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…
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.
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.