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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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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.

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Our World. Without Boundaries Podcast Ep6 In The ‘Inclusive Designer Series’ With Gregory Mann On Vision Impairments (mini series ep1)

In Episode 6 we find out about vision and impairments from Gregory Mann in this, the first part of our mini series about optics and the human eye.

 

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 creating 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 advise on creating 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.  In this mini-series we’re looking specifically at vision so we’re joined Optometrist, Gregory Mann from Mann and Francis Mobile Opticians and the mini-series was conceived as a specific tool to help people understand impairments associated with the eye, but also the impact of temporary issues which can make short but just a severe an impact on people’s lives.  Hello Greg thanks for joining us.

Greg:        Hi, pleasure to be here.

Perito:     Before you tell us a little about who you are what we’ll do is a quick-fire round, a bit of a special treat for you.

Greg:        Okay.

Perito:     And just answer the questions off the top of your head and see how you feel, so first question (1.19) ambition or talent?

Greg:        A bit of both of course it instantly made me think of Gary Player the Golfer, he always said a phrase I’d always thought of was the more eye practice the luckier I get. A fantastic quote but shows you also that you need a bit of both.

Perito:     (1.33) If your teenage self could you see you now what would he think?

Greg:        I think the teenage self would see a middle aged optician and think it was quite boring.  Yeah not much to say about that really, you just think… oh.

Perito:     (1.44) Do you listen to music whilst you work and if so what’s often on the playlist?

Greg:        In truth I don’t actually, occasionally a bit of Classic FM after a long day but for the most part I just listen to Podcasts.

Perito:     (2.00) Socks with sandals?

Greg:        I love it when I see it, if you can pull it off then you’re really special. If you can’t then you’re making everyone else smile inside.

Perito:     (2.10) Seaside or mountainside.

Greg:        Ahh that’s a tough one, I love the ocean, I grew up near the ocean but I do like the view that a mountain gives you so I’ll say the ocean and seaside but preferably high up on a cliff so you can get the best view.

Perito:     Yeah that sounds good, okay brilliant.

Greg:        That was a cheap answer really (laughter).

Perito:     (2.28) There’s no right or wrong answers.

Greg:        Having my cake and eating it on that one I think, yep.

Perito:     (2.33) Tell us a little about who you are and a bit of your background, you obviously like having your cake and eating it but what else is Gregory Mann about so everyone can get an idea of who you are and where you come from?

Greg:        Okay so I’m an Optometrist, I work for a mobile opticians firm called Mann and Francis Mobile Opticians. I’ve been practicing the domiciliary build, domiciliary meaning the home visiting or the mobile service for about 8 or 10 years now, prior to that I was an independent practice in the high street.  An Optometrist is a term sort of used interchangeably with Optician or Assistant Dispensing Optician, Ophthalmologist and they are all a bit different really.  So the Optometrist is the individual who when you go and have your eyes assessed in a high street optician there are others within the optical industry which are similar but not quite the same, so alongside an Optician, as an Optometrist you often have Dispensing Optician and they are well qualified. The term Optician is sort of a bit more of generic term, it can describe either of us although it is a protected title so not anyone can call themselves them an Optician.

Perito:     (3.42) So it’s kind of like an Architect isn’t it you can’t be an Architect in the built environment and the body can take legal action.

Greg:        Yep absolutely yeah, it is a protected title as is the word Optometrist as well so if you see the word Optometrist or Optician it is a protected title.  There other work that is often heard is an Ophthalmologist and an Ophthalmologist is an Eye Surgeon so they’re a consultant, so there background is really different, they start off as Doctors, go to medical school and then specialise.

Perito:     (4.12) Did you ever want to do that, was that always in the plan or was it a case of you?

Greg:        What eye surgery?

Perito:     (4.18) Yeah did you want to go through the field because I guess that’s really super niche isn’t it.

Greg:        It is super niche but in truth the channel is totally different, those who wish to become an Optometrist will go to University and study Optometry.

Perito:     (4.28) Now what I particularly like about what you’ve done with your business is you’ve turned it into essentially a fully accessible Optometry unit isn’t it, you are in your car most of the time, you go around to see people’s houses so if someone can’t go to a high street optician you can go to them. Is that why you set it up?

Greg:        Yes exactly that yeah, so home visits and a domiciliary sector of eye care was always considered very niche, as you’ve said, a very small part of it and in truth most people who are in their comfortable warm rooms in the high street really didn’t want to get involved in domiciliary care and it was neglected for a long time really, however if you’re entitled to an NHS eye test in a normal opticians and you’re unable to attend the high street unaccompanied, that’s the terms that are used, either due to a physical or a mental disability then you’re entitled to an NHS eye test in your own home.

Perito:     (5.22) That’s really useful thanks Greg.  When I conceived this podcast the idea was that this would be the first Podcast in the mini-series about vision, blindless, eye care and helping people to kind of understand more about how this can impact on people’s lives and when your designing, when your creating, when your organising things to build this sort of stuff into and what really matters to the user.  Can you tell us about some typical visual problems that people have I’m thinking maybe if we look at generational issues so from child to as you get older, am I right in thinking that age of the body also means the eyes age with us?

Greg:        Yes absolutely yep, shall we start with the young and work our way through the ages so to speak?

Perito:      Yeah sounds good.

Greg:        Yes so children, a lot of people don’t realise that when a baby is born their vision is appalling, much like the back of head isn’t fully formed you have to be really careful not to damage the back of their head and their vision is really very poor, a new born baby will not recognise its mother how their mum looks, they will primarily recognise their mother through the sound of voice, her smell, her touch and because they have a large amount of contact with her.  A child’s vision develops gradually but over the years and as a result it’s really critical that nothing is going to impede that child’s vision.  Generally it’s a really good idea to have your child’s vision assessed by an Optometrist generally between the ages of 2 and 4, it depends a little bit.

Perito:     (6.38) So how do we know that babies can’t see very well?

Greg:        Good question, obviously you can’t show the dictionary and ask them to read it out, there’s lots and lots of various methods but generally they work on the principle of preferential looking so generally one would hope that are interested and curious and prefer to look at something rather than nothing, so if you hold up a card with a letter on it and then right next to it another equally sized white card with just a blank on it you would hope that more frequently than not the child will look at the card with the letter on and of course if you make that letter fainter and fainter with poorer and poorer contrast and smaller and smaller you can get an idea of just how much detail that child’s sees.

Perito:      Okay cool.

Greg:        Yeah that might well be how an infant’s vision is tested initially but perhaps the most important thing when you’re assessing an infant’s vision is do they appear to have any significant squint, that’s a bit of a slang turn but essentially it’s a turn in the eye, not uncommon to think a child has a turn in the eye and actually the skin between the nose and the eye children don’t have particularly developed bridges of their noses so the skin is closer to the inside of their eye and it looks like that they a squint but they don’t, so an Optometrist will look at that and look at the health of the eye, look at the back of the eye to ensure there’s no obvious obstruction to the child.

Perito:     (7.54) So how many children are born into the world with eye problems, is this going to be one of those things that only affects 1 in a 1000 of us or is this as common in children as it is in adults.

Greg:        I’m afraid I don’t have the exact stats for you on that, certainly very few babies and infants have visual problems, have real squints or any real diseases of the eye but it does happen and the sooner it is diagnosed the better.  Provided that your infant hasn’t got any strong family histories of any squints or anything, short sightedness comes generally in the later children’s years or the very early teens.

Perito:     (8.39) Probably another question you’re going to struggle to answer Greg but I’ll ask it anyway, when it comes around to glasses I mean you’ve worked in a high street optician, when children come in are we designing spectacles and optical products, I don’t know what the earliest age you can have contacts is, but are designing for kids with sight and vision problems already, is there a kind of a big active proactive market out there for it or is there some real room to be made here?

Greg:        Do you mean in terms of the design and the layout of the optical practice in children or do you mean in terms of optical products and spectacles?

Perito:     (9.10) I was thinking more of the product side but if there’s going to be a gap there.

Greg:        Well it’s a good point, I mean the world around is designed for adults so although we don’t particularly struggle with the set up in a practice for children it’s not unusual for me to have to ask a child to perhaps kneel on a chair rather than sitting on a chair for them to be able fit on the machines, it’s a good question actually, I would hope that paediatric specialists in low vision departments in the hospital would probably have higher chairs and equipment that would fit them a bit more appropriately.  As to spectacle frames and fashion and design of things well it’s amusing but Harry Potter has done absolute wonders for his glasses, in the 80’s they were extremely uncool to wear glasses and actually the glasses that you got from your high street practice were pretty awful really however, Harry Potter has made children really want glasses.  In part that it’s not unusual to have a child pretending they can’t see the board, convincing their parents that they can’t see the board and they need an eye test just so they want some cool glasses like their friend or Harry Potter and fortunately fashion has caught up with children’s vision and you can spectacle frames in almost any style or shape or design now, so it’s looking a lot cooler with their glasses.

Perito:     (10.16) Are there any magic frames or more Muggle frames Greg?

Greg:        Excellent question for the moment we’re stuck with Muggle frames but who knows that could be the next area of development.

Perito:     (10.29) Brilliant thank you, so are there any other typical eye issues that are worth mentioning to people who are listening?

Greg:        Yeah for children, so I think leave it to your Optometrist to check for squint and development of the eye, the eye does most of its developing in the first 7 or 8 years of life so far less beneficial if you wait until your child’s 10 then saying they have problems and that has a huge impact on their development during school, it’s a big cause. During school it’s not clear to see the board or if they can see the board they may well be able to see everything clearly but it is harder for their eye to do that, it is far more fatigued for them to look at something then it is you or I.

Perito:     (11.07) Have you noticed schools being a bit more approachable about these sort of technical issues that you’ve just mentioned or is opticians kind of ahead of the game when the schools have yet to catch up.

Greg:        The teachers are pretty good in general, I think if they think that the child’s struggling then they’ll just suggest that child goes to an optician and has an eye test, we do find they’re pretty good.  There’s one other condition that I need to be a bit careful of talking about but there is another condition of the eyes, well not the eyes, it’s a condition of the brain really, visual stress or Meares Irlen Syndrome, I’ll put the spelling of that in the show notes, and this is a situation in which a child will find looking at certain coloured letters, the black and white text is really quite distressing on the eye, feels quite distracting, quite bright, sometimes they will describe it as the words on the page are moving or they may describe it as when they look at a page of writing either the words are moving, shimmering around or they can’t really focus on the words and they just see patterns in the gaps between the words.  This isn’t actually a condition of the eyeball it’s a little like Dyslexia, it’s not the same as Dyslexia although people correctly refer to it as Visual Dyslexia or Visual Stress, think of it as a cousin of Dyslexia its sort of slightly similar in that it’s the brain struggling.  Some specialist opticians and Optometrists can screen for this and we do find that some teachers have heard of it.

Perito:     (12.23) That’s interesting because as a dyslexic I think this whole kind of coloured transparent material thing came in while I was at school in the late 90’s.

Greg:        Did you try that before?

Perito:     (12.33) Well I did but it made absolutely no difference, I mean the yellow colour, the pink colours and it was just, I suppose there was a clarity benefit to a degree but it’s interesting that you are isolating that there is a particular syndrome that may be confused with Dyslexia and as a Dyslexic for it not to, I was always concerned as to why it never made any impact to me and apparently this was the bee’s knees, but obviously it was never going to because I obviously didn’t have the specific syndrome this required.

Greg:        Exactly it’s not the same as Dyslexia, I believe it is correlated with Dyslexia so you’re probably more likely to not specifically benefit from this if you have Dyslexia, but I have plenty of patients who found this beneficial, found these colour sheets beneficial and there’s probably an argument for that but I had patients in that I had University student who doubled their read speed purely as a result of this coloured sheet of paper and it wasn’t cool blue I think it might even have been pink, it is worth looking into and I do find teachers are quite frequently handing these coloured sheets out which is perhaps unadvisable without it being looked at but a lot of high street opticians will not be able to investigate this and some may even mock and not consider feasible.

Perito:     (13.41) Moving through a very typical person’s life and we’re heading into middle age now we’re approaching the Harley Davidson and the sports car type era, are we seeing huge differences in the individuals eyesight now or are we still seeing kind of issues that were picked up in the 20’s and 30’s that have been carried through or are these new things that are developing?

Greg:        A bit of both, if someone has been given spectacles in their younger years, especially when they were teenagers and beyond it’s very likely they still be requiring them but to your middle age question the most common phrase here when we have someone in their mid to late 40’s and above is my arms aren’t long enough, so the typical condition that affects the middle age is a condition known as Presbyopia, everyone refers to it as long sightedness but it isn’t quite the same as long sightedness it’s a different condition, this is a situation in which the lens within our eye is now struggling to focus to read up close.  Generally hits us in our mid to late 40’s, generally it’s an age related deterioration of the ability of the eye to focus, so the analogy I always use is imagine, this is the old fashioned camera, the eye works in a very similar way to a camera really, have a lens in the front of the eye much like a camera that focusses and that’s really quite straightforward for us to fix with spectacle lenses.  The eyes are focussing as well just with spectacle lenses.  If however the film in the camera or if this was digital camera about the electronics of the camera was starting to deteriorate or anything else was going wrong with the camera then you can’t fix that just by refocussing.  One would think that was, generally in your middle age most common problem is Presbyopia but almost anybody needs glasses at some point or another.

Perito:     (15.18) I’m just thinking from a work side of things now so if people are into their 40’s and 50’s in a job, maybe a manual job is there already a thing where organisations, business corporations saying you have to provide these safety glasses, safety gear with prescription to combat that sort of thing cos if you feel that your visions out of sync I suppose does that cause more accidents?

Greg:        Yeah your dead right health and safety’s always on the increase and the need for spectacles for you to do your job properly and employer is required to provide an eye test. If you just need glasses for general use then the employer is legally obliged to provide that however the two main examples that spring to mind are if you require glasses and you’re also required to use safety glasses, so if you have a manufacturing job and your required or obliged to wear safety glasses and you wear a normal prescription pair of glasses for whatever job that is then your employer is obliged to pay you to have an eye examination and were issued with a pair of safety glasses to allow you to do your job properly.  Many of your listeners will probably be able to relate to using a computer, if you need glasses for general use and you also wear those for a computer then your employer is also responsible for that.  However, if you need glasses that are unique for a computer and useless for anything else and you need a computer to work then your employer is obliged to pay for those.

Perito:     (16.35) That’s interesting so it maybe if you were working on a factory floor and there were digital displays overhead that were requiring you to view information on the process say car manufacturing plants that would technically still count do you think?

Greg:        I think if you struggle to see that in general you may well be wearing glasses for driving etc. and therefore.

Perito:     It’s gone beyond that, okay.

Greg:        Safety glasses absolutely but I’m not so sure on office I think the office generally it’s just a screen.

Perito:     (16.59) One of the things it will be interesting to get your view on this actually, one of the things that’s quite important for me, I’m looking at two monitors at the moment actually which both have blue light filters built-in and blue light is an interesting thing that if your staring at a screen all day, and I remember this from the first screen that I ended up having in my first job was a CRT and I transferred to an LCD very quickly after that and my eyesight literally plummeted because of the dryness in the room and things and I sometimes wonder if blue light is the thing that people are designing for at the moment, is it something that’s on your radar?

Greg:        I have to admit I haven’t seen much research distinguishing between CRT and LCD screens, as a general trend we’re doing a lot more close work as a nation than we use to, as a result there are far fewer manual jobs even if it’s just looking at our mobile phones and close work is a stimulus or inducing short sightedness so we are finding short sightedness is increasing in the population as a result.  Whether a screen is slightly worse than hard print or paper remains to be certain but it’s fault that it probably is a little bit, primarily because even though your screen looks flat your eyes are actually looking at a flat image.  The depth of a screen and the depth that your eye has to focus is a few fractions of a millimetre deep and that constant refocussing and adjustment has to do, even without you realising or noticing it is thought that that may be a slightly bigger factor in short sightedness progression.

Perito:     (18.24) Well that kind of flips up as a question on, if you have a population that’s going to be computer focussed so we’re coming into rooms, we’re going to be, well I suppose in the post-pandemic era it’s less likely we’ll be together but are we going to see more automation, more computer use, so in maybe 50-100 years is it possible that the computer screen may completely mutate our eyesight into something completely new because of this external stimulus and humans will either have to adapt or there’ll be health issues are a result of that?  Is that far-fetched or is that a possibility?

