Shabira  Papain 

Can you hear me? I'm so nervous and then James dropped the F bomb twice, So I was like it’s gonna be ok. I'm gonna ask you please; my parents are watching they've never seen me talk and they're watching from Australia so they’re staying up. So, would you or can I do it like a little video? where you just all like wave and say hi there you go, that’s for mum and dad. There you go all right I promise I won't do any more, well I don't promise I might do.
So, some of you might have heard me speak before, I usually start with the story, James is set the stage really well because he's done a bit of my work for me, because it's gotten to a place where you're thinking about the people, cause it's all about the people. So, I start with a story, and at the beginning if your life OK like I thought we were here, I thought camp digital why she shared the story is stay with me, lean in, and it'll all become clear cause I'll come back to that story because there's two things I want to achieve today. I want to make sure that you take something away, every single one of you have something that you put in your pocket that informs your practise and the other is I want you to have the imagery so when things feel really far away and you're about to make the decision and you're working in your teams and you're designing a new pathway have an image in your head of why it's important to have design justice to use inclusive design and not let the excuses of why that's not possible get in the way. so, the two things and at the end of it you can tell me, no you miss this bit, or you missed that bit but that's what I'm aiming to do today. so we're going to start in 1989, I was 11 years old, that's the bit where you go no Sherly it was 1999 right so we can do that again so it was 1989 it was thank you for the compliment it was 1989 and so I was born in Lisbon the for it's another story why we had to go to Australia but we're in Australia I've been there for about four years and I spoke English, but we moved around a lot and I just thought I was like all the other restraining kids and we still get split into reading classes and it was at the beginning of the school year so we had been split before we got split and all my friends were in these other groups, and I was in a group with kids who just tried to straighten so they were just learning English and thinking I must be in the wrong reading group like I surely I am so I you know very confidently I decided to go to my classroom teacher and I stood at the door and Mr Simons was talking to Chelsea Angel, Chelsea Angel had the best hair, she best so first I was lost in her golden hair and I was like yeah and then he's like Shabira what could do for you but he had been speaking to Chelsea about an accelerated programme she was really clever as well as having us her accessories and she said so my mum wants me to do piac. piac is like an accelerated programme you could do and she's asking for extra work this year so I can go to piac he said Chelsea you don't need to do an extra work all anyone should be doing is reading OK and then he said Sheria you know what can I do for you and I said sir, I think I'm in the wrong reading group and he said no Shabira you're exactly in the group you are supposed to be and I even now going to tell you I get a bit of a wobble because I just had like how can I be in the right so I went back to the red group and I was really low and then later that evening I was like how come no one told me to read and what I realised is I couldn't meet I was 11 years old and I couldn't really read and write properly. so I knew the different words but when I read a story they were just individual words, and I said just individual words on a screen and they weren't coming together as a story so books in Australia quite expensive even now and we were really tight then but I begged my mum for a book, it was the babysitters club number 6 and she got this book and I started trying to teach myself to read and in Australia we've got a term it's an indigenous word called yakka, and it was hard yakka. I would sit there reading the same pages over again and they were just words until one day magically the words just came together on the page like this story, and I just didn't I fell into books. now why is that important that's important because I could be in the 27 today I'm gonna make a case to you I'm posing to you well actually I think I've posed this to you before so we're just gonna agree we're on the same page and that is if we are designing any kind of public service particularly tech, particularly digital whatever you want to call it if you're using public funds to design any service I say to you it is your moral imperative to ensure that you're designing for the people most at risk of exclusion because of the thing that you're designing, yeah at every time you're thinking of why think about that 11 year old shabira had been in Australia for years getting past from school to school to school and I couldn't read. and if I hadn't wanted by having stood up that day and decided to go and I hadn't overheard Mr Simons talking to Chelsea, he didn't give me that advice no one told me to go read no one told my parents looks Shabira is, you know Shabira it needs to be able to read. I was casually in getting passed through a system not designed for outliers like us yeah that's what you would need to remember because if I haven't in that moment in time which strangely enough is the power of what technology could do, cause it can catch you in that moment in time so you don't have post code lottery right so that moment you can optimise, if I hadn't heard that moment in time I would not be in front of you today yeah I wouldn't have the privileges that I have today if it wasn't for just catching in that moment I would have been passed and passed and passed Yep so that's what I want you to hold onto. So, I'm