castles (which he has decided in his wisdom to perform in a full suit of Medieval armour).

man relaxing on bench wearing a full suit of medieval armour

This is my husband, Paul…

Alongside the wonderfully odd (my husband definitely falls in this category), the brilliant (Laura Lexx was a particular highlight for me) and the just downright weird (about 50% of the 4,500 or so shows on this year…), I noticed that there are also an increasing number of shows covering the topic of dementia. Shows such as Steve Day’s Adventures in Dementia and Matthew Highton’s Insufficient Memory beautifully use comedy to make sense of the indiscriminate cruelty of the symptoms, to honour the memory of the loved ones living with the effects and to raise awareness. More than once I was moved to tears as performers eloquently and evocatively articulated how dementia can slowly remove everything that makes up a person except their body, the devastating effects on whole families and the guilt and pain of mourning someone you love while they are still alive. All sounds pretty depressing right? But I also laughed hard and often – there is very dark humour there too and these guys are pros.

70s style polaroid of father and son, titled adventures in dementia

Steve Day’s poster this year

I have been fascinated and delighted in recent times by this increasing focus on dementia, not just at Edinburgh, but across mainstream media throughout the year too. Many of the people I work with have one of the various types of dementia, or know someone affected by it in some way, and so it is refreshing to see people talking about it openly after many years of fear and misunderstanding. I am particularly pleased to see articles like these about dementia-friendly design and the growing realisation that designing with dementia in mind may actually benefit a lot more people than just those living with it (known as inclusive design). That this is getting traction is in no small part down to the tireless work of many fantastic individuals and organisations such as The Dementia Centre.

However, I am also slightly perplexed. While dementia is indeed sadly becoming more and more common, it is by no means an inevitable part of ageing. Current estimates by the Alzheimer’s Society say 1 in 6 people over the age of 80 in the UK have dementia. In contrast, if all goes well, 100% of us are going to get older (my own stats), yet it seems to me we rarely talk about the effects of ageing and the benefits of designing with ageing in mind. Where we are talking about it, perhaps we are not doing it as openly or innovatively. I guess it is easier to get to grips with one particular syndrome like dementia (though actually there are many different types and it affects every individual quite differently) rather than the pretty complex and nebulous set of conditions and experiences that make up ageing.

Let’s get one thing straight before I go any further. I am in no way devaluing the spotlight on dementia here. Anything that helps people to better understand and respond to the always distressing, often debilitating effects is a very good thing. It is just an observation that I am surprised that we aren’t talking about ageing and the impact of design on us in the same way, given that ageing affects many more of us – hopefully all of us – indeed we actively go out of our way to make sure it happens to us.

It is certainly true that no two people’s experiences of ageing will be the same and that it is the product of a mind-boggling number of variables: genes, lifestyle, health, and often just good or bad luck – but there are actually a great deal of pretty universal physical changes that happen to all of us just as a result of us naturally wearing out and fighting gravity every day, year in year out. Natural decline in muscle power, some degree of sight loss, reduced ability to balance, to name a few. These can all have a pretty big impact on our quality of life if we don’t adapt our surroundings to accommodate these changes. As with dementia, designing our homes, public spaces and products with the effects of ageing in mind actually results in design which can benefit pretty much all of us no matter age or ability (known as inclusive design). Yet despite being one of the most important things we can do to help us stay independent, improving accessibility is one of the least exciting things to talk about. And so we often don’t.

Which is why I was excited to hear about the Pleasance’s (one of the main venues at the Fringe) Accessibility Gala, but sad to miss it as I arrived too late into Edinburgh this year. In their own words:

“Disability access at the Fringe is a joke. Almost half of festival venues do not provide wheelchair access. Audiences are missing out on great shows, and shows are missing out on great audiences. However, the Pleasance is committed to providing the most accessible venues on the Fringe. To celebrate this commitment, join us for a top night of comedy. We’ve got an excellent line-up of disabled and non-disabled comedians who all have one thing in common: they’re really, really funny”.

It’s not just wheelchairs though. I was reminded of a memory, which I realised I had suppressed, from two years ago when my mum came up to the Fringe. She was a couple of months away from having her knee replaced and the streets of Edinburgh caused her so much pain. Watching her try and make it down a particularly steep hill only to then find she also had to go up the several flights of stairs to my husband’s venue that year, pretending everything was fine but with tears in her eyes, was one of the most heart-breaking things I have ever seen.

Luckily, Paul is in a much more accessible venue this year (Espionage, Mata Hari Room, 12.30), although this was more by luck than judgement. And mum is back at home, knee safely replaced, and humouring the 40-somethingth year of my dad’s jokes instead (sorry dad).

This Accessibility Gala was a one-night-only kind of affair, but it is great to see this finally starting to gain a bit of attention. The Edinburgh Festival has a long history of reflecting what is in the zeitgeist and providing a space to talk openly about challenging or stigmatised topics – sex, race, religion, mental health, disability. If the increasing numbers of shows about dementia are anything to go by, let’s hope ageing, accessibility and inclusive design are next.

Perhaps I’ll write an Edinburgh show about it next year…

Thanks for reading. I would love to hear your experiences of the Fringe too – whether a comment on accessibility or just a great show recommendation.

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Comments (2)

  1. Kerry 3 months ago

    I noticed some venues (and toilets) making more of an effort this year. We went to a show at Space @ Surgeons hall which was the most accessible venue I have been to.
    I think the fringe App had a filter for accessible venues. Something that showed steepness/stairs you have to negotiate would be a great addition to the app. I know of someone who went to a show at Assembly rooms on the Mound and had balcony seats. She was so tired when she finally got to her seat, so couldn’t really enjoy the show.

  2. Author
    admin 3 months ago

    Thanks so much Kerry for your comment and letting everyone know about the Fringe app – super useful. Great to hear that Surgeons Hall is so accessible too – I hope the show you saw was brill! Thanks for sharing the story of your friend too, really sorry to hear they weren’t able to enjoy things as much as they should have. Great idea to include number/steepness of stairs as a filter – accessibility can be very different for different people and so just making sure people are able to get as much information as possible so they can prepare for what they might have to negotiate can make all the difference. Euan’s Guide (https://www.euansguide.com/) is great for this too, and Blue Badge Style (https://bluebadgestyle.com/), both providing real reviews and even pictures and videos. Thanks again!

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