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Why Inclusive Space Environments Are As Vital Now As They Will Be In The Future

Inclusive Space Rocket
A Space Rocket Sketches Off

Now I know what you’re thinking… space, the final frontier, an inclusive environment… really? That’s going a bit boldly isn’t it you scruffy looking Nerfherder?

Well yes and no.

With the advent of Richard Branson’s Virgin Galactic and Elon Musk’s Space X the idea that space is just for fine Shakespearean actors, the Death Star and super fit military people may well be over. But you only have to take a quick google of the space craft themselves, as well as the focus on the technology, to start thinking that there are going to be some major limitations to people getting into space. And that’s just the near future vision.

What about if the only way of surviving climate change is to leave our planet entirely? The security person at the door of the craft begins to draw the door closed and says… ‘Sorry folks, we can only save those who can get in. And actually fit in the narrow seat too. The designer was busy making it look cool like the Millennium Falcon and forgot to think about the user.’

I don’t think this scenario is science fiction.

Well maybe.

Hopefully, the part about the reasons for leaving but imagine if space travel or even just hypersonic atmospheric journeys become our new standard. How do we deliver all the changes we are working towards on Earth so that everyone can participate once its common to be living, travelling and working off it?

The answer is to ensure that the space environment is carefully designed to become an inclusive environment from the very start. Think of it as an opportunity to create and nurture inclusive environments without all the centuries of baggage and Victorian thinking. There has already been some headway into this by organisations like the European Space Agency (ESA) who is in partnership with a range of other organisations with the SpaceIN network. SpaceIN focused on providing access to learning about science and technology. But its remit doesn’t cover incorporating the concepts of Ability to Access, Inclusive Design, Universal Design and Inclusive Environments into the very fabric of the Space Environment.

To do this we all need to ensure careful assessment of future human need and to have oversight on how the designers and thought leaders of this new space race are mapping the journey. For instance, how might we use the Space Environment to enable people to participate in the ‘human supercomputer’? This is the idea that diversity and inclusion will generate more ideas, concepts and challenges to the status quo purely because we are all able to get involved. As Anton Ego in the film Ratatouille says. ‘Not everyone can be a great artist. But a great artist and come from anywhere.’ Future citizens of Mars included.

We can achieve all this simply by spending time putting the user at the heart of this lightspeed journey. Although, in counterpoint, that might seem some distance away for the human and wildlife population of Boca Chica, Texas as Space X moves in next door and tramples on their way of life.

But this is another reason why we should start talking about the ‘Inclusive Space Environment’ now so that the so called ‘final frontier’ doesn’t remain that way – a permanent, exclusive and potentially harmful barrier to us all. As Princess Leia might have said about inclusive environments – ‘Help Me Everyone, this might well be our only hope.’

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Perito Prize Winners

Perito Prize 2020: Transcript of Our Podcast Interview With Perito Prize 2020 Third Place Author – Fatema Matin

 

Perito:     Welcome to Episode 3 of the Perito Prize Podcast 2020, a special Podcast series all about celebrating the writing and creativity for this year’s Perito prize and anthology.  In this episode we are pleased to be joined by Fatema Matin, who entered her short story “The Little Black Stool” into the Perito Prize 2020 and came third.  Fatema’s story can be found on the general section of the Perito website.  Hiya Fatema.

Fatema:  Hi thanks for having me James.

Perito:     (0.26) Well it was great to have you on the Podcast before we kick off though let’s get a warmup question out of the oven for you, what appears in your opinion more important ambition, talent or opportunity?  Put luck in brackets there.

Fatema:  I think it’s a combination of all three, the way I see it what happens to us how and why it’s such a complex phenomenon, I mean I believe that God is the best of planners in the religion that I follow but at the same time God doesn’t change the conditional of people who don’t change themselves you have to take action and make an effort, we have another saving that tells “you shouldn’t leave your camels free to roam and trust blindly in God to keep them safe”.

Perito:     That’s a nice saying.

Fatema:  Yeah definitely, you should tie your camel up and then trust in God more wisely, it’s a delicate balance of hard work and faith.  Sometimes things happen for you and sometimes they don’t, that doesn’t mean that you do or don’t deserve them it’s the will of God so I have quite a religious outlook but it doesn’t really answer the question I’m afraid but sometimes life’s like that, it’s about the questions as well as the answers.

Perito:     (1.42) What made you enter the Perito prize and how did you find out about it?

Fatema:  I done a search for writing competitions based in the UK to participate in because I really enjoy creative writing, I came across the Perito prize and I really related to the theme because inclusive it’s just not an important part of life practically but it’s an important value as well, we should include people whoever they are and make them feel included.

Perito:     (2.11) Some people may not have read your story yet, but I really liked the way it showcases inclusive technology so well, tell us what “The Little Black Stool” is all about.

Fatema:  I think on the surface the story is about a little black stool and about how technology for accessibility it is this whole range of equipment that sometimes needs to be state of the art but sometimes it can be as simple as a single moulded piece of plastic, on top of that it’s about the everyday frustrations that we might experience when things aren’t accessible when perhaps they should be and coping with feelings of being different.

Perito:     (2.45) Brilliant thank you very much that is very nicely said.  Now as you know the Perito prize is dedicated to inclusion access and inclusive environments.  Did you find the topic difficult to write about?

Fatema:  Actually, yes it was very personal to me, I think it was a bit of a raw emotion because I don’t like feeling different to everyone else, it’s not a part of myself I ever like to talk about or even really think about, it’s as if I can ignore what makes me different then I can pretend that those differences don’t exist.  It was also a little bit difficult because I have quite a determined streak if I can do something by myself I will even if the technology to make it easier isn’t there because I hate to depend on other people because I don’t want to put them out.  I remember once bringing a Carrom board home by myself on the bus, if you haven’t see one before a Carrom Board is a game played on a square of wood about 4’ by 4’ so it’s pretty much as tall as I am but when I got home my family were just like how, how did you bring this home but I’m just that wilful so I found a way.

Perito:     (3.55) What’s the most valuable thing about going through this process for you?

Fatema:  I think the most valuable thing about this writing process was it encouraged me to be more grateful about how accessible the country that we live in really is because I know that it’s not the same across the world unfortunately everyone doesn’t have a friendly and helpful attitude to people who are atypical, that appreciation of each person and that it isn’t universal so it’s something that I really should be thankful for.

Perito:     (4.27) Your story is already a great example of how even the small things, well designed, fit for purpose can make an amazing impact on people’s lives but has the prize made you think any differently about how inclusive and accessible like you mentioned about the UK but how we can go about changing the rest of the world or helping the rest of the world to become more inclusive and accessible?

Fatema:  I’m not sure about whether it’s made me think differently but I think it’s definitely brought to my attention the impact that accessibility technology has on people’s lives, some people use it for certain tasks only and other people use it every day for operating other reasons but however it’s being used this technology is an important part of people’s’ lives, writing the story’s made me think about the significant impact that even the simplest of tools now for example, I’m a School Librarian and I recently put together a small section of Dyslexia friendly books.  To someone who doesn’t have Dyslexia it may not look very different, the colour of the page is very subtly different and we may not think twice about the font but for someone who is struggling with Dyslexia that might make a really big difference to them so it’s really brought accessible technology to my attention in that way.

Perito:     (5.52) Do you come across Dyslexia a lot when you’re, as a Librarian?

Fatema:  Unfortunately, I haven’t had that personal experience with children who have Dyslexia because the Coronavirus Pandemic it kicked in just a matter of weeks after I started so my role now there’s not much face-to-face contact and there’s not much physical contact on resources as well that has kept to a minimum so I don’t have as much experience than maybe I’d want.

Perito:     (6.27) As a Dyslexic I think everything that schools can do to aid this is brilliant.  Finally then Fatema any recommendations or tips for people entering next year?

Fatema:  I think I’d like to give encouragement rather than recommendations, I mean I don’t envy those who had the role of picking the winners, that must be such a hard decision to make I don’t think I could do it but just have a go at expressing yourself, even if it feels like you don’t have any idea just jot things down feelings, words, thoughts, any other ideas that a feeling brings to mind then you can start to see the links and connections between them and you can bring them together into something more solid.

Perito:     (7.06) I think that is brilliant and I like the idea of the encouragement angle as well.  Well it’s been brilliant to find out more about you and your story but now it’s time to sign off and tell listeners about the anthology which is available from Amazon around the world and as well as the audio book which will feature Fatema’s work alongside a variety of other entries from the 2020 competition.  This will be available on Audible and other audio book sites, thanks again to our special guest Fatema Matin author of “The Little Black Stool”.

Fatema:  Thanks again for having me it has been a pleasure.

Perito:     It is an absolute pleasure as well Fatema now you’ve been tuning into the Perito 2020 Podcast special edition thanks for listening everyone everywhere.

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Perito Prize Winners

Perito Prize 2020 – Winner: ‘EVERY/OTHER’ By Keshuan Chow

 Every/Other

Keshuan Chow

 

I can’t remember where I first heard it, or when. All I remember is that the girl who said it was an Every. Long, silvery blonde hair, straight as corn silk, shiny with the echoes of a million others like her.

I brush my hair one hundred times, she said, as she pulled the brush along those long, long strands.

So I adopted the habit, in an effort to be more Every. Each night, I sat at my mirror, looking into my Other face. Looking into my Other eyes, dark like obsidian or black holes or voids. I would brush and brush, counting carefully. Always precisely to one hundred, so that I may become more like an Every. More like her.

Brushing my hair was soothing. So soothing that I never saw it as a chore. The sound evokes such calm that people trawl the internet for videos of women brushing their hair. What these people do with the videos I do not know. I imagine them leaning forwards, ear buds in, staring at the screen with a sort of manic grin.

The sound of brushing hair is otherworldly. (You can approximate the sound by putting the flat of your tongue against the back of your front teeth and repeatedly exhaling. It’s not an exact replica, but it comes close).

As a child, I was like a Bowerbird, eagerly picking up tips on how to be more Every. The Everys seemed to be of peak human stock: often blonde, or at least light-haired. Their noses were small and neat, their skin freckled adorably in the hot summer sun. They had eye creases which didn’t puff up and change location when they cried. They didn’t have epicanthal folds.

I remember attending auditions for school plays, year after year. Being an Other meant that I was consistently relegated to minor roles. It didn’t matter how hard I tried; the main part would go to an Every.

I, like the other Others, would be in the chorus, or cast as a Token. Once, I played a Japanese schoolgirl. Another time, a dirty Vietnamese street child. It was as though all of us who were Others were one and the same. It did not matter if I was Chinese, or Malaysian, or Japanese, or Viet. All that mattered was that I was Other.

The night before my Grade Six play, I scratched my face. There was a mole there, a blemish in my Other skin. It wasn’t like the light smattering of freckles I so coveted. It was dark, almost black, the same colour as my hair and eyes. I thought if I removed it, I would somehow be more Every. So I scratched and scratched, until I felt wetness. When I looked at my fingernails, they were caked in blood.

I did my chorus the next day with a plaster on my face.

I distanced myself from other Others. Picked a football team that sounded very Every. I surrounded myself with Every friends, friends whose parents didn’t carry their belongings around in plastic bags, or make them attend Chinese school. I read Every books, I watched Every television. When I flicked through magazines, the faces were all Every.

As I grew, and traversed the rollercoaster that was puberty, I would sometimes be noticed for my Otherness. Boys would actually say they liked me for being Other.

But I don’t want to be Other, I would say. I want to be like you.

They would say, We wouldn’t like you if you were Us.

No matter what I did, I was distinguished as an Other.

I tried my hardest to get part-time work, but suspected my résumé was often thrown out. My name broadcast me as an Other, and it was almost too hard to say. The Everys in charge of hiring probably didn’t want to bumble through an attempt to pronounce it. So it was easier to just not try.

Years later, I read research that confirmed my suspicion. Some Others had found that changing their name to something more Every-like landed them better jobs. It’s a strategy as old as time, really. People who were Others — women, the enslaved, the persecuted —  changed their names to become more acceptable, more appealing. Apparently, the onus is on the Other, not the other way around.

Eventually, I won a place at med school, where I painstakingly sweated out the letters that would follow my name. Afterwards, I would write out my complicated, unpronounceable Other name, then write those two letters: M.D. It is such a common mark of Others like me, that it could almost be a trademark.

Not OtherTM, but OtherMD. In fact, there were so many Others in my graduating class, that I almost felt more Every.

Almost. But not quite.

My habit of brushing my hair never stopped. Every night, one hundred strokes. It didn’t matter if I was up late, studying the bones of the hand (tip: use this mnemonic. So Long To Pinky, Here Comes The Thumb. Straight Line To Pinky, Here Comes The Thumb). It didn’t matter if I was passed out drunk on my friend’s bedroom floor. Whenever I remembered, I would swipe my brush through my hair one hundred times.

It was shortly after starting work as an OtherMD that I started to inspect the brush. For so long, the brush had just been an object, a prop. But as I rode the cresting waves into adulthood, it became an extension of my arm. A totem, or talisman, something that represented myself, my diligence. The parts of my personality I carefully crafted, just like my now-hidden yearning to be more Every.

I looked at my brush, after my one hundred strokes, and saw long black strands of hair tangled through the bristles. The dust collecting amongst the hair was abundant, and unsettling.

One morning, I put my hands on the back of my head, and felt it.

Maybe I’m imagining it, I said to myself, but my head feels smaller.

Don’t be stupid, said my reflection. Your head can’t get smaller from brushing your hair.

Every night, though, there would be more hair snarled into the brush’s bristles. And every night, more dust was caught up in the hair, grey and fluffy, like a cat.

It soon became clear I would always be an Other. Some of my patients insisted I had seen them before (Remember? In June last year?) and I would shake my head and tell them, No, I’m afraid you’re mixing me up with another Other.

They still could never pronounce my name.

So I shortened it.

When I met my now-husband, it was in a bar. He had the blonde hair and the blue eyes of an Every, and a devastating smile that made my stomach fizz. That night, I imagined my gastric bile, yellow and pungent, bubbles popping on the surface. (You can approximate this sound by bringing your lips together and then rapidly pulling them apart).

He took my hand, his white hand clasping my dark one. I forced myself to forget the names of the bones (do not, I repeat, do not mention the mnemonic). We danced. We kissed. His hand caressed the small of my back.

Later, he pushed his Everyness into my Otherness, over and over again, while he whispered my shortened name into my ear.

We married quickly. Everyone thought too quickly. Except my Mother, who told me I was lucky.

He’s a good man, she said. Rich. He will support you.

I didn’t want to tell her that all his ex-girlfriends were Others. That my Otherness seemed, to him, exotic. Something to be cradled and cherished, like a flower.

But not unique. Never unique.

I brushed my hair on our wedding night, while he was sleeping. This time, the hair didn’t just snarl in the brush. It started falling out, drifting down in a dark mist, collecting in a puddle at my feet. When the hair hit the ground, a cloud of dust puffed upwards, rising into the air like curling fog. I breathed in that dust, the dust that came from me.

I turned my head. The back of it looked flat. My head was shrinking, my features disintegrating. In my quest to become more Every, I was losing myself.

Slowly, each day, my skin cells were dying. And dead cells turn into dust.

When my daughter started growing, I felt her Everyness inside of me. Twisting and stretching, she would kick me from the inside, angry at the fleshy prison of my womb. She kicked so hard she cracked a rib.

It’s a known complication, said the doctor. You Others are built to have small babies. But this baby is half Every, and this baby is Big.

What should I do? I panted, breathing through the pain.

The doctor looked at me squarely, over his glasses. Try not to laugh. He wasn’t even joking.

The first glimpse of my daughter was a thatch of black hair, peeking through the lips of my labia. The midwife asked if I wanted to see, with a mirror. At first I said no, but then I said yes.

Black hair. Black, sticky hair. How very Other.

Four months after she was born, the last of my hair fell out. Nature’s cruel trick means that a Mother at her lowest — sleep-deprived, hormonal, with stretch marks and sagging breasts — is also destined to lose her hair. Of course, I was already losing my hair, but the hormones sped up the process. Each time I had a shower, I saw strands getting caught in the drain. And swirling in the water was the dust that came from me, slowly but surely washing away.

