Access Transcript


**VIV MULLAN 00:03**

When we think of what it takes to be a successful entrepreneur, we think of innovation, determination and ability to adapt to change, it should come at no surprise then that there has and continues to be a growing wealth of talent and disabled entrepreneurs. But how can we do better to harness this largely untapped talent pool? In this episode, we speak with advocate and founder Charlie Skinner, who’s on a mission to empower young adults who are chronically ill and disabled to design a radically inclusive world around us, Charlie shares her experience of acquiring a brain injury and how this expose the stark reality of inaccessible workplaces the hidden costs of disability, and also has taught her how we can do better to tap into the potential of disabled entrepreneurs.


Thank you so much for having me. I’m very excited to be here. Yeah, I’m Charlie, as people listening probably already know, I am a white woman with blonde hair. I’m sitting in my boat, actually, in London, you probably can’t even tell by the video, what it looks like. Because behind me is just a boring old white door with a couple of pictures hanging on the wall. That’s incredible.

**VIV MULLAN 01:07**

On a boat in London, you said, Yes, I’m coming to visit.


Yeah, it’s a very peaceful and relaxing spot to live, when things are working. When they’re not, it’s not that easy

**VIV MULLAN 01:19**

Now, I’d love to just sort of start off, if we could just jump into as little or as much as you’d like to share about your experience acquiring your disability sort of later in life, and how that sort of positioned you into this chapter of your life professionally. And personally.


Yeah, you’re right, I acquired my chronic illness, which is essentially a disabling set of chronic illnesses about just over four years ago. Now, actually. So it’s not even that long into my adult life. But definitely at a time when it was in my late 20s, I was in a kind of position in my career where, you know, thinking about what’s next. So, you know, pretty stable in my job and had built up a solid amount of skills and figured out, you know, a little bit of the groove of where I was at. And I actually sustained a head injury, which was the catalyst for a whole series of events over the last four to five years, which essentially have left me with long term health conditions that I will be I live with now and have to manage and I will be we’ll be living with for the rest of my life. So it’s, it’s been quite the process in the sense that it was, it was a really, really big shift in my life, that organisation that I have found in now, partly comes from me being that individual who was looking for all of this type of support and support in accessing things like work, accessing the outdoors, accessing, even just social environments, with my friends, accessing health care, all that kind of stuff that I basically spent, you know, years and still do spend years trying to navigate my way through and advocate my work my way through. And then the other side of it is the flip side of, you know, financial stability, which is a huge, huge challenge for people who are chronically ill and disabled. And yeah, the price tag, I think it was some statistics show that it’s something like on average, more than 500 pounds a month for a disabled person to live with the extra accommodations that they need.

**VIV MULLAN 03:17**

And as you navigated that journey of advocating for yourself, did your relationship with technology change, because you weren’t getting that support from the systems?


Tech is actually a really interesting one. Because it’s something that initially for me, as an individual, I found really inaccessible because of my brain issues. And because something that I relied on, like my phone, or my computer screen, became inaccessible to me because of visual sort of interference and noise interference. And those kinds of things that my brain just you know, was essentially got to a place of finding it really difficult to process those kinds of things. So initially, I struggled with that, because I didn’t know how to navigate tech in an accessible way. I only knew how to navigate tech in the way that I was used to, for example, you know, texting on WhatsApp, or FaceTime video call. So those kinds of things that I was really used to, I tried to continue to do and I tried to use tech to keep me connected because I was so isolated, but I wasn’t using it in a way that works for me, because I didn’t know what was available to me from a tech point of view, that would make my life a lot easier. So even now, even though now I can easily go on a FaceTime or video call. I mean, I’m on a video call right now. I now I always use dictation on my phone to write out like text messages and those kinds of things. It’s almost mind blowing to think that such a simple tool before I didn’t use or rely on, and how transformative that was, for me that small simple tool like that. And then of course, like as you go along, the more years you spend and the more tips you get from people about different sort of tech things that you can use to facilitate the way you access people on the other side of whatever that tech thing is was one huge thing around you know, not being socially isolated

**VIV MULLAN 04:59**

And before we dive into the world of Soda, I’m still learning about this concept of access intimacy. Could you explain that concept to people who don’t know what it is?