Greg:        It’s far beyond the scope of a humble optician I fear (laughter), I’d say that computers can certainly become our friends or our enemy when it comes to low vision the ability just to increase or decrease the size of the print, to increase or decrease the contrast and to change the font colours and the background colours for a combination that works really well for that patient.  I think that has the capacity to make life so much easier for those who are bothered. I do wonder whether our eyeballs and perhaps the rest of body are purely vehicles to the brain so if we’re talking really 50 to 100 years I can imagine that if the signal to the brain the weak link is probably the eyeball, if you could plug your brain with a cable then the brain is what does half the seeing, the brain and the eye work very closely together to see, the eye picks up the signals but it’s the brain that decodes and descrambles everything, so if someone’s eyesight’s deteriorating there would be nothing to stop plugging that persons brain into a computer and then they will either see through a seeing eye, an electronic eye or they may not even need to see because they can plug it into a computer and the computer will send the signals, the brain will decode it and it’s as if they’re watching TV, not through an external device but just plugging it straight into the brain, so perhaps we’re in a bit of an intermediate stage at the moment where the eyes are becoming the weak link but we may be able to completely bypass that.

Perito:     (20.10) That’s kind of a potentially frightening combination of terminators and futurama which is a bit worrying across the board (laughter), hopefully we’ll be somewhere in between that.

Greg:        Yeah artificial intelligence is a bit scary but yeah I definitely think that language is a really good example of how incredibly inefficient it is, for me to get an idea in my brain over to your brain has to be translated from my brain to my mouth then you decode it from your ears back into your brain it’s a dreadfully inefficient slow process so I think eventually bypassing these external things like the eyeballs, like our mouths and language going straight from one brain to another, a fibre cable rather than the slow biological cables that we’re using at the moment. That’s a long way off, for the moment we’ve still got a generation or two of using current vision devices and more straightforward.

Perito:     (20.59) So going back to our gradually decaying human if we’re heading out towards old age and we’re coming out of middle age are we seeing any further deterioration in eye health, is there any other typical diseases that people might be interested in hearing about that will impact on these before we get to old age?

Greg:        Yeah so I think if we’re leaving our middle aged period we’re very likely wearing reading glasses and we may well be requiring spectacles for other tasks towards the end of middle age, television, driving, distance, by the time you get to the older person’s eyes the first thing to understand is that their eye has very little ability to focus so whatever they want to look at generally they may need a different pair of spectacles for it, so some of these patients may need various spectacles one for far away so that’s driving and television, one for computer use sort of arms’ length away maybe even knitting and then a third pair for really close work reading, telephone, mobile phone anything close up but going back to analogy of the camera in middle age and beyond we do start about not just being able to fix this problem with spectacles, we’re getting to the stage where the eye is wearing out just like the rest of our body does and then eye diseases start to become more of an important impact, much of our time we are prescribing spectacles and refocussing the eyeball but a big part of an office job is screen based. disease and if it’s detected triaging it and managing it either in practice or with a referral to work with  the consultant.

Perito:     (22.20) A really useful chapter of this human’s life – we’re hitting old age now and I’m vaguely familiar with macular degeneration because my mum’s got it but is this something that you come across often in older people, just tell us about this later stage life of this individual.

Greg:        Sure, okay you mentioned macular degeneration and your dead right it’s the most common cause of sight loss in the UK, the full term for macular degeneration and its used interchangeably is age related in a generation so as you said, it’s not unusual for people, for the elderly to have this, but it is age related, almost everybody gets it to some extent or another eventually but it’s as broader term as arthritis for example, so you can have some patients who are elderly and they have a little bit of discomfort in their finger, you know on a cold day even though their 84 and that may well be classed as arthritis, on the other hand patients who were largely confined to a wheelchair as a result of arthritis in most of their joints.  Having said that there were various factors that contribute to macular degeneration along with age, some we could do something about, what we would term modifiable and that’s only part.  Biggest modifiable cause or contributing factor to macular degeneration is smoking, it’s terrible for the whole body of course but it really does increase the chance of getting it. If you do have it you get younger, earlier if you smoke. There are other smaller factors as well diabetes, blood pressure, cholesterol, obesity all of which I’d class as modifiable but obesity of course and exposure to ultraviolet light.

Perito:     (23.56) Now we’re looking at providing some examples of this aren’t we Greg in our notes for every listener whose interested in getting a vague idea of what it’s like to exist with these impairments and these are things that are going to really hit people’s day to day experiences aren’t they, I remember doing a survey actually in Basildon, I happened to run into this older chap who clearly had no vision in the centre of his line, he was looking through peripheral and it turned out he had age related macular degeneration as well so he had a long cane and it impacted directly, it wasn’t blindness by any means but it was very much a visual restriction he was simply looking through a black spot in the centre of his eye.  These things affect people mentally, they affect their wellbeing don’t they as well as they’re, I suppose their social and their ability to get out and confidence to get out and engage with the community and world is that true?

Greg:        Yeah absolutely, you mentioned the black spot in the middle of one’s vision, I probably should have described this earlier, the main symptom and disability that macular degeneration causes is it causes very poor central vision, only the very middle of your vision but if I could ask your listeners to perhaps look at a piece of writing, if they look at just one word they can probably see a letter or two of that one word really easily, whilst they’re looking at that first word they can’t read anything even two or three centimetres or two or three words ahead of what they’re looking at, the macular is our central vision so macular degeneration is the degeneration of centre of the eye.

Perito:     (25.24) Huh so it’s self-explanatory yeah okay.

Greg:        It is entirely, yeah absolutely.  We rely almost entirely on that central vision but the most daily tasks in the modern world, our peripheral vision is really useful for navigating around and walking around and walking round and catching things in the corner of our eye but if we ever want to look at something in any detail at all, almost any form of reading or close work or electrical device or buttons on the microwave we use our centre of our eye that’s deteriorating through age it’s really quite unfortunate.  You mentioned that a gentleman you were speaking to didn’t really look you in the eye and if you imagine that your very central vision is quite poor and it’s just a blur and a blob in the middle of that, patients with macular degeneration they develop either through coaching or through picking it up themselves peripheral looking and essentially it relies on looking to the side of someone’s face so the black bob is to their side over their shoulder, to the right or to the left of them, which then means that although they can’t see that persons face they’re talking to in detail at least they’re aware of them more than looking straight at them and having that big black patch right above that persons face, so if you’re talking to someone who may have a visual disability they may not look you right in the eye and it seems rude, it seems like they’re ignoring you or looking off somewhere or not paying attention but actually they will be that that for them, their eyesight is better if they look off to the side.

Perito:     (26.47) Yeah because essentially that’s the only place where the peripheral vision is able to pick the shapes and light I guess and so it’s the only way of doing it.

Greg:        Yep exactly that, if your listeners wanted to try and replicate this imagine putting a great big finger print or a bit of masking tape or opaque tape right in the middle of their spectacles, right in front of their eyeball and then trying to look around they may well find that god they’re either moving their eyes and cheating to try and look around it or if they look straight ahead at all times and its really in the way they may well find god that’s going to drive me mad, I can’t look at anything I want to right in the middle of my vision and it’s really debilitating especially in a world now where we rely so much on our central vision to be able to operate electronic devices.  Other common eye diseases cataracts are the leading cause of blindness in the third world. Glaucoma again more common with age although it does have a genetic component, but Glaucoma affects the vision in the exact opposite way from macular degeneration.  So when it’s untreated and ignore causes tunnel vision, imagine looking through a toilet roll or screw your hands up to make, as gripping a broom handle and then looking down it that would be advanced Glaucoma.  Those are the three most common eye conditions that are age related which you are likely to suffer.

Perito:     (28.03) We were joined on a previous Podcast by activists Caroline Casey, I think you probably listened to the episode with her in?

Greg:        Yes.

Perito:     (28.11) Now she was greatly influenced by her ocular albinism, I think I’ve got that right, so much so though that she started the Valuable 500 which is out there to help get disability onto the corporate agenda.  It made me start thinking about how bad does someone’s vision need to be considering all the things we’ve talked about, now in my head I’m even thinking age related macular degeneration could be a blindness because of the restriction of vision, how bad does things have to get to be considered blind?

Greg:        The word “blind” is thrown around a lot now and it’s really really confusing, in order to be registered as blind you don’t have to blind, still have some vision and still be registered as blind.  The politically correct and modern term for blind is to be severely sight impaired, obviously they changed it because they felt that word “blind” was a bit misleading in that you had to sort of actually be walking around with a blindfold in order to be classed as blind but generally someone who is considered severe sight impaired they will have some form of deteriorated vision to a point where it’s really really bad.  Consultants at the eye hospital it is those who register someone as blind. It has to be a consultant but therefore they do have some discretion of what is classed as being blind.  So I’m afraid it’s a bit vague because there are lots of grey areas and with a consultant various eye diseases will affect the way they approach it but when you meet someone whose blind it’s really quite unlikely that they are completely blind, it’s far more likely that they have some level of vision but that vision is so poor that’s the cause of real disability.  Generally it might be they can only see shapes or bright lights, dark lights, perhaps movement, if someone walked pass them close by they’d see a flicking of light, a shadow, so just enough for them to not need any help but clearly enough but still important for them to remain and retain their sight.

Perito:     (29.46) So would it be fair to categorise several different levels then, escalating levels, so would we start with partially sighted, perhaps sight impaired, then severely sight impaired and then blind, would that be official terminology, is it there that staggering or is it more than that and what sort of category of problems fall into this, so would cataracts be just a sight impairment and age related macular degeneration would be a severely sight impaired?

Greg:        Great question, the answer is there are only two categories for the moment, you can be blind or as more commonly politically correctly referred to as severely sight impaired or partially sighted and again the more modern term is sight impaired.  There are only two current categories at the moment, largely but the only reason someone would categorise someone and put them in one of these boxes is really to ensure they’re getting the best help from the services and the best help from local charities, but the worst your vision the more you entitled to.  Incidentally if there’s anyone out there who feels that they are entitled to be registered, the first stage is to have an eye test with your normal Optometrist, if your Optometrist feels your vision is likely to be poor enough they will refer you to an eye consultant, the Ophthalmologist, and it’s the Ophthalmologist who will register you as blind.  So back to the eye diseases that you mentioned mild macular degeneration, mild cataracts, mild Glaucoma won’t be registered as anything at all, there are lots and lots of people out there with mild eye conditions they might not even know they have much of a problem, if they do have a problem it’s very mild, it’s quite easy to fix with good lighting but if it gets bad enough then they may well end up being registered as partially sighted or blind.  If there’s no operation or spectacles or anything else.  The only other thing to remember is you have to be, it’s based on the vision which is in the worst eye, the best eye you have, so if you have one eye which has been blind since you were a youngster from an air rifle pellet or whatever it was but your other eye is perfectly fine it’s very unlikely that you’ll be eligible to be registered blind or partially sight impairment.

Perito:     (31.41) I think what’s been really useful about this for me Greg is this idea that by designing and by appreciating peoples different experiences with the various impairments, just because someone might have an eye impairment does not mean that they are, sounds like very similar at all to someone else who might be standing next to them with an eye impairment, because they might be seeing things completely differently so their view outlook onto the world and their ability to engage and contribute to the world could polar opposite to the person standing literally next to them, would that be fair to say?

Greg:        Yeah that’s a really really good point, what we’ve talked about all afternoon has been really varied visual material so what I’d like to do is put some photographs on your website and show notes to try and give some kind of a visual demonstration to what it’s like for someone to have these eye conditions but as you say some of them are complete opposite to each other and there are many many others which we haven’t discussed, some of which will affect children or some of which affect us in our early 20’s, early 30’s, early 40’s and so just because some is registered as blind or clearly has a sight impairment of some kind or another it’s very hard to know how they see.  As a general rule of thumb they’re the experts on how they see and what works for them and what helps and hinders them and what works for one person who has poor vision may well not work for another, but the one thing I do want to talk about that’s really important, really means a lot to me generally people with poor vision they find themselves in a situation where some of their other senses are quite amplified so a person who has very poor vision they may well be really quite attuned to sound, however without the accompanying use of their vision more than one noise or more than one person talking at point or another at the same time is really very distracting so being aware that a gentle touch on the elbow to say which side you are and perhaps being a bit quieter when you approach them as you start to talk them and introducing yourself, just because you know who they are, they may not know who you are, it’s really to put yourself in that persons shoes but as you say varies hugely from person to another.

Perito:     (33.37) So following on from that then, if we’re starting to, well let’s use your experience then, how can the listener start designing for problems in everything they do, so we’re talking about daily life product design, decision making at work, the choices that we have to engage like you said about touching someone on the arm to show which direction you’re coming from, seems really important to, and that’s the choice people can make to engage in the right way, tell us a little bit about what people can start doing?

Greg:        If I had a regular customer or a regular client who came into my shop or my hairdressers or my local shop or whatever it was I don’t think I’d be afraid to ask them what they liked or what they didn’t like, how they liked the work, what helped them what didn’t, so that if you trained your members of staff to expect that same person every month the haircut or whatever it was, it may well be that you can tailor their experience to make it the best possible for them.  However, as a general rule of thumb, like I said earlier, patients who have poor vision they generally rely much more heavily on their other senses, sound and touch being two really good examples.  They may well struggle to see perhaps a light switch or a door handle but if they know they are touching a door handle you can make that easier for them with either touch or colourant contrast so if you have a door handle and you’re talking about a flat glass, so it’s not really a handle, if you envisage they’re trying to press the door but they’re pressing in the middle of the door and so it’s far less leverage, it’s much harder for them to open the door wouldn’t be difficult for you to put a brightly coloured border on the edge where the most sufficient place to push is and you could put a textured surface on there and you could put a sandpaper type surface or a rubber mat type surface just so that they could instantly touch that and know oh that’s where the door handle is if I push here it’s gonna be much easier for me to open.  So as a rule of thumb working with higher contrast, putting borders of brighter colouring or brighter sticky tape or something to highlight hazards on the floors, walls, hazards to touch around the head or to the wall or anything like that and then they’re trying to interact with anything perhaps a screen or a light switch or anything that they need to touch then as well as colourant contrast don’t be afraid to texture as a surface.  You’d be surprised how even a very elderly person who is losing their vision it is surprising how many times these people come and tell me there’s a tiny rough point on their spectacles, I look at their spectacles and they look fine to me and then I touch and I find a tiny, tiny, rough part on the side of their frame and it’s because they’re so reliant on touch and hearing that to get around their disability that we can harness this to make their lives easier.

Perito:     (36.06) Is there anything else Greg that you wanted to add in relation to those kind of design challenges people have, I guess cos TV screens must be a major pain for people, I know if you’re watching TV you have to pull the curtain to stop the sun shining on it otherwise you can’t see anything is that something that affects everybody?

Greg:        Yes absolutely it does, your describing glare and generally when it comes to low vision likely someone’s friend or it could be their enemy.  General diffuse lighting the ageing eye or the eye that has a visual symptom or a visual problem very frequently greater light and greater specific light on what they’re trying to look at will almost very frequently and almost always improve their vision and make their life easier.  However light can be your friend or your enemy so if you’ve got light increasing the contrast and shining onto what someone’s trying to look at that will make their life easier unless it’s a screen of course in which case it doesn’t, but if it’s any kind of written work or a light switch or anything they need to interact with or a button or something, a good task lighting to put a light onto what you’re asking them to look at will almost always improve it.  However light can be your enemy when it comes to glare and generally there are two types of glare, there is disability glare, there is discomfort glare. Discomfort glare is a situation in which glare is shining straight into your eye, the light source is going straight into your eye, so a really good example of that as you said is if you have a bright window, you’re facing the window and just in front of the window that you’re trying to look at is the television screen, that’s an example of discomfort glare, as you’re trying to focus on the TV you’ve got all that light surrounding it causing a hallow and silhouetting the screen that’s a great example of discomfort glare.  You may well find if you’re running a shop or a practice of some kind and you have adverts or some kind of interactive screen or TV you’ve really got to be careful to make sure that there’s no discomfort there and members of the public with poor vision will also find that quite difficult. Also all your staff they have to look at this all day, it will cause them visual discomfort.  Disability glare is less direct, that’s not like going straight into your eye that’s reflecting off an object and then going into your eye that’s causing the problem.  The most common cause of that is looking at a computer screen, we reverse the situation with the bright window, you now have a bright window, your back is to the window then you’re looking at a computer screen in front of you, if you turn that screen off there’s a good chance you’ll see the reflection of the window that’s a disability glare and that again is really quite distracting for us all especially someone who has vision impairments. There is a general rule of thumb if you wanted to ensure that your customers and your members of staff weren’t suffering from disability glare turn the screen off and you can’t see any kind of a reflection on the screen of any kind then you’ve got a good chance that it’ll be okay.  If you can it’s worth changing the angle of the screens or adjusting the lighting conditions, the overhead lights or the windows.

Perito:     (38.58) Lovely thanks for that summary that’s brilliant, any final things you’d like to add essentially on any topic you like, anything that kind of means something to you, you like to tell people about it it’s down to you.