not going to go too much into people Street actually the slides I haven't done because I'm going to talk to them as such I've done them because lots of talks like this I get asked the same questions and people are usually furiously writing notes and instead of that can write notes if you need to I mean note taker but I rather you be present in the moment then you can have this so it's just so if you've got anything like as a reference it's going to be there but I'm talking today from the position of people Street I did want to set up people Street we had done the work in the middle of the pandemic at NHS X we stood up a team that supported inclusive design we were showing across the NHS and we didn't work just within an NHS X we did GDS work which run across to show that you can do it you can do it at scale you can't even do it in the middle of a bloody pandemic when you say you cannot reach people you can do it and then I was like yeah sugar is not made to work in the public sector are made to work with you but I don't have the patience by see something that needs to be done and there's a good way of doing it I just wanted to do it and I'm not good at going through all the processes that you are amazing at doing and I thank you for it so I had to get help and so I did and I was like OK what should I do now? and we just kept getting calls like to come please can you help us do this and please can you help us and so we were born out of your need and we will exist until you don't need this anymore so we don't hold onto our knowledge like it's ours forever we share and we share through things like this through workshops anyway how I wear here to make sure that you can do your work really well yeah. So, we spun out because of the need and after about a year we set up formally we were doing it as consultants at 1st and those are the three principles because these guys the underlying practise of design justice or what some of you might call inclusive design and so for us the self-determinism is like the fundamental step but not just with the community that you serve but for you as well making sure that you have agency because if you don't do that work in your organisations you cannot do it outside for the communities you serve and so James point about thinking about the organisations that you belong to is a fundamental point don't let it go any you do have the power and I think NASA is doing a talk later on culture you have the power you have the tools to be able to influence the culture in which you're working in, like the culture doesn't exist on its own an organisation is not a thing on its own the organisation is its people yeah so, self-determinism is really important because if you're doing that in your teams and any of you in here who managing teams in your leaders this is fundamental because you're able to do with your teams they're going to be able to do it for the communities they serve. I remember this is public funding, so I feel like we have an imperative to do this. social justice is at the heart of everything that I do when I was born I was born like prematurely because my mum was painting an anti-fascist mural on a government building in Lisbon and then she fell running away from the police, so I came into the world having to do this this is my best story it was pretty determined I have no choice thanks to my mum and then the next person next point is about cooperation us cooperating together you can't do it on your own, don't try to do it your own we can't do that this work on our own you know we're in a world together trying to leave the world a little bit better than we found it and said cooperation needs to be at the heart don't let your ego get in the way you know when you get asked like build me an app people want to build apps and they will this hubs in these portals and God knows what else and they don't want to do what speeds up focus they want to the name you know so this helps my careers next get out of your own way yeah and I can't take the bloody app with you right so we should be doing the things that we can take the energy the spirit in which we've come to this well tickle operation you know you find yourself getting a bit I pay attention to that and go OK what am I doing why my uncomfortable here and I'm trying to hold on to something tightly let it go yeah cooperate at every level. So what do I mean by design justice I'm not going to go through all those but I do want to talk to you about something it's my two favourite words and it's proportionate universalism have you guys heard of that? you have to talk to me no OK so it comes from health inequality 's thinking so we're going to steal a word from health inequality 's thinking for good purposes and the notion of it is when you're designing, I'm going to oversimplify a little bit but it's when you're designing something for everybody yeah but you start the design process and the whole process that is just part of it so you start the design process, with the people most likely to be excluded, or have the poorest outcomes because of this thing that you're doing but then you don't just roll it out for the brown and black people cause we don't really like that just so you know yeah you roll it out for everybody so proportionate universalism designed with and for the people most likely to be excluded and you it's your job to find out who these people are because it depends on the thing that you're designing so look at inequality status we have inundated within policies data you can look at ONS you can look at public health data go look at local authority data there is lots of data and it will tell you these are the people yeah in this particular situation it might be neurodivergence so you design with and then you roll it out for everyone because then what you get is not this thing that's for neurodivergent people but it's good technology that is for the