Access intimacy is a phrase that’s coined by me, I’m Angus, who is an absolutely brilliant disability activist, disability justice activist, she does a lot of work in this space of access centred work. So access intimacy is, for example, when you go to an employer, they’ve already done some, some research, and they’re coming to you with you know, we’ve thought we’ve tried to understand your condition, we’ve taken also what you have, you know, what you’ve put out there already, and what you told us already, and we have, like, proactively tried to address your access issues. It’s the same as you know, a friend, when they asked you to hang out in the evening, you know, can we check the venue is, okay, in terms of is there going to be loud live music, there was something that I would I would stop me from going into a venue, it wouldn’t be that I couldn’t, for example, access that table itself, because I could walk up to the table. But if I sat down at the table, and I couldn’t hear what my friend was saying, and that would make my brain, you know, go into a process of shutdown, then that’s not accessible for me, and the fact that a friend who, you know, had addressed my access needs, proactively is another example of how access intimacy is as a concept, and essentially recognises that there is a lot around us that allies can do to support our access needs. And that when they’re doing that, they’re recognising that that’s allowing us to be more of to live our lives more fully. And for us to be more of a full person without having to, I won’t go back to that sort of explaining yourself and advocating for yourself concept, which, which basically, it kind of recognises that everyone who is chronically ill, and disabled is very tired of having to do that for themselves. So when you’ve got allies around you supporting you with access intimacy, then that’s the dream

**VIV MULLAN 06:58**

Is this your solution to this? Have you created this brilliant organisation, as a way to, to solve this problem of constantly being told no, by people when it comes to accommodations and design? So two questions, is soda your solution? And what is soda?


Yeah, I would say soda is definitely our solution. But it’s born of a recognition that there is a whole group of people in our society who really want to reach their potential, who are innovative, who have got that hustle, and who want to make stuff happen, but aren’t being given the tools to do it. And we, I’ll describe what Soda is because that will help place it all. Soda is an organisation that is building a community of young people with chronic illness and disability. So one of those people would be someone like me, we’re working with 18 to 35 year olds recognising that there’s a there’s a little bit of a gap, particularly in healthcare, and also just a kind of societal, I think, assumption that when you’re have that sort of age, it’s your prime time and you know, you’re good to go, especially when it’s an invisible illness, because the classical sort of term of your, Oh, you’re too young to be Ill type of thing is a huge issue. So we recognise that there’s a group of people who are navigating these types of issues. And so we have this community of people that were brought together, the ambition is that they can firstly help support one another. And looking at the examples that I raised earlier around, you know, these types of communities don’t really exist apart from in particular disease groups, there are a lot of, you know, if you’ve got a particular condition, there are communities that are there for you. But there aren’t necessarily communities that are based around access and around access needs, which often tend to be universal, even if you have completely different conduct conditions. So one of the aims of soda is to build this community of support of other people, you know, other people like me, who I can identify with, who can help point me to resources, give me advice, those types of things, if I’m also a member of the community. And then the other kind of the really vital thing for us is we want to actually also make that change. We want organisations to be giving people access, and we want accommodations to be the bottom line. And we want everything to be above and beyond. And so we want to use our community expertise to go to organisations to work with them to make their services more accessible. So for example, when you’re talking about things like the healthcare system, employers who are going through processes of employment, or who are dealing with current employees who might be experiencing access or accommodation issues, public spaces, restaurants, you know, service type areas like that, and then there’s a whole other space around products and accessible product and that’s where, you know, tech also comes into the space I think of a service under product but there’s a there’s a lot going on these days around, making making sure tech is accessible and triple A and all those kinds of things. So, we also you know, I’m working in that in that type of space as well, getting our community to provide their expert insight on how, yeah, how products and services can be more accessible.

**VIV MULLAN 10:11**

With Soda do you have much of a relationship with the startup space? Are you working more with, with sort of bigger companies? Where do you want to make noise in both? I suppose I’m saying?


Yeah, interesting question. I mean, I think making noise everywhere is the goal. But I want to make noise everywhere. Yeah, literally everywhere. So massive organisations like we need to go in and change it all from the inside. But it’s interesting, you asked about the startup space, because the startup space is, as well as being a space of exciting new ideas, innovation, of course, highly, highly creative space, it’s also a space that is interested and wants to make social impact as well. And I think there’s a recognition that a startup organisation can because you can pivot and you can, you know, be agile and aligned to what your needs are, but also what’s going on around you much more easily than a big organisation can that has its all of its systems entrenched, there’s a lot of change that can be made, not only because startups are trying to do that already. But also because you can get in and you know, I’ve had some really interesting conversations with your colleagues at remarkable around, if you get in early enough to make that change, and get the voices heard at the beginning around how something can be designed in the startup world, then you are golden, because you’re already thinking ahead of the curve, your, your organisation may end up, you know, a billion dollar company. And it may end up being one of those massive ones with a huge system one day, but if you’ve integrated that process, from the start of listening to voices of the people who are going to be using your product or service, or whatever it is, then that’s a really valuable space for us to be working in. So we definitely have one client base, which is this public service space, which is a space, which is there’s always going to be work to be done there. It’s just a never ending space of work in, you know, the health care system and employment systems and social care systems. And we love working in that space. Because it’s, yeah, there’s just there’s a lot of traction as constantly more to be done. But we’re also Yeah, actually, one of our kind of next ambitions is to find an organisation that is already already bought onto the idea, especially of inclusion and diversity, that also also considers disability because one of the biggest issues of the kind of diversity and inclusion movement is that it often forgets, but there are other really important intersections like disabilities, and finding organisations that are to some extent already bought on but don’t know how to actually implement. And that’s where we want to get in and make that change. And once you’ve kind of proven yourself in that space, I think it’s a lot easier to then go into the big dogs.