Greg:        Yes lovely, yeah we’ve gone in quite deep into various subjects here the most important thing I’d say is that just cos you have some of the symptoms I’ve described it doesn’t necessarily mean you have any of these eye diseases please don’t panic too much just attend your normal high street Optometrist and have them examine your eyes and see what they can do for you.  A few little nuggets which we’ll scoot about topics in various points if you have any visual problems whether you’re registered as blind or partially sighted or not at all don’t be afraid to contact your local charities the RNIB and your local low vision team at the eye hospital and ask for a referral from your Optometrist if it’s considered appropriate they can refer you on, there’s a lot of charities that do a lot for you, some are prepared to perform a home visit in your home and have a look at your set up and have a look at your house and needs to be loan or give you any low vision equipment and give you a few tips on how to make your life within your home.  I do say that you have to be a bit careful when moving and rearranging your house if you’re elderly and you have poor vision because people with poor vision will rely on everything being where it was the day before however a really free and easy way of making the television to see, sounds so obvious, bring it closer, bring your computer half the distance towards or make the same difference as me buying a television twice the size, new televisions are expensive bringing it closer even if it interrupts the set up and the symmetry of the room may well be important.

Perito:     (40.30) Yeah, the aesthetic isn’t I think of all the cables that will suddenly be appearing in everyone’s front room but it’s a very good point Greg.

Greg:        Yeah either bring the TV closer or bring your sofa so that your sofas in the middle of the room and the TV’s tucked away so you don’t have the risk of cables.  I find a lot of resistance from especially the elderly who have things a certain way for about the past 25 years in their house and they don’t want to change things but provided they can get used to sort of objects being moved around as a one off it’s a great way of giving someone better vision.  As a rule of thumb if you improve the general lighting or specific lighting on what someone’s trying to see, you improve the contrast with table colours or simplify the machines and devices if the elderly are trying to use radios and ??41.15, and Podcasts, they can listen to your Podcast James then please do it as best they can but be aware that texture, colour, contrast, good general diffuse lighting with task lighting, specific lighting whatever you want to see, cost a bit more on electricity but it’s a free uplift to someone’s vision and I dare say does reduce the chance of falls for the elderly as well.

Perito:      Thanks for joining us today Greg it’s been really interesting to hear about your work and for kicking off the mini-series on vision in such style, now 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 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’ve been tuning into the Perito Podcast Our World without Boundaries.  Thanks for listening everyone, everywhere.

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Our World. Without Boundaries Podcast Ep5 In The ‘Inclusive Designer Series’ With Dr Caroline Casey of the Valuable 500

In this episode of the Inclusive Designer Series we hear from Dr Caroline Casey of the Valuable 500 who talks about founding the Valuable 500, hidden disabilities and why it is essential that business adds disability into its inclusion and diversity agenda.

 

Perito:     Welcome to the Perito Podcast Our World Without Boundaries. A podcast all about creating inclusive environments and about helping us all become expert 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 are not 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 advise on creating 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 you will have a greater understanding of what can exclude people from participating and what can be done to create our world without boundaries.  Now in this episode we’re really pleased to be joined by Caroline Casey who will be chatting about some high profile and important issues as well as telling us about the valuable 500.  (1.00) Hi Caroline how are you doing?

 

CC:            (1.05) Hi how are you doing?

 

Perito:     (1.09) I’m pretty good this end thank you very much. Obviously, we’re not in the studio so to speak we’re on the sofa and so we’re over the Ringr app. so you over in Ireland at the moment aren’t you Caroline?

 

CC:            I am I’m sitting on a sofa in a house full of four people trying to do their day job over some form of digital form, so yeah it feels very strange, very full house, full environment but it’s beautiful and sunny outside, I want to go out and play.

 

Perito:     (laughter) (1.30) It would be good to kick off with a bit of a warm up and why don’t you tell us a little bit about who you are, where you are in Ireland as well that sounds lovely and your background as well?

 

CC:            You know first off that’s a very open question for an Irish over talker (laughter), I live in Dublin and it’s a funny thing when somebody asks me a question like this to give a description of who I am, I could give you all the titles of the things that I’ve done but I believe anyone of us are defined by a role or any one specific part of myself but I think this is what my professional (laughter) descriptor is, I’m an activist, I’m a campaigner, I’m a social entrepreneur, a businesswoman I have been in the space of disability business inclusion for nearly 20 years, I’m an ex-Management Consultant, an ex-Archaeologist, an ex-Masseuse so that’s (laughter)…

 

Perito:     (laughter) That’s quite a few things that’s good.

 

CC:            …all my stuff and who am I, well I am 48 years old, I am in the middle of Menopause I am married to a wonderful man, another entrepreneur called Gar, I love, I’m very, very passionate about design it’s one of my absolute joys in life, photography, art, dance, animals, adventure, branding, marketing I mean absolutely all of those things, love being fit I’ve just come in from doing a hip class online which is hilarious and the thing that probably, I think if you were to ask me anything I’m a dangerous dreamer.  I’m a person who really doesn’t just daydream stuff I really try to make it happen, I’m hopelessly stubborn, I’m very sensitive, I’m very emotional, I’ve had a long journey of, I guess to where I am today, and I think the thing that surprises people most if they see me or meet me is that I am actually registered blind or severely visually impaired, I have a condition called Ocular Albinism and I do not look registered blind but I only have about 2 foot vision and what’s very unusual about that and why you wouldn’t know when you meet me is when I was diagnosed at 6 months, I’m the eldest of three children my parents I think struggled with it and made a very unusual decision in 1973 that they would bring me up as a sighted child because the world was not designed for people…

 

Perito:     Okay interesting.

 

CC:            …who was basically impaired, and they were worried about me so that is me, hope that kind of gives you some sort of sense of who I am.

 

Perito:     You said something to do with elephant somewhere in are you kind of an elephant trainer or something along those lines is that correct?

 

CC:            Yeah I mean this story of, so I think yes I am elephant handler and I’m a cow girl (laughter), I’m a wannabe biker chick, yeah I’m many things, Caroline who I am as Caroline is all my heart but all the things that I do they’re quite crazy and if you put them altogether and you read them out of the list I go god, what am I, but the dream to be an elephant handler came from when I watched the Jungle Book when I was 6½ years old and of course I was sitting in the front row of a cinema and I didn’t know that I couldn’t see the Jungle Book very well but my favourite scene of the Jungle Book was Mowgli and when Mowgli met the elephant and I’d always been fascinated by elephants and so as a child I had this desire to go to India and hang out with Baloo and Bagheera and become Mowgli and I always wanted to do that and when I was 17 years old when most people were making decisions to go to be, I don’t know, to go to become a Doctor or a Lawyer I wanted to become Mowgli from the Jungle Book and I wanted to be a cow girl and I wanted to be a biker chick and on my 17th birthday I discovered that my dreams were not necessarily appropriate or whatever because I found out that I was registered blind because my father gave me a driving lesson for my 17th birthday, so yeah, so that’s kind of, that was it and I did become this Mowgli from the Jungle Book eventually when I was 28 years old.

 

Perito:     (5.34) But what I like about everything you’ve said there is to say you’re a dangerous dreamer but actually you have these ambitions, these dreams and you go ahead and make them happen, so you don’t, I can appreciate if there’s something similar, but you have this thought and then it’s like “no that’s impossible let’s go and do it” and it obviously doesn’t cross your mind that there’s restriction here, you just make it happen and I guess that kind of aligns very closely with what we’re going to talk about more today as well.  So you mentioned you being in the inclusion diversity space for 20 years now and there’s obviously a lot that drives you on, what are the principles that get you excited about changing the world for the better? sounds like you’ve got a lot of experience from the past that might lead into this.

 

CC:            Well you know it’s interesting whenever I’m asked about who I am and I hear the jumble that it comes out like I mean my life has unfolded, I was never planned, nothing I’ve ever done is planned really, it goes with my instinct and I think my heart and actually all of the work that I’ve done has come out of a very tough place like a lot of my big moments or big achievements have come from very dark and painful places and from, yeah I think from huge talent and from barriers and when we talk about designing and what inclusive design is I guess for me the principle of the work I do and how I got into disability business inclusion is all in a tag talk that people can listen to and I don’t need to go back over that but is I really believe in creating a world where anybody can belong, not fit in and not try to be exacted to belong in their own unique and beautiful way and if that sounds cliché well so be it.

 

Perito:     No, I don’t think it does.

 

CC:            I believe we’re all equally unique and valuable and I think the only thing that we have in common as human beings is that we’re different, I think innovation is born from difference, I fundamentally, and this is where I become quite emotional, there is nothing that makes me more sad then when I see a child or an adult in the corner of a room being left out, I remember as a kid being in school and watching a child that was bullied, I was bullied in school actually but watching a child be bullied was horrible but worse than that was watching somebody being ignored or invisible and I think that’s a really passionate part of why I do the work I do.  The reason the work that I have done for 28 years it comes from a place of heart, a place of equality, a place of justice, a place for the right for every human, not necessarily to be liked because we can’t all be liked but be respected and be given dignity and to have the barriers removed for them to be who they need to be.  There is nothing that breaks my heart more than somebody not been seen and heard as themselves, we all don’t have to agree but we need to make safe in our world for every one of our opinions, every one of our manifestations of who we are as a person to be allowed to reach fruition and I’m sorry but I do not believe one person is more valuable than another.  There are rules in life like presidents of countries and CEO’s of companies but they are not as human beings more important than anybody else and they’re the people who are in positions of influence and power who can actually ensure that all of our voices are heard and all of our lives can be meaningful, and so that kind of segue ways into what I do because the group of people to which I belong, I’m a person who has a disability I belong to 1.3 billion people tribe in the world who have lived experience of disability and there’s an inequality crisis for this group of people, it is not a minority, disability will touch every single one of our lives and yes there is a crisis of exclusion right across the world no matter where you live in, where you are marginalised, ignored, invisible, you are not served, you are 50% less likely to have a job, 50% more likely to experience poverty if you are a child with a disability, 90% of kids with a disability don’t get to see the inside of a classroom and the reason I do what I do is I believe that that scale of a problem cannot be resolved by Government alone or charities or conventions it needs the most powerful force on this planet which is business and if business includes society includes I believe in that more core principle of inclusive business creates inclusive societies and I believe inclusive leaders create inclusive business end of.

Perito:     (10.06) There’s a lady called Cat Holmes who you may be familiar with and she if I get this right…

 

CC:            Yes, oh I have a big crush on her.

 

Perito:     …yeah she’s very good, well she came up in a book about the comment of we’re all just, I’ll paraphrase this, “we’re all just temporarily abled” and I think that’s the great way…

 

CC:            We are.

 

Perito:     …to look on this and the fact that yes we’re 7.4 billion unique humans but we’re all temporarily able and I think that’s the mindset change that we just need to be looking that is to say that this impacts on everybody, that leads us onto what you’ve kind of done to bring this to fruition.  (10.37) Dis-valuable 500 also known as the V500 why don’t you give us a bit of an intro on this cos I expect a lot of people will maybe have vaguely heard of this or perhaps not be familiar?

 

CC:            Well I believe, as I do, that inclusive business creates inclusive societies I want to be really clear, we don’t need, the world of disability does not need for business to do this cos it’s a worthier good thing to do, I believe that the disability community is hugely valuable to business and actually is a really overlooked opportunity for growth and innovation and grand differentiation and talent, it’s a mark with a disposable income of £8 trillion and this market is growing because of Cat Holmes is a great example, we are all temporarily able, every one of us will be at some point and if we look up with 1.3 billion people in the world with a disability and we’re just say there are two people that love us okay, a mum and a dad or that’s 54% of our consumer base.  So based on these principles I was frustrated over the 20 years and we have had huge success, I have to be honest, massive success around the work that we’ve been doing which has been really looking at the opportunity that can be gained between business and the disability communities but I was very frustrated that disability was always been left on the side lines and increasingly I was watching the diversity and inclusion agenda become ridiculous (laughter) I mean just ridiculous, when we were literally cookie cutting up humanity into these categories of gender and race and LGBTQ and I was like what is this craziness, now disability has never really been in anywhere central to business, it really hasn’t but over the last 10 years it has got ridiculous and what was happening with this comm policing agendas, disability was always been left and I hate to tell you but disability doesn’t discriminate it’s everywhere, do you know what I mean, it’s just everywhere and I couldn’t get over the scale of this issue and disability was being left off it.  So we did some research and the research was done by EY first of all and these are the three stats that terrify me, 54% of our governing bodies are the Boards of Business, the Leadership Boards had never had a conversation about disability, yet 90% of our companies were claiming they were passionate about diversity and inclusion, 4% were considering disability, 7% of our CEO’s are leaders had a lived experience of disability yet 4 out of 5 of them were hiding it.  Now there you go, there’s the problem, so the Valuable 500 why did we do it, well let’s be honest, the Valuable 500 exists simply to level the playing fields, it’s to make sure that disability is equally included within the inclusion and sustainability agendas of business.  The second thing its to do is to make sure leaders speak about it, we wanted to get the attention and intention of leaders so we can operationalise disability throughout the business like everything else and lastly, honestly James is to end the inclusion delusion or the ridiculousness of what is going on, now I’m probably very controversial when I say this I actually think the Diversity and Inclusion Agenda should be canned and Inclusion and Belonging should evolve into the sustainability agenda of business and so what the Valuable 500 is was this iconic search for an inclusion revolution that was launched in Davos in 2019 asking for 500 of the world’s most powerful CEO’s and their brands to commit to having a leadership conversation about disability, making a leadership action and communicating that externally with their customers and their employees and by doing that we would build a 500 strong community of leadership that we would work with to use our power and influence to change the system over a period of time to equally include disability, that’s our job.

 

Perito:     (14.35) I read an interesting article in the FT, it was only a short thing on Beethoven it was a book review actually for a new book that someone released and in it the lady was reported as saying “Beethoven wasn’t as deaf as people thought he was and he could hear from, in his left year from, if you shouted in his left ear quite closely” but what was interesting was that he ended up actually self-isolating for much of his later life primarily because, according to his notes, he got fed up with people looking at him thinking Beethoven you must have amazing hearing because you’re so good at music, what I found interesting about this is that the lady didn’t necessarily isolate that bit this was a social exclusion because of his disability that he felt this way and he isolated himself but it goes to show this affects everybody from high and low with amazing genius skills across the board and I think that adds value to what you’re doing here with the Valuable 500.

 

CC:            Yeah I think, do you know what I really want to do with the Valuable 500 before Covid and by the way Covid is now actually the greatest opportunity for all of us to reboot or reset the system and I’ve talked about an inclusion revolution that’s what the Valuable 500 was it was a radical revolution around inclusion to say listen we need to be talking about universally inclusive corporate cultures where everybody is included and everybody’s needs, the barriers are removed for everybody to engage with business equally, I mean that’s what this is about, it’s having design led thinking into business and that’s good for business and this is my point is when you value a constituent, when you value human beings you don’t exclude them, disability is a deeply uncomfortable thing that makes all of us feel uncomfortable, I mean I rejected my disability for 11 years, I was in the closet for 11 years from the age of 17 through to the time I was with Excentia as a Management Consultant for 2½ years they didn’t even know I was visually impaired, I hid it because I knew or I felt at the time that actually owning my disability would lessen my chances in life, and let’s be honest I was probably right because if you hear now that you have 4 out of 5 of our 7% of CEO’s are hiding their disability well they’re hiding it for a reason, because disability seems like damage or weak not as a source of innovation or opportunity which I believe it is and let’s just look at some small things like now one is, isn’t it extraordinary that the remote control was designed for blind people okay, to watch television, we don’t watch television, it was designed for blind people we all use the remote control, text messaging was designed for deaf people and I think that’s incredible, look how much we use it.  Let’s even look at Covid right today I think it’s fascinating people with disability have been asking for remote working for a long time and have been using digital and online communication and now the whole world is doing it and for many, many years employers were saying “no we can’t employ disabled people because we don’t do remote working” but look at it now, we’re all doing it, it may not be easy but we’re doing it and I think what the Valuable 500 was trying to do was say we want to look at the most powerful leaders in the world to reset this system and now just before Covid we had 261 of the world’s biggest brands and CEO’s.

 

Perito:     (17.58) Now these really are big companies aren’t they Caroline these are the Googles and the Microsofts.

 

CC:            These are huge James, these are the big companies we are talking big companies, the sales force, the PWC’s, the Accenture’s, the KPMG’s, the Barclays, the ITV’s, the BBC’s, champ I mean I can on an on, go onto the website and look at it and it’s the CEO’s signature who signed this, now think about it because we will have to emerge out of Covid, our system is going to have to reboot it, right it has to change so I think oddly here we have these now to 261 CEO’s, we will help them redesign this business system to equally include disability knowing to your points, you said we’ve had exclusion on mainstream how can we use that empathy and compassion and understanding and build it into our systems so we get the most out of our planet and our people, we are our greatest asset how do we do that, so I think right now what I had hoped for was a reboot of a system and that is coming maybe differently then we imagined but the need for it has been amplified by Covid.

