Ashlay talks co-design and the importance of ensuring that products are designed in a coproduce way, the difference coproduction makes to people with neuro divergent challenges. 

 

Would you like to introduce yourself? Yeah. My name is Ashley. Um, I was the founder of a company called Paseo, which specialised in coal production of software for predominantly people with disabilities. Um, we run that company for about 35 years. Um, and now where It's kind of being restructured, um, and I'm moving on to probably different role and a different company, but also working with disabled people. And I have got a d h d dyslexia and complex PTSD Um, most of my family are neurodivergent. My mom has nine siblings, and they are all neurodivergent. And there's lots of experience of navigating a world that was not designed, uh, for us, and and, yeah, I think I've got a degree in informatics And the first co produced tool I've made was a three d autism simulation video game to educate people on what it might be like to be autistic, but really just encourage people to ask questions to understand what they don't know. Thank you for institution itself. So it's like you have been involved in a lot of interesting and important work So I was wondering if you'd be happy to share with me An experience of coproduction you've had. Mm. Um, so I can start actually with the autism simulation tool, because I think that's where the philosophy, at least for me really started And so a vote at the age of 20. Um, and I mean, the experience of navigating services often was professional here, and you were here and being dictated to, um And so when I decided to build this, uh, assimilation, too, I thought, um, there's an article written on this as well, which I'm happy to link you to. But I thought, uh oh, Well, I had five different projects Ideas got the community to vote on which one they thought was the most important. And I came up with the idea because they thought, If I'm struggling to know what tech to build to meet autistic people's needs, then how can a social worker or a teacher with the one day training be able to understand autism? So me at the time thought I knew everything that was. And then I did a whole bunch of literature stuff and, uh, started building it and then started interviewing people, and I actually started to learn how little I really knew of their experience And then when we had the actual game itself, giving it to autistic people and they would say, You need to make this worse, you need to change this and eventually coming out with something that I could not have imagined, uh was a part of the sensory experience. And so that taught me It doesn't matter how much you learn or you think you know from books and research and experience unless you are the person who was literally experiencing it. Um, you just don't know And so if you want to get products and services built to really meet people's needs, you have to produce them. I'm and I spent a lot of time making sure that it wasn't just me going and getting feedback and then interpretation it because it's through my lens, Um, so to make adaptions to the tool so that it was ultimately they're conveying with that through the second thing that kind of came from that was I was working with young people with additional support needs on the transition through school and standard emoji. I wanted to get like, an understanding of their emotions in a school environment And often, you know, you have, like, smiley faces for happy and something for sad. And I knew that autistic people experience these emotions differently. And so what I did was created an exercise which I asked them to draw three and the images of their experience of school And instead of getting like happy Sad, we got someone created an emoji of Shrek. And they said that in school I felt like I was this big, scary ogre. But actually, I was just really soft person inside and people never knew that And so we're working and building those relationships. He started to get much more colourful insight and information That wasn't just our interpretation. Um, so there's a two, uh, just two examples of, um, using coal production activities Uh, a couple loads. They sound like really exciting, interesting and valuable pieces of work. So when you were talking, I was wondering about sort of, um, the impact and value of co production So I think you'd like to talk about this. And what value and impact do you think co production has on, um individuals, society and organisations and the piece of work that you might be co producing them. Um, second individuals organisation I think you mentioned one other into society, like I always think about, like, how does it go beyond so if individuals, I think there's two things one is you are. I hate to see the world giving them a voice, but it is giving them a voice in the process of what is being built for them in helping them get control over that one. Often people are shunned because they don't have the qualifications And so I think it's a good opportunity for building relationships with a community of people and often if you and then in terms of the value for an organisation. If you've got good relationships like that, you get honest feedback and input, and in terms of the value to an organisation, you're much more likely to get a product. That or a service that meets the needs of people far quicker Then if you go through a standard design process or a test in line where you sit behind your desk and build something and then release it and see what data you get, and it's much easier to see and understand Why, Um why something is or isn't working. And then in terms of society, I think you get I mean, I've seen so many examples. What? Uh, people have done consultations, for example, disabled people before they've And we designed a town square, um, to meet the needs. But that consultation hasn't actually been properly used. And it's not co production It's just asking some people their opinions. And so they go away and they built it. And then someone says, Well, that's great What works really well for people, visual impairments. But I've got a wheelchair I can't use that you've put steps in and and so it means that in terms of the design of society, um, we are excluding people, but not consciously. You know, sometimes we need design stuff You have to occasionally make trade offs but consciously know that's the case. You just unconsciously excluding people. And then you find out something doesn't work And now you spent millions of pounds. Uh huh. Angering probably quite a lot of the community He, um uh, just very frustrated. Um, so, yeah, I think the there's an emotional impact in terms of society and people being able to access it. There's the government funds not being put in the right places or solving the right problems and organisations It means the impact is on the bottom line because you're building something more effectively sooner and you're getting those relationships and for an individual they actually get to be involved where so often there just ignored. So I think it has a real positive impact. In my opinion, we all live in this world and so we should all have a say in how it is built Um, I mean, even relationships are quote produced. I mean, you're an individual boundaries. Um, you co produced them Like in therapy, you will co produce the relationship. And if that is ignored in stifled, I think it can actually be traumatic. For a lot of people Just constantly taught, they're not valued. Thank you for showing. Those are really important points and intellect So I was wondering about your own kind of perception and behaviours. Have they changed as a result of co producing? Yeah, I think has humbled me. Um, because you learn to weigh up what you think you know, and to test the assumptions that actually you have, um, and especially when building stuff with a diverse range of people that might not just be didn't say what it could be Cultural differences. And you get humbled because your assumptions get broken and you also expand your perspective. You learn to see things from different lenses that you would have never, uh, seen before There was a logo we built for, um, something called autistic space kit. Uh, we all thought it looked good. And then we gave it to notice the parson, and he said, Why is the logo of bucket pouring into a ship? And it's because the there's perceptual differences that when you adjusted your eyes, you're like, Oh, I can totally see this now and we just haven't seen it from that view Um, so I think in terms of building an actual inclusive wild understanding, different views is important. And it humbled me and meant that I've been more comfortable asking people questions on their experiences and not just my own, um as like a white female, for example, um, and understanding that there isn't really a normal um, so I think it helps break down all sorts of social barriers. Thank you So I before I go on to ask you, like all of the positive stuff about co production, Are there any challenges with co producing? And what? What would those challenges be? Absolutely, um, so you can get the co production activities wrong. And it could be how you've you know, your rights. Like, um, one example I can think of her And it's OK to talk about this project because it was open, open, Working with Catalyst. We were trying to co produce with 10 young people with additional support. Needs to work out how to create a feedback door so they can give feedback to the college on a 10 week entrepreneur course Now, when we first did this, they were struggling to understand the abstract concept really of feedback, and and we weren't really getting the information, the colourful information that would have expected. And so what we did in the second round. You know, we were asking questions, and we've simplified all the language and we're getting responses, and but it's like they want in a state of creativity where they could give suggestions and ideas And to me, that meant there was a mismatch going on somewhere Because if you're truly corporate quote producing, the other people should be able to create ideas. Uh, with it. So what we did in the second round is we said to them, Okay, you've got a kick store and you are selling cakes and you want to get feedback on your cakes so that you can make more sales What kinds of questions would you ask people and automatically, they got it, and they were giving us lots of questions and different types of things that they would think of. And then we used that data to create the feedback to essentially because we were able to see what was actually important to them. So there's something called the double empathy problem, which is, um, described as an empathy gap where non autistic people can understand each other's experiences relatively well And autistic people actually can understand their own within their own groups very well. But the challenges when communicating between two different minds, um, so you really often need to find something concrete that both worlds can kind of get and then expand Um, from that And then I think the third thing is you need to have the good relationship, um, with them, so that if something isn't working, they can tell you and make suggestions. And there was 1/4 thing that that was just really important That just came to my mind, Um, even things. So what we started doing was co designing the core design process. So that way we couldn't even bias what we were trying to co design And it meant we could test it beforehand, because it's what I was hearing from groups was sometimes questions didn't quite make sense, and so they would just give an answer or they just say yes and no in research. But actually, I didn't really understand one way you can. You can describe that, and it's a very abstract example Um, let's say you ask someone, What's your favourite colour? I don't like the person might be like, I don't have a favourite colour, but only about 10 boxes here. So just take any of them. So you're getting incorrect data, and to them, it might be actually got a favourite past, like a favourite pattern And now you're losing all of that data again. Incorrect data. And so that could be one of the challenges as well Um, when you're seeking user input, um, which isn't obviously the