**VIV MULLAN 12:53**

And I think there’s there’s also a conversation that needs to be had that when we talk about the startup space, there is this sort of hustle culture that’s encouraged. And historically, that hasn’t been a very balanced approach. And it’s been very much work at non stop, never stop thinking about it. And I refuse to encourage that, because I think especially in this space, we have to be mindful of the fact that if we’re not encouraging balance and health first, then we’re sort of backpedalling because mental health conditions, invisible disabilities, all of this chronic illnesses rely on this real and disabilities in general. But also just the human condition relies on prioritising your health and your happiness first and foremost. And I think that is sort of critical to the next wave of startups that I hope that we can start encouraging and how does that lend itself to your experience as you’ve navigated building soda?


Yeah, yeah, it’s, it’s, it’s absolutely central to it. And Alex, Ollie and I are constantly going through this process of iteration of ways of working because the company is not going to survive if the co founders aren’t looking after themselves. And particularly if we’re but we’re, you know, we’re building a business around one of us has chronic illness that is disabling it, you know, it sends me off into a crash every so often, and I have to stop working it. That’s literally just how it is. And it, you know, to some extent, will always be like that. Some stages of life, it’s going to be worse and other stages, it’s going to be more manageable. You know, Alex deals with neurodiversity as well. So there’s access issues around neurodiversity that are really important for us to implement in the way that we work on a daily basis. And you know, Olli has childcare responsibilities, like these are the types of things that are again, it’s an access issue. We’re not talking about chronic illness or disability, but we’re talking about access still and the types of things that benefit me as someone who’s chronically ill to make sure that my energy is saved like my working hours being quite flexible. You know, I work part time I don’t work full time and I won’t probably will never work full time again. That is partly because of my illness, but it’s also because actually I’ve made the proactive choice to live, you know, a more balanced life, knowing that my business is going to probably benefit from it. And it’s a really important thing around the ethos of the way we want to also grow. So a big principle of what we want to do when we grow is, is prioritise hiring disabled people recognising that disabled people are 15% of the population. And yeah, we, you know, we really want to have that at the centre of our ethos around how we work and how we hire people, it’s going to be centrally disabled people. I guess the last thing I want to say around this sort of area of access, particularly in the startup space and founding space, is that yeah, you’re right. It’s not a very accessible space. The Hustle culture comes with its fun, kind of like, Oh, I love the idea of being a hustler. But it also which we want to, you know, we want the good parts of being a hustler. But we don’t want the bad parts of being a hustler, because they Yeah, they don’t work for. And, you know, even just things like access to funding and the type of accelerator programmes that actually aren’t designed to have a curriculum or a support structure or mentor structure that is, is accessible, it might be full time, for example, like that is not going to be accessible for many disabled people, you know, funding opportunities might have specific deadlines that aren’t flexible, again, that might not be accessible to someone who may be dealing with an acute or chronic health issue at that moment. And building in mechanisms that allow people to navigate things like accelerator programmes, or funding programmes in the startup space, and also even just to get hired into a startup to see if they like the taste of the experience. And then maybe they want to launch off and do their own thing. Those kinds of mechanisms are vital for getting that you know, all of these amazing brains into fun and creative employment really.

**VIV MULLAN 16:46**

And we tend to finish these conversations with asking brilliant guests to share a remarkable insight. And that sort of stands for some sort of insight into your own experience that you would like to share or a piece of advice moving forward for people looking at doing co design working with people like soda. So I’ll pass the mic to you. For you to share whatever insight you feel.


I feel like there’s a kind of community insight and a personal insight, I think that my nugget of insight around my experience with this community is that the tiniest, tiniest thing around listening to someone can make the biggest difference to the way that individual feels acknowledged and recognised and empowered in a community. It is vital to the way that for example, our business is going to work because we want people who don’t get listened to to be listened to. And I know what it feels like to have even just one person in your you know, even one person in four years, who says I understand what you’re going through, and we’re going to do something about it. Hearing those words or something to that effect is enough to give someone the motivation to Yeah, want to be involved in a change process and provide that expert expert insight. And we really need to see people as experts and that’s my I think that’s my piece of insight when it comes to anything like CO design. So yeah, that’s my piece of insight.

**VIV MULLAN 18:20**

Thank you so much for joining me today. It’s been such a pleasure and honour to talk to


Thank you. Thank you so much for having me. I’ve loved it. I really enjoyed it.

**VIV MULLAN 18:31**

The full interview with our guests can be found in the link below where you press play on this podcast our show notes, make sure you subscribe or hit follow to not miss another remarkable insights episode.

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