 

Perito:     (19.14) When I was drawing up the questions this is where my thought process started to go because you’ve got 154 days to reach this target, 500 signatures, you’re almost there because you’ve got 261, so then I started thinking about what the staff or the Board at Corporate needed to do to get on board with this but I also thought about what I could to help you get to this point, do you feel that you are going to reach that or do you feel that Covid’s got in the way and is this the time to kind of almost go into supernova with this and gather everybody around to push through to the 500 or what’s your plan with that?

 

CC:            You know how I feel at the moment, No. 1 is getting companies who are in a crisis to join anything like a campaign or a movement right now is, I wouldn’t have said it’s the order of the day if I was running a business so we originally wanted to close the Valuable 500 in September at the UN General Assembly week in New York, we’re now going to extend that through to the end of January, Davos being the place that we launch the Valuable 500.  So I want to say that for starters because you know one of the things when you try to make big change happen you have to be aware of what’s going on around it, you may not like it but you have to and you have to adjust and be flexible so that’s my one, we’ll move that very quickly.  However, the second thing is it’s given us huge time to really plan and dig out and know what the next phase is going to be so once we’ve built this community of 500 what are we going to do with it.  However, that being said we are getting companies joining the Valuable 500 probably more than we expected during Covid however they don’t want to go public about it and I get that, so what they want to do, and this is very exciting for us, they realise wow we need to get this exclusion situation sorted, we know as a business we’re not going to be able to leave disability out anymore because now it’s here in our faces so what they’re doing is joining quietly because they want to be part of this very precious and very unique global community of 500 brands and CEO’s that together in safety in numbers they can learn and share from each other and reset their businesses as a community.  So what I think is happening what I didn’t plan is, they’re interested, they’re talking to us, some are joining now, some will join towards I say the last quarter of this year but what they’re doing is they want to get ahead into a peer led community where they can learn from each other and actually move forward.  So do I think Covid is getting in the way? Yes, maybe from the impatient side of me in building the 500 community.

 

Perito:     (laughter) Yeah I can relate to that.

 

CC:            Do I think we’re going to be success, yeah, do I think we’re going to be successful, well you know, everybody who knows me knows I’m the most impatient person on the planet so I think I’m a little scared honestly, I think actually we probably are going to have much bigger responsibility in the world then I ever even thought so.  When I started the Valuable 500 and the story of how this came about is the most extraordinary story but when I think about it I know everybody knew that we needed this, I mean the disability world, the business world, everybody said “we need to get business leadership engaged but there’s no way you’ll do it Caroline, you can’t do it, you’re too ahead of your time, can you just not continue to do what you’ve done really well and do that” and I was like “no because we need accelerated change” and everybody thought I was crazy and let’s be honest I am crazy but we did it and I have Paul Pearlman as my Chairperson, I mean everybody thought he was crazy about sustainability and I have Virgin Media and Geoff Dodds and we have Omnicom and One Young World, I’ve got some great partners, 85 partners around the world, we built this on nothing with nothing, I had to re-mortgage my home, like we built this and then we made history and then we got it but I didn’t think that we were going to have the responsibility that I think is going to fall on the shoulders of the Valuable 500, I think it’s going to be a global game changer and I don’t know how I feel about that yet, I’m so inviting of people telling or giving their advice on what they’ve learnt on building a global movement and what they think we should do, I’m scared you can hear it in my voice, I’m incredibly excited in some ways I’m overwhelmed but I know that somehow we’re are in the right place and the right time and I don’t have answers to all of the problems but I do believe and I think, the reason I’m so appreciative talking to you is I think we are at this moment in time it’s very painful and people with disabilities are really being overlooked and it’s very scary but in this time we have to take the good out of it and we have to find out what we can do to ensure this never happens again and I think we have the right tools, the right leaders and the right moment and I think my biggest call out now is for the greatest thinkers and the greatest designers to do design led thinking with us in what we can do to remove the barriers and to remove the excuses and to make it easy for people to make sure.

 

Perito:     (24.16)  Cos I think from my side having seen how the Coronavirus issues have panned out that it has caused that, and you mentioned about the working from home, the electronic communication, there’s no reason why there wouldn’t be a whole population who can operate effectively from home now because the framework is in place to do that so the barriers that may have been in people’s minds or shall we say the excuses or the justifications, the unconscious bias that led to those decisions have now been overruled, they’ve been proven to be incorrect and overcome.  I agree I think you guys are in a place to really punch through and see where it can go.  (24.49) With that in mind how can listeners help the Valuable 500 achieve its goal, what can the people who aren’t CEO’s and signature C suite and Board level in companies do to help you?

 

CC:            Well ever persons engages with business don’t we, it doesn’t, you don’t have to be Richard Branson to be able to make this change happen of course the Valuable 500 is finding 500 of the most influential leading brands and their CEO’s but who do those brands and CEO’s listen to, they listen to the consumers, they listen to the next generation talent that they want to employ or retain and they care about their brands so I think what I ask everybody to do, no matter where you are, if you’re working in an organisation see if your company is a Valuable 500 company, if not then ask the question, as a consumer you can do the same.  I mean the big thing is to get people saying, “yeah we want our company to be part of that”, catalytic group that will recess our business system that will equally include anyone and I want to be really clear that disability, I’m not asking for disability to be petted more than anybody else, not at all, I actually, I just, I want that all of those completing agendas to be evened out to a continue of inclusion, so that’s how everybody can help just get it out, ask your employer or ask the customer you do, you know the company you do business with or the brand that you do business with, “have you heard of the Valuable 500?  Are you going to join and if not why not?” and I think that’s what you can do for me.

 

Perito:     (26.15) Good book, I don’t know if you read Ayn Rand’s Atlas Shrugged, there’s one of the main characters is called Hank Rearden and in the book he talks about essentially the free economy because a lot of they’re called looters these companies that started to take from places then and overtime in the book, without spoiling for everybody, it’s a little like at the moment actually the seismic shift that people are waiting for happens towards the end of the book and essentially the world collapses and they can rebuild it, what’s interesting about the Hank Rearden that he’s got the mentality of, “if you don’t want to buy from me then I will suffer as a result of that and the free market, the free decision making that people have got you can decide collectively and I will be judged based on that” and that is why Hank Rearden is such a great guy in the novel because he has that approach and general message out there to everybody’s use your collective buying power get together and say “look actually we’re purchasing, we have to make the right decisions alongside you” is that fundamentally it?

 

CC:            Yeah, I think we’re all allies for each other aren’t we?  Isn’t that the one thing that we’ve learnt in this is that we are all interconnected and actually what we do affects other people so all I’m asking for is, you know isn’t there that old analogies like “treat people the way you wanted to be treated like yourself” because it will be you, you are future proofing your world and the business system, if you don’t yet experience disability to Cat Holmes you will at some point.  Your future proofing your world that you work in and that you buy from for yourself and I think that’s really important so just for allies for each other, not everybody’s passion is going to be disability inclusion not at all but I think all of us have the passion for human inclusion and I think that’s how we can do it, it’s just a question, can you ask the question, that’s a really good way because if you were a person who acquires a disability your world will change and because at the moment the world is not designed with significant difference to belong and what I will say right now as a visually impaired person, severely visually impaired person I am really, really, really feeling isolated because of the constant level of Zoom or different platforms that exist they are not fully accessible and I’m on a screen nearly 12 hours a day right now and I think, I feel like a digital introverse and I now understand I’m so sorry for anybody I never had the compassion or the empathy for but it must be like if you’re an introvert in a crowded room, I feel like that online now and I can’t see, so I think we’re all learning aren’t we, (laughter) just all leaning that we all don’t have the same experience but I need to hear, I think the business systems and the world that we to need design needs to try and make room for as many of our different lived experiences.  So I’m an ally for anybody who experiences a sense of isolation, you don’t have to have a disability for that, you don’t, but I will always ally for somebody who has a sense of isolation or a sense of being left out and that’s what I ask for the Valuable 500 too.

 

Perito:     (29.19) Did you feel that sort of experience when you went to Davos recently because there must have been a whole array of different people of lots of different agendas when you went to talk about the progress of the V500, how did it go and were you kind of just do your thing and then leave or were you kind of mingling and talking to lots of different people?

 

CC:            You know I live in this really strange world and the thing is unfortunately I had a really, really big cry about my eyesight over the weekend so this is very raw for me at the moment.  I have spoken about my vision quite maybe as much as I’m feeling how hard I’m struggling because of how the world is designed.

Perito:     Well Caroline, don’t feel like you have to if you don’t want to. We can cover other things.

 

CC:            No I mean don’t be silly it’s very important probably now, I mean gosh it’s important to talk about it I don’t feel it’s a bad thing to be honest about when you are feeling more vulnerable, I feel very vulnerable at the moment and I think that’s okay.  I’m 5’ 8”, I’m very pale, I’ve got blonde hair and I use a cane so I definitely use the cane but I use the cane in certain circumstances, a white cane for my sight but in Davos if my cane is not in my hands and I’m using a sighted guide or a colleague to be with which I do in Davos I have a colleague around me, you will have no idea that I can’t see, and then you will watch my personality because I learnt as a young child when I didn’t know I was visually impaired that I realised, because I could hear very well and I heard that when people were loud that seemed to make something, that sound was very important to me so I use my voice a lot or I reach out and touch you and I’m a big hugger, like I love hugging right, so I’ve learnt how to compensate for lack of sight by being more vocal or more verbal and very huggy.  So I went to this Davos situation and there’s so many people around I cannot see one person and their badge but I look like I can see.

 

Perito:     (laughter) Yeah.

 

CC:            And everybody is like going so I’m a complete disconnect, like I don’t make sense to myself or to anybody else but what I can definitely tell you I love people, I love hugging, I hope I hug the right person but I’m exhausted trying to see and trying to cope when I can’t and that’s the next phase of my sort of journey around vision and permit that I have to do because I don’t know how to let go of this sort of caricature of myself that I’ve built up but I definitely need to change the way I work and Davos was a really big trigger for this year cos I really struggled and this Covid situation it’s a really big trigger for me again and I know now I have to give in and I have to say I need help, I have to because it happens every few years and here we are again.

 

Perito:     (32.08)  But that’s part of growing isn’t it the experience adds up and then you can learn, improve, learn, improve and keep on going but you must have found in some degree with Davos that you didn’t have the same, so if I turned up there I would be mega nervous the whole time and then hopefully I wouldn’t say the wrong thing or something but this situation it sounds like you were almost freer to engage because you weren’t restricted by what I would bring, my own barriers that I would put up.  Was that the case or was it just…

 

CC:            Oh no not at all.  No oh my gosh no I over compensate, listen when I’m frightened and I’m nervous and I feel vulnerable and scared I over compensate, I try to deflect, I try to distract because it’s hard, you don’t want people to see that your nervous or your scared and from a very young age I’ve learnt how to be the world’s greatest deflector and that’s exhausting, it’s really tiring and I know I went to Davos probably just as nervous you have at a lot of weight sitting on my shoulders, can I also say I’m only one of a team of 7 people who I want to make sure that I do them proud for all the work that they’ve done and our partners and people who’ve believed in me, no I think the more nervous I get the more I nearly reach outside myself and for anybody who has done therapy or anything like that knows that that’s not very good and as I grow older I am learning how to be a little bit honest and I will say my life the way I live my life and the pace I live my life because I’m over compensating can’t really continue and I’m adjusting at the moment but I loved Davos I will say for one reason this year, can I just tell you I felt very proud coming back a year later after launching this, this iconic campaign that people behind closed doors were like who on earth does she think she is, so I went back with a very proud and happy heart, yeah so I think that probably was my.

 

Perito:     (34.10) With the successes that you’ve got?

 

CC:            Oh just so proud of the people I work with and for not giving up and every time that you come up against a barrier we’d find a way to remove it and then I think the sense of achievement I’ve very very rarely said in my life that I’m proud of myself and I think a lot of people might look at what I’ve done and go what do you mean, that you’re not proud of the things you’ve done, I think I was more proud and I am more proud of not giving up on the Valuable 500 of flexing constantly and always having to try and think on my feet and pivot and move with our team to try to make it happen it’s yeah, I was probably more proud and excited in Davos this year and that certainly compensated for the nerves that were real, they were real, they were real.  I’m still worried offending somebody like I can’t see your face James so if you walked past me.

                   I’ll give you laugh, I really, really want to meet Tim Cook of Apple like I really do cos Apple is the greatest justification for why I do what I do, I mean Apple is the company that first triggered a trillion, it’s the first brand in the world and based right in its DNA is universal design and inclusive thinking like I mean this is the company I want to meet, I am not joking you, I bumped shoulders with the person and I was like oh no I’ve just bumped into somebody and as I went on 2’ on my colleague turned around and said “that was Tim Cook why didn’t you say hello?”, and I’m going “because I can’t see if that’s Tim Cook”.

 

Perito:     (laughter) Yes, you’re not helping me here throw me a bone.

 

CC:            Yeah so there’s two things wrong with that I couldn’t see him and secondly my colleague is supposed to be my eyesight, he’s supposed to tell me that’s Tim Cook so I can go and talk to Tim Cook and the thing is I could have had that conversation because that’s whether you like Davos or not Davos is that kind of place, I met Sharon Sandberg for example, this is the kind of, their the meetings that you have, if there’s one place in the world you’re going to bump into somebody it’s there and the thing is I need people to tell me that I’ve just bumped into that person so I can go and talk to them, but I didn’t look like the girl who couldn’t see Tim Cook but I couldn’t see Time Cook.

Perito:     (36.19) But that’s a perfect example of a hidden disability and peoples, the biases that people, the ability bias that Cat Holmes talks about a lot and transferring…

CC:            Yeah.

 

Perito:     (36.28)…just because people see things you can’t allow that to mand?? out to the CEO’s out there are making these decisions, that’s a great example you just can’t assume and a great example.

 

CC:            No you can’t and 80% listen let’s, can we just call this to be true, first to all about that 1.3 billion people who have a lived experience of disability 80% of that is invisible and 80% of that is acquired between the ages of 18 and 64 so there’s so much statistics and data that we don’t know and understand around disability because we haven’t invested the resources that are required to know about this and because it’s disability has been seen, this constant the survival of the fitness, disability has been seen as not that and this narrative around inspiration or charity or weakness and damage, there’s so many confused ideas that are conjured up in our mind about disability and I think the biggest thing that we’re all relating to now is invisible disability that if you were to look at me or my sister who has exactly the same condition you’d go “what, what are you talking about those two girls are visually impaired and registered blind”, you wouldn’t believe us and so it’s take us a long time as young girls growing into young women and middle aged women now because we were so scared to ask for help because we would think that you would feel we were trying to get attention and so this limbo land of invisible disability is exhausting, exhausting and I get very upset.

 

Perito:     (37.58) Well just like Beethoven he was very exhausted by it he just went and lived in his own house and isolated himself.

 

CC:            Yes so can I tell you, you told that story in the beginning and I could feel my heart start to beating and going I understand that because some days walking outside our house when I look like I can see and the very simple thing of walking into a shop and not being able to see and having to say I can’t see and go through it all again, it’s like I have to come out of the closet every day several times a day and that becomes exhausting and so, so yes I understand Beethoven becoming incredibly tired that’s the tire and then on the other side of the hand is biker chick adventure personality who wants to do it all and fix it all for everybody else and make the world happier, I am a people pleaser, or disease to please in my nature so there’s a lot going on in that which makes me just very human but I can definitely tell you one thing I am not inspiring and I certainly haven’t inspiring because I have a visual impairment or a disability I’m just a stubborn old goat who wants to make sure that we remove barriers so that we can all belong in our unique and individual ways and it’s really possible and Covid has shown us that and often I believe if you get a handful, a handful of influential compassionate committed leaders, just need a handful man, just a handful, you can change it but if you don’t have those leaders you can’t.

Perito:     (39.18)  We need a handful who will suddenly start making good profits and then the profits will change for more changes and then everyone else will be going “why are they doing so well” and then all the good ideas pop up because there’s innovation diversity across the design board, you’re not just buying from the same pot and then all of a sudden they’re making even more money and so on and so forth and that’s how it really should have always been but it’s good and I don’t think you’re a stubborn old girl I would describe you as a social reformer, this is the words I would use, that what your trying to do.