My daughter was born looking Other, but over time began to look more Every. And shamefully, I was relieved. They say girls are born with every egg they will ever produce already in their ovaries. I marveled at this fact, and thought about the grandchildren that resided in her belly. Mendelian genetics means that she might have blue-eyed babies. Just think — in only two generations, my Otherness could fade, and end up as nothing more than an interesting anecdote, or something that results in an almond-shaped eye.

I still brushed my head once my hair fell out. It had become such a ritual; a ritual I couldn’t break. It didn’t matter that my scalp was scratched and bleeding, that dust fell from it like the crumbling wings of dead moths.

It didn’t matter that I was shrinking, slowly fading from existence, becoming Invisible like I’d simultaneously wanted, and not wanted, to be.

The last day I brushed my head was when the last scrap of skin dissolved and fell away. I sat staring into my mirror, now no longer flesh-and-blood. All I saw was a gaunt skull, empty-eyed and grinning, staring back at me.

Finally White.

With no connective tissue to hold me together, I collapsed onto the ground in a clattering pile of bones. (You can approximate the sound of clicking bones by putting the tongue on the roof of your mouth, and drawing it downwards quickly to break the vacuum).

It was then that He approached, all black cowl and shroud and large, curving scythe. Just like I had dreamt last night, and every night before that.

He stroked my head with a skeletal hand, bone on bone. It hurt in a way that was both tangible and sweet.

Come with me, Child, said Death.

Yes, I replied. I will come.

Death gathered me into the folds of his cloak, and made me look in the mirror one last time.

Congratulations, he said.

I stared, entranced, at the sight of my bones. The same bones that are inside every other human. (Remember the mnemonic?)

Congratulations, Death repeated, as he brought down the scythe.

You have what you wanted. You have now become an Every.

 

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Perito Prize Winners

Perito Prize 2020: Transcript of Our Podcast Interview With Perito Prize 2020 Winner – Keshaun (Keshe) Chow

Perito Prize 2020 – Transcript of Our Podcast Interview With Perito Prize 2020 Winner – Keshuan (Keshe) Chow

 

You can find the audio version of this excellent interview with Keshe on our podcast host https://www.buzzsprout.com/507109/6577582 and its available on all podcast sites like Apple and Spotify.

 

Perito:     Welcome to Episode 1 of the Perito Podcast 2020, a special Podcast series all about celebrating the writing and creativity of this year’s Perito prize and anthology.  In this episode we are pleased to be joined by the winner of the Perito Prize 2020 Keshe Chow. Keshe wrote the story ‘Every/ Other’ which can be found in the journal section of the Perito website and was selected by the judges as the winning short story for this year.  Hi Keshe and a very warm welcome to the Podcast and well what an incredible story you’ve created, a bit of a warm up question for you so what’s most important do you think ambition, talent or opportunity, we’ll put luck in brackets on that one as well what do you think?

Keshe:     Okay thanks so much for having me today James, first of all I think with this question it’s a bit of a difficult one because I really think it depends so much on the situation and I think depending on what situation you find yourself in different aspects of those three things would take precedence over the other.  I think if we’re sort of talking specifically about writing and publishing I think probably it’s a combination of all three, I think you definitely need to have the drive to just absolutely put your head down and do the work and get the words out and then obviously there’s an element of having the sort of innate ability to use words and just craft them in a certain way and definitely sort of like opportunity and luck is a big part of it as well because so often writing is so subjective, I think different people respond to different things and what one person enjoys a lot another person might find just too out there or too dry or too bland or too like upbeat or too depressing like it’s very, very subjective so I think it just depends so much on that kind of dual factors of the audience and the writer if that’s what we sort of talking about.

Perito:     (1.54) It’s an interesting point you make about subjectivity within the kind of books and writing, I think that is such an important thing, often people will not read outside of a certain subject matter.

Keshe:     Yes.

Perito:     (2.05) I only read Italian detective fiction blah, blah, blah, I only read American…

Keshe:     (laughter)

Perito:     …something or other and when it comes round to read other stuff there does seem to be a, oh I know blah, blah, I could possibly read short stories well might not, they’re micro stories, they’re really short you can eat them in bite size chunks and you get the satisfaction of the whole story in one, I think that’s what I’ve tried to do with this anthology certainly is put together a collection of stories which is as diverse as possible so everyone’s going to find something there but it’s such a difficult thing to get through and people realise that books are so important to people as well, that’s a good point.

Keshe:     Yeah story telling is just so important really and that’s just what part of what makes us human really, I think the ability to share stories and you know communicate ideas through words and things like that.

Perito:     (2.54) So thinking about kind of sharing your ideas out there. What made you enter the prize and how did you find out about it in the first place?

Keshe:     How I found out about it was probably through like a writing blog or something, to be honest I don’t really remember, I spend a lot of time late at night kind of just like when I can’t sleep and stuff (laughter), it’s like cruising around on the internet and I probably came across it at one stage and I had this already written because it was a very personal story so I had it kind of sitting there and I hadn’t really shown it to anyone and it was just kind of private and I thought it kind of feels the brief of that sort of inclusivity and exclusivity that you guys were trying to hit in the Perito prize and so I thought why not just send it in, I didn’t really expect much of it as I said to you when you first contacted me it was like completely unexpected that it sort of impacted on anyone really, cos to me it just was like this weird little story that I’d written late at night when I couldn’t sleep and yeah so that’s basically why I entered, I just did it on a whim.

Perito:     (4.00) Sometimes the best stories are done late at night where you’re plugging into the depth of creativity that you just might not…

Keshe:     (laughter)

Perito:     …that well is really deep and draw it out.

Keshe:     Sitting alone in the dark it definitely brings out some interesting ideas (laughter).

Perito:     (4.15) Actually you can kind of sense the whole sitting alone in your dark bit of the story actually that does come out.

Keshe:     (laughter) yeah, yeah.

Perito:     (4.22) So let’s think about the story then some people won’t have read it yet but one Judge described it as stunning and I think probably what I’ve just said there probably get the tone and the kind of the setting of the story.  Tell us what Every/Other is all about?

Keshe:     So basically it is a piece of fiction but it’s kind of loosely based on a lot of my experiences growing up as a person of colour in Australia so I’m Chinese Australian, I was actually born in Malaysia migrated to Australia when I was about 2 and a half so I don’t really remember much but grew up in quite a traditional Chinese family and sort of straggling those two cultures where you’re trying really hard to assimilate into like an Australian very white nominated culture which it was back in the 80’s when I grew up, you know it’s a long time ago now but yeah it basically was, it was difficult from an identity point of view because there always that element of having two sides of your lives, you know you’ve got the life that you have at home where you’ve got like really traditional Chinese values or whatever as a culture you identify with and then trying to sort of, yeah basically integrate into a greater society where some of those aspects might not be so easily accepted the general public.  So yeah that’s basically what it is about, it was just about sort of my experiences and that’s why it was so personal because there were difficulties obviously growing up in that sort of environment and fantastic things as well and I look back on it now and I think I’m so lucky to have that sort of rich cultural heritage and Australia is so multi-cultural but there were definitely aspects of it growing up that I found very difficult because everyone wants to be included and especially when you’re a kid you just want to be like everyone else, you don’t want to be the strange one or the odd one out and so having anything that sets you apart from others can be quite a difficult experience and I think it’s hard to know what that’s like unless you’ve experienced that.

Perito:     (6.29) So it sounds like that Every/Other has come from a place of not just social exclusion but certainly exclusion in general, it really drives that exclusion concept quite harder and makes a serious impact on the reader, was that only the place that you were coming from when you decided to write it or were there other elements outside of just the historical sense of social exclusion that you’d experienced?

Keshe:     I think I didn’t really have any specific agenda when I wrote it, I kind of just started and it just kind of came because I think it was from a such a deep place that it actually didn’t really take me very long to write, it kind of just flowed once I got the idea, so I don’t really know what exactly what things it encompasses because I’m close to the story I think but I think that it was really just trying to show that dichotomy of having two different aspects of your life and trying to kind of, I guess it kind of almost self-rejection and self-hatred that can come when you realise you are different from the majority and that can be really damaging and I think that’s what I was trying to get across that sort of, I guess it’s social exclusion from others can then lead to a kind of self-rejection and then that’s the real damaging thing when you sort of don’t accept yourself anymore because society at large is telling you that you’d be better off being different.  Yeah I don’t know, I mean like I experienced a really good childhood, don’t get me wrong, it wasn’t like it was awful or you know, I was bullied or anything like that.

Perito:     Yeah.

Keshe:     It was just that there’s all little things and I guess being a marginalised person and this goes for any form of marginalisation is that you’re always questioning, you’re always second guessing, it’s always like, you know, if I miss out on this opportunity is it because I’m actually not good enough or was it because I’m different, it’s always having that thing in the back of your mind where you’re like people seeing me for me or are they seeing me because I’m a stereotype or a token of my culture, there’s so many different aspects and it’s very kind of complex growing up as a marginalised person and again I think it can be really hard to see that if you’re not from a marginalised community and I think it’s fantastic that there’s so much push nowadays to understand diverse voices and marginalised voices and that the culture overall is really trying to raise up those voices nowadays and like your anthology and the contest and everything it’s just such an important thing because historically a lot of the marginalised voices, and I’m not just talking about marginalised from a cultural point of view which is obviously what I was writing about but from any point of view, historically those voices haven’t really been heard and if it was written about it was written about from a viewpoint of, you know, the other side not from the person themselves so yeah it’s amazing that now there is that sort of really deep push to celebrate and raise up those voices, I think that’s just so fantastic.

Perito:     (9.31) You mentioned about self-hate and…

Keshe:     (laughter) yeah.

Perito:     …this actually came across from, was something that you wanted to write about or is that just coincidental that that came across?

Keshe:     I think it was probably a bit coincidental and that’s obviously really strong language, there were definitely a lot of times growing up where I felt like I wish I was just the one blue eyed person but overall I’ve really over my life come to like an acceptance but it is very hard to question whether you really like who you are and that has so many different aspects, I mean obviously as a child and as a teenager most people are kind of question that I think everyone kind of goes through, those of angsty, phases of trying to find out who you are and kind of rejecting each version of yourself and things like that, like I actually I have robust mental health so I think overall like I’ve been able to navigate those aspects quite well but it definitely, especially for people who are even more marginalised than myself I think that mental health is such a massive thing that we have to bear in mind that sort of the sort of lack of inclusion can really seriously impact on people’s mental health or just feeling stigmatised for whatever reason that may be.

Perito:     (10.51) That’s a good point. I found the sentences where you encouraged the reader to make sounds for themselves was particularly engaging and kind of the clips and clops as you brush your hair and things like that.

Keshe:     (laughter)

Perito:     (11.04) Was there any specific inspiration of this technique of writing that you encouraged or was, you’ve mentioned that you wrote this story quite quickly was it just like ah that’s, were you making these sounds, were you brushing hair and then you were like I’m just going to put that in because that feels the right thing to do.

Keshe:     I think that writing is such a rich sensory experience really, like often when you write and you write about all the senses, we’re not just using words we’re trying to evoke memories of sights and smells and sounds and things like that and it was just an extra way I think of kind of reaching out to the reader and having them kind of engage, I think one of the things is that I kind of want to, whoever read it, to really understand where the protagonist was coming from like actually sort of put themselves in her shoes, in this case and so that was just a way of kind of engaging someone whose just reading rather than them just reading words they’re actually kind of interacting with the material and it was experimental because I was kind of like oh this is kind of maybe a little bit too weird and I definitely had some readers who read it when I was like looking for feedback and they were like I didn’t like that bit (laughter) they were like that’s too strange and I think my parents will have said the same thing but again everything is so subjective I just thought it was like a device basically to engage someone and actually sort of get them just feeling like they could put themselves in the story rather than just reading it from a distance.

Perito:     (12.42) Well it worked, it definitely worked.

Keshe:     (laughter)

Perito:     (12.45) So as you know the Perito prize is about inclusion, access, inclusive environments it sounds like you’d already written the story before you came across the prize…

Keshe:     No.

Perito:     …but do you think other people or would you if you entered next year, would you find these sort of topics difficult to write about if you came up with things organically from scratch?

Keshe:     Yeah, so I think I already mentioned like I did really find this particular story very difficult to write, I mean it wasn’t difficult from a point of view of the time it took it came very quickly but once it was written I was kind of really shy about it. Like you know I mentioned to you before the Podcast started that I hadn’t shown my parents yet and I’ve shown very few people and actually once it was written I kind of sat on it for ages, kind of too afraid to let anyone read it because firstly I thought it was really weird and secondly it was so personal that I really felt as though it was like a piece of me and I kind felt that anyone reading it would know so much more about me than a lot of people do, so yeah it’s like kind of scary to be putting it out there but I think on the other hand it is an important topic to write about, I think writing what you know and writing about diversity and culture and inclusion and exclusion is really important especially in the current climate because like I said we are, and as a society as a whole I think we are really trying to hear from diverse voices which is a really good thing and I feel kind of like I can’t ignore that side of myself and be kind of true to myself anymore like I have up ‘til now so yeah it’s kind of a big thing, very scary to be putting myself out here like I am but I hope that it helps people understand what that sort of thing is like, yeah, but I’m not being very articulate at the moment but I think it’s just.

Perito:     (14.46) No I think it’s perfect.

Keshe:     and difficult to speak about.

Perito:     (14.50) I had a question about the hardest thing come up with the story for the competition, but I think you’ve answered that one quite clearly.  How long have you sat on the story before you decided to submit it?

Keshe:     I don’t actually remember, I don’t have a very good concept of time to be honest, as particularly a lot of my writing is done late at night when I can’t sleep so I kind of just, I either manically write really fast or like I sweat out individual lines over many, many months.  This one I wrote very quickly in the night but I think it was probably earlier this year and I was writing other things and getting feedback from readers about this and then the first person I actually showed at all was someone who put out a call on like a critic where it’s saying, “I have something really weird would anyone like to critic it” and I was like, “well I have something really weird as well do you want to read it as well” and I was kind of like sweating cos I was like, oh my goodness this is kind of scary to have anyone read something so personal but yeah like it was once it put it out there it kind of became easier to then decide that it was a story that needed to be told.

Perito:     (15.58) I think it’s important for you to understand that we had over 300 entries for the Perito prize this year.

Keshe:     Wow.

Perito:     (16.04) and so many of the stories have the same sort of impact, so you’re definitely not alone having written something that’s dynamic and unusual and that is entirely the point of the prize is to get people to think literally and laterally about all the themes of the competition as well and then ideally when people read these stories they will sit there and think, gosh I hadn’t viewed things from that perspective before, and because it’s bite size chunks it gives people the ability to understand the message in lots of different ways, so don’t ever feel that this is exactly what you should have done and I would say that the competition has been waiting for your story to come on in.

Keshe:     Thank you.

Perito:     (16.48) So the ending is quite specific, I was kind of in two minds we kind of, we ruin it a bit like a movie review on IMDB.

Keshe:     Yeah (laughter).

Perito:     (16.58) And as I read it, it’s what maybe you had in mind as a way of concluding this story did you add it later or did you, what did you learn about your story as you wrote it out, I guess that you can tell people about that journey that you went through I suppose in the dark room and how long it took you to write it through, but what was that bit where you hit that point in the story you just thought, you know what to hell with this bang I’m going to do it, or was it kind of much more calculated?

Keshe:     I spent a long time actually planning it in my head before I wrote it down, I think that’s why I can write it in such a short amount of time, it took a couple of hours to get all of the words out but I had been thinking about these concepts for a while and kind of formulating it in my head a little bit and I guess what I really wanted to get across with that ending was just that, that loss of identity can almost be as bad as death itself, like it’s just so tragic to really be yearning so much to be something different that you kind of lose yourself in the process so again like I don’t know whether I should be giving it away but it was very metaphorical I hadn’t like.

Perito:     (18.11) It’s your story Keshe so you tell it how it is.

Keshe:     So I mean I had one reader who completely, who thought it was literal and so kind of missed that point but most people kind of understood that it was like a metaphorical death and so yeah that was basically just it, I think while I was writing it I kind of, because I’m now at a place in my life where I can look back and think, no actually I really do accept myself and I accept my culture and I want to impart that onto my children that I am proud of my heritage and proud of my culture and that all of that sort of stuff that I struggled with growing up, you know that was so damaging and sort of maybe I didn’t see it at that the time that it was as damaging as it is so my parents probably will feel quite justifying or just they were always kind of like, you know you have to accept that side of yourself and things.  I think it was just kind of straggling my whole life journey up to now and so I think that it was a little learning process was just realising that I have come to accept myself so in this story the fact that the protagonist doesn’t accept herself as almost like a metaphorical death, if that makes any sense?