highest level of co production, which is shared decision making. Um, but yeah, being able to share things in France with people, too. Check and fact check Um, that stuff makes sense is way around that. So I'm really interested in learning more about designing the code design. Sorry Can you remind me the phrase that you used and what does that feeling? What's that feel and look like What? What is it? So I would call it like meta co design. I guess it's co designing the core design process, and and so it can be something as simple as you're working with young people to work out what questions they should be asking other young people. So at one point, we did a national consultation and and worked with a group of young people and they came up with the, uh we were working with them to come up with the consultation process Um, that was going out, and it can be interesting because it can feel really uncertain. Like the questions and the phrasing of those questions didn't quite make sense to us, Um, and had all sorts of amazing ideas, like rocket ships going on in this thing to make it like intuitive. Um, And then we were helping with developing the graphics Um, but because the questions didn't quite make sense to us admit it. And lots of other people who were professionals, it became feeling very uncertain. But when the consultation was released and completed by, I think a few 100 people, all the data we got was really, really good So there's something there that the people you're co producing it with might need a better coaching. And what does it mean to producer process? Um, it can be as simple as before. You send up a questionnaire to get feedback, um, giving them for people to check or asking them more questions to ask There's a method called it Delph Delphi Research. But basically, you ask people to ask the questions that they would ask of a group. Um, and then it goes through a couple of rounds and gets re prioritise, and the group ultimately come up with, but, um, so there's Yeah, there's lots of different ways in which you can do that Do you have any top tips for co production or Yeah, yeah. Um, always involve people at the start of the process and involved people as early as possible and build relationships with them as well. Make sure you're keeping people updated Make sure people are being paid for their time. Um, so it's very equal. Um, be willing to coach on a little bit in terms of design process and also be humble and explain that, like, you're not the expert in this domain And this is why, you know, with maybe the expert in designing and we can help with that. But you guys are the experts in the actual them in and then getting feedback not necessarily on a product itself but the process. Because then you can create something that's more repeatable and anything else they think of, um, be prepared to feel uncomfortable, because what you think the solution is could be something that actually you don't understand, and it doesn't make much sense to you, but it makes sense The user group, um and so that's what matters. Um, so you have to really let go of how you think things should work because they're going to go in different directions and you have to really trust, uh, in the process. That sounds like a really important message So I was wondering about this. So you so I wonder about the experience or the so Like I've asked people about what? How do they How does the production want feel or what is the experience? Is it different from not go producing like So you think about your feelings and your experience of co production? Is it does it feel and is it very different from other pieces of what you do? Yeah, I'm just trying to now think of things that we haven't co produced in the difference in those. Um so yeah, the main project coming to mind that wasn't quite produced Um, because Paseo team members wanted to try a different approach. It was just it didn't it constantly felt, um, you know, you're just like, is this solving people's needs or problems? Um, and it's a bit more stressful in a lot of ways, because if your co produced and you kind of start to know at the start, if things are working rather than building and then trying to make fixes and rush around and work out if you've got a product market fit. So although it can make co production can make you feel a bit uncomfortable in terms of the direction that something goes There's also like a synchronicity with the product and the people that you're working with and the feeling of creating something genuinely valuable and life changing versus Maybe I just feel like making a cool thing. But is it actually going to have any impact on people's lives? And it also creates a feeling for me anyway, again in terms of the impact, like you're doing something genuine, not just trying to make money from something, Um, and it changes the mindset because if something works, then it will generate funds. And so the goal is to make something that works As a result, you should see a revenue as opposed to maybe a non quote produced way, because people might think that that's how you save money. Uh, the goal is really just to get revenue from something, and so it just doesn't for me feel, uh, it doesn't make me excited to wake up and to build something. Thanks Actually, that that just took me in a real big journey, like most people will say. Well, we don't co producing cost lots of money rather than actually by co producing your raise revenue. And you make things better Yeah, Yeah. And so this is often the the thing that you people come up against when they're trying to sell the value of co production or user research and what we're seeing in the market right now is the big explosion of user research new X researcher roles because if you do it properly, the earlier than you less mistakes that you have to correct at the end. Um, so you do save money in the long time? Um, exactly People think, oh, upfront costs, costs that goes onto the budget without explaining. Yeah, this is going to save you years potentially of extra work. Do it properly the first time A really important message. So I want you to ask you a final question about, uh, if you were in a lift and you had to share with someone in the value of co production or you had, like, just a really small at that time, what would you tell them? Oh, that's a really good question. And it would probably depend on the person, you know, because sometimes you have to look at what their goals are, and and so like if they're in sales, for example, and their, their bottom line is they need to get as much sales as possible I'd be saying to them, or have you actually watched the people you're selling to, to work out like what? You know, like, how would they want to put to be solved? And what are their pains? What are their games? And and if you do that, you'll get the right messaging the first time, and your sales will should hopefully change. Um, if I'm speaking to a designer, I'd be saying it will transform your perspective on design because you'll now be able to see things through many different lenses. And so, yeah, I think it would depend on the person that I was trying to have to convince I guess the value of co production. Um, but I mean, in general, if I'm looking at things, you know that it's a CEO and a high level person, it's your branding. It's the ability to say we're inclusive, and we are not token mystically, including people This has been involved and you get more people in the community being and feeling a part of the company. And that's what really happened with Pastor. We had, you know, disabled people championing us and shouting about us on Twitter It was free marketing. We didn't have to do anything, and they were just generally passionate. You wanted to help and and I would get sent gifts and cards and all sorts of things from, uh, people as well And so the connection with your customers, just that for me, actually, is probably it. It's your connection with your, uh, customers, user groups, Um, grows, Um, and you can't really put a price on on that? I think so. My final question, and I know I did I've added another question, but I just wanted to ask you what is the value of co production for you personally? I love understanding the minds of people who think definitely to me, and I feel like this is going to be hard to explain. Like we look at this pencil. My both see it as blue, someone with a different perception right here, you know that Read like, golden blue dress thing And so, by getting different perspectives, we actually get closer to everyone's kind of shed. Uh, truth, um, we gain more knowledge, we break our assumptions and yeah, for me, I get an opportunity to see into the world of people who are not like me. And I love hearing different people's stories and backgrounds Um, and then also, you just get ideas that will absolutely fascinate me. And it's like that light bulb moment in your life. I would have never seen it in that way I even thought of that idea. Just wouldn't have entered my consciousness. Um, yeah, There was one kid we worked within the I can't remember, like he just came up with saying I remember the context of it, but it was just like, Why do we get labelled? It was only 15, but he was like, Look, labels are for cans, not for people And I just thought such a great way of seeing, um sometimes the over labelling, uh, or attachment to the labels which people have. And so, yeah, it was just something that I passed him. We gave me a language that I thought was beautiful It's very long winded. Answer trailed off quite a bit there, so no problem at all. Um, so I wondered if you had any think you wanted to add about pay production? Yeah, Um, let me think It takes time and it takes practise, and you won't always get it right the first time. And it's not as easy as throwing people into a room and getting some input into something. And you want to aim for shad power ultimately But when you get it right, the feedback and comments that you get, at least from the work that we were doing were just pretty mind blowing, like tools were created for parents to support them, young people with additional needs. It was like you almost got people in tears because of, um, how happy they were that this product was existing. Um, and it didn't come from us, came from the group And there's a saying as well, which is those who are best able to describe the problem, the ones most able to solve it. And I think that's half true, because, I mean, if you took then a quote from Henry Ford, he says. You know, if I ask people what they wanted, they would have said a faster horse, not a car Um and so I think both all like Steve Jobs, who will say, Um, people don't know what they want. Maybe the solution within itself has to come with support from design teams and product developers. But it's the coming together of people who experienced these problems and the people who can solve them to work together Um, and it is working together. Like sometimes people. I feel like when I think about co production, it's not equal It's like you're just doing what they want, but it's not. You are literally finding ways to work together, um, and solve the problem. And sometimes you woke him up against people who might be sceptical because they've had so many bad experiences of being asked their opinions And then those aren't used or they get misquoted in reports. And they have mistrust in many things. Um, so spend time building those relationships and and the spiritual ego growth, I guess you get from the experience, um is you can't value You just can't value it. And yeah, there's no way to describe that personal development through coproduction. Basically, I think Is that done? Thank you I haven't got anything else I want to ask you. Have any think you wanted else that you wanted to add? And no, I think that's probably that's probably the main things. Um, obviously focused a lot here on disability just because that's where a lot of stuff came from But and yeah, I was just Yeah, I think there's nothing. Probably much more. Obviously, I could go on for days with different activities and different things that you found, but hopefully given me the main Thanks. Okay, I'm going to stop the recording. If you're happy, then let me just stop there.

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