 

CC:            (laughter) I don’t what I am but one of the things that I would say to you is, you know when we talk about disability inclusion we don’t talk about it simply as employment we talk about the consumer piece more than anything and I just want to refer to Netflix for a second, do you know that Netflix was one of the first online content platforms that was accessible and when they did, when it created, first of all it was accessible so in its captioning and the way it streamed its work but secondly it started to have disability programming and can I just tell you it didn’t do that cos it was being worthy right, it did that for a competitive edge because it copped on there’s 54% of a consumer base that would be interested in it, so I think that’s really interesting to me that they did that and then you look at because then everybody needs to know they needed competitive edge so you’re right, so when brands start realising that real full human inclusion in the way its designed its business, its services and the way employees gives it a competitive edge then it will follow, that’s when we’re going to see a mass change, is that those first earlier doctors, those really brave pioneers in this space which Apple was around the inclusive design piece that’s the trigger and then let’s watch the momentum of the disease to get to a critical mass.

 

Perito:     (41.01) Well I was thinking about this cos I lot around the built environment as well and I was thinking about construction and construction like your designing a house is made up of lots of different products and those products have to be carefully designed, materials, the science behind it but construction of your house is not seen as a product and it’s seen as a unit or a result or just a Specification and end goal but if people in construction saw things as a product they would be better able to look at it and see how they can make money by designing for the most customers.

 

CC:            Yeah.

 

Perito:     (41.35) And I think it’s just that adjustment isn’t just the tweaking in mindset just to say what you’ve been thinking of all these years is wrong.

 

CC:            It’s tweaking, it’s so true listen it is something your listeners should do go and look at the Ikea ad that actually won the Canne Dor which is the Oscar of advertising, if anybody wants to go and watch something brilliant, well actually there’s two thing is want your listeners to watch, watch that there’s an Ikea ad which is talking about how they were democratising furniture and making tweaks to their furniture design that would include the disability market space, now they weren’t making new things just tweaking their furniture so democratising it’s so they could have more consumers I mean brilliant.  Look at what Lego did when they brought out the little Lego figurine in a wheelchair, look at democratising it, look at what the Barbie dolls, this is not rocket science it’s tweaking it and the other thing I would love your listeners to look at just, it’s a 2 minute film it’s #diverseish it’s on You Tube go and have a look at it and because we’re having conversations with people like, you are starting to have these broader conversations nobody’s right and nobody’s wrong we don’t have all the answers with this but it’s about expanding our mindset, it’s about enlarging our market spaces, it’s about not feeling threatened, it’s about making people feel comfortable to not know the answers, not shaming people, not shouting at people but trying to open a safe place for our businesses, our communities, our societies to kind of, how do we do this like how do we do it and that’s why I love the Ikea and the Lego and Barbie examples because it’s just building on expanding opening our minds to think about how can we include more people because business makes more money, more people are included, there’s a cost to exclusion within our societies, there’s a cost to inclusion in our exchequers and it’s just not morally right but it’s insane to leave a business on your doorstep why would you do that.

 

Perito:     (43.40) Well particularly under duress of the client that we’re in at the moment where every penny is a prisoner yeah that’s very interesting.

 

CC:            Yeah and I really wonder, I really wonder if I’m right or if I’m just being ridiculous that I do not believe diversity in an inclusion agendas are the future, I believe if we’re looking at making our business world inclusive inclusion, full human inclusion needs to be part of the sustainability index which is reported at the highest level of Boards and no lived experience can be left out, you’re not going to get it all right but you need to keep asking again and again and again, it is no longer acceptable.  If we come out of all of this excluding people, I really wonder what on earth have we learned, no human being is more important than the other.

 

Perito:     (44.34) Well following on from that I’ll skip ahead to a question further down then so I feel at the moment that the Coronavirus has given momentum for these changes to occur particularly in the workplace and our homes and we’ve kind of covered that off, what does that vision look like for you and to see what will come out of this current Covid-19 crisis?  We’ve touched on a couple of points.

 

CC:            Well I’ll tell you what I’m going to do, well the most important thing I need to tell you after this crisis I have got to hug somebody, I am hugging trees, so like I do hug my tree, so I think what we’ve learnt is, first of all human beings are communal and we’re social, we’re doing our very very best and we’re showing that systems adapt, we’re showing that systems change, so knowing that systems change then we need to fix our broken systems that exclude and there is no excuses, none, there are no excuses for that anymore, we know our systems can adapt, we know when we want to, they need to change.  The second thing is that we really need to understand, I believe, that we are as a race we co-exist as human beings, human beings we are not numbers, we’re not widgets we’re human and I hope that we have all leant a sense of collective exclusion so we have the empathy and compassion and I hope that we use that really well, and I think thirdly, more importantly, I wonder what will our leaders, what will we expect of our leaders, like lot will our CEO’s, I’m going to just talk about business leaders, what skills are those leaders going to have to have.  They’re certainly going to be very different skills then before and I’m just really interested in what leadership looks like post Covid because it’s going to have to be, I believe, a far more balance between the head and the heart, it definitely is going to have to have the human and the economic at either side we are going to have to rebalance that in play.  I’m really interested in what, how do we help our leaders, I’m really interested as I say about that inclusion means inclusion for all and everyone and I just wonder that it’s going to take time because I do want to be mindful that every year how many people die of Diabetes or Cancer or diseases in the global south that never stopped our global economy.

 

Perito:     Yes, very interesting point.

 

CC:            I’m very scared about that, I don’t know how anybody else feels but this crisis is around us okay, this is horrible, I’ve nearly lost a brother because of it, a 41 year old incredibly healthy young man he nearly died right and I have friends who are losing people but I also before Covid how many millions of people are dying without me knowing, without us knowing, that didn’t stop our economy, what does that mean for the world that I’ve been colluding in around inclusion.

 

Perito:     (47.24)  There’s another comment about it in the FT for Saturday at the weekend where some American General, this is back in a couple of years ago, I’ll have to refer to back to the author later but he was apparently speaking to a General and he said if we could prove that the Zika virus carrying mosquitos were actually Isis controlled mini-drones we could get as much funding as we wanted and that harps back nicely to what you were saying in terms of Malaria, in terms of all these other things how does that play it, why is this one particularly different?

 

CC:            Yes well why and I think what has blown my mind a bit through this time I can’t help thinking was I colluding that our world was trying to be equal because I’ve realised now actually did I do enough, was a lost in own inclusion bubble around disability inclusion when actually there were people dying under my nose, in my world, in the millions, in the millions and the millions and millions and they continue to do whether it’s through conflict or disease or poverty.  Why didn’t we just globally stop that so they’re questions are going on in my head at the moment which have I no answers for that make me feel not very proud of myself as well.  I’ve been going down this angle and people might say well you can only do your bit and your whatever and yes I know that but I just have lots of questions I think, lots of questions but I don’t have answers.

 

Perito:     (48.50) I think my conclusion drawn on it was that the mistake I’ve possibly made with this is to only to start looking at inclusive environments from a social distancing because of this particular issue but you need something to ignite that spark and what you’ve got with the Valuable 500 is a tool to go out there and effectively weaponise the inclusion diversity gender and to get it into these companies that need help to make the transitions so although you are right in the fact that it’s probably incorrect that we’ve only just started to have these discussions based on something that’s a Pandemic now but actually it almost doesn’t matter because the end result here is that the change has to happen and you mentioned about changed management at the beginning, change only really happens when people want it to and at the moment with the Covid-19 my belief is that this is an excellent opportunity because people are looking for change and the Valuable 500 can happen.

 

CC:            Well I hope so but I also think we need to be mindful and when you want change to happen and being a changed management consultant which essentially one of the things is you also need to take people, me included, where we are and acknowledging where people are and accepting where people are, human beings by our very nature are tribal and topologically we are tribal, we know we like the same so inclusion is going to be, I mean real inclusion is going to be, let’s not deny it, it’s going to be hard because it requires us to be less selfish and me absolutely included in that right and I think it’s hard and I think until we own it it’s really really hard and I think we have to be gentle with ourselves in knowing that and then also not gentle with ourselves, do you know what I mean, because I think we fear that if I give you I take away from myself, currently our world is based on a scarcely model and inclusion, real human inclusion cannot flourish with a scarcely mindset, we must be allies for each other and that is a lovely sentence to say but it’s really hard to do so every small whim we need to jump up and down and high 5 ourselves on cos we’ve gotta just build on success cos it’s hard.

 

Perito:     (51.01) Absolutely agree and the ?? focus is a great way of looking at it.  So thinking from an inclusive design point of view then so Ann as a partially person what do you feel has been the greatest challenges that we haven’t talked about so far just setting up your company that’s Binc and running the Valuable 500 as well?

 

CC:            My greatest challenge without a shadow of a doubt is myself, I think I can honestly tell you is we all are better when we are being ourselves, and that Oscar Wilde quote that my husband and my father constantly quoted at me, be yourself cos everybody else is taken, your greatest challenge in anything that you do is where you on this self-acceptance journey, the more you know and are aware of yourself and accept who you are that is to me, that’s the dew dew that’s the sweet spot for sure so I would say to you that as a leader and a founder of several organisations I definitely I think I get better (laughter) like why I get better as I get holder I hope so I think that’s the No. 1 thing.  The second thing is we were very much all of our work is being very pioneering, very green site, very ahead of its time and I think getting funding for our work has been very very difficult hence re-mortgaging the house and thirdly I think the other challenge but also the kind of cool part of it, you know when you’re doing something that nobody else has really done you kind of and if you really believe in it because I really, really, really believe in our works as with all of teamwork fantastic really believe in it, there’s something very very exciting about pushing through when nobody else really sees it, do you know what I mean.

 

Perito:     I do yes.

 

CC:            There is something, I’m the entrepreneur there, at times it’s desperately lonely, god almighty it’s so much nicer when everybody agrees with you (laughter) they think you’re great but actually I really, listen I know in my heart this is part of a solution so in a way I’ve nothing to lose really do I, I’ve nothing to lose because you’re only building on something that’s so unique and new and I’ve stopped taking everything as I’ve grown older so personally I take my work very very seriously, I just don’t take myself as maybe seriously as I would, like I would have thought every failure that I ever had before was cos I was shit or something do you know what I mean, I’ve now been able to detach my work from myself so my work and my, which I’m very passionate about as you can hear, it’s what I do it’s not who I am and that’s a very healthy place to be in now.

 

Perito:     (53.44) Well it is a special achievement the Valuable 500, Binc and everything that you have done in the past has been driven by your stubbornness, your blend of ambition and aim and your kind of your go get it attitude so it’s interesting as you say you’re getting older, your being able to kind of almost diversify your own skill set out there as well.

 

CC:            Yeah and I think if you were to say what’s in my secret bag of tricks I could definitely tell you I have lived a very difficult life, I’ve actually had quite a lot of trauma which I don’t speak about and I don’t make that my story it’s irrelevant but it is where I’ve learnt my greatest, my greatest secret weapon is the life I’ve gone through which has actually got nothing to do with my eyesight, they always it’s to do with my eyesight it’s not, so I have kind of flexed that grit muscle, I’m highly creative that it does help greatly and I do believe in magic, (laughter) I do believe in the phosphorus which is like this, I don’t know if you’ve ever seen it but if you swim in certain seas around the world and my favourite is off the coast of Crete, you can swim at night in the sea and you shake the water and it lights up and that’s phosphor essence and I love that and that to me is the hope in the world.  So that’s my kind of ingredient for success.

 

Perito:     (55.06) So the tools that you’ve used and the barriers that you’ve come across how could they have been designed better to help meet your needs and I’m thinking more from maybe Caroline as probably a younger person perhaps now rather then where you are now and what were the worse ones and why were they bad?

 

CC:            Glass doors bad, can you put marks on glass doors, things that have become brilliant is when I go into certain shopping into supermarkets now I can have people who are sighted to help you shop, I have to say Google Maps as being the best thing of all time.

 

Perito:     (laughter) It’s handy.

 

CC:            Having a camera on my phone so I can take pictures of it so I can see things when I never could see things, it would be really nice when you into a takeaway or you know like when you’re trying to, you know the way that menus are often behind people and they don’t have a hold menu like seriously would you just not have a menu so that I can actually read I don’t understand, let’s be honest.

 

Perito:     Do you not want to sell this.

 

CC:            Yeah like really do you not want my customer space.  I also know learnt through doing the Valuable 500 that when I use to do videos, I’m really bad at social media by the way which is dreadful for a campaigner, why was I not captioning my videos, how horrendously exclusionary was I so I found this thing called Clipomatic. It’s brilliant. so I was actually doing captioning videos like why would I exclude somebody from a conservation so as far as I’m concerned every single piece of communication online needs to be captioned for people who have hearing impairments but more importantly if you’re in an environment where you can’t have your sound on anybody could read it and also for people who don’t have the same language like simple things like that’s amazing.  The other thing that I think that has really really helped is training when teams of people are trained, for example in airports, on aeroplanes or in gyms, another great one, if you go in and you say “listen I’m visually impaired” and the team have been trained to know what a visually impaired person is brilliant, they’re not scared of you and so they help you and we just get on with the business of training, do you know what I mean and the last thing most importantly is seeing visually impaired or people with disabilities in the media talking about who they are, what they are and anything but disability it’s amazing how much that can change things and so that means you need to have the accessible online technology, yeah.

 

Perito:     (57.26) Good list yeah thank you very much for that that’s great, so drawing to a close then so I’ve kind of left the last question a bit open so basically any final things you’d like to add on, any topic at all, any kind of observations, you can sing a song if you like or you can whatever you like, anything that springs to mind?

 

CC:            A few things I would suggest to anybody who is interested in inclusive design Cat Holmes, yeah I love her, you’ve got to listen, you’ve got to, follow that lady she’s amazing.  I would also suggest anybody around the issue of vulnerability you’ve heard me speaking about vulnerability a bit today and I think we talk about inclusion, inclusion has to start with yourself alright, regardless whether you’re a designer, an architect, a business person, it doesn’t matter you have to be inclusive with yourself so I would say understanding who you are and what you are and vulnerability, Brené Brown I know she’s talked about a lot but please just, she’s incredible and I think that’s a place where I’ve got an awful lot of resource recently and a song (laughter) the song that just comes to mind when I think about, I wish I could sing to you, I love singing but I can’t but I wish I could is sometimes when you’re doing something and you’ve, when you’re trying to make something happen and you can’t, you can kind of feel a little lost and there’s this beautiful song that I’ve been listening to recently called “I say” and it breaks my heart.

 

Perito:     (50.00) Who is it by?

 

CC:            I’ll have to find out whose it by now for you.

 

Perito:     I’ll add it to the directory.

 

CC:            (59.10) I think it’s a lady called Lauren. That’s a typical Caroline Casey thing. This song makes me feel that I can fly and so I often think finding a song just to bring you back or reading a book or taking a walk outside, when you’re trying to make change happen it is hard and that’s okay because if it was so easy somebody would have done it before and so when you feel a bit lost and you feel like you’re going to give up go find your thing, find your song, find your run, find your ice cream, find your film, find your friend, hug a tree and for anybody right now whose feeling a little disconnected even though we’re supposed to feel all connected (laughter) I really do suggest you might hug a tree or lie on the grass if you can because it makes it all feel a little bit better and the last part I guess I want to say is for anybody whose losing or has lost somebody through this Pandemic I just want to say I’m really sorry having lost a father very recently and missing him deeply at the moment, take your time, be where you are and I’m very sorry that that’s and I have real compassion for what anybody’s going through right now.

 

Perito:     Thank you Caroline that’s great so I’ll draw the podcast to a close, so thank you for joining us today Caroline.

 

CC:            Thank you so much.

 

Perito:     It’s been really good to hear about everything you’ve done with the Valuable 500 but also for the attention and the effort you put into the podcast as well, I’m definitely impressed by the progress you’ve made with it in such a short space of time and the fact that you can go to all these big events and really push it out there and you’re actually making change happen so it’s really impressive and I know everyone will want to see what they can do to help out, so if listeners want to find out more or perhaps they work for a business that could be a signatory then head over to Caroline’s website that’s www.thevaluable500.com I’ll add the details to the transcript and the podcast introduction information too along with the name of the artist for that song, so don’t worry if you missed that out as well.  You’ve been tuning into the Perito Podcast Our World without Boundaries thanks for listening everyone everywhere.

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Our World. Without Boundaries Podcast Ep4 In The ‘Inclusive Designer Series’ With Gavin Neate of Neatebox

In this episode of the Inclusive Designer Series we hear from Gavin Neate of Neatebox who talks about his experiences with as a Guide Dog Mobility Instructor, founder of Neatebox and why it is essential that we always think critically when it comes to problem solving in order to develop the best new products and innovation.

Perito: Welcome to the Perito Podcast Our World Without Boundaries. A Podcast all about creating inclusive environments and about helping us all become expert at identifying exclusion and creating 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 everyone become a community expert and recognise exclusion and someone who can then contribute to a design process and make or advise on creating 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 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 this episode we’re really pleased to be joined by Gavin Neate who will be talking to us today about a variety of subjects including mobility, technology and his company Neatebox.