Perito:     (19.30) It does yes, yep, I’ll leave the listener to read or listen to it and make up their own minds but I think one of the things we’ve hit on here is getting feedback, now I know a lot of people who would be entering the prize or considering entering the prize will be either wary feedback, I personally as a writer I have (laughter) often had. I get quite agitated when it comes around to feedback cos either people are too slow, they don’t understand or they don’t want to do it and they say they will and they don’t and all these other things but it sounds like you’ve got some really good critical constructive feedback from various people.  How did that process work for you and are there any tips you can give listeners about how maybe they could get something similar going?

Keshe:     So I started creative writing again this year actually and so prior to this year I really had no concept as to how to get feedback or the need to get feedback and critics and I just joined like a heap of writers groups and critic groups online just kind of researching like I always kind of do, yeah so many people were just like it’s invaluable to get feedback because sometimes just so close to your work that you just can’t see when something doesn’t make sense or when something sounds a bit awkward or when things could be framed in a different way and sometimes it’s just really minor tweaks like swapping a word or just changing two sentences around in terms of their order, it can be just so minor but it can just make things so much more powerful and so one thing I found with critics is that, I mean I feel like, because I’m just starting out I feel like anyone offering to read my work is doing me like a huge favour so I feel it’s just they’re so generous with their time so I always kind of offer to reciprocate so it’s always, that’s one thing that I always do and yeah I guess like when I’ve had feedback, so sometimes like I said some readers don’t really get the point I’m trying to make or sometimes they are critical of what I’ve written I think, you know it can be really painful to hear that especially when you’ve written something very personal but just with anything because I think as a writer you always feel so sensitive and so much ownership and it’s kind of like your little baby that you’ve written and put out into the world that I think you can be really sensitive to anything negative but it’s important also to realise that when you’re writing your not really always writing for yourself, you’re really writing to get a message out there…

Perito:     Yeah totally.

Keshe:     …and the more people can hear that message then the more impactful it will be so it kind of serves a good purpose to make sure that you’re reaching as many people as you can with your message.  Yeah and so when I’ve been giving feedback I find it so helpful to try and really zero in on all of the positives as well, like I think it’s really easy to pick apart other people’s work but I think it’s just so important to raise everyone up and make sure everyone knows that everyone has good aspects to their work and there might be things that need tweaking but they’re keeping everything positive and being constructive is just so valuable.

Perito:     (22.54) That’s great advice.  So what was the most valuable thing about going through this writing process for you, sounds like you’ve had a lot of experience in the past but this is quite a recent return to writing, is there kind of something that’s really struck out and said, do you know what I feel better because I’m writing or I feel more creative or so and so forth?

Keshe:     Yeah from a personal point of view I mean I’ve always loved creative writing and I was saying to you before we started today that I had to take like a bit long break from any creative writing at all because I was very focussed on my academic career so that sort of took precedence for many years and so just being able to kind of stretch my brain in a different way is just so fantastic.  I think that having something as well, I mean obviously this year has been exceptionally stressful for virtually everyone in the world and for various areas and so just having something else to kind of focus on and nurture is just so nice, and it’s sort of like a personal journey because I’ve come back to it after such a long time away.

Perito:     (24.09) So has the prize made you think differently about how inclusion access and how accessible the world we live in actually is, was this something that was already plugged into you, with you before or do you look around the street and think, you know what that’s social exclusion, that’s someone’s feeling marginalised, someone can’t access, there’s a lack of inclusion here and there and everywhere?

Keshe:     Yeah, well I think that anytime you hear those words about inclusion and exclusion and accessibility it just puts the emphasis on it more and it just brings it to the forefront of your mind and one thing I particularly loved about the way that you guys framed your competition was that you made a point to say that it could, like the material could be submitted in a whole lot of different ways, like it didn’t necessarily have to be just pros on paper for people who might not find it easy to write because of various reasons or you know whether that’s like a physical reason or even just like you know a mental reason that there were other ways that they could submit work, I mean I just don’t see that very often, I think most of the time a lot of these things that you can participate in are very prescriptive and narrow in the way that you can participate and so I just thought it was so fantastic that you guys extended that and made it a point to say, you know we welcome everyone this isn’t gonna be like some de-ambitious, unreachable thing to take part in that only certain parts or some parts of society can take part in, it was like we welcome everyone, we want everyone to be included and we want to make it a positive thing, I think that’s really, that was likely to see that because obviously we read so much and a lot of it is so kind of rigid especially in the publishing world (laughter) yeah so that was real nice to see.

Perito:     (26.04) That is definitely, that is very right, yeah I found from previous writing and that’s why when we created this general experience it was all about trying to say to people and as a dyslexic myself grown up being called stupid at school it was very much a case of, if you can’t spell that well you can still be creative, everybody can be creative and everybody can express themselves in lots of different ways and I think we wanted to really draw out that by not creating barriers like for instance you have to be in South Australia and you have to be in this tiny part of South Australia and you have to pay 25 dollars and you have to be this and you have to be that.

Keshe:     Yes.

Perito:     (26.43) And I don’t think they’re setting out to be exclusive because they hate other people…

Keshe:     No, yes.

Perito:     …but it’s more the case they want to limit the opportunity to reward people in certain areas, certain things and I think we felt that wasn’t the right course of action it is building, I mean we can’t help everybody whole 100% of time but I’m glad that’s come across…

Keshe:     Yes.

Perito:     …and you felt like it was something that you wanted to get involved in that’s great.

Keshe:     Yeah for sure.

Perito:     (27.11) Finally then so any recommendations or tips for people entering next year?

Keshe:     I mean I don’t really feel like I’m experienced enough really to give out too many tips, I guess just like writing something (laughter) that’s probably the first step, I think so.

Perito:     That’s great advice.

Keshe:     After like it’s so easy to keep all of these stories kind of locked up in your brain and again like you alerted to in the last question there’s so many times where, like sometimes the barriers are external like we discussed but often they’re internal as well, often it’s kind of like, I’m not good enough for this, or like I can’t spell well so why bother entering or, there’s so many sort of like personal demons if you will but like you have to fight to sort of participate in something like this and also like I said when it’s something very personal and this topic and all of the sort of things that you sort of talk about they are very personal to people because you know a lot of these things and exclusivity or accessibility they can be sometimes painful things to write about from a lived experience so I think kind of just getting it down, and whether or not you even send that off or let anyone else see I think just getting it out there and knowing that your story is valuable and needed is probably the first step to overcome, that’s the only thing I can think of.

Perito:     (28.52) I think that’s a lovely piece of advice, I hadn’t thought about the number of stories that maybe have been written but never sent.

Keshe:     Yeah.

Perito:     (29.00) Well I’m really glad you sent in yours Every/Other was certainly a worthy winner amongst many this year.

Keshe:     Thank you.

Perito:     (29.08) So it’s been brilliant to find out more about you and your winning story but now it’s time to sign and tell listeners about the upcoming anthology that is available from Amazon around the world and the audio book which will feature Keshe’s work alongside a variety of other entries for the 2020 competition and will hopefully be available on Audible and other audio book sites as well.  Now thanks again to our special guest 2020 prize winner writer Keshe Chow, thanks Keshe.

Keshe:     Thank you.

Perito:     You’ve been tuning into the Perito Prize 2020 Podcast Special Edition, thanks for listening everyone, everywhere.

Categories
Perito Prize Winners

Perito Prize 2020 – Runner Up: ‘Mary Poppins Was Wrong About Pie Crust’ By Lucy Grace

Mary Poppins Was Wrong About Pie Crust

By Lucy Grace

 

Dear Judith,

Today at work Jerry from accounts said my piecrust was perfect and the colour of caramel like Sarah’s hair. He didn’t say it to me, they never speak to me, but I heard them in the kitchenette.  It wasn’t even his pie. I only make it on Sundays, with enough to last for Monday lunch. They didn’t ask if they could eat it, they just stole it. They never said. They said other things.

“What’s that awful smell in the fridge?”

“I’m guessing it’s Martin’s lunch again. It lingers.”

“Well, uh, there’s nothing in here that looks like food.”

“Usually in a green box. Martin has a thing for eggs and onions – I dread to think what his kitchen smells like.”

I don’t know what they’re talking about. My kitchen smells like a kitchen, what else would it smell like? I doubt they have kitchens, they’re too young. They’ll stay as thin as those too short trousers they wear if they keep eating things from packets for lunch every day, skinny in the wallet as well as the body. And someone really should tell them that tumble drying can shrink clothes in peculiar ways, sometimes just lengthways. And that if they bought socks all the same colour like my brown ones, they will always be able to make a pair. I never suffer from cold ankles.

It takes me three minutes to walk to the office kitchenette to collect my lunch, two and a half minutes to walk back (I am quicker on the downhill stairs) and three-quarters of a minute to set up my desk with the blue cloth, cutlery, flask and cup. I eat my lunch at 12.35pm. At weekends I eat at 12.30pm because my table is in my kitchen and it takes nine seconds to open my fridge and I can be ready with my cloth and cutlery before the clock chimes. But of course I don’t have a clock that chimes. That would be too much. I hope I’m writing this right, Judith.

*

I haven’t eaten with another person for twenty-two years. Not an actual person. There’s Radio Four in my kitchen, and the odd-bods who work in my office, but they mostly eat in the upstairs kitchenette and I eat at my desk so that doesn’t count.  When I was nineteen, I went to a pub with a misused carpet with the girl from the bus stop who made promises. She ordered pie. I tried to stop her, but she said I was a bully and she could eat what she wanted and I wasn’t the boss of her and did I think she was too fat? She said so many words so quickly, they fell out of her mouth like teeth and I couldn’t catch them all. And by the time I’d made sentences out of them, she had gone. The pub smelled funny and the tables were too close together so I left. She wasn’t too fat. She ordered cottage pie and that isn’t even a pie.

*

Grandad always made me wait for the chimes before eating pie – he said the neatness of the hour made the pastry taste better. His table is still in the same place and it’s the same table anyway. Everything is the same in the house, apart from the sharp knife with the butcher string handle, because the string began to unravel and dragged in the washing up bowl so I bought a new one. The girl in the shop made quite a fuss because of all the blood on the blade and the floor and she wouldn’t listen to me explaining that the only way to test a blade is to run your thumb across it, not along it, but in all the noise and shop lights I must have muddled my ‘across’ with my ‘along’ and there was the blood. It was only because of the way I banged my head when I fell that the ambulance had to come but the ride was white and quiet and it made a change from the bus. They said I could lie down. I was just glad it happened on a Saturday. The scar is a white threadworm on my left thumb.

*

The secret in piecrust is cold hands, Judith. I have cold hands and chilblains, but they’re on my feet, the chilblains.

“Don’t overwork it, lad, leave it alone,” Grandad would say.

Grandad was good at leaving things alone. Some days I didn’t speak to anyone. I showed the driver my free bus pass and the dinner lady my free school-dinner pass and the shopkeeper Grandad’s free milk coupons and they didn’t need to speak to me at all. It is better to have passes and vouchers to show people because then they don’t see you. At work I have a pass which hangs around my neck in a plastic wallet. It opens doors too. That’s even better, as people don’t even have to look at my face, they can look at my middle and they’re done with me.

Grandad showed me how to make pie.

“Measure your flour carefully, lad. Too much flour in your piecrust an’ you’ll go from tender to tough.”  Then he would say,

“This is the only time in life it’s good to be flaky,” and laugh wetly until it turned into a cough, and have to go outside for a cigarette for his lungs. I didn’t like the smell, but I liked to watch him smoke the neat little roll-ups from the flat tin. I would stand behind the brown kitchen curtain and watch him leaning back into the weak sun, his floured fingers on the fence.

*

Mary Poppins said in a film on the television that a piecrust promise is easily made, easily broken.

Judith – I don’t think Mary Poppins has ever made piecrust, it is not as easy she thinks. Her promises must be rubbish.

*

This morning the woman in the paper-shop said I had cold hands. She touched my fingers when I paid; I don’t know why because the paper cost exactly twenty pence and she didn’t need to touch me. Twenty pence is a single coin. I have that ready before I go into the shop. When the price of that paper goes up I will swap to a different one which still costs a single coin and has too many parts to it, but I don’t have to read them all.

She said,

“Cold hands, warm heart,” and smiled right at me. I had my gloves on so she didn’t know if my hands were cold and my heart is inside me anyway. Her hair is shiny like conkers. I look at her hands every day, they are pale and soft like raw pastry. I wonder if there would be a mark if I pressed them, gently.

*

She wasn’t in the paper-shop today. It was a fat man instead and he didn’t say anything about my hands or my heart.

*

Perfect piecrust has secrets, not promises. Grandad told me that. He said,

“You want little bits of cold fat in the crust – they’ll melt when it bakes. That’s the secret of flaky crust. Never tell other folk our secrets, lad.”

Does it count if I write them down?

*

Judith – she is back! It has been the fat man in the paper shop for twenty-six days and I thought she had gone forever but this morning she said,

“Cold hands, warm heart,” and I was so happy I walked to the bus stop forty-five seconds more quickly than usual.

*

My cupboard:

  • Two white cups, one for tea and one for coffee.
  • Saucers, none (unnecessary).
  • One drinking glass, medium, chipped.
  • One plate, green.
  • One bowl, for everything else.
  • One white enamelled pie dish with a blue rim, medium-sized.

*

Today isn’t a pie day, but I have thought about it a lot and know it’s risky but I am nearly forty-one and after writing up a pros and cons list like you suggested I’ve worked out the probable hazards and Grandad isn’t here anyway so I’m going to make the pies a day early and take them to her tomorrow. Antiques Roadshow won’t be on but I will hum the music instead.

*

This morning it was difficult to open the door to the paper-shop because I was carrying two pies in a bag. The bell jangled when I went in so she knew I was coming. When I gave her my single coin, I put her pie-cup down on top of the stack of papers and it looked tiny in my man’s hand and maybe not the right size. She didn’t say all the four words. Instead she smiled with the whole of her mouth and said, “Warm heart,” and I felt yellow like softened butter.  I smiled back, just a bit, without teeth, but I didn’t say anything because I didn’t have anything to say.

*

Jerry from accounts stole another pie. I had put it on the second shelf of the fridge, at the back, with a pink post-it note where I’d written DO NOT EAT and underneath that I’d written POISONED because they are too vain to risk getting sickness and diarrhoea in front of Sarah’s hair. I wrote it with my left hand as a disguise.

At 12.30pm I left my desk and at 12.33pm I reached the kitchenette, which was too soon for someone to eat a whole pie, but there on the worktop was my dish, scraped out with crust remnants on the edge. I was rageful. They are short-trousered idiots, I don’t know how they managed to get a job at all. Perhaps they cannot read. I went back to the stairs, but everything was ruined so I went to the toilets instead even though they smell purple and the long lights give me a headache. In the first cubicle I had a seven-minute sit down on the lid and the door opened and some people came in and I heard Jerry from accounts say, “Perfect pastry, just like Sarah’s hair,” and I hated him.

*

This morning I got to the paper-shop at 08.02 and she was there.

“I’m Jo,” she said.

Her words are as small as the pies. It is perfect. On the walk home I thought about cold fat, melting between the cracks.

 

*

This is the last page I will write. It’s a bit annoying thinking about what has happened in the day just to write it all down. Judith said, neuro-typical or not, it is Important to Process Events in order to Feel Things Properly. She has a fixation on Feeling Things, she’s always wanting to talk about Feeling Things. She said to pretend I was writing to her, to make it easier, but I have ended up writing to me. I still speak to her on Wednesdays anyway. The social services cardigan lady said it would either be medication every day or Judith’s leather chair every Wednesday, to Ensure the Stability of my Mental Health. Some people use so many words. One in seven is clearly better than seven in seven, so I chose the chair.

 

*

Tomorrow is New Year. I know I said I wasn’t going to write again, but I bought a green notebook. I have good news:

Jerry from accounts left work.