people yeah and so we're going to stick with that because that is the heart of for me of any kind of inclusive design whatever you want to call her inclusive design for me it's about justice about social justice because public funds these are public services and they should be acceptable to everyone no matter what and we know that that's possible because we're all using technology all the time that is intuitive that is good tech and you know when it is cause then you want to use it you gravitate towards it so we know it is possible and one of the ways that you can make a case for it if you'll need to make it case and the reason I have it here is because go and borrow it go find papers that talk about it go look at research that demonstrates how it can be done and that it can be done if you need to get evidence in your organisations to say hey we need to shift the way we're doing our user research we need to shift the way we're Co designing whatever you need that's why that's there and I'm going to talk to you through a case study I used to share the NHS X case study but I'm going to share with you a couple of case studies of what we do with the Home Office at the moment number two I think there no brainers but they're no brainers? yeah we're on the same page and list ones yeah but that's just there for you for afterwards OK here we go alright so in proportionate universalism and looking in health inequality is thinking we have social determinants and they usually called social determinants of health but I've retained in social terms of life because they do impact your life because we're going to go back to 1989 and to that 11 year old shabira and you can see these are the factors that have been profound impact in your life right we're not genetically predisposed so you know the data around COVID, black and brown people were more likely to die and get COVID and have more severe outcomes stop because we have a genetic predisposition to COVID it’s because of health inequalities, it's because of these social determinants of health. so, I'll give you the example so the education, so I was getting past what I didn't tell you is that when we migrated to Australia, we were at the back of the white Australia policy, have you heard of the white Australia policy? No?, it was an aggressive migration policy where basically they didn't want black and brown people migrating Australian so it was called the white Australia policy it is as clear as that it was saying OK we need more people because we need labour, we need workers, we professionals, but we want white people come into this row as some brown people came that wasn't very good and so we had to move house a lot so we didn't move house because we wanted to we moved house because my parents couldn't get a rental agreement for more than six months sometimes. and so, tell me put your hands up if you went to more than three primary schools? keep your hands up if you went to more than five primary schools? still got two, keep your hand up if you went to more than seven primary schools? OK one person yeah, I did too, how many times you go to? 11, so I went to 11 primary schools as well yeah and so I was a product of a white Australia policy that said we don't want this witch infiltrated which said what the housing was like which had an impact then on my education because then I at one point was like every six months I went to a different school and so even if the inclination was there to catch someone like me this outlier who didn't fit neatly into the system it wasn't moving through the education system in the way that we predict they didn't really have much time because then I had to move again. so, I'm like 45 and I think I was counting the other day I think I've lived in over like 36 houses and so I go to my husbands to my in-law’s mother-in-law and it's the same house that he was born in, and I can't say that blows my mind. I’m like what? Oh my God! I just get blown away every single time go to island I'm like this is the house he was born in. so I've never had that experience how many of you have to live in the house that you're born in? put your hand up holidays so awesome that is like 4 so you can see how policies that you'll you may or may not be in part if you might have a policy team over there but This is why cooperation is so important you must work with your policy teams. Policy teams are very good at knowing the policy but they're not very good at all always thinking about how they knew integrate something on the ground and you guys might be really good knowing I kinda had to navigate this on the ground but don't always know how to like think about policy impacting then on how people are interacting this service, this pathway, this product that you're designing so you can see how last night shouldn't be abstract for you anymore of why these stations terminates can have an impact on the ground it shouldn't be like Oh yeah bad quality housing is not just about bad policy housing although that is actually can kill it's not just the quality of the housing but you know people's experience with that housing how much autonomy they have how much self-determinism can they choose where they live so that they've got access to healthcare and education or even when you talk about digital today to Wi-Fi yeah you need to have agency over your life to be able to make those choices and sometimes that agency you're robbed that agency so you can see how all those things have an impact and then one that's not quite it just didn't know the word to you is this racism and I just wanna like just ground that then just leave it there we're not gonna unpick it but all the evidence shows that constantly being subjected to and experiencing discrimination in whatever forms that come that has a really poor impact in your quality of life and your life outcomes and so not underplaying the importance of understanding