(0.55) Welcome Gavin how are you?

 

GN: Truly awesome to be here I couldn’t be happier to be involved in the Perito Podcast, you guys are obviously covering an area which will become apparent as to how close that is to my heart and how important I feel the work that you’re doing is.

 

Perito: (1.14) Oh thanks for saying so I just had myself on mute there (laughter) which is a good start, let’s find out a little bit more about who you are, so tell us a little bit about who you and your background?

 

GN: Yeah so my name’s Gavin Neate I joined Military Police when I was 17½, I spent 10 years in the Royal Airforce as a Military Police Dog Handler, in 1996 I left the forces and joined Guide Dogs for the Blind where I trained for 3 years to become a Guide Dog Mobility Instructor. A Guide Dog Mobility Instructor is the person who trains the person how to use the dog, so yeah everybody goes “oh wow you must love puppies then” I’m like “no not really” my real passion was for, and I liken it to Lewis Hamilton being pit crew, my real passion was preparing the dog, handing the dog over to the person, helping the person get the most from the dog and then watching them go off down the road and it was amazing job, I absolutely loved it, I did it for 18 years and I had never intended to leave, I had never intended to be a businessman, I didn’t want to have a business, it was not anything that I had aspired to doing but I’m just really, really lucky that I had the opportunity to do it so yeah that’s where I am as a businessman.

 

Perito: (2.26) One of the earlier podcasts I did was with a lady called Jill Allen-King and she’s been blind since the age of 24 I think it was, one of the early questions is she pointed that how her, she’s had 7 or 8 guide dogs over her lifetime and in the recent few they’re a lot more treat based training she was saying.  So essentially the dog gets a treat almost every 5 seconds.  It gets to the end of a pavement and we’ll have a treat and then it goes up here and have a treat whereas she felt some of the earlier guide dogs including maybe 5 of the 8, maybe 6 of the 8 had been much more, I don’t want to say professionally trained because I honestly don’t understand it enough but perhaps they had been trained in a different way which meant that more time had been spent, (3.10) do you recognise that or is it something perhaps that might just have been applicable to Jill’s dogs?

 

GN:  It’s a really interesting question this is very much the way that dog training is going just now which is food reward.  It’s all very much positive reinforcement but it does require the dog to have or the handler to have a pocket full of treats and the dog to constantly get rewarded whenever it achieves one of the small goals.  Now I was a dog trainer in total 28 years and I very seldom use treats as a reward, I used praise as a reward. So you get to a park and the dog gets a free run so there’s the reward in getting to the park or whatever it might be so I didn’t use it, that said it’s a little bit like that moment in Life of Brian where somebody says “follow the gourd” and somebody says “follow the sandal”, the truth is you can achieve different goals both routes, neither route is wrong it’s just that one route might be more difficult than the other to achieve now I think when it came to dog training the food reward is kind of push back against the idea that we used any kind of dominance theory or pack leadership theory and it kind of pushed back against that, a lot of people might say that it pushed too far and now you end up with dogs that are just focussed on treats all the time and if we liken that just for a second to children you could say to yourself well is it better having a child who knows where the boundaries are and knows that if they go over those boundaries then they might be in trouble or are you better off having the child that is constantly looking for a reward from you for achieving something that you wanted it to achieve and I always think to myself I kind of like the boundary thing. I always liked the way that my dogs worked for me because they wanted to work, or they wanted the praise not as it would be if I was a Mobility Instructor now, it would be my dogs are working for me because they want the treat.  So I totally understand it, I’m reluctant to ever say one is wrong and one is right because when you do that you start getting yourself into a position where you’ve become partisan and I think we already know without pointing any fingers in any directions just how becoming partisan is probably not a good idea, society is far too separate because of I’m right and you’re wrong type politics.

 

Perito: (5.25) Following on from that, one of the things Jill was pointing out is extra costs because the extra costs of having to feed these animals, I’m 6’ 5” and I always look at these big dogs and think I’m kind of like that version or this version of me cos they’re big dogs and strong and they must be going through an awful lot of treats and Jill’s there obviously struggling with the financial costs of having a disability anyway and then this treat based dog mobility thing comes in so while I agree with you about not going too far down this there are, straightaway, interesting nuances.

 

GN: I think it’s all about being positive, I don’t think I was ever that negative with my dogs I just created boundaries and bringing it back to children for a second you could say, “here’s a chocolate bar for you because you’ve been great today and you’ve cleaned your room “ or you can say, “come on let’s go to the park and play football” and I guess over a period of time humans, children, because I believe they are would actually be going “do you know what I wish I could go out and play football” that’s the bit I’ll remember, that’s the bit that I remember of the relationship I had with my parent it wasn’t the amount of times they gave me a chocolate bar.

 

Perito: (6.35) Yeah that’s a good observation.  So next question then is do you prefer The People’s Front Of Judea or the Judean People’s Front?

 

GN: (6.41) To be honest both of them what can I say.

 

Perito: (6.43) (laughter) So you’ve covered off a little bit a life and career before starting your company Neatebox so are there maybe a couple of comments or thoughts about that perhaps you haven’t covered in the last couple of ??segments??6.55 that you wanted to go over again?

 

GN: Oh yeah, definitely so if you look at the situation, I was a Guide Dog Mobility Officer from 1996 onwards. In 2003 I started getting involved in technology because people were turning up with GPS on their shoulders and their phone was starting to talk to them in different ways, the 2006 iPhone bought out voice control which meant phones were talking to you which was just, to all intents and purposes just a glass screen as we’ve got now but the phone was actually interacting through voice so that the blind person could interact with it and because I got really excited about technology and mobility and guide dogs. I started realising that this smart technology was going to be very much a part of people’s lives and then I started thinking about ways that the smart technology could address some of the issues that my clients were having on a day to day basis and the very first one, which I’ll talk about in a second, was a pedestrian crossing system operated by smartphones.

 

Perito: (7.50) We’ll come to the product side of things later because that will be interesting to chat through. What are the top things you learnt as a Mobility Instructor that you carried through to the design and development work with the Neatebox products.

 

GN: So interestingly when you are a Mobility Instructor, your job, initially, is to be on the person’s shoulder and to explain to them how they should interact with their dog but ultimately you need to be not there at all, you don’t go from being on their shoulder to not there what you do is, is you increase the distance between you and your client over a period of time as they become more comfortable and confident with giving the instructions to the dogs and reading the dog’s behaviours you are further away but that means that you get to see them from a distance, you get to see the world that they live in and the world that they have to interact with in order to be independently mobile and because you’re increasing the distance from them you’re actually seeing them interact and people interact with them and indeed their environment without those people seeing you, so you’re getting to see a snapshot of somebody’s life from a professional point of view and seeing how they’re going to be the day that you’re not there as much as the day that you are there and that’s where you start seeing the real challenges they have and will have on day one plus whatever because that’s the world they live in.

 

Perito: (9.03) That’s really interesting so you’re essentially being able to work as the inclusive designer, the fly on the wall inclusive designer. Watching how your training, essentially your products in action and then you can learn. You’ve got your analytical mind clearly so that then you can start applying those and looking at how to increase things.  That is, I guess in a mini way, what the podcast is about – sitting on the shoulder of other people’s experience and going through it.

 

GN: Yeah of course, people said to me later James “so tell me about your market research?” and I said, “I haven’t got any market research” and they would say, “well how did you come up with your idea?” and then you realise that you had 18 years of observational market research, I didn’t write it down on a spreadsheet, I didn’t have any information written down in any way whatsoever but I had 18 years of observing people and seeing first-hand the challenges that they were coming across.  If somebody was coming at it from an academic point of view say and somebody said, “right we’ve got a project for you go and find out about whatever” they would then have to try and put 18 years of research into, I don’t know 3 interviews or whatever they might do, 100 interviews or even 1000 interviews they’re not going to get 18 years of observational research and as you say there, analytically I was putting all of that into my brain and going that could be better, I wonder if, what if I was able to do that, because that would address this.  Initially it was, that’s a problem, that’s a problem, that’s a problem and I think the big problem we have right now in social media and indeed in society in general is that we’re all brilliant at pointing out problems but perhaps not excellent at finding solutions to those problems.

 

Perito: (10.40) Alongside the extra cost thing one of my major pet peeves is clearer pavements, the way people park on pavements obstruct it with rubbish and just generally growing bushes out as obstructions and barriers of pavements. With your Mobility Instructor work you must have come across this on almost every street. It engenders a sense of injustice in me so that must have been relatively difficult, and do you think we’ll ever achieve that even with all the clearer pavement schemes that we’ve got going on?

 

GN:  It’s a really a great point and I would follow along behind somebody and the obvious one was an overhanging branch which is very much the mistake or problem or fault of the owner of the garden where the tree is overhanging onto the road, and yes there is very much a person who is responsible for that and they are to blame but then I would look at other things in our environment and I would potentially get angry but then I took it to the next step I went why are they doing that? If we can understand why somebody does something, we can actually look at how we can help them not do that thing.  So why do people put sandwich boards out on the street?  Well they put sandwich boards out so that people know that they have a shop right there.  What is it that means that people are walking by without thinking there’s a shop there?  Well it’s because their window display is maybe not capturing people’s imagination, there’s not something there about it that makes people look at it.  So you look at that and you go right, what if they had an amazing window display would they even need a sandwich board?  Now we’re thinking those buggers they’ve got sandwich boards out but actually what I’ve done there is I’ve said why is the sandwich board there? If we transpose that into absolutely everything we come across we can find out that by solving the problem of the person whose actually put the problem in front of us we can have a society that doesn’t just fix/find where the problems are but actually comes together in the solution and that is a massive part of what I’ve done with my company, is understanding every single person’s problem and then making sure my solution directly addresses the problem that they have as well and that means that, and it’s like, I can even, we can through this a win, win, win, win, win, win situation and I number those for very good reason we’ve got an example we’ll be talking about where every single one of those 6 individuals wins.

 

Perito: (13.13) So it sounds like your thought process is based on the Five Whys used within the Lean Six Sigma system. It’s quite an interesting thing it’s the idea of you constantly ask why, it’s based around the example of the Washington Monument and the long and the short of it is that you start off with the Washington Monument it was getting damaged and the reason is it’s been getting damaged by cleaning chemicals and then the guy whose been sent in the mid 90’s to do the investigation starts trailing it back and he goes back past the birds, cos there’s lots of birds around and the birds dropping excrement on the Washington Monument and then he goes through to why are the birds there?, spiders, lots of spiders, so the spiders, and then he goes well why are the spiders there? and it turns out the reason the spiders there because there’s lots of insects there and they’re eating the insects.  Once he asks that final why he thinks well okay so actually why are the insects there? and then he suddenly realises the reason is because at dusk and dawn they have a lighting system which attracts the insects to the lighting which is then causing the ramifications of everything else.

 

GN:  (14.19 ) Yeah

 

Perito: So it’s a very good way of looking at it and structure your business around there makes good sense.

 

GN: Yeah I thought you were going to say the cleaning detergent attracted insects which would have.

 

Perito: Well it may well do by now I’m sure it’s probably come full circle again.

 

GN: (laughter) Yeah a really great example and I’m not the best reader in the entire world but we just go through generations of people rediscovering stuff and we have to constantly rediscover stuff because we can’t, we’re useless at taking, if we always took into consideration something that had happened before us and read books and did all those things, my word we’d be seriously in trouble for evolving as little as we have since the dawn of time because we just haven’t taken a lot, I mean wars, does it make much sense, not really.

 

Perito: (15.11) No, it certainly does not no.  But what does make sense is you setting up a company.  Why did you choose Neatebox as the name and what does the company name mean to you?

 

GN: (laughter) So Neatebox itself. I was working Guide Dogs for the Blind in 2011 when I came up with, well 2009 I came up with the idea of the first invention that I actually, well it was more of wanting to solve a problem and I went well, it’s a pedestrian crossing system where the phone presses the button at the pedestrian crossing and I thought well I don’t really know anything about business, I had no understanding of business, I knew about dogs, everything about dogs but I knew nothing about business but I’d heard that Business Gateway which is the Scottish Enterprise up here in Scotland, Scottish Government funded support to be able to get supported from Business Gateway you needed to have a business, so somebody said well you’re going to have to incorporate a business just to be able to get some grant funding and I was putting all my own money into this in my own spare time and stuff like that and somebody said, “well look if you get grant funding from Business Gateway then potentially you could 40% or 30% of your money back” and I thought well okay I’ll incorporate a business and they said to me “well what’s the business going to be called?” and I went “well call it the Customer Service Platform Business” and then somebody said “well no that’s not really going to really work” and I went “well it’s a pedestrian crossing box, my name’s Gavin Neate, Neatebox done” it doesn’t mean too much to me and in fact early days said, “you can’t have your own name in the company, investors don’t like that for some reason” who knew but the name just kind of stuck so it was a working title to start with but now the company’s called Neatebox it’s the name of the products that really is the key here, Button is the name of the pedestrian crossing box.

 

Perito: (16.49) Well that leads us very nicely onto the next question. So you’ve got these two products, I am familiar with these to a degree now but I know a lot of people won’t be so maybe if you could take each in turn give us the overview of what they do in association with the comments you’ve made before but I’m particularly interested in going back over those creative drivers so we understand why the buttons come around there but what’s going on in your mind that’s saying these are the problems that I’m addressing and you’re asking these analytical questions, the five whys and challenging people.

 

GN:  So you’re walking along the street, your guide dog client is 15 foot ahead of you, they come to a kerb edge, they get to the kerb edge their dog sits, they reach out with their right hand to press the button at the pedestrian crossing and they can’t find it, in fact as they reach out they may hit a little old lady or gent or they may crack their wrist against the pole or a barrier or whatever, bit of fencing and you suddenly think well wait a second why is the pole so far away from where they are when they arrive at the kerb edge, why does it have to be on the far periphery of the crossing and you think to yourself well I kind of know why it has to be there because it can’t really be in the middle otherwise they’d walk into it.  So you think well if it is that far out would it not be better if they had a long stick to press the button with and then you think, well I’d say a long stick’s kind of stupid in that respect but you think well they’ve got a mobile phone which is in their pocket and that is totally accessible because we’ve already seen that and mentioned that, well why could the phone not press the button for them, well that would make perfect sense and then if the phone pressed the button for them could it increase the crossing time or could it turn on an audible system where the audible signal be turned off, an audible signal might get turned off after half past 10 at night because it’s in a built-up area and a person at 2 o’clock doesn’t want to be woken up just because a drunk person presses a pedestrian crossing box, beep, beep, beep at 2 o’clock in the morning would be quite annoying so there you go following somebody’s whose having a problem you think to yourself, I wonder if, and before you know it you’re going right a bit of software, bit of hardware, software communicates with hardware, mobile phone communicates with crossing, problem solved.  Sadly what actually happens at that point is that’s the beginning of your problems because having a brilliant idea is only part of having the solution is selling the solution, having a company, talking to lawyers and business people and trying to get out there with something and when it comes to disruption, oh my god, it’s like no turkey votes for Christmas and the hotel industry did not vote to have Airbnb, the taxi industry did not vote to have Uber so when you are coming into something like a transport industry and you’re saying “guy’s what you’ve been up to now isn’t actually working, here’s a solution” they’re kind of like “well, yeah it’s we’ve got, we don’t, sorry what’s this you’re talking about, no you couldn’t possibly a phone pressing the button for you surely that’s going to be really dangerous “or even before they ask that question “yeah but how does a blind person use a phone?” so they don’t even know that this is possible let alone required.

 

Perito: (19.45) So how does the Welcome App fit into this and where did that come from in the deep recess of your training and analysis?

 

GN: So you walk into a shop with your client, your 10 foot to 15 foot behind, they go up to the customer service desk, the person behind customer service desk interacts with them and the level of service they get is based on so many factors, the training of the person behind the counter, the confidence of the person behind the counter, the understanding, the empathy, the physical positioning of the person behind the counter, the confidence of the person whose going into the shop and you see that and you think oh this is just, there’s inconsistency here, okay so we park that for a second now let’s go back to pedestrian crossing, I’m walking towards a pedestrian crossing and my phone has pressed the button and this was my thought process, my phone has pressed the button at the pedestrian crossing, oh wow if my phone could press the button at a pedestrian crossing well my phone could press the button a door and disability access doors are an absolute nightmare if you can’t find that button you’re supposed to press and if you’re in a wheelchair it’s really difficult to press that button, in fact it’s really difficult to press the button at the pedestrian crossing if you’re in a wheelchair, oh my god this is a pan-disability solution.