I took in a medium-sized pie in a foil dish to celebrate, with a note saying HELP YOURSELF. People wondered where the pie was from even though I held the pen in my right-hand. I didn’t eat any because other people might have licked the knife.

I still make pie on Sundays, but now I make two, and use both cups. I’ve bought another glass. Later, maybe tomorrow, I’ll tell Jo about Grandad and his pies, not anything worth mentioning really, but just so she knows, about piecrust and secrets and things.

Categories
Perito Prize Winners

Perito Prize 2020: Transcript of Our Podcast Interview With Perito Prize 2020 Runner Up – Lucy Grace

Perito Prize 2020: Transcript of Our Podcast Interview With Perito Prize 2020 Runner Up – Lucy Grace

 

You can find the audio version of this excellent interview with Keshe on our podcast host https://www.buzzsprout.com/507109/6577582 and its available on all podcast sites like Apple and Spotify.

 

Perito:     Welcome to Episode 2 of the Perito Prize Podcast 2020. A special Podcast series all about celebrating the writing and creativity for this year’s Perito prize and anthology.  Now in this episode we are pleased to be joined by Lucy Grace, the writer of the second place story for the Perito Prize 2020.  Lucy wrote the short story “Mary Poppins was Wrong about Pie Crust” which can be found in the journal section of the Perito website and was selected by the Judges as the runner-up story for this year.  Hi Lucy and welcome to the Podcast now before we kick off let’s get a warmup question on the grill for you.  Lucy what is more important, and I guess from a teaching perspective you’ll probably be more familiar with this than most, ambition, talent or opportunity, kind of luck in there as well.

Lucy:        Well I once heard somebody say that hard work is never accidental and I thought yes you’re so right on that so while people must have a little bit of talent, some basic skills, I think if you work hard enough I do believe that you make your own luck into opportunity and while I think people have more obstacles and another I think optimism and persistence and just kind of getting your head down and getting on with it will help people get wherever they want to be.

Perito:     (1.16) What made you enter the prize and how did you find out about it in the first place?

Lucy:        Well I love writing stories, I write lots of short stories and flash fiction and I like writing stories in different people’s voices because it’s too easy to fall into writing the same story over and over again, so I decided to have a little experiment and tried to write in a man’s voice, who was 40 and have a little, and try that and then on Twitter, I’m on Twitter and that is the only social media I do I don’t do any Facebook or anything else there’s a really supportive writing community it’s really inclusive and I’ve made some really good friends on there, I’ve never met them, made some really good friends, somebody posted on there, “look at this, this is a great competition for a good cause won’t don’t you have a try” so I looked it up followed the link and found it and thought, yeah that’s right up my street, so I can trial my story out, write a story with this competition in mind.

Perito:     (2.13) That’s brilliant I’m really glad you did because I think it’s a really interesting story, well we’ll come to the kind of like the general tone and feel about it but some people may not have read your story yet so tell us about what it’s about and why Mary Poppins was wrong about pie crust?

Lucy:        Okay well the title came to me near the end of the story and it does fit really well when you’ve heard the story or read the story I think, it’s about Martin, the main character whose a quirky 40 year old man, he lives alone, he lives in the house that he use to share with his granddad and you don’t really know much about his background other than it has a flavour of perhaps not being a very happy background but Martin doesn’t realise that, his quirks are I think that he’s got a few traits of what we could say are ASC and he’s probably on the Autistic Continuum but I don’t think he’s realised, he’s really happy with his general life but he is non-plussed about a lot of things that happened to him so the things about his granddad, I wanted to, I didn’t want to, I don’t want a depressing story I want Martin to be the hero of the story but the story’s got a bit of pathos because he says things like, you know some days he didn’t speak to anybody because he got a free bus pass and a free school dinner pass and free milk coupons so nobody needs to speak to him and that’s better that nobody has to speak to you cos he can just have a pass and now he has a job and he has a work place around his middle so that gets him into the building and he doesn’t have to speak to anybody even now.  So I wanted to write about that but I wanted to think about what the good things that he’s had in his life and how he can recreate them in a world which he doesn’t necessarily understand or is at one with, the world’s a bit of a mystery to him particularly social relationships, emotional relationships.  The one thing he remembers from his granddad was how to make pie crust, his granddad use to make pies and he remembers that and his granddad use to give him bits of advice, he’s remembered that and in the end it’s that that’s his way that becomes his communication, and it’s the way eventually he communicates enough with somebody lovely to find his eventual partner.

Perito:     (4.11) Now there’s a lot about people nicking things from fridges, food from fridges.

Lucy:        (laughter)

Perito:     (4.15) Is this something that happens at work, have you got experience of this?

Lucy:        Well no I haven’t, I mean everybody if you work in a communal place with a communal kitchen there is always about the communal kitchen, everybody has an opinion and in a workplace, in a group of colleagues there is usually somebody who will clean it up, somebody who leaves it in a mess, somebody whose food rots at the end of the fridge for weeks until somebody throw it out, lots of miscellaneous Tupperware, you know there is always a thing about the kitchen because I think the kitchen is usually a private space for your house, your home and when you go to work you’re forced to share with people that you wouldn’t normally share with, I suppose it’s like the same as a house share or a flat share the kitchen is always a bone of contention and I think for Martin who lives his routines very orderly, with a very orderly life in his kitchen at home this is a point, a place where he finds a lot of stress in the workplaces in the kitchen.

Perito:     (5.11) Yeah and I think he might be not alone certainly in the corporate environments I’ve worked in.

Lucy:        (laughter)

Perito:     (5.16) (laughter) I kind of formed the character in my head when I was reading it a bit of a Steve Carrell type guy going on with this one and as I worked it through I kind of see his narration in the background and you saw he’s got a very comic and methodical tone to it which is an excellent reflection of the character they deliberately constructed here and what made you think about writing it in the first place?

Lucy:        I think I enjoyed the character of Eleanor Oliphant when she was written particularly in the opening of the book and I wanted to write a male character who might have Autistic traits and to look at how that would work, I live and work with people on the Continuum and there’s lots of moments where you just have to laugh at their response to a regular situation or you’d just cry, so you just think, yeah how did you get to that point from what I’ve just said or what’s just happened, I think all of us have got traits in us we just don’t want to admit it and I wanted to write a warm, funny story and Martin was the star of it and you were on his team right from the start even though he’s probably quite a unusual colleague, I wouldn’t say difficult he’s probably unusual and I imagine that everybody he comes into contact with whether it’s the bus driver, the person in the paper shop, his colleagues, they know him and ??6.39 oh yes Martin but I wanted to him write him as the hero I think as a star and he is very funny without really realising it I think yeah.

Perito:     (6.45) Now as you know the Perito prize is about inclusion access, inclusive environments, did you find the topic difficult to write about even though you’re amongst people from a work and social point of view?

Lucy:        No I didn’t at all really, it didn’t, it was never a thing, it didn’t make it the competition, the theme wasn’t different to me I think I have, like I say I’ve got some quirky family members older than me, younger than me as a primary teacher you’re surrounded by unusual thinking and I’ve been a SENCO teacher for about 10 years and so I understand that really well, I choose that in my life, I think it adds to my life and I understand completely how, you know toilets can smell purple so children will choose not to use them or people speaking riddles because nobody understands what each other mean, how you don’t understand people’s non-verbal q’s?? or the words they say make no sense so why would you even bother listening to them.  So I think, yeah I understand that and I think it’s really interesting, why is it wrong that you want to drink out of the same glass every day or sit in the same seat every day or cut your sandwiches exactly the same size every day I think that’s okay there’s room in the world for that, so I think that’s just interesting to talk about and like I say I think everybody, when you really get down to it and people start to talk about it everyone has particular fixed behaviours and traits they just don’t always share them.

Perito:     (8.01) Absolutely and this is exactly what this prize is all about, kind of bringing to light the fact that we’re all very, very similar in our differences.

Lucy:        Yes.

Perito:     (8.11) And it’s a celebration of that but what is the most valuable thing for you specifically about going through this writing process?

Lucy:        I think I didn’t have to work very hard but I was very conscious of writing the story where the difference in Martin, I wanted him to have a difference but I didn’t want the difference to be the point of the story to be the thing that carried the story, it was important to make him lovely enough so that the lovely Jo would choose him and so the other characters around them I want them to be the unkind, unthinking idiots, so the people who are kind of neuro typical that surround him in the workplace I want them to kind of be the baddies in the story and for him to be the person that’s speaking sense, which doesn’t seem to happen enough I think in the real world.

Perito:     (8.55) So has this prize made you think differently about how inclusive and accessible the world we live in actually is? and I think I know the answer to that questions from your previous answers but it would be good to hear you draw that our a little.

Lucy:        Yeah sure I think it’s too easy to forget when we’re faced with a roomful of friends or colleagues or students, each of them is bringing something with them, so everybody comes from a different background and I think people are too quick to judge particularly in the world of social media, it’s too easy to be unkind I think, to fix your opinion really early on, on one thing and I think that I would like the world to be more inclusive and accessible and I think we should all allow people some more room really to forgive them and anxieties and their fixed behaviour and work with them as they are and I think the reason that I wrote about kind of an invisible difference is because I think it’s particularly difficult with people with an invisible difference to be treated you know accordingly and think you know I wouldn’t ask a person with physical difficulties to suddenly perform a physical task in front of a room of strangers, if it was something they were unable to do but asking someone with ASC differences to act outside their comfort zone or their capabilities it’s exactly the same and I think people don’t acknowledge that enough because people don’t want to wear the label that says, I act differently, I think differently, I behave differently, my brain puts things in a different order in my head and I think because people don’t know that sometimes then I think it’s, the world can be hard I think if you’ve got an invisible different.

Perito:     (10.22) What always strikes me when I go around doing my work is I tend to ask people about how many people within their immediate circle are or have had either an impairment or a disability and generally the response comes either themselves as an individual or a very close parent family member within the immediate circle and then there’s normally a couple of people in like maybe the friendship or the wider family group, everybody can relate to something with a lived experience.

Lucy:        Yeah.

Perito:     (10.50) Which has either generated some sort of sense of exclusion or simply failure to appreciate the individual’s differences and neuro diversity, I’m always kind of surprised at how coming back to Martin about even the baddy characters in the story will be probably going home and looking after a child with a disability perhaps, maybe a grandparent or a parent with Dementia and it seems to be for me kind of the failure to understand that what’s also affecting you is also going on in other people’s lives.

Lucy:        Yeah.

Perito:     (11.23) Tends to be the thing I’m most surprised by and having to constantly remind people actually you know what you’re not so different it’s time to celebrate the uniqueness but also appreciate everybody else is most likely going through something similar.

Lucy:        Yeah I think that certainly would lead to a happier workplace and a happier learning environment I think.

Perito:     (11.42) So what happened to Martin next, that’s what I was kind of interested to know, where did you see his career going and what happened to him, have you written any more masked stories?

Lucy:        I haven’t no, I’m not sure, I wanted to, I hadn’t considered writing anymore because I think I wanted him to be together with kind of the mysterious lovely Jo from the paper shop who he ends up with and she is clearly accommodating to him, I haven’t really written her as a big character other than that she just accepts him how he is I think, it’s the simplicity of her character I really like that she just says, he goes in a paper shop and he’ll pay with one coin and it’s 20p his newspapers or 50p and when it goes up he’s going to have to buy another newspaper that he doesn’t like with too many parts to it.

Perito:     (laughter)

Lucy:        He doesn’t have to read them all just so he can pay with one coin because he can’t bear the thought of having to hang around and get change it would just mess up his system so he just has to pay with a coin and I think that she just understands that and that’s fine and so she doesn’t use too many words, she doesn’t complicate him, she just answers what he says, it’s a very simple but profound connection that they’ve made and I almost don’t want to explore that in case it spoils it, I like the fact that they’re just out there now living it alongside each other and one day he’s gonna be brave enough to tell him, one day he’ll think, he’s not brave, one day he’s gonna tell her about his granddad and the pie crusts and secrets and things but nothing really important but just so she knows and that’s such a massive statement for somebody whose lived such a solitary life, I just, I love the ending, I had the ending about half way through and I thought that’s where I need them to get to this point so they can end at this point.

Perito:     (13.13) I did find some sort of similarities to, do you remember the television show Monk, it’s about a neuro diversion detective in San Francisco.

Lucy:        Right I don’t think I do, no.

Perito:     (13.23) And he kind of had the same kind of everything had to be perfectly clean, everything, and actually his neuro divergence actually added up to him to be able to do the job as well as he did do, he was a private kind of detective consultant.

Lucy:        Yes, yes, yes absolutely.

Perito:     (13.37) So I could see that with Martin how actually he can, he could, he’s got so much value there hasn’t he in terms of his attention to detail and his, again his methodical approach to life everything was quite relaxing reading what he was saying.

Lucy:        Yeah absolutely I think that if you look in a lot of trades and kind of areas of employment there is a particular type of neuro divergence cos everybody’s different, there are lots of different styles of non-neuro typical people and I think that they do find often a home and clustered together in a profession that really suits them and whose to say that that’s not okay, so it’s unkind that scientists often are boffins, scientist, a boffin is somebody who’s got a very methodical, structured way of thinking and of reporting without kind of going off plan but they also have a kind of a weird opening side to their brains sometimes people who are not neuro typical where their creativity where anything is possible and I love that, that’s just like being a 5 year old all over again, so you can just open your brain sideways??14.31 and say, “well why haven’t we tried this”, and people that perhaps are neuro typical who think in straight lines all the time don’t have that kind of capacity and don’t, and I think that’s something to be valued, I think I’m all for thinking sideways and thinking why not rather than why do we have to.

Perito:     (14.50) Well I was going to say while you were talking there I was thinking about creativity and how neuro divergence can allow the innovation and creativities to flourish because you’re producing something that other people are just quite thinking the same way and I think as we go forward, I think business and certainly the economy needs to start celebrating that neuro divergence so that we can bring new products to market for people who might be excluded communities who are maybe thinking differently about stuff, cos if we do the same things all the time we know certainly from a teaching perspective it gets boring and ends up not working.

Lucy:        Yes, yeah I really do I think it’s just important to give people a voice and I think that there’s been a change, I’m not sure how yet but I think the whole, the shifts to working from home for a lot of people has actually been a really good thing, I think whilst there is a lot of worry about people’s mental health often I think it’s more neuro typical people’s mental health who are missing the workplace, I think people who struggle leaving the house to go to work have suddenly been given a new lease of life and they can do their job just as well at home and without the added stress and strain and the exhaustion and the mental toil of actually leaving the house, going on public transport, getting to a workplace, being with people, trying to focus on the job with the noise and the colour and the smells and the things that aren’t okay and then coming home again and then coming again and then closing the front door and thinking thank goodness I’m back and that will happen again to them tomorrow, and the next day and the next day, you know, that level of anxiety is exhausting and I think that while people yes are saying it’s difficult for people’s mental health because they can’t go to work there is a whole other slice of the population who is just thriving on being at home.

Perito:     (16.30) Yeah not having to put up with the complexities of the workplace definitely.

Lucy:        Yes I think so.

Perito:     (16.36) Finally any recommendations or tips for people entering next year’s competition?

Lucy:        Oh, I think right opening, right openly, cheerfully, maybe, good stories will often have a character so if you could think of a character a person you know or you’ve known why did you admire them, what did they overcome, what did they live with and write about, you know start with the people first I think and don’t put people into predictable little boxes, let them live the fullest life they possibly can and write about that.

Perito:     (17.05) That’s good advice, great, thank you Lucy, so it’s been brilliant to find more about you and your story but now it’s time to sign off and tell listens about the upcoming anthology which will be available from Amazon around the world and an audio book which will feature Lucy’s work alongside a variety of other entries from the 2020 competition, it will be available on Audible and other audio book sites.  Thanks again to our special guest Lucy Grace, thanks Lucy.

Lucy:        Thank you, thank you very much.

Perito:     Our runner up and creator of the brilliant short story “Mary Poppins was Wrong about Pie Crust”.  You’ve been tuning into the Perito Prize 2020 Podcast Special Edition, thanks for listening everyone, everywhere.