and it's not just discrimination it's racism specifically has a very negative impact and so don't let the fact that we've gone beyond for some people thinking about black lives matter like keep it central and always think to yourself how can I be a good ally yeah and not just in terms of racism in terms of divergence disability whatever it is just always be thinking how can I so I'm gonna keep coming back asking you to think about your role in this as individuals not just within your organisations so we've touched on like be conscious of your own ego and when you're like Oh no I wanna do this thing and Say it's me that did it and stopping you from cooperating and now I'm asking you to think about your own allyship how do you ensure that you walk through the world with a clean heart and gently through the world making sure that you are taking every opportunity that your privilege affords you to open the doors for those who the door is closing over and over it's not enough to just open the door because if we have been told that we are not invited we will not we will pass the door yeah you need to come in and say they come sister come this is for you, you're welcome here and that goes to then who you're recruiting yeah goes back to employment to one of this Asian terms help who you were creating it you just recruit together that sounds like you cause that's boring Yeah ever the sounds and looks like you and I mean it is a human thing to want to do we want to be around people who make us feel good and are like us right cause we want things to talk about spend a lot of time at work but think about how you open invite and make sure there is spaces for multiple perspectives and different ways and being in the world, stay curious I'm not going to go through all those but those are there for you afterwards when you want to go through them so the case study I've talked to lots of detail another talks of the NHS X piece of work I like go quite a lot of detail of that if any of you haven't seen that and he would like it reach out to me on social media or anywhere and I consider that information but I wanted to share this one with you because it shows even in the current context cause this is life so there's some things I can't share but I’m gonna share as much as I can. even in the current context political context and the pressures that we are in right now or I will still to do some really good pieces of work and so we're working with the immigration and asylum Team and that we're doing both existing pieces of technology as well as some usability testing and some early discovery work of new technology cause the pathways about to change in how people have come to the UK need to claim asylum I don't need to tell you any of you how sensitive topic can be and one of the reasons we start set out to do this is talking to the team and they've never been able to do user research with lives like people who are currently now claiming asylum like in the last six months and that's what all sorts of reasons but one of the reasons is because the relationships we have contracts that we have a tend not to be with organisations who have relationships with asylum seekers who are currently going through that process so we designed a programme where we can support them to really have those voices because remember we wanna do proportionate universalism and but this is to next level like how do you design a service, particularly new service if you're not going to include the voices of the people who are going to be excluded i.e. currents asylum seekers. So, we do the outreach, and we do the wrap around service for the service so that the Home Office can better understand how the system they use in the piece of technology is either supported creating more barriers. So, I guess the biggest takeaway is the people we want to be good humans they wanna feel good yeah cause there's lots of ways to finding out about what how people think you just to say that the engine pull people out there are lots of ways didn't have to go this way I'm glad they went this way because I can see the impact it's already having the service and on that particular team but really we want to feel good about the work that we are doing, don't we? you get up, you go spend all your time and you are going to feel good about the work you are doing, and you want to be proud particularly when if you look in the media and the rhetoric around what's happening with our immigration policy in the UK and it can be seen by some of us as being really aggressive and to me it takes me back to growing up in Australia in the 80s people need to be able to shield themselves when they're working in that environment we want to do good work so it's all the normal things that you'd want to do this is the process that we use I put this here to share with you so if you want to if you're working with an organisation who is supporting the people that you need to work with reach out to them there are thousands of grassroots organisations working with the people that you dream of catching yeah they're working with them every day and you just need to align with them and so I'm sharing this because we use a community development practise and so aspire to work with community development organisations because they're catching them they do the work on the ego you don't need to do it then in terms of like I always this organisation that are they using people she worked in the community development organisation there's mutuality there, there's repressor porosity in community development organisations so they seek out so you know they're everywhere you know the UK has and I think we take it for granted has a history of over 400 year old history of voluntary sector other countries don't have this, like use it is rich it is abundant. so, work cooperate with the voluntary sector but go to the grassroots because national big charities