Right okay, if I’ve pressed the button at the door then the door knows I’ve arrived, if the door knows I’ve arrived the building knows I’ve arrived, if the building knows I’ve arrived the people inside the building could know I’ve arrived, if the people in the building know I’ve arrived I could actually train them before I walk through the door, purely that is the process my brain went through over a period of 6 months, it just went wait a second I could actually solve the other problem which is how do we deliver staff training to a level where the person in the shop knows whose is going to  come through the door and actually treats them in a way that is not just specific to their needs but also empathetic to their condition and disability and understanding of that but led by the disabled person, so empowering the disabled person to be the master of their own destiny rather than the one who is given or done stuff to and if we look at charity as an actual definition it’s the provision of service or financial support for those in need and the key word there is need, when we look at disabled people as being in need the balance of power is off kilter they are lesser because they need something, if you take away the need, if you have a ramp instead of stairs the wheelchair user can get in their not disabled by the building, if you have a low counter the wheelchair can actually have exactly the same experience as the persons whose standing at a taller counter, but that universal design has been sadly lacking and of course it’s sadly lacking, people didn’t allow for lifts in castles, when people designed buildings in the 1920s and 30s they didn’t design in the kind of accessibility that we have and of course we’ve got Listed building so we can’t just instantly change everything around but what we can do is we can change human interactions because you can have the most accessible building in the entire world and the least accessible person or you could have the lease accessible building in the entire world and a member of staff that understands your needs and that’s where we came up with Welcome, Welcome changes human interactions based on proximity and I’ll just mention very quickly we didn’t open the door with the button although we’re going to we actually just put in a beacon, an eye beacon which just triggered the phone to say I’ve arrived but then we put a geofence around the building so that when the person was 300m from the building they got a message in advance and the best way to describe that is in these old things where you would open up the door and it would ring a bell, in a hardware store, probably in a Two Ronnies’ sketch and the person in the back room would come through and say “hello sir how can I help you” whereas what we’ve done is added that bell 300m away from the building and put it so that you already know who I am and what more needs are before I walk through the door.

 

Perito: It’s like a physical manifestation of the social model of disability isn’t it, you’re effectively saying we could create a position where no one is disabled unless society thinks that’s the case and puts the barriers in place so you’re enabling that to actually happen so we can eliminate that disability, in short.

 

GN:  Yeah but so much more than that if we go back to that what I was talking about the win, win, win, win, win situation well Scope had a campaign a couple of years ago called “end the awkward” which was the recognition that between 18 and 35 year olds I think its 75% of them would rather not actually make a first approach to a disabled person because they felt awkward so in that moment they are disabled right at that moment they are disabled by their lack of confidence or lack of knowledge or lack of positivity in actually going to meet that disabled person, so if I can actually make them feel more comfortable so 5 minutes before I walk through the door or somebody walks through the door they go “right Gavin’s coming through the door, Gavin has a guide dog do not talk to the guide dog”, “Gavin’s coming through the door Gavin is blind make sure you introduce yourself to Gavin”, “Gavin is coming through the door, Gavin is blind make sure you offer your arm rather than taking Gavin’s arm” and if I do all of that the first time I might be quite nervous cos I’m in conscious incompetence or conscious competence at that point, I might be really nervous but the second and third time I am buzzing because I know what I did was right because I’m following the route that the person wanted me to follow and then the relationship we have is absolutely brilliant.  Now if we look at that that’s a win, win then we add the business, the business has more people coming through the door happier with the service and more loyal to that business, you then have other members of staff who see that interaction and they win because they can then take away that information yourself, you get the company winning, so my company wins because although we don’t, this is a software as a service model, we get to pay my staff and indeed my shareholders so we have a sustainable business model and society wins because that member of staff goes home that night and helps other people cross the road or collect their shopping or whatever it might be so society wins so we’ve got this win, win, win, win, win, win situation which oh my goodness me it’s like socialist capitalism where we’re changing society with something where everything is positive and nothing is negative.

 

Perito: (25.31) I was thinking after we first spoke about the Welcome App one of the things that stuck me straightaway was this idea of change management which I’m from a change management background and nudging is an approach that’s used, a constant suggestion and what I quite liked with the Welcome App in particular is the idea that even limited take up has a viral capability to spread this kind of nudging change management constantly within a fixed environment so my immediate thought then once I rolled on from that was in 10 years’ time if tools like yours and other people develop things that are similar maybe in different fields there is 100% possibly I feel to possibly eliminate inclusion, diversity and certainly accessibility as a field in itself because they will simply become no longer needed because the constant change management, the constant behavioural latitudinal change has happened do you agree with a that or do you think I’m being a bit optimistic?

 

GN: Well I think what you’re talking there is a human evolution beyond our current ability so a pair of people have a child, they want that child to learn French, they have to teach it French so you’re not just born knowing French because your parents want you to learn, they have to teach French it has to learn it, it might learn English purely from communicating with its parents but then they have to make an effort to learn that so the 19 year in old in their first job whose never come into contact with any kind of disability throughout their entire life needs to learn how to do stuff, but we’re in a situation now where that learning can be constant and should be constant, it’s not something that we just take for granted that because a company or a business or a customer service team did an input on Autism last year that every single member of their staff is already going to be trained up on Autism it’s a constant learning and training and that comes from an actual, an empathy for people and belief that other people’s you need to understand other people’s point of view in order to actually understand how you can help them or deliver service or how they can help you but it also has to come from an understanding that you need to put tools in place that make sure that that learning is possible, now I’ve mentioned it to people before right now we’re in a situation where if the seal on the washing goes you go on Amazon, you buy a new seal, the seal comes through, you go on You Tube, you watch a video on changing the seal, you change the seal, for £27.00 you’ve fixed your washing machine.  Whereas in the past what we did was we phoned up a plumber, the plumber came round, tutted a few times, looked at your seal, went “yep your seal’s gone”, ordered a seal, 3 weeks later came back again charging you more for coming out again then fixed it, had a cup of tea, you took the afternoon work and you ended up having spent £150.00 on your new seal.  If we go back to the former well because of the information, because of the ability to have information in the moment we need it is now so possible we no longer need to call out that plumber, it also means that that plumber can specialise in things that are much more complex that other people can’t learn and that’s really important, that’s really important stuff.

 

Perito: (28.30) Lovely thanks Gavin that’s great. Tell us about what you’re up to at the moment? How has Coronavirus impacted on your current work because at the beginning of the conversation you mentioned you were quite busy?

 

GN: Yeah we are crazy busy right now. I’m fairly certain that some of the visionaries on your Podcast will be going “oh wait a second that could be used for this and this and this and this, so we have, I’ll go slowly and those who haven’t got it will definitely get it. We’ve got a button press at a pedestrian crossing and indeed a button press at a door where as you approach a door, the door opens without you needing to actually touch the door, that one’s fairly obvious.  You can walk through a disability access door as an able person using a Smartphone that just opens the door for you or indeed I say Smartphone it could be a wearable like a watch or something like that and the door just opens because it recognises you walk through the door.  We’ve also got a system whereby which a customer service team in let’s say a supermarket or a hospital will know whose just about to arrive and what their needs are and may have even been able to ask them questions before they arrived so with a hospital I’m turning up to the hospital because I feel I might have Covid-19 and I’m say I’m going using the Welcome App and in the Welcome App I’m asked questions, are you, has this happened, has this happened, has this happened?, do you have these symptoms? and I go “yes, yes, yes” and they say right “okay brilliant please come to this entrance, or please go to that entrance or please do this or please do that” or indeed if you’re going to a supermarket and you are living with a mental health challenge or your visually impaired or your somebody who is using a walking stick or a walking frame and you need a seat and you’re having to queue outside for 25 minutes well how about knowing that person’s needs before they turn up so that you can identify them, not necessarily to get them to the front of the queue but definitely to actually have empathy for the fact that while they’re in the queue they might be suffering so that they when get to the front of the queue if they then have a bit of a breakdown you’re not then going straight back with what the heck are you doing and it being some kind of fight, and that must be so difficult because the person whose managing that queue at a supermarket right now is somebody who probably hasn’t been trained highly in customer service, it might be but there’s a very good chance they haven’t they’re just managing the queue so Welcome is a customer service system which helps people when they go to hospitals well in fact it’s installed with Edinburgh Airport, Royal Bank of Scotland and Scottish Parliament and House of Frazer and Doubletree Hilton and Deloitte and Diageo and hopefully more and more Councils across the country so that’s already installed and was being used before Covid-19 but now it can be used to directly help and support customer service teams and people who are going to supermarkets to buy food and also hopefully in the future medical centres when they open up again and somebody needs to go how brilliant to triage somebody before they actually get to the door.

 

Perito: (31.17)  Where is, and I think we’ve kind of touched on this, you can see the message about visionaries and looking ahead but I’m interested to see where you think Neatebox and what it could look like in maybe the next 5-10 years, where are we headed?

 

GN: Where does Neatebox go, I’ve always been, I’ve got this vision of fixing problems every day you get closer to the day rather than that vision but if I look ahead 10 years and I think to myself where’s Neatebox, if you take Neatebox out of that picture and you think where is the kind of technology that you are delivering with Neatebox and just bear in mind that nobody’s ever done this stuff before, this is new stuff so we could quite easily be that company but where will this technology be, quite obviously we’re going to be able to deliver something in the future that is based on proximity, we’re already doing it, when you order a taxi and the taxi’s five minutes from the house, you’ll get a message saying your taxi’s 5 minutes away, so the future for Neatebox is absolutely massive however there is so much to that you need to scale, you need to get investment, you need to get interest, you need to build and just because you’ve got a great idea doesn’t mean that you’re gonna be the person that delivers that, I want to make sure that I am because my integrity and my heart tell me that I’m in it for the right reasons so that when this company is successful in the future and I’m involved with it and hopefully my legacy will be giving it to other people who have integrity as well then they are going to deliver a service that is based on quality of the service not on the amount of money that you get in, we can make money out of this and that’s obviously the intention in fact we’re hopefully going to be doing a crowd fund in the future and anybody listening to this, hopefully, hopefully if we manage to do that then everybody that’s out there and that wants to be involved, can be involved and I would just say watch press for details, follow me gavin@neatebox.com or, well that’s my email address but follow me on Twitter @Neatebox or @GavinNeate and yeah keep in touch because who knows we can make a big community.

 

Perito: (33.10) Well you give me all those details that you want added on I’ll put it onto the transcript that people can access as well as the introductory information that will go onto Spotify or Podcast and all the other sort of sites so that will be available for people to track down.

 

GN: Cool I’m use to trying to squeezing things in so you can put them in when you can.  So one of the big things for me, I mentioned social capitalism before but was the empowerment of the disabled person and the redressing of the balance or at least balancing it, getting equilibrium within that balance and within all of our systems their all free, we haven’t talked about cost and business models but the business with Welcome pays a monthly subscription and the disabled person gets the App for free, they just download it for free.  The pedestrian crossing, the pedestrian gets the App for free, the Council pay for it to go inside the pedestrian crossing box but within the Apps the disabled person can ask where they want it next, so they can request where they want the Welcome venue and we’ve got an entire country and increasingly a world where people or saying to us, I just had somebody this morning, “when’s it coming to Texas” somebody was saying to me this morning, somebody else last week “when’s it coming to Seattle”, “when’s it coming to Canada” “when’s it coming” and somebody would say to us “when’s it coming to Bristol” and I say “you tell me, got to the App and request it and we’ll come to Bristol”.  Don’t sit there waiting for things to happen to you be the master of your own destiny, if you’ve got skills, if you’ve got an idea go out there and actually make it happen, it’s tough don’t get me wrong this is not an easy choice but you have to ask yourself are you going to look back one day and say “should I have done that” or heaven forbid somebody does it and you go “I had that idea why didn’t I do it”.  I’m a practitioner at heart, I’m a Guide Dog Mobility Instructor who wanted to change something but couldn’t sit down and let it just not be changed, I had to get involved and I had no business acumen, I had very few qualifications when I left school, it is so important for us as practitioners and experts to go “I can do something about this” and not just leave it to academics or to the person whose got cojones that goes “I’m going to be a businessman, I don’t care what I do, I just want to make money” so be the person you want to be.

 

Perito: (35.14) What advice have you got on what can be done by designers to overcome the biggest problems you have seen caused by disabilities in society?  Now I understand we’ve covered a load of those so maybe just kind of the first things that crop up or the ones that really bug you the most or the observations that you’ve made and you’ve seen repeatedly that people who listen to the Podcast who will then take away so I’m thinking people who will listen might be designing houses, might be designing new keyboards, might be designing new aircraft and they will be looking to have their kind of through processes plugged into and kind of help to change?

 

GN:  So let’s imagine NASA in the 1950’s. Let’s look around that room in their control centre and let’s see who’s sitting around in that control centre and I’m guessing if you’re like me you’re looking around a room at 30/40/50 something white guys and yes, they didn’t a brilliant job but that’s not the modern world we live in and if we were asking ourselves if we wanted to make a modern solution would that be enough, and no it wouldn’t because we’d be wanting to be more diverse.  Now you can go out there and you can go and ask people but I would say, and I kind I wholeheartedly follow Caroline Casey’s example here which is you make sure that when you look around you at the company that you are in you feel that you don’t necessarily have to go elsewhere to ask people what their opinion is because your opinions are within your company so there’s diversity of thought within the make-up of your company, so make sure that when you’re designing something for somebody that’s disabled you look around yourself and go do you know what we’ve got a job coming up why haven’t we ever actually gone out there and tried to find people who were disabled to actually work in that role because their going give us so much more than just the ability to be a designer or developer or whatever, their actually going to say, “yeah I know how did you get here this morning?”  “Well I took the wheelchair obviously and I had to use a taxi and it was difficult because I had this and that” and you “wow you bring an entirely new perspective to our company, your diversity of thought which is the most important thing here, diversity of thought is what actually builds our company” and I say diversity of thought because if you look back at the NASA guys they were made up of lots of different people with different experiences and that’s why they were successful.  It’s not just about yeah we’ve got 50% black guys and 50% black women now or whatever it might be therefore we’ve just all the boxes, no it has to be diversity of thought and that’s the next level, yes tick your boxes to say that you actually made sure that you’re an equal opportunities employer and a diversity employer but make sure when you employ those people that the diversity of thought also has a chance to shine through.

 

Perito: (37.46) Thinking from a less designer, more from an everybody point of view. What can anyone, no matter how they are, do to help others in their community and beyond?  My first thought is clearer pavements because I really hate the fact that they put stuff on pavements and above being 6’ 5” I constantly hit my heads on these little, the awnings that come out and there’s a lot of problems like that but what do you, even if they’re the tiniest things like that people can change, what would you say to everybody?

GN: So if you want to help society yes we can go and fix the things that we see are broken but my biggest bit of advice is when you meet somebody whose angry, rather than meeting them with anger take a step back for a minute and think “why are they angry? why have they taken that point of view?” and this goes across the whole of society because if you just take it for a moment, yes they might be wrong, yes they might be a complete idiot, however it might be because they have a whole host of different things that their dealing with or have dealt with or they’ve been angry about because somebody else has made them angry, so if you take that moment to just go “why” it might, might give you that opportunity to say “now I know what their problem is, now I can actually come up with a solution that’s going to diffuse their anger and their actually going to see me as an actual champion for their cause as well as mine” and I think that’s just the greatest thing we can do especially in a world where when you go on social media it’s just anger, anger, anger, anger, look for the solutions, look for the people who are coming up with those solutions but also make sure that you do your best, not to join in with the vitriol of an anger protest but actually to try and find a reason why there is anger and then try and find a reason why in the future that anger cannot be as great as it was the first time.

 

Perito: (39.35)  Did you pick up on the anger in my voice when gave out that, was it that obvious?

 

GN:  I totally understand it, I live there my whole time, why the hell have they put that pedestrian crossing box there and then you go well they did it because if they did it there then a wheelchair user wouldn’t have been able to get by or it would have created an accident when a car came around the corner cos they would have lost sight of some of their vision of who was standing at the pole as it might have been a small child.  So you then start realising that the reason it’s been designed in a certain way might be a reason that you don’t understand at the time you get angry but yeah, no if you hit your head off things then I would get angry (laughter), get them to raise it, but understand why they put it that level because it was higher for whatever I don’t know, always think about the other persons point of view I think first before you make a rash decision and then just create anger.

 

Perito: (40.19) Yep and make that assumption as well isn’t it, that’s the other point you’re trying to make here too, don’t just assume that something’s the way it is because that’s it and that’s where the unconscious bias can come into which is interesting.  So any final things you’d like to add on literally any topic at all, bit of an opportunity to say what you think?

 

GN: (laughter) That’s a good one, yeah okay I’ve got one.

 

Perito: Go for it.

 

GN: I guess if I was going add anything onto this is that as much as I had the energy to get where I am now I couldn’t have done it without the most amazing people who either just dipped in and dipped out or have been there from the start who gave me support and belief and actually believed in what I was doing and supporting me financially or through Scottish Enterprise or whatever it might be, every single partner that’s every joined us, every single person who said “I’m not sure I understand exactly what Gavin’s saying but my god he’s really passionate and he has integrity around it, do you know what I’m going go with it, so I think every person like me needs to have other people and I think it was Steve Jobs, was it, yeah Steve Jobs had Mike Wozniak and I think this is the Simon Sinek book you need every why which is my sort of role, you need to have a how person and I’ve got that person and Alan Hutching whose my Operations Director he is a very much a Woody in our relationship, I’m very much a Buzz Lightyear type character but unless you have that other person who is able to compliment you and actually be better than you at so many other things then you don’t get anywhere, so don’t think you have to do it all yourself also when other people help you bear in mind they have helped you and thank them for it as well.

 

Perito: Nicely done. Thanks for joining us to today Gavin.

 

GN: Pleasure.

 

Perito: It’s been good to hear about your work with Neatebox and the progress you’ve made with the various products in such a short space of time as well. Something I can see that can make a positive impact and I’m pretty sure people will be sitting here listening and thinking the same. Now if listeners do want to find out more then I put on the details to Gavin’s website and contact details as well that Gavin provides and that’ll go on the transcript and the Podcast introduction information too so don’t worry if you miss anything.

You’ve been tuning into the Perito Podcast Our World without Boundaries thanks for listening everyone, everywhere.

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Live/Work – Is This The Future Of Our Inclusive And Adaptable Habitats?

Who would have thought that within the trendy badlands of Islington, Hoxton and Shoreditch, the realm of the never ridden Triumph motorcycle, push bikes with no brakes, hopped ales and bespoke fashion lies a solution to the biggest question of 2020 – how to work and survive in the modern office environment post Covid-19.

The modern skyscrapers just down the road in Canary Wharf are being forced to change. The HSBCs and (their little neighbours) Barclays of this world are now waking up to find that their strategy of large office buildings, gaudy corporate foyers and empty business continuity offices dotted around the country could now be nothing more than a Victorian folly – something evocative of a past age but never designed to be able to serve its purpose in the current one.

Yet even as far back as the late nineties the more forward thinking amongst us were placing their trust in a type building which was able to serve dual purposes, true mixed use. Much like the butcher or shop owner who used to live above their high street business or the farmer or stable hands, in the Middle Ages who would live in the rafters of their barns with their animals safely stowed beneath them.

But where this style of domestic life might once have been seen as old fashioned, even as long ago as early January 2020, needs must and it should be embraced once again because the density of population coupled with the  urgent need to veer away from vast shared office floors and the daily morning elevator overcrowding (and its accompanying combative culture) which force right thinking individuals to the stair wells.

Welcome to the world of Live/Work. A choice embraced by small numbers of people across the globe. But is it truly a solution?

 

Unconscious Bias

I am writing this article from a bedroom built into the loft space of my house. I’ve been working from within its plasterboard walls for some time now and the space has everything I need and a ton of fun things I don’t need like my classroom sized whiteboard. It is easy to start thinking, with unconscious biases fully intact, that everyone is in the same boat…or rather room… well maybe some people are in boats but a lot aren’t.

The ability bias kicks in and means it is too easy to forget the thousands of workers, younger and older, still crammed around a dining table or self-isolating in tiny studio flats with a fold down bed acting sofa, table and workspace. It could be that some of these people love being at home despite its restrictions – but that takes a certain type of person.

Whereas the majority are desperate to get back to the office. They may have shaped their lives around never being at home or perhaps like Janan Ganesh, columnist of the FT, pride themselves on their ability to never own cutlery, so easy was it to access restaurants and food 24/7.

 

Add to the recipe a spoonful of the people struggling to maintain the balance between childcare and work it’s clear there are definitely people out there who would want, or are forced by their circumstances, to work away from home and these workers have to work somewhere. The lesson here is not to presume that everyone is cosied up in their lovely thatched cottage in the Cotswolds. We are all unique and therefore have unique circumstances. Designers and decision makers need to consider everyone in their plans.

 

Live, Work, Repeat…

So, the vision of staying at home doesn’t fit everyone’s idea of paradise but the urgent need to reduce the number of people heading to the office is critical and will remain for a long time.

After all, if one of us, any where in the world, has Covid-19 then we all do – until we have a vaccine or until the next emerging zoonotic disease arrives and dwarfs Coronaviruses. Which ever comes first.

A lot of housing built today is of substandard quality and design. The argument that they comply to Building Regs is utter rubbish and cannot cut it in the modern world. Cost is still king when it comes to building decision making and thoughtful decision is costed out after planning stages or the by the client during design. Humans directly suffer from these decisions.

But it need not be like that.

Designers have a critical role to play in our life and we will have to work hard on getting design right, until good design simply becomes design. At the moment, design is bad design and good design is still a thing… As buildings are renovated and ‘new builds’ completed we need to reconsider how people use the building – to treat it more like a product and a service not just a number and a unit specification.

Let’s go back to Canary Wharf and the tall HSBC Headquarters building. Now imagine that most of HSBC staff are either redundant, working from home or on site somewhere else and this monolith is standing mostly empty. Its cramped floors and low ceilings remain a constant thorn in the side of the desk planners who need to decide how many people can work in the building – with some staff still rebelling against having to take their mountain of shoes stuffed under their desk home. Thereby losing the permanent desk arrangement in the process. Canary Wharf has lots of facilities, in fact people live in residential towers about as tall as the HSBC building across the canal in South Quay.

But they can only live there, and they have to cross the canals to get to work.

Now imagine that they can also work in their accommodation too, in a purpose built, well designed space with protection from the distractions of family life and as the business or work expands so can the space.

Now imagine a high street made up of terraces of Live/Work spaces. Soundproofed and well-designed but with the artisan or the brewer, the potter’s wheel, the furniture maker’s tools or the agile meeting room for the remote team all located on the ground level floor. Either open to the street, glazed off for light or perhaps closed off to the world. All done adaptably by the click of a button or the add-on bought at purchase.

Welcome to the ancient world of Live/Work.

 

 

 

Shell Suit

This isn’t going to work for everyone though. Even I can’t see myself moving back into a flat, surrounded by people but all within my own space. But it will suit lots of people and by making the spaces inclusive, accessible and easily adaptable we can make these empty voids roar with our industry and then close the door on it all at the end of the day.

Harking back again to the innovation around the Islington area, there is an interesting example situated in the Canal Building. Essential a big open space with lots of partitions which was originally designed to be flexible in its use of space. The building was designed to flex around the occupant.

Need a bigger workspace for your desk? Open it up a bit.

Have a kid? Make a bedroom larger.

Have twins? Cut out the squabbles with two tiny box rooms! Expandable on good behaviour and GCSE results… Ok a bit harsh but you get the picture. There are a lot of obvious pluses to having an adaptable space.

So, if we are looking to build from scratch then it makes sense for people to be able to adapt their spaces to suit their needs. This means that the concept of ‘shell and core’ should be explored a lot more than it is. Dwellings still need to have water and be habitable otherwise they won’t pass building regs no matter how hard developers try but once that is installed it creates the core and then putting the roof, walls and floors up produces the shell. In an instant we have created a flexible space for people to start getting creative with. Space to bring their unique living and working requirements into along with that box of random phone and computer cables you never throw away and the kitchen draw of random stuff that you might yet, just, maybe, possibly, need so never put out for recycling.

 

Inclusive & Adaptable

A positive result of the Covid-19 crisis is that it has rapidly proved that working remotely does actually work for a lot or roles. All the disabled workers who have been refused this over the years have had their point well and truly proven. Live/Workspaces can accelerate workplace equality by providing quality and efficient work spaces for everyone to design in the way they need. Low desk? Easy. Fully accessible toilet facilities? Done!

By changing the way we think about our work and housing requirements we can actually start to solve a huge amount of exclusion, access, usability and mobility issues for most of the population.

Perhaps we can practise on Live/Work spaces and then transfer the learning and evidence into homes across the world by providing the proof that making homes adaptable and fit for life is possible and cheap at the same time.

 

 

 

 

 

Brave New Office World

We can’t avoid the fact that we are living in a new world. Yes, this Covid thing did happen to us and the quicker we accept that the quicker we can make sustainable decisions we need to make.

One of those decisions should reflect that there are a lot of people who might be able to live and work in the same space but don’t have the capability and if we are to encourage flexible working within our inclusive environments, then building Live/Work spaces represents an amazing use of space and materials which could be the game changer we need to reduce the density of workers within our offices and thereby restrict transmission and save lives.

 

 

Takeaways:

  • Not every one is happy working from home. Try to design, plan and incorporate as many people as possible and manage your unconscious bias as well as possible.
  • Live/Work Spaces should be on the table for every new dwelling, refurb or refitting of commercial space into mixed use.
  • We need to make sustainable decisions now; we have the information to put a range of options on the table. Urgent situations are often used as a smokescreen for further inaction.
  • Live/Work spaces could be formed by selling new builds as ‘shell & core’ which means people can make them how they need them. No more poor design making all the decisions on how people live and work!
  • Inclusive and adaptable – live and work spaces need to be a fit for everyone. We can mitigate a vast amount of social exclusion with this concept.
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Read our latest article on Medium – all about how mobilisation of ‘Generation Pan’ helps build our post Covid-19 world

https://medium.com/@jamescwheeler/generation-pan-mobilising-multi-generations-to-create-a-multilateral-inclusive-world-fb0fb09ebb59

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Generation Pan – The Case For Putting Aside Multi-Generational labelling

Identity is important, after all we are all unique individuals and we can shape ourselves in many different ways over our lifetimes but amongst the many labels we can’t shed is the generation we are defined by simply because of the year of our birth.

 

You might be defined as belonging to:

  • The Lost Generation of 1890-1915
  • The Interbellum Generation of 1901-1913
  • The Greatest Generation of 1910 – 1924
  • The Silent Generation of 1925 – 1945
  • The Baby Boomer Generation of 1946 – 1964
  • Generation X of 1965 – 1979
  • Xennials for those that cross between 1975 & 1985
  • Millennials or Gen Y of 1980 – 1994
  • Gen Z of 1995 – 2012
  • And finally Gen Alpha of 2013-2025

 

That’s a lot of generations and an awful lot of negative stereotyping.  Perito argues that it’s time to consign these date/event defined categories to the historians and social sciences academics. Its time to bring us all together in the adoption of an all-encompassing term that makes sense in the new post-Covid 19 era.

That definition?

How does ‘Generation Pan’ sound to you?

 

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The Case For Globally Networked Inclusive Environments

Kevin Burger’s interesting article for Nautilus by (found here) features a review of the work of a scientist called Dennis Carroll. Carroll has been operating at the forefront of the defence against the dark arts of zoonotic disease for most of his career and his scariest observation is that zoonotic diseases, or viruses like Coronavirus which came from bats is just a small part of the threat posed by viruses already prevalent in the animal kingdom. As humans push against the boundaries of the natural environment, we only increase the risk of new threats emerging. In short, Covid-19 is just one of many viruses which will challenge us on an increasingly regular basis.

The way we live our lives and the way we work have now irrevocably changed.

Two new features of this new, after Covid-19, world are socially distancing and self-isolation. Both extensions of social exclusion and which, based on Dennis Carroll’s work, are highly probable to be the new normal. Even when we have succeeded with destroying or disrupting COVID-19 and the virus itself, the problem of emerging threats which will force our communities back into the socially excluding activities is very real. Imagine for a moment a world where every two to three years we are all forced to ‘hibernate’ in order to stay alive and prevent the spread of disease. Some might suggest that this has been done for centuries, what’s the big deal? Well, big is the right word because the population has boomed, urban environments will accommodate 90% of the population within the next 5 years and things are not being designed properly already let alone for people who are going to be forced to stay inside.

Accessibility, visitability, usability and inclusive design are all core concepts that Perito work with every day in everything it does as a company. Creating inclusive environments is something that is very important, even if people don’t necessarily have it that high on the priority list. However, change is something people choose to do or are forced to do. Covid-19 has made the decision for us and what is needed is an expanded definition of what an inclusive environment can do to help answer one important question: –

‘How do we all successfully engage, participate and contribute even though we live in a dense, complex, often poorly designed world that no longer places the human being at the centre of everything it does but now expects us to safely and comfortably live, work and play six feet apart when we are well but isolate effectively when we are not?’

Perito feels that inclusive environments are the answer.

Inclusive Environments are places in which all, unique and diverse, humankind can access participate and contribute equally because they put the human being back at the centre of everything they do. We might traditionally see our environments across the following categories:

– The Geographic Environment

– The Man-Made Environment (Inner & Outer Environments)

There are lots of academic interpretations, but here are more explicit examples that suit the purposes of inclusive environments than those high-level categories:

– The Built Environment: our towns, cities and industry.

– The Natural Environment: Our countryside, marine and recreational spaces.

– The Social-Cultural Environment: The environments in which we live and work.

– The Space Environment: The human environment in space i.e. spacecraft and planetary exploration.

Whilst social-distancing is now a feature concept of all those environments there is a new addition to the list and that is ‘Isolation Environments’.

These are specific inclusive environments which have been designed to support human beings undergoing periods of isolation. They make provision for core needs like water, food and care, communication and commercial activity. They innovate and design for all requires via universal and inclusive design, but they are fundamentally about equality. A core concept of an inclusive environment is to create an environment where anyone can participate on equal terms — social isolation cannot achieve that and thus the individual, community or country will suffer as a direct result. If we are going to be isolated for much of our lives then we need to consider permanent environments, inclusive environments, which are designed to support this new way of live.

What has been demonstrated by the 2020 Covid-19 pandemic is that the world and its leadership were not prepared. Worst of all it has opened clear gaps in both the European Union and the United States. Whilst the liberal democracy has been proven now to be more robust than previously thought it is not through our government’s clairvoyance, openness and deft international relations.

A spirit of global cooperation and solidarity is now more important than ever. Just as the alien invasion in 1995’s Independence Day brought the world together, this virus and other emerging threats can do the same now. The paradigm shift has happened, and the virus makes clear that no person or community is safe and that there is nowhere to hide. If you are lucky enough to own a Scottish Highlands plot with a natural spring that is all well and good but the chances are high that one morning you’ll wake up, open your log cabin door to be faced with a hoard of wealthy pensioners in luxury motorhomes parked on your veg patch.

We can’t hide and don’t let anyone tell you we can. It’s not possible anymore. That’s why the best option is to plug ourselves directly into this global solidarity and make that contribution. This doesn’t have to be about technology or the internet it can take many forms, but it has to be global and about being openness, sharing information and exposing our culture and community to the rest of the world. To achieve this, we simply need to ensure that our new inclusive environments are designed with this goal in mind. We need to ensure that when our new Isolation Environments protect us and our community but also allow us to project ourselves new and open-source ways, so that we can have inbuilt capabilities to share our experiences and allow others to learn just as we learn from the rest of the world. Covid-19 has shown that sharing our experiences will save lives, places our heads in the sand won’t do much but offer a small delay.

In addition, we must always be quick to adapt. The concept at play here is Adaptive Inclusivity which operates much like a business might. It keeps us learning and it accepts that we don’t know everything so we must remain agile enough to respond to changing situations. By making sure inclusive environments are linked by global solidarity and global cooperation we can ensure that our environments, Isolation or otherwise, stay in the best shape to meet the user and the community’s need.

The task is simple then. As we construct, design and innovate our agile inclusive built, natural, social and space environments we need to ensure that they maintain a sustainable link to the rest of our World. Whether that is shared learning, mechanisms for communication, twinning organisations for inclusive environments across the globe or even a simple webpage or Instagram demonstrating the humans and the community that access, participate and contribute.

Equally.

Takeaways:

– The way we view inclusive environments must change. They are not local or regional monoliths. They play one part in a global nexus of inclusive environments which are part of a single global entity.

– Inclusive Environments must find ways to connect to the rest of the world are a new core aim.

– Social distancing and self-isolation are forms of social exclusion.

– Isolation Environments are now a new normal. Innovation, design, architecture and social and cultural activity should make the change to as early as possible.

– Agility through the concept of Adaptive Inclusion is critical. Global Cooperation can ensure that our inclusive environments remain fit for purpose.

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A Definition of Inclusive Environments

An Inclusive Environment is an environment in which all, unique and diverse, humankind can access, participate and contribute equally by placing the unified and holistic human being at the centre of everything it does. Inclusive Environments should always involve the creation and sustainability of wellbeing as the primary ultimate aim.

They are environments which not only support and directly contribute to both local and national communities but also openly, demonstrably and sustainably support global solidarity and global co-operation.