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Perito Prize Winners

Perito Prize 2020 – Third Place: ‘The Little Black Stool’ By Fatema Matin

THE LITTLE BLACK STOOL

By Fatema Matin

 

When people think of accessibility, they may think of sophisticated software or state-of-the-art technology. They may think of equipment that changes lives in previously unimaginable ways and therefore equipment that is expensive. However, accessibility tools don’t always need to be complex. Sometimes, they can be as simple as a little black stool.

The little black stool that lived in our kitchen was like a member of the family. Well, it was to me at least. It was about fifteen centimetres high and I grew up using it every day. The top of the stool was designed with a pattern of circular holes and it had four reliable, stubby legs. It was made of cheap plastic, so it wasn’t worth much in terms of money but when we moved house twenty years ago there was no question of forgetting the stool and leaving it behind. The stool came with us. Whenever I needed to wash my hands or wash the dishes or help with the cooking the stool was there. Whenever I needed to reach up to put something away or to get something down, the stool was there ever loyal, ever helpful. I loved that stool. It meant a lot to me because I have Turner’s Syndrome and kyphoscoliosis which make me shorter than average. When you are shorter than normal, a stool like that is the best tool you can have.

But one day, my big brother stepped on it (the blob!) and it snapped into pieces. The stool died an unnecessary death after a long term of faithful service and my heart was broken into as many pieces as the stool. Slightly ridiculous, I know. We had another stool in the kitchen, but it just wasn’t the same. It was completely the wrong height! When I stood on it I was raised two feet above the ground! It’s kind of hard to explain but when you stand that high above the ground, you physically can’t bend your knees to reach the sink or the counter without the threat of unbalancing and slipping off. I also didn’t need to be two foot in the air every time I wanted to reach the lowest shelf of the cupboard- my family were mindful enough at least, to put most of what I used on a daily basis there. The only other option was to kneel on the stool for prolonged periods of time to be at the right height. but that was uncomfortable! My knees began to hurt so I stopped.

My brother didn’t see fit to replace the stool and no one else missed it like I did- no one else needed it quite like I did- so I wasn’t allowed to complain about it. Instead of replacing it myself- after all, I wasn’t the one who broke it- I do the stubborn thing and force myself to manage without it. My elbows may be by my shoulders, or I may be kneeling on the stool in front of the cooker flames just so that I can see into the cooking pot, but I still do everything that I need to do.

I guess that I’ve always been a bit stubborn. I remember, when I took a GCSE in Textiles, I reached the medals of the sewing machines reasonably well and got on with my practical work just fine. This made me so happy because I felt almost the same as all of my peers in the class. However, the technology department saw fit to arrange for the construction of a wooden pallet which slotted under the desk onto the floor. There was no need for me to feel quite as targeted by this as I did because the wooden block was meant to make the equipment more accessible to me by raising the pedal. It was meant to be a positive thing. Unfortunately, at the time, I couldn’t see it that way. I couldn’t help but feel singled out and I cried tears of shame. Needless to say, I refused to use it. I never touched it. Not even once. I told you I was stubborn.

It’s a pity because something I would have appreciated would have been making the jigsaw in the Resistant Materials Room more accessible. I learned for the first time how to utilise the incredibly sharp rotating blade which moved at incredibly fast speeds. There I would be, kneeling on a stool so that I could see what I was doing and be able to move the object forward towards the blade at the correct angle. The jigsaw was fastened to the counter and if you didn’t hold the material you were using tightly enough, the object you were holding would escape from you and rattle alarmingly around the teeth of the saw. My fear was one that one day I would get startled and topple off the stool backwards, injuring myself in the process. I felt confined and less mobile kneeling on the stool and I didn’t even want to think about falling forward onto the jigsaw! It just occurs to me now to wonder why I never spoke up. Why didn’t I say something about my struggle that a low stool would have alleviated? Things would have been a lot easier. I think that I’m just so used to getting on with the resources that are already available in all parts of my life rather than go out of my way to get what I need. Get a suitcase down from the top of my wardrobe? No problem. Put a board game back on top of my mother’s wardrobe? No sweat. It’ll be difficult but I get things done. Just don’t ask me how.

Anyway, that was thirteen years ago. The stool-less situation continued until my older sister Aysha glanced at me one day recently and asked me what I had been doing.
“I was washing the dishes,” I replied.
“Yes, but why is your chest wet Fatema?” she wondered curiously.
“That’s what happens when you’re shorter,” I sighed miserably.
My older sister is married and she has lived in her own house for about five years now. The next time I went to stay over at her house after we had this conversation, I noticed something new in the kitchen- a low stool, about fifteen centimetres high. I used it every day. No longer did I have to drag a heavy, solid wooden chair from the living room to the kitchen every time that I wanted to reach ingredients for myself and cook or bake. Everything that I needed to do in her kitchen, I could do more comfortably.

Then, each time I returned home, I would return to a kitchen where even getting a glass for water was sometimes slightly less than straightforward. You see, the tall stool is sometimes moved from the kitchen- I’ve yet to know why the person who removes it doesn’t put it back- so that when I need it, it isn’t there. I would get so frustrated that rather than hunting it down and fetching it back myself, I would place a foot on the washing machine door thereby raising myself to reach a glass from the cupboard. Okay, I’ll be honest, at other times I would just be frustrated at being so small.  At those times, dragging the tall stool across the kitchen annoyed me. To get myself a glass, I would disregard it and place my foot on the washing machine door anyway.
My older brother got irritated when he caught sight me doing this because he thought that I would break the washing machine door over time (I won’t). He told me never to do it again but he never once considered my need for that little black stool. I doubt he even remembers that it existed which makes me furious because I think about it every day. I don’t feel comfortable enough to request that my family leave a glass on the draining board at all times for me to access.
“Sure,” I thought bitterly, “I’ll stop stepping on the washing machine when I stop being so short or when I stop being frustrated about it.”

I hate being so short. It’s one of the reasons why I don’t want to learn how to drive. When I catch the bus, I’m the same as every other passenger travelling alongside me, but the thought of getting into a car especially adapted for me makes me feel embarrassed about myself and different from other drivers in an awfully obvious way that makes me squirm. People think that you get used to being short just because you’re born that way but it’s been more than quarter of a century and I haven’t gotten used to it yet so I’m pretty sure that I never will. I know that I should be more grateful. After all, people need all sorts of accessibility equipment to move, talk, hear, see and even simply to breathe. However, maybe I could take some steps towards being patient. I’m going to stop stepping on the washing machine from now on. I could find a driving instructor to accommodate me…and maybe, just maybe, I’ll even let go of my stubbornness and buy a little stool.

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Perito Prize Winners

A Thank You From Changing Places – The Perito Prize Charity 2019

 

 

Dear Perito Prize Winners & Competition Entrants,

We are delighted to to receive the donation of £100 from the sale of the Perito Prize Anthology 2019 to Muscular Dystrophy UK. We know we can beat muscle-wasting conditions more quickly by working together so thank you for all your support. Please extend our thanks to everyone who supported and contributed so kindly towards this.

Muscular Dystrophy UK know that every day counts for people with progressive conditions. That’s why we fund pioneering research to improve the lives of people today and transform those of future generations. And why we’re driving change so that muscular dystrophy becomes better recognised, people get the best care and support and potential therapeutic drugs reach people faster.

With your support we can be here for everyone affected today, tomorrow and every next day. Together we will bring forward the day when we beat muscular dystrophy.

If you have any questions about previous or future donations, please call our fundraising hotline on 0300 012 0172 (Mon-Fri, 9am-5pm).

Thank you again for your generous support.

Kind regards

Categories
Perito Prize Winners

Introduction To The Judges of 2020’s Perito Prize

The Perito Prize welcomes 3 new judges for the 2020 competition. Find out more about them in this article.

 

Caroline Casey
Caroline Casey founder of the Valuable500
Caroline Casey. Founder Of the Valuable500.

Caroline Casey is an award-winning social entrepreneur and founder of The Valuable 500 – a catalyst for an inclusion revolution that exists to position disability equally on the global business leadership agenda.

Committed to building a global movement on inclusive business for the 1.3 billion people in the world with a disability, over the past two decades she has set up several organisations and initiatives centred on disability business inclusion.

Her latest initiative, The Valuable 500, is a campaign to get 500 businesses to commit to put disability inclusion on their leadership agendas.  Launched at the World Economic Forum Annual Summit in 2019, Casey succeeded in bringing disability inclusion onto the main stage at DAVOS for the first time ever with the support of global business leaders.

The Valuable 500 is supported by a host of global leaders including Sir Richard Branson, and Paul Polman, and global brands including Microsoft and Sky.

Caroline is also a TED speaker, Ashoka Fellow, Eisenhower Fellow, a past advisor for the Clinton Global Initiative, a One Young World Counsellor and is a Young Global Leader of the World Economic Forum. Check out here website here www.thevaluable500.com

You can hear more from Caroline on the Perito podcast.

 

 

 

Abby Crawford
An image of Abby Crawford who won the Perito Prize 2019 and is a judge on the 2020 Perito Prize
Abby Crawford, Winner Of The Perito Prize 2019

Abby was the winner of the 2019 Perito Prize with the story ‘Leg User’, inspired by a family friend whose accessibility trials and tribulations could form a novel (if only she had the time to write it!) She heads up the Equalities Team at the London Fire Brigade, working with staff to create inclusive cultures across London’s fire stations.  She is an avid outdoor swimmer, enjoys creative writing and lives in London with her partner and their poodle, Debs.

Check out Abby’s appearance on the Perito podcast too.

 

 

 

Gavin Neate
A portrait of Gavin Neate founder of Neatebox
Gavin Neate Founder Of Neatebox

Gavin’s background with Guide Dogs UK as a Mobility Instructor for 18 years led him to building a comprehensive knowledge of visual impairment and the wider disability sector along with an ever increasing interest in assistive technology. His mission is to create a truly scalable and sustainable organisation that provides solutions to the challenges faced by our society. He wants to build smart solutions based on the challenges disabled people face every day.

Neatebox have two key products. The Welcome App and Button. Which you can find out more about here https://www.neatebox.com.

You can also catch Gavin discussing his work and products on the Perito ‘Our World. Without Boundaries’ Podcast.

 

 

 

 

 

 

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Blog

Our World. Without Boundaries Podcast Ep8 In The ‘Inclusive Designer Series’ With Gregory Mann On Dementia (Mini Series Ep2)

 In this episode we discuss dementia with Gregory Mann – episode 2 in the vision mini series. 

 

Perito:     Welcome to the Perito Podcast Our World Without Boundaries, a Podcast all about creating inclusive environments and about helping us all become experts at identifying exclusion and create an inclusive and accessible world for everyone, everywhere.  Perito believes that we are all designers in some capacity even if we aren’t the Principal Designers like Town Planners or Architects.  This Podcast is out there to help everybody become a community expert in recognising exclusion and someone who can then contribute to a design process and make or create better inclusive design decisions.  The Podcast will help listeners learn from the day to day experiences and challenges of our interviewees and the topics we cover so that we will all have a greater understanding of what can exclude people from participating and what can be done to create our world without boundaries.  Now in our new mini-series we’re looking specifically at vision and we’re joined again by Optometrist, Gregory Mann from Mann and Francis.  This mini-series was conceived as a specific tool to help people understand impairments associated with the eye, but also the impact of temporary issues that can make short but just a severe impact on people’s lives, so in this episode we’ll be specifically looking at dementia.  Hello Greg, welcome back thanks for joining us.

Greg:        Hi thanks for having me back so soon.

Perito:     The last Podcast was particularly useful.  You’ve already done one quick fire round but let’s try another one ready?

Greg:        Go ahead.

Perito:     (1.18) You’ve already done one quick fire round but let’s try another one ready?

Greg:        Go ahead.

Perito:     (1.19) What is the greatest global challenge we face, as say global population?

Greg:        I’m going to say artificial intelligence, closely followed by global warming.

Perito:     (1.30) Is there likely to be artificial intelligence if there’s no one to build it?

Greg:        Well that’s true, good point, I think artificial intelligence will be quicker than global warming.  Your dead right if global warming hits us first then we won’t have to worry about the artificial intelligence.

Perito:     No.

Greg:        Of course, artificial intelligence could get us around the global warming issue so.

Perito:     (1.51) What couldn’t you live without?

Greg:        I’m not too worried about my phone but I must admit I use the internet a lot ever since I first got.

Perito:     (1.59) What’s the best gift you’ve ever given someone?

Greg:        I gave my girlfriend a book called “Quiet” a while ago and it’s a book for introverts and she found it really, really helpful, I’ve heard really good things from it so whilst I’m not particularly introverted so I haven’t read it myself it helped her a lot so yeah I’d Quiet for Introverts, she’s given it to a few other people.

Perito:     (2.20) Your favourite beverage?

Greg:        This is the child in me come through a little bit here, I’ve never been one for hot drinks or fizzy drinks or sweet drinks, I largely just drink water but I’m a big fan of milkshakes.

Perito:     (2.31) You could have water, water’s a good choice for a favourite beverage, that counts.

Greg:        Most frequent would definitely be water but it’s a bit embarrassing really but if I go to a really nice sort of American diner or something and everyone else is having American beers, Budweiser’s and things, I dare say I’m tempted by the ice cream milkshake.  (laughter)

Perito:     (2.52) That’s good enough, since some people might be starting out with this episode can you tell us a little bit about who you are or where you come from and how you’ve come into contact with dementia as an optician as well maybe towards the end of.

Greg:        Sure yeah so in brief I’m an Optometrist, an Optometrist is the person who works in a high street opticians, they’re the people who actually examine your eyes, ask you to read the letters, is it better with the lens, without, establish a prescription for your spectacles if you need them and we screen for eye disease, we look at the health of the eye to make sure the eye is functioning.  So I started out in a high street but since then I’ve been working almost exclusively in domiciliary care, domiciliary is by a home visit care homes and individual homes performing a home visit in service.  Before this Podcast I knew we’d be talking about dementia so I was working out just roughly how many patients I meet in a given year with dementia and if I had to guess just a rough idea I’d probably look at at least 1500 pairs of eyes a year, something like that and off the top of my head between 30% and 50% of those people will have dementia in some capacity or another, so to take a wild guess I’m probably seeing 500 to 1000 people with dementia a year, I’m spending between 15 and 20 minutes with each of those patients.

Perito:     (4.09) That is a huge number of people so we’ll come to the volume of this but what was interesting talking to the Visual Impairment Charity I was dealing with the other day they said 80% of their members are actually people with age related Macular Degeneration and following on from the last Podcast I realised just how important this was, but when the lady who was leading the charity said that I just thought, wow this is, so combine that with obviously the number of people with dementia as well these are really, really, really big problems that are impacting everybody.

Greg:        Yeah, almost it’s not a guarantee thank goodness, but yeah the odds are, I wouldn’t like to take a guess of what percentage of people have some form of Macular Degeneration by the time they get to 90 or some form of dementia by the time they get to 90 but it would be a big number, it could well be between 20% and 30% of all 90 year olds could have both Macular Degeneration and some dementia and of course you may well have both of course, we’ll come to this later, but last time we talked about various eye diseases and really what each eye disease meant and how that affected someone’s vision but there’s nothing to say you can’t have more than one eye disease and there’s nothing to say you can’t have dementia or maybe even multiple types of dementia and eye disease and when you start combining some dementia, some eye disease, some hearing impairment and some mobility issues then you’re really getting someone whose got a real uphill struggle and needs as much help as they can get.

Perito:     (5.34) Now coming back dementia before I started Perito, I’ve got to be honest, I wasn’t really aware of dementia as the catchall term that it is, I kind of had this vision that Alzheimer’s was something that was very separate and dementia was something that was very separate because people seemed to use them, at least my impression, these weren’t interchangeable terms they just kind of would seem very separate.  Just how many types of dementia are there, and can you just tell us, am I right in thinking that dementia is literally the overarching catchall term that it seems to be and Alzheimer’s fit into underneath that?

Greg:        Yes exactly that so dementia is the collective term for degeneration and malfunction of the brain in the context we’re talking about and within the term of dementia there are lots and lots of different types of dementia, in honesty at one point I remember there being about 100 to 120 types of dementia, this was probably 8 years ago or something, we thought there was about 100 to 120 different types or different forms of dementia presented in 100 different distinct ways, well as actually having done a bit of research for this Podcast there are now at least 400 types of dementia, we won’t talk about all those of course but it appears to be such a broad topic and that’s purely because the brain is so vastly complicated that there are clearly 400 different ways in which the brain can deteriorate and present as a form of confusion and dementia.

Perito:     (6.54) And I guess if we harp back to your, we briefly joked about the idea of cost between terminating Futurama but you were talking about the idea of the brain being extremely important for vision, so if this is starting to affect the brain then vision is, at least there seems to be a logical path to the eye as being an issue and if the brain stops doing the calculations in the correct way then I can see why the brain is confusing the eye.

Greg:        Yeah absolutely, so that’s possibly the most important thing to think about when we think about eyes and we think about vision, is that the eyes and the brain work together in order for us to see and we can’t see well unless both of those things are working properly, so last week we talked about how fundamental the eye was for us to see which is fairly obvious, people think that well if the eye isn’t working very well someone’s vision isn’t going to be very well affected but really the eye is if anything the more straight forward part of the seeing process, all the eye is seeing is taking in light which is reflecting off the objects we see around us and converting it into electrical signals, those electrical signals then go to the brain and it’s the brain’s job to decode everything and translate it into the real world that we’re seeing around us and even if the eye is doing a perfectly sublime job if the brain isn’t able to interpret those electrical signals properly then we won’t see very well or we may not see things in the way and the perspective that you and I see things.  So I do want to briefly talk about the different types of dementia, we said earlier there were 400 different types but if I may I’ll just go through sort of 3 or 4 of the main types.

Perito:     Yeah, yeah absolutely Greg, that’s fine.

Greg:        And we can refer back to those a little bit later.  You mentioned Alzheimer’s earlier on, that’s one of the most common and frequently found forms of dementia, this is sort of the text book type that everyone thinks about when they think of dementia, so its gradual decline of the brain and it’s function.  It presents in the fairly text book forms of dementia, it’s the simple forgetfulness, someone trying to talk to you but they can’t think of that obvious word and that word might be cup or fire engine or dog or anything but it just, it’s really quite frustrating for them if they can’t think of that word in that’s early presentations it’s sometimes even diagnosed by someone who can’t make their way home, they drive to the shops like they use to all the time and yet suddenly they find themselves getting quite lost and getting a bit confused on the way home, or often their short term memories quite frequently are affected with Alzheimer’s as well, so they may well be a swimming pool what happened you know 20 years ago or 50 years ago but they really can’t remember what they did yesterday or what they had for lunch or anything like that.  So that’s Alzheimer’s that’s one of the main ones.  The other one which a lot of people have heard of is Vascular Dementia, have you encountered that on the street so to speak James?

Perito:     (9.32) Yes I think Vascular’ s becoming more noticeable isn’t it because I think people are beginning to work out that with the heart disease and also I think it’s something to link to plaque as well isn’t it, plaque on your teeth if you’re not brushing your teeth properly can impact in older age on vascular.

Greg:        Interesting a lot, I have to admit I wasn’t aware of that, a lot of forms of dementia are visible under brain scans by examining the brain and you could find plaques build-up of deposits and waste products on parts of the brain, certainly that’s more common with Louis Body Dementia which we’ll come to a bit later, so I didn’t know it was correlated to poor dental hygiene I must say, but Vascular Dementia everyone always worries about what they can do to not get dementia because obviously everyone wants to avoid getting it, a lot of dementia is bad luck and coded in our DNA I’m afraid, however Vascular Dementia is something that we can control a little bit, everyone’s familiar with a stroke, a stroke being a bleed of the brain which then starves the brain of oxygen and that affects the brain, Vascular Dementia in a way works in quite a similar way so if the blood supply is affected to your brain and we look at what causes blood supply to be affected so that’s diabetes, blood pressure, cholesterol, obesity all those other sort of other factors that we can control, if the blood supply to the brain is affected and it’s much slower than a stroke of course, it doesn’t happen overnight, it happens gradually over years then our brain is slowly dying off and that presents in poor brain function and therefore that’s a form of dementia.  So in many ways it presents in a similar way to the Alzheimer symptoms we talked about before, the forgetfulness, getting lost on the way home, poor short term memory but it is in some ways it presents in a similar way but it is quite different but the mechanism by which Vascular Dementia is caused is quite different, if we’re looking at the systemic factors that we would call the whole body factors, blood pressure, cholesterol, diabetes all that sort of stuff they are contributing to the increased chance of Vascular Dementia.

Perito:     (11.26) That’s good Greg thanks, anymore for, you mentioned Louis Body is that a big one as well?

Greg:        Again we’re only talking about 3 or 4 today but this is one of the more common one as well and Louis Body its main reputation are hallucinations, really quite prone to causing hallucinations and of course this isn’t the eye allowing us to see hallucinations or triggering hallucinations this is the brain that causes the hallucinations and hallucinations can be visual or they can affect our hearing, they can be auditory as well.  So often people with Louis Body Dementia will have really quite severe periods of confusion and it can also really affect their sleeping pattern as well, it’s not unusual for Louis Body to fall asleep most of the day and be up and about most of the night.

Perito:     (12.06) That just sounds very distressing perhaps more than the others.  That’s seems like it’s going to impact physically on your sleep and life as well so it’s quite interesting.

Greg:        Yeah absolutely, I wouldn’t like to say which forms of dementia were the best or the worst to have but definitely a lot of, some forms of dementia don’t trouble the patients quite as much, they more trouble the family members who find it very upsetting, whereas Louis Body Dementia if these hallucinations are distressing for the patient that can really work them up.  The final form of dementia I wanted to talk about which is Frontotemporal Dementia this again is another one of the more common ones and this can affect again some of the text book characteristics of dementia that people think about can really affect their behaviour, their personality changes, their ability to speak and sometimes these patients with dementia they lack tact so the text book form of someone with Frontotemporal Dementia they may well be really quite in your face, they may be quite aggressive, despite being a very quiet and peaceful individual who never swore in their daily life before and now suddenly their speaking all sorts of blue language and they may also struggle to speak and comprehend what you’re saying to them.  So those are probably the four of the most common forms of dementia and we’ve put them in these categories but of course just because someone has a certain type of symptom it doesn’t mean they have that type of dementia it’s all up to the professionals to establish this.

Perito:     (13.26) If we turning back to eye issues so we briefly mentioned that moments ago how does dementia then impact on a person’s vision?

Greg:        That’s a really good question and it’s one that I’ve been trying to figure out for the past 10 years, so going back to what I said earlier the first thing to stress is that even if the eyes are working perfectly someone could have dementia at the age of 82 and they could have the eyes as good as any 40 year old, they’re eyes could be absolutely fantastic but if the brain isn’t interpreting what the eyes are seeing then they will perceive, their vision will appear to be really quite badly affected and there’s been quite a lot of research on it but because the brain is so broad and so easily affected in many, many different ways and with 400 different types of dementia all affecting the brain in different ways it’s really hard to be certain how that person may interpret the world.  However we can talk about some general rules of thumb or things that we do often find are affected and it might help us sort of thing about how someone generally might see, so what I would say is when people ask me this, what it is like to see if someone has bad dementia, I often say it’s a bit like being really, really drunk on alcohol, or perhaps even heavily under the influence of psychedelic drugs, now I don’t about you James but I’ve never taken psychedelic drugs and I’m not a big drinker either.

Perito:     No nor me no.

Greg:        So I’m not suggesting for the research purposes only family members with dementia start taking LSD or some really strong psychedelic to try and emphasise with their family members.

Perito:     (14.53) I think we’ve seen it recreated on television enough times haven’t we in various movies and stuff.

Greg:        Yeah we have, absolutely and I have, when I’ve seen those I’m trying to think of a show where it has but when I’ve seen those, it’s a movie star or something, they’ve been a James Bond type villain, a person has been drugged with some kind of, in their whiskey or something and then they wake up and their really confused and delusional for a while I often think god I bet that’s what it’s like to have dementia.  So if you think of it a bit like that then you can sort of look around your room or wherever, or your car or wherever people are sitting listening to this and think about what would I be looking and seeing if I had bad dementia or if I was on a psychedelic form of drug.

Perito:     (15.35) Well I’d be feeling scared and vulnerable I suspect.

Greg:        What instantly yeah, straight off and you would probably be aware that something wasn’t quite right but you might not know what, and is it you or is it everyone else around you whose not, people with dementia often to note are fairly cautious or nervous or easily scared because things seem new to them but a few symptoms or a few ways of thinking about how someone with dementia may see, well we talked about Louis Body Dementia they may well have hallucinations, so the hallucinations could be triggered by something, so they may for example see a shadow on the floor and even though it’s the shadow of a chair or a vase their brain may well reinterpret that into looking something completely different, they may think it’s a dog on the floor, they may think it’s a hole in the floor or an earthquake has just suddenly happened and the floor is separated, or it may not be even triggered by an object at all it might be completely out of the blue.  I’ve had patients who will see a double decker bus parked outside in the garage and there’s nothing out there at all so hallucinations are quite a big thing, I suspect again that their perspective on size and distance very likely to be quite far off.

Perito:     (16.41) Well it’s often noted already certainly in inclusive design circles that any dark carpet or any kind of lift shaft, so for instance if there’s a black floor in a lift it appear to people that there’s no floor to the lift and therefore it’s just a lift shaft so that’s why people with dementia often are concerned about going to lifts.  The same with bathrooms as well, so the floor coverings thinking back to this has reminded that actually floors, walls, anything that looks like it could be a void is to be avoided.

Greg:        Yeah avoided, good pun, yeah, no your dead right that’s absolutely true and I was gonna come a bit later on to a story along those lines actually but yeah shadows and the brain can try and interpret things as best it can and come up with completely the wrong solution, so it may well be that cup of tea that you’ve given your family member, you’ve given that patient it might be well within arms reach but it might look like it’s completely across the room or the light switch that isn’t completely across the room they may try to find themselves trying to touch towards it because it looks like it’s really close there.  I often see people with dementia who will at something on the floor and they lean forwards to try and pick it up and it’s either not there or it’s a lot closer or a lot further away than they think.  So perspective and size can be really thrown off and like you say when you talk about shadows and dark areas in a room that can really distress someone with dementia.  I don’t know if you remember the sort of childhood toys kaleidoscopes.

Perito:     Yep kaleidoscopes, yeah I do too.

Greg:        They’re sort of telescope type things you’d look through and you’d twist them and it would create all these bizarre shapes and patterns but I think to think of someone who has dementia might be like looking through those a little bit, some weird perspective on colours and shapes will suddenly change as you rotate the kaleidoscope and it may well be similar to that for dementia.  Light is another big one, sun and glare will frequently cause people with dementia to be quite dazzled, we talked about different types of glare last time in the previous Podcast, it’s known that people with dementia their pupil response is slower so therefore a little more prone to glare anyway.  Television we talked about the lack of perspective it may well look like the television is either closer or further away or even worse it may look like it’s really people if you have bad dementia, they may well look at the television and think they’re talking to another person but it may just lack the perspective and lack the fact that it’s not a 3D image.

Perito:     (18.53) Well I’m guessing as well because the bigger the television the bigger people’s heads are on the screens must be reinforcing that message as well.

Greg:        Yeah absolutely.

Perito:     (19.01) If they had TV’s on the wall more above perhaps there are other things you could do that.

Greg:        Yes I suppose that one could say that it might be a situation in which technology perhaps hasn’t given people with dementia a real helping hand, people with dementia probably remember the televisions they had when they were in their 40’s, you know in the 60’s or 70’s they may well have had a small television but it’s the size of a small microwave and then when we put modern televisions which are 50” or 60” on the wall they may not recognise that as a television, it may be even easier to confuse with a real image or something.  Other factors towards dementia which could trigger a bit of confusion for someone, and I think we need to be a bit careful about over stimulating someone with dementia, if they’ve got the radio on and a TV on, it’s very bright, they’ve got a busy window scene and there’s people around the room as well that well be too much stimulus for that person, it might be quite overwhelming if we think that their vision isn’t very good or their vision sometimes struggles processing the right image if it’s been over stimulated so their brain is busy listening and paying attention outside and having to deal with other forms of stimulation that well be that that’s a bit overwhelming for someone with dementia.  We’re also aware that their colour vision is affected with dementia as well so their brain may well either not see so much colour or it may see the wrong colours and again if you talked about dark patterns and dark colours that well look like a void, my personal opinion is that a really quite a complicated or intricate pattern on a carpet, you know some of them are almost psychedelic just to look at them and it may well feel if you have dementia and your looking at a really complicated pattern on a carpet or even just a simple one but very bright one, almost like if someone had a chessboard style kitchen lino for example that well trigger some kind of a peculiar surface like that.

Perito:     (20.38) Stripes and colour patterns is an issue for many people and they just actually remind me of when you talking there about, certainly with tinnitus, what tends to happen with tinnitus which is an audio problem and the tinnitus operates on different frequencies for different people so it will eliminate voice for some people, high pitch, low pitch, and the humming and the constant noise in the ears will cause that sort of essentially lack of distinction between the noise that you can hear hence essentially making you deaf, but if we apply that to a similar sort of logic to like coloured patterns if we’re thinking of the kaleidoscope and these coloured patterns maybe the coloured patterns are simply forming an extension of the vision through the kaleidoscope, so if you’ve already got these multi patterns and this relatively very unpredictable vision system anyway and then you’ve got an extension of that which is appearing in the real world then I can see why that might be a problem, and they essentially sit over each other.

Greg:        Yeah it could well be that like you say, some areas are almost eliminated, other colours or other shapes are massively over estimated and over stimulated into the brain.  Other things how dementia affects peoples vision well it can affect their ability to track eye movements and motion so a really busy scene, imagine if you are sitting on a high street having a cup of coffee, people watching outside, lots of people walking past, if you had dementia you would struggle to track all those people walking past, your ability to look at someone as they walk across and track them with your eye movements there’s actually quite a sophisticated mechanism to track someone there, you’re not consequentially using your eye muscles it’s a sub-conscious thing, that is affected with dementia so people with dementia it’s often thought that if it’s the sort of dementia that affects their eye movements, it’s often thought that they don’t see the world in a fluid moving way, they almost see it as a series of still photographs.  So yeah eye movements are bad or are often affected, so a busy world or an over stimulated world is far more overwhelming for someone with dementia anyway, certainly when it comes to their eye movements it is.  They may well struggle with contrast a little bit so that a poorer contrast environment makes it harder for their brain, their eyes and their brain have to work harder to see in an environment with poor contrast and you talked about Macular Degeneration, well there is evidence to say that another eye disease we talked about, Glaucoma which causes tunnel vision or reduced peripheral vision, there is evidence to say that people with dementia irrespective of whether they have any eye disease will also have reduced peripheral vision, similar, it will feel a bit so the world around them as their brain has fewer and fewer resources it seems to me that their brain starts shutting off what it considers less important vision, it shuts down the periphery just so that you’re really concentrating and doing your best to interpret the world right in front of your eyes.

Perito:     (23.26) That’s brilliant Greg thank you for that, so how do glasses play into dementia?

Greg:        That’s a great question and obviously one that I ask myself multiple times a day just about every day, there’s definitely a real decision to make when it comes to someone with dementia and whether glasses are appropriate for them, and there’s a real balance to be had between is giving someone with dementia glasses going to cause more problems or is it going to fix them more problems than it’s going to cause, and there’s definitely a middle ground between how much better can we make their vision versus how inconvenient or distressing or distracting or another thing for that person with dementia to have worry about, think about or lose to the glasses cause.  However if we’re talking, we’ve talked earlier on about how the brain is struggling to interpret the world around it if we can give it a bit of a helping hand by making sure that the eye is doing its part as best as well possibly can, then with the help of glasses if needs be then to me it makes a lot of sense to give the brain the biggest head start if we can really.  Generally depending on how strong those glasses are and what they’re for, we may well think, we may well decide that glasses are appropriate perhaps for general use because if they make everything in front of that person’s face clearer and they’ve just got one pair of glasses they need to wear them all the time and the person’s quite happily wearing glasses because perhaps they’ve worn them for the past 30 years and it’s not unusual for that person, they’re quite use to having something on their face, we may well think well that’s perfectly appropriate let’s give them some glasses and make life easier for them.  If on the other hand they don’t need glasses for general use but they do need glasses like most people with age just for some close work that becomes perhaps a bit more of a complicated decision because is that person going to end up wearing the glasses for the wrong thing, if their wearing them all the time when they should only be wearing them for reading then it may well mean that their going to, more likely to fall over, the vision around them half the time will be worse than it is better.  So that’s a bit of a tricky decision to make but it’s one best done with the carers or the family members having factored in what that person likes to do, what their hobbies and how confusing and distracting for them to have spectacles, but as a rule of thumb we’re trying to minimise the symptoms and make the eye do the very best job it possibly could and when we start factoring in, did they wear glasses when they were young, are they quite happy with wearing glasses, it is going to reduce the chance of them falling or do they think that they’re 35 years old and they didn’t wear glasses at 35 so they’ll keep saying, “well those aren’t my glasses, what are they doing, they’re not mine, they’re not mine” is that going to cause them more distress than its going to fix.

Perito:     (25.51) What’s becoming very clear to me Greg is just how important the eyes are for people with dementia, not only can they be an avenue for pain and distress and worry because of the way things appear but also there’s a conduit out so if glasses are needed to help that and shape the, and I suppose optimise the perception with the eye/brain combination than it’s vital.  Do you agree with that?

Greg:        Yeah, there’s almost always to be had a discussion on is it worth the extra hassle because they are a bit more hassle.  If I have a patient with, if we go through a few scenarios, so I may well have a patient whose been wearing glasses most of their adult life anyway and their very familiar with the type of spectacles they have, they recognise that it’s their spectacles so if we decide well we can improve that person’s vision, we can hopefully make the best possible job we can in the hope that then the brain is going to make things a little bit easier on the brain, we may well decide okay well what colours does that person like, what sort of frame are they wearing at the moment, do we want to give them a frame quite similar so that it’s a very easy transition for that person to have new spectacles.  If they’re use to wearing perhaps a Bifocal lens or a Varifocal lens and they’re use to that and it doesn’t cause them any trouble, I may well keep them in the same style of spectacle lens because it’s just less of a transition for someone.  If on the other hand I have another patient who really needs glasses for reading, they cannot see anything if it’s right in front of them but they can walk around the room, they can see the television, they can recognise people from across the room without spectacles that might be a situation on which we may decide, well does this person have the attention span and the interest levels to be able to look at things close up and if they really have, if they’re never much of a reader, they really are interested at looking at photographs or pictures or they’re old wedding albums or whatever it is, we may well say well giving them spectacles is probably more hassle, they’ll probably end up losing them, or wearing them for the wrong thing or they may well think they’re 32 years old and they don’t need glasses as you do, so leave them alone they’re not theirs, or it might be that we give someone some glasses for purely close work because once a week a family member comes round and sits down and spends time with them going through some old family photographs, and that’s a really important part of dementia is stimulating the memory and trying to keep people’s memory and attention active, so if they’re doing activities most of the week and then they have a dedicated time when they’re perhaps doing some family time looking through photographs, it may well be that we give them a pair of glasses but 9 hours of the day they’re kept in a drawer or perhaps the family member looks after them and it’s only when they’re doing a specific task that then the glasses come out just for that one task.

Perito:     (28.21) So does eye disease come in here as well with dementia is that going to be a problem because that’s going to be a negative I guess isn’t it immediately, we talked briefly about that at the beginning?

Greg:        Yeah absolutely so when we’ve talked about the eye, even if the eye does a perfect job, someone with dementia may well have quite poor vision because of the reason we’ve discussed above, when we start factoring in eye disease it can really make life difficult, they can definitely exacerbate all the above and unfortunately if someone has, for example, cataract, a really common eye disease, that may well mean that the eye isn’t doing a perfect job so the signals that are going to the brain are already impaired as a result of the cataract.  We talked about eye disease in the previous condition but very briefly about cataracts and how that can reduce the contrast, reduce someone’s ability to see clearly and make someone more prone to glare, so when we factor in the fact that someone’s pupil isn’t responding quite as well because they’ve got dementia, they’re more prone to glare anyway.  If we think about perhaps Macular Degeneration that’s poor central vision, if someone has bad dementia and people or the carers feel that their peripheral vision is very likely affected they tend not to notice you when you walk into a room, until you start walking in front of them and then they notice you, then it may well be when you combine that with Macular Degeneration they have poor central as well.  It may well be that their vision is really quite poor indeed and ultimately it’s going to exacerbate a lot of the above, when it comes to dementia and eye disease there’s a really complicated discussion to be had with the patient, their carers or family members, and the profession or as to whether what can we do to minimise the eye disease, can spectacles help things a bit, can they improve someone’s vision and do we need to think about operations, or seeing a referral and attending an appointment at the eye hospital as to whether we can alleviate that eye disease so that means a cataract operation, perhaps that means eye drops.

Perito:     (30.05) Does the same sort of thing replace hearing?

Greg:        That’s a great question and I won’t talk too much about hearing because I’m not an Audiologist and I’m sure an Audiologist wouldn’t talk too much about eyes but my personal suspicion is that much like vision if someone’s hearing is impaired then that will really exacerbate their ability to interpret the world around them.  We’ve talked that certain frequencies can be affected more than others, it may well be the case that a certain person has real trouble with a certain tone of voice so they may not be able to hear their wife, the gentleman may not be able to hear his elderly wife talking if she’s got a higher pitched voice but he may well be able to hear deeper tones and octaves of individuals or frequently gentlemen who have got a deep voice, so definitely hearing is a really key part of making someone’s brains job easier, reducing the strain on the brain so that the brain can interpret things the best it can.

Perito:     (31.04) Greg, that’s really useful classic information because you’ve got such a wealth of knowledge on the subjects.  What would be interesting is to share that knowledge with people in a way maybe more a story way so it’s easier to understand exactly how people are experiencing dementia, do you have any stories you’d like to share that would be good examples for people?

Greg:        Yeah sure I’d love to, so some of these are eye related, some of these are just things that I’ve picked up so I should stress that I’ve had very, very little formal training on dementia, so I try not to talk too much about general ways to deal with dementia but I can talk about what’s worked for me in practice and when I’ve worked in a care home or with some carers who have really, really top end and really, really fantastic with dementia, I pick up the odd story or I see the odd thing and I do pick up a few things from them.  The first one I wanted to talk to you was about a gentleman who wanted to have a wee and every time he wanted to have a wee he would stand 3’ away from the lavatory.  He didn’t like sitting down to have a wee, he wanted to stand up like all gentleman do of course but he would not walk right in front of the lavatory and as a result of course it was really quite a messy job and after some weeks the carers are starting to get really, really frustrated that every time he wanted to go to the bathroom there was a bit of a mess and some cleaning up required.  However, one person, a carer who had a lot more experience with dementia, went in and had a look at this person’s bathroom and their set-up and they find that the person’s bathroom was well lit, it was very appropriate for the patient, however he had a very large and dark bathroom mat, and this is probably going to trigger off something you said earlier on James.

Perito:     Yes, yes.

Greg:        He decided that persons’ vision was such that he saw that dark bathroom mat, I don’t know what style it was a dark purple or something and to him it looked like a hole, so why would he stand close to the bathroom, the lavatory because otherwise he’d fall down the manhole.  All they had to do was remove the bathroom mat, put a lighter colour bathroom mat in front of it and suddenly there he was standing 3” away from the lavatory like you and I would.  So it sounds silly.

Perito:     Great story.

Greg:        But trying to see the worlds through someone’s eyes and interpreting it as the best they can, can instantly reflect in a complete change in their behaviour, I’ve got another story.

Perito:     But it was so logical for the guy not to want to do that, so despite all his situation, the stress his under, the logic and the self-preservation element was still there, so I need to go to the toilet but there’s no way I’m going over that bit and just like you would.

Greg:        Yeah well absolutely and you have to be a bit careful saying this but my opinion is that people with dementia often exhibit behaviours and patterns that are quite, I don’t want to mean primitive but they’re definitely quite primal, almost childlike or animalistic, so what are children afraid of, they’re afraid of falling, they’re afraid of loud noises, they’re afraid of busyness, they’re afraid of distress, they’re afraid of anything different, any kind of change and I often find that people with dementia are the same thing, those fundamental things that we’ve evolved to be afraid of, they still maintain so falling, you know falling down a hole, that’s a primal and basic fundamental thing that we all try and avoid and that’s what that gentleman was trying to do, so in a way he was far more logical than everyone else was about it and if you try and think about the world through his eyes, could he have seen that as a form of distress, could he have seen that as a risk or a hazard, eliminate the safety hazard, improve the lighting if needs be and suddenly the problem goes away.  The next story I had and this isn’t particularly about eyes but it’s a great one is there was a gentleman who presented in a care home, fairly new to the care home and as it frequently is the case he didn’t have an awful lot of history, he didn’t come with a lot of information and this man was up at 5 o’clock every morning really quite worked up, he’d always try and get out, he’d be pacing up and down the corridors, really quite worked up wanting to do something and they couldn’t work out what it was, did he want a cup of tea, did he want to go to the lavatory, no he just wasn’t happy.  Anyway the carers put a lot of time in trying to work out what was going on and after talking to the family and doing some research they found out that this gentleman, at one point in his life, was a semi-professional rower, which will probably remind you of some echoes of 5am starts and rowing first thing in the morning James.

Perito:     Yeah often unhappily early starts yes.  (laughter)

Greg:        Well this gentleman unlike you, this gentleman was raring to go so they did a bit more research and felt that he was so use to the routine of getting up at dawn, the crack of dawn every day and going for a row, they then felt well what can we do to alleviate that gentleman’s symptoms so they decided that they can get him a boat, so I think they ended up with a canoe of some kind or perhaps just a small rowing boat and they put it in the garden for him.  It was a bit of a feature for other residents to look at, it wasn’t really any kind of a trip hazard and immediately, under supervision of course so he wouldn’t fall, this gentleman was thrilled to bits, he’d go, he’d sit in the boat, he’d mock row through the oars and either though to you and I we may look at that and think well that’s demeaning that’s irresponsible, why are we feeding this gentleman’s delusion.  The principal behind it is what does that man need to make his life more pleasant, how can we alleviate the stress, it’s not up to us to judge what’s demeaning or what’s appropriate, if it fixes the problem and it’s safe why don’t we encourage it, so I just thought that was a lovely story about a gentleman who was so distressed and they got to the solution by looking through the man’s history and taking time to look at what that man did with his life.

Perito:     (36.46) Excellent and have you got anymore for us because it’s very good so far Greg?

Greg:        Yeah a couple more, I had another gentleman also, and a couple more but before we do just going back to that rowing gentleman, other applications for that very similar story it could well be that you’ve got a patient who was a postman, it could well be you had a patient who was a milkman, it could well be you had a patient who was a builder or an accountant, giving the patients anything that allows them to compete in their routine and feel like their contributing or doing some work it may well provide some form of comfort for that person, so a milkman, some empty milk bottles, if he goes around every morning, if it he calms him down and he wants to do it, putting milk bottles at the base of every single door and the whole building it doesn’t cause anyone any harm, as long as their plastic bottles of course.  Another story I wanted to talk about was, this is a bit sad, is I had a gentleman who came up to me, I tested his eyes, we got on well, and he obviously had some dementia but he presented really quite well, he said to me, “there’s a conspiracy going on here” and I think sometimes if you’re dressed well and you’re clearly a visitor a care home often patients will confide in you in environments where they wouldn’t otherwise, you look quite different, you’re not in uniform, they definitely respond in a slightly different way sometimes.  So he wanted to confide in me in something, obviously sort of whenever you hear this you go on full alert and he said to me, “don’t you dare lie to me young man but tell me why am I in the women’s area?” and so I said, “what do you mean?” and he said, “well if I’m not in the women’s area where are all the men?”, now this was a care home, a fairly typical care home it’s probably 25 residents and he was the only male resident in the entire care home, we all know that women live longer than men and that was perhaps a bit unusual to have only just the one gentleman but it does happen from time to time and so I was now faced in a position where what do I tell him, do I tell him well, do I give him a long speech about well men live less longer than women therefore statistically unfortunately most men have passed away that’s why they’re not in care or do I try and say something to him that relieves his symptoms, alleviates his concern and worry but at the same time not wanting to upset him or lie to him, so I said to him, “that they were all at work” and that seemed to make him quite happy, I said to him, “Bob you’ve retired but the other gentleman will be back later, they’re all at work” now I knew he had short term memory so he’ll probably be asking me the same question in an hour, if I knew that he’d be worrying at 6 o’clock why no one was home from work I probably wouldn’t have said it because then that fear would have caused an additional further complication but knowing he had short term memory problems it was less distressing for him to think that he wasn’t in the women’s section the men would be back later.

Perito:     (39.32) So what happened to Bob in the end did he, is he still alive and is he still asking the same questions?

Greg:        I have to admit I haven’t seen Bob for some time but he was, I think, after that he was quite happy with that answer and went back along with his daily business reassured that he wasn’t in the women’s section, he wasn’t in the girl’s section, that generation quite frequently separated gender and how they spent their time.  I think we often find with dementia that as the brain degenerates, patients definitely present with different, they go through phrases of quite a lot of confusion and then they suddenly settle down again and then sometimes they can become more confused and deteriorate and decline a little and then they can settle down again, so I think Bob was, when I met Bob he was definitely in a more agitated state and then a month or two later it is very likely he would have settled down and calmed down and been less concerned that he was in the women’s section, or just eventually accepted the world around him for what it was and not really worried about it too much.

Perito:     (40.32) Okay brilliant thank you Greg anymore from there or shall we move onto the next question?

Greg:        Yes I’ve got one more story, this is not dissimilar to Bob actually and it’s a bit of quandary for your listeners to think about and how they would choose to deal with this situation.  I had a patient who requested a home visit and on visiting there she had two daughters with her, both daughters were very nice really looking to after their mother but they had a really quite different approach to how they would deal with their mother’s dementia.  The mother was constantly asking where her husband was, now the husband sadly had passed away 5 or 10 years before this and we often find with dementia that their short to medium term memory is really badly affected, so whilst the mother recognised her daughters and knew she was with her family she didn’t know where her husband was and it was a really awkward situation because one daughter wanted to tell her mother the truth, she didn’t want to lie to her mum, she felt that her mum should just accept what she said, she wanted to tell her that her husband had died.  However they’d done this before and it had led to real genuine distress from her mother, literally screaming because if you’d found out that your nearest and dearest had just died you’d respond in the same way.  The other daughter preferred a more, a lying approach, a deceitful approach but one that managed that patient’s symptoms arguably in a much calmer way, she would just tell the mother.

Perito:     (41.54) Well it sounds like a white lie doesn’t it, yeah?

Greg:        Yeah, yeah a white lie, that’s a great way, it’s a white lie and she would tell her mother that the husband was at work and he’d be back later to calm her down, so I’m not saying there’s a right or wrong answer here and I think we’ve got to be really careful when it comes to deceiving and lying to our nearest and dearest family members and it may well be that sometimes they can remember that lie and then they’ll challenge you 5 hours later, well why aren’t they back from work yet, so you’ve got to be quite careful but it was just to raise a bit of a dilemma for our listeners is to how do we best deal with these patients and the answer is to how we best deal with these patients and the answer is probably whatever works for them, whatever works for them is a way but consider what works for that person, not what you think is best or what you would like to hear, what makes things most comfortable for that person and achieves your goal of making that person happy.

Perito:     (42.50) You’ve mentioned about the individual and designing for the individual needs, if we come back to the postman and canoe situation, that’s all very well, so that’s very bespoke, have you got any tips, rules of thumb our listeners can do to design better or just understand how to engage with a person with a dementia on a general basis, so are there things that the majority of people can do to help the majority of patients or citizens who might access or interact with their services or design?

Greg:        Yeah sure great question, I’ll definitely keep this mostly to do with eyes but a few little tips that I’ve picked up in the past in general I definitely suggest getting their ears and eyes looked at and examined properly and preferably in a domiciliary setting.  You’ll often find that people who specialise in the home visits will encounter dementia far more frequency than those in a high street, so a home visiting Audiologist and a home visiting Optician is more likely to be experiencing dementia but don’t be afraid to ask that when you’re booking the appointment.  Of course getting as much information as you can from your doctor, your consultant about the nature of your family members particular type of dementia, do they have one type, do they have multiple types and how that’s likely to present and knowing whether they have a form of dementia that causes hallucination, whether they are possibly gonna have their visual fields affected or lose their peripheral vision.  Knowing that information will mean that you can customise the world around you, around that patient far better.  Don’t be afraid to do a bit of trial and error, don’t be afraid to think, come up with a theory oh are they behaving in that way because of X, Y or Z, let’s try and eliminate X, look at Y and work on Z just seeing if that helps that person.  Yeah so a few little tips and tricks for the eyeballs as a rule of thumb it’s quite a good idea to think a bit, to approach things in a similar way to if someone has lost their vision as a result of their eyes, we talked about some of these in a previous episode but similar principles to as if they’re losing vision or they’re registered as blind.  So improving the contrast in the world around you, that’s generally with lighting, eliminating shadows, keeping things quite simple so for example if you imagine someone had blind would you feed them mash potato on a white plate, probably not.

Perito:     No I don’t think I would now, no.

Greg:        No I don’t think you would.

Perito:     I might have done before you just said though.

Greg:        Yeah, yeah you may well have done, in the words of Alan Partridge use a sausage as a breakwater.  (laughter)  So you may well choose to have different colours plates and objects to make life easier for that person, so a dark plate, so if you’re serving a lighter coloured food is much easier for that person to see, if you’ve got a pale cup it might be beautiful but if you’ve got a pale cup on a pale tablecloth again it’s much, much harder for them to see especially if its just full of water, or milk or something pale as well.  So working on your contrasts of the objects in the world around you, try to eliminate glare and reflections just like if someone’s registered as blind, being aware that general lighting can be your friend but lighting and glare can be your enemy, eliminating shadows with lots and lots of lamps so that they don’t shine directly into the person’s face but they do cause generally good lighting.  Keeping things familiar is really important of course, changing the bedroom or the layout of someone’s room if they have dementia is really quite distressing for them but don’t be afraid to jiggle things around a little bit if it improves the lighting and removing, as you said any really complicated patterns on the floor or the walls, complicated or confusing pictures, carpets or rugs.

Perito:     (46.23) So have you got any further general tips Greg which would really effectively for people?

Greg:        Yeah these are just general tips that I’ve found work for me in general practice and I think as a rule of thumb they may well be worth your listeners thinking about, so remember that the brain controls almost everything and dementia can affect almost any part of the frame therefore almost anything can be affected but as general rules of thumb being slow and calm.  I often think of people as mirrors, people with dementia as mirrors, they are essentially products of their environment, so if you’re agitated, if you’re busy, if you’re loud, if you’re worked up, if you’re stressed so will they be, however if you aim to be calm, friendly, smile and go back to real basics with body language, touch is a really good one, where you touch someone is really, really important, touch can be very reassuring for someone anyway between the elbow and the upper arm is a really good gentle way of approaching someone especially with a smile and especially if you approach slowly, that can really reassure someone.  I probably touch.

Perito:     (47.20) And I guess from the front as well, so you mentioned that before but also thinking back to the previous Podcast with vision impairments, locating and touch on someone and approaching them in a way that they can still view you from periphery and everything was really important.

Greg:        Yes absolutely great point, you may well approach them from the front when you’re doing that and you may well of course use another sense that you have available to you sound, you may introduce yourself or make sure that you’re talking when you’re doing it so that they can hear that someone’s approaching as well as seeing, as well as feel, so you’re stimulating all those senses so that it’s less of a shock to someone.  Other things to do with dementia, I often find people with dementia quite like to be called by their first name, we may think of the older generation as liking the formality of surnames but firstly if you’re dealing with a female remember that they may have had more than one surname in their past, if they were only married at the age of 70 under Mrs Jenkins it may well be that they don’t remember that, they remember being Mrs Smith so if you call them by their first name it’s a much easier and more familiar and friendly way to approach someone and eliminates the chance of them not recognising themselves as a different name.  Also be aware that a lot of elderly people will have more than one name, so they may be christened Joan but from the age of 5 they may have been called Betty, so if you call them Joan they won’t recognise as their own name, so being aware if you’re dealing with someone you don’t know very well make sure you find out how they like to be addressed, more often than not, or very frequently surprisingly so it will be a different type of name.  Be sure to work on your body language and keep calm and rely on the base indicators like smiling and being aware that people with dementia will mirror you.  If I think back to my time in practice I’ve been punched and head butted by patients in the past, more than one of those have been female believe it or not however, with hindsight most of the time it’s been my fault, I’m pleased to say it hasn’t happened over the last 4 years or 5 years so I must be getting better are reading patients body language, calming and controlling my own body language and knowing when to take a step back or when whatever methods and techniques I’m using are not working.  We’ve talked about touch a little bit and it’s towards the upper arm and the elbow.  Another strange story is don’t be afraid to go with it, I had a patient who would insist on wearing their pyjamas for breakfast and the family member who was caring for them really didn’t like the idea of it, it was always got up dressed and first thing in the morning being smart and well presented from when they were first married and the family member really wasn’t in on this person still wearing their pyjamas for breakfast.  So I do think routine and a regular stable environment is really important for someone with dementia but at the same time is it worth causing a really big argument over getting someone out of their pyjamas in time for breakfast.  Consider the option that it might not be, it may not be worth causing that person that distress just to get them out of their pyjamas.  So we may look at it and think that looks a bit silly, that looks a bit unconventional but does the patient, does it may the patient’s life easier, is it more pleasant for that patient.  Another really interesting.

Perito:     (50.13) I guess it might be the one thing, sorry Greg, it might be one of the few things that they actually recognise, maybe one of the few things that they look at and go like a child with their blanket or a favourite teddy, perhaps an element from the clothing item stand.

Greg:        Yeah that’s a really, really good point, very probably actually, that frequently explains, I have one patient I can think of them now actually, names Dennis and he likes to wear a bobble hat indoors, all day, even in the summer and exactly that he probably use to wear it 20 years ago or a bobble hat 20 years ago when he was walking the dog and so he thinks that he knows it’s his, he remembers it’s his and I think if people have dementia and they’re aware that the world around them is slipping away from them and they’re aware that something’s not quite right, they’ll very frequently grab on and clutch onto something they recognise or they know is theirs and that brings me nicely onto another point and that’s stealing.  We often find that people with dementia steal things, and they not stealing, they’re taking things and they often hide them away, the reason they do that is they look at something like keys or a picture or a wallet or a purse and they think god that’s important I do not want to lose that, that’s really important and they’re aware that things aren’t quite right for them, the world around them is slipping away a little bit and they think what I can do with that really important thing, I know I’ll put it somewhere safe, I’ll put it under my bed, I’ll put it in my drawer and that’s why we often find people with dementia take things because they think that it’s theirs and they think that it’s important and they want to put it somewhere safe because they don’t want to forget where it is.

Perito:     (51.40) How’s this working going forward, are we making progress with this, I mean I’ve found this particular whole conversation to be massively enlightening but also its concern is there’s a concern here that we may be not doing enough to help people with dementia particularly as this is a huge, huge issue going forward as we get older population and the whole idea of an inclusive environment which obviously is excluding people simply because they can’t interact with anymore or maybe we simply don’t understand how to help them interact with it anymore, whether they become, have dementia.  What are your thoughts on the future and the way this is moving forward?

Greg:        I just don’t think dementia was really even thought about 30 years ago was it, it was more just that they’re, “oh my crazy old aunt she’s going crackers, she’s going crazy don’t worry about if she starts talking about the war, it’s perfectly normal” it’s definitely becoming better than that, we are more aware of dementia but you’re dead right it’s such a broad and complicated issue it’s obviously massively underfunded of course and answer generally I think is time and a tailored approach to individuals.  The more time we can spend learning about someone learning about their history, learning what works for them or what doesn’t work for them betterer and more inclusive environment we can make for people, but I think your dead right it’s going to become more of an issue over time and although things are moving in the right direction it feels quite slow and I’m not sure how you’re listeners can really tailor their environment if they’re shopkeepers or if they own practices and buildings that are going to be visited by people with dementia it is quite difficult to tailor someone’s environment in terms of a physical environment I think being aware of over stimulation is a really good one and I’m sure that would help lots of other disabilities, thinking about contrast and design and layout is a really good one and again that will help people with other disabilities probably.

Perito:     (53.22) You also mentioned it a second ago Greg about the idea of we’re people mirrors, so as long as everybody when their designing projects to think of people as mirrors they are directly reflecting what we produce for their products, their environment like you said.

Greg:        Yes exactly that.

Perito:     (53.35) Which is amazing in terms of this really struck for me is the tool so no matter you do if you have a crazy world that you’ve created for a shopping experience and don’t be surprised if people react in the same way to it, whereas if you’ve got a perfectly normal pro-generic then go for it.

Greg:        Yeah, no absolutely if it’s a high energy, all guns blazing casino or shop selling computer games for youngsters it’s going to be such high energy, it’s going to be massively over stimulating, massively confusing and intimidating for anyone with dementia, as you say they’re products of their environment.  I’ve just thought about this idea now but if I had a shop and I wanted to tailor specifically for people with dementia as well as a lot of staff training I would really consider having a protocol in place where I would, and a template where I would tailor that shop for two hours a week for people with dementia to come and visit and that might involve removing an awful lot of the stimulation from the walls, changing the lighting to make it a calm environment, changing the background music, making sure that my staff know, oh well we’ve got this dementia window between whatever it will be 10 o’clock and 12 o’clock on a Thursday, this is a calm and generally relaxing environment, our staff are aware that some of the patients may have dementia so they’re changing their body language, they’re picking up on non-spoken queues about what that person seems to respond to, changing the lighting in the environment, maybe even changing the colour of the background lighting to sort of create a more calm and relaxing environment.  Perhaps that will be a way in which things could move forwards.

Perito:     (55.16) Now there are quiet hours and things out there but one of the issues I’ve got from an inclusive environment expected with this is we’re turning around to people and saying you’re only welcome here during these predefined tolerated types and I think everything that you’ve mentioned and particularly with dementia patients and customers isn’t actually that far off what they’d quite like as a shopping experience, certainly during Covid I’ve noticed how much easier the Co-Op at the end of my road is because it’s almost like a personal shopping, there’s fewer people in there, you can queue patiently outside, everything’s so much more relaxed and overall it’s a much more positive experience for me.

Greg:        Yeah absolutely and a one-way system which has been brought through for Covid, certainly my Co-Op’s got a one-way system, that definitely makes it easier for a patient with dementia if everyone’s sort of shuffling and moving in the same direction.

Perito:     (56.04) Some vision impairments as well.

Greg:        Absolutely, absolutely, I can see that the other way to look at it is you’re only welcoming in people for narrow window a day, I guess perhaps the free market might solve it if someone thinks that there’s a demand for a permanently calm and relaxing environment that all the introverts and everyone who likes that environment will take their business there and that may be the way forwards, but I do feel that we’ve got a long way to go, it’s such a broad topic, it’s so hard to generalise and we’ve talked an awful lot about various rules of thumb and general traits.  I think we’ve got a long way to go, but like you say hopefully some of the principles tie in with other disabilities that make life harder, so if we can work on things for some people who are blind it will very likely improve people’s dementia as well.

Perito:     (56.56) And before I ask you about any final things, topic, question, what I’d like to just ask if you’re happy to talk about it is everything that we’ve talked about today is very emotive, you’re dealing with people who are in a stressful situation often towards the end of their life, how does this impact on you and what did you, what impact does it have emotionally for you as an optician to see people in this and do you find that you’re kind of just having to work through it or do you often think about these things and how do you manage that for yourself?

Greg:        First thing to understand with most forms of dementia it’s more upsetting for the family members than it is the patient, very often.  The patient frequently, they may go through phases of getting quite distressed or knowing that’s something’s not quite right and getting very upset about it but the vast majority of people that I see with dementia are pretty content, they’re quite relaxed, they’re quite happy, they may have gone back to basics a little bit in what they like and don’t like and what they’re doing with their time but 9 times out of 10, more than 9 out of 10, 97 times out of a 100 they’re actually fairly content, fairly relaxed, it’s the family members who find it really, really difficult because they’re seeing their loved one change, they’re seeing their loved one decline and become less of a person that they remember and that’s really hard for them.  So I think remembering that if the patient is happy, you’ve done your job well and that’s the most important thing, I think that’s really important to think about and also just thinking about the funny side of dementia, I mean people with dementia do really, really funny things, we’re talked Frontotemporal Dementia and how one can lose their inhibitions.  Frequently people with dementia can be incredibly honest, it’s almost childlike in how naïve and honest they are and that’s really refreshing in a world where everyone tries to save each other’s feelings so I’m trying to think of some situations really I mean I’m luck enough not to have a bald patch but if I did I can guarantee it would be pointed out at least once a day by someone (laughter) so certainly I can have someone’s, more than once I’ve had someone saying, “that’s shirts far too small for you”, “good god look at the colour of that tie”, “she’s far too pretty to be your girlfriend” as they point at a carer whose talking to me.  Something hilarious like that so I think it’s really important to sometimes be prepared to laugh at the funny side of dementia and as long as the patient’s happy I think that’s the most important thing.

Perito:     (59.07) Any final things you’d like to add on any topic at all, so this is a chance for you to say what you’re thinking or what’s that’s come up new technology or anything at all?

Greg:        Yeah sure lovely, two things really the first one which is what I really wish I’d mentioned last week we talked about Macular Degeneration and how it’s extremely common and can cause some real impairments in peoples’ central vision, there was one thing I wanted to talk about and it was hallucinations and Macular Degeneration, there’s a condition called Charles Bonnet Syndrome and it’s a situation in which the scarring at the back of the eye caused by Macular Degeneration sends random electrical signals to the brain and the brain doesn’t know what to do with them so it does its best to interpret them, very often can cause a completely random hallucination and the reason I wanted to bring it up was it was thought some years ago that this was really rare, only 5% of people with bad Macular Degeneration had these occasional hallucinations and then there was a study in which actively consultants at an eye hospital, and I can’t remember which hospital it was, started asking people, every single person they had with Macular Degeneration, “do you hallucinate, it’s perfectly normal if you do, we think it’s more common than we realise” and the results eventually came back that up to 50% of people with advanced Macular Degeneration hallucinate a bit and see things that aren’t there, and those patients were afraid to tell anyone because they thought they were going mad, they thought they were going to develop dementia and actually they weren’t it was just the scarring at the back of the eye triggering these hallucinations so I do want to say who listened to the previous Podcast who had Macular Degeneration or a family member and they were worried about getting hallucinations it may well be that it’s the Macular Degeneration causing it, so don’t be afraid to have an eye test and get that examined further because it could well be that it’s Charles Bonnet Syndrome their suffering from.  The second thing I did want to mention and again I haven’t sort of managed to quite find a way to sneaking in this so far was a completely random and very small nugget of information is very often you’ll find people with dementia will ask for their parents, they’ll very often say, “where’s my mum” or “where’s dad” and this person’s 84 years old so obviously very distressing for the family members and the children saying, “well your dad died 40 years ago”, to understand why they do that it’s not unusual for someone with dementia to think they’re a lot younger than they are, so they have very poor short term memory or even medium term memory so a person with dementia may well think they’re 45 years old.  We talked about that, that man who was very distressed because he wanted to go to his rowing first thing in the morning that he was probably doing in his 20’s, he thought he was in his 20’s, so he may well at certain times have asked where his parents were, or asked for his mother for some reassurance and so understanding that people with dementia will often think they’re considerably younger than they are, that explains why they ask for their parents and it also explains where they can find mirrors quite distressing, they look in a mirror and they don’t recognise that person, if you think you’re 40 years old and you look in the mirror and you see an 87 year old in the reflection that’s really distressing for someone, so be aware that mirrors and even reflections on television can be distressing to someone with dementia and that’s why they’re asking for their mum.

Perito:     Brilliant summary there Greg, thank you very much.  So thanks for joining us today Greg it’s been really interesting to hear about your work and if listeners want to find out more about the versatility of domiciliary opticians please check the Podcast notes on the website blog or head over to Greg’s company website which is www.mannandfrancis.co.uk and that’s also going to be listed on the page too.  Now thanks for joining us Greg.

Greg:        Pleasure thanks for having me.

Perito:     Now you have been tuning into the Perito Podcast Our World without Boundaries, thanks for listening everyone, everywhere.