and I've run them we have just as much problem reaching those communities on the ground as anybody else yeah. so don't just think oh I'm working with the charity that's it's like then you've done your homework, you haven't done your homework, you haven’t, you know, you haven’t done your due diligence look for grassroots organisations that are committed from base and they will be able to work at this level because they're already there on the ground yes So what we do it is hard yakka actually compared to doing piece of health research or a piece of education research working with asylum is really hard one because the briefs can be really tight like you must have arrived within six months and you must be claiming with family but you also must have locked not gone to more than two ports before you got here and it's like this so just gets narrow and narrow and so for a piece of research we to get one person we have to speak to like 30 or 40 and go through normally if you were saying to me you were designing let's choose OK something for health and you wanted to work with people who are in an area of high deprivation and you say OK so these post codes who have a disability Half Men half women and maybe have another protected characteristic so if we went like intersectional approach like that and it was health I only need to speak to maybe 15 Max and in that 15 I had the majority of the people they want to research so to have to speak to 40 people to get one to verify is a lot of people so it is intensive and so we work through an approach of our outreach team representative of communities they serve so they have you know local languages that have experienced this column themselves they done in the grassroots and so that's why we're able to then reach those communities and build trust because I can't tell you how many people so we might go and speak to the 30 or 40 people right and then we get a handful of people and then we tell them it's research for Home Office and we tell them we don't do the research in this I mean sometimes we do but in that into is going to be with someone working at the Home Office people run so fast they should enter the Olympics like they're out the door with that all OK all right let's do this again so trust is a big thing and then the people who do say yes is because of the trust they have with one of the community researchers and then we start going through the consent process again lots of people could run at that point cause of their like OK so people are scared of their asylum application being rejected cause they do the research not everyone understands like digital was like this weird word isn't really mean anything and so you're trying to explain to people what it is that the inquiry and why it's important and how their living experience can have this impact on the ground keep that word as well we're going to talk about the difference between living and lived but this living experience that's what makes the outreach even more difficult and this process even more important and so you go through and will share the consent form we can we go back and forth and it all needs to get translated interpreted all needs to be available because not all communities can even can their literacy level might not be that if you translate it into written it might not work so you need to make sure that it's all verbal so you need to have interpreted there with them to give them that space in that time to make sure that understood before they participate so we go through all these steps and we go back again to make sure that all through all these steps we organise interpreters so that we can be sure of how they work you know that human element to the interpreting and not like I'm used to doing this not translate for the Home Office all the time I'm part of this no then we lose trust in people we need to make sure that they feel that they can say anything and interpreter also abide by confidentiality and is like you know that's for the person and all for the for the tech yeah the tech doesn't get in the way so this is the process and at the end, one of the things if we ever work with anyone, we won't work with an organisation who refuses to do check ins. So at the end of doing it before you go in take someone's living experience this is their gold you need to come back and then we can do this in many ways but we come back and we say oh you participated in this research is this this is what I heard not this is the truth this is what I heard is this accurate is this what you said to me and we check in that sometimes just summaries because that's her panel is different ways of doing it. so I'm going to go back to the point about the living experience so we're talking to asylum seekers who are currently seeking asylum that's living this is live like I'm giving you my current worldview my living experience the experience of like you know let's go back to 1989 of having to move from place to place so if we did research then it's like this experiences upheaval of rooting from place to place not always in the same vicinity which is why I had to keep moving schools all across the metropolitan area so there's a difference and you need to pay attention to that difference between something that's current and live and the lived experience and so if you're working on things where it's the current living experience make sure that you give time and I know this is through the agile process can be difficult but I've just shared with you we're working with living experience something really sensitive and we still managed to put in to make sure that that briefing that holding that space for people who are brave enough to share with you who are generous enough to share with you and about their generosity share like pay them for their time this is gold they're living and lived experiences is gold, it makes your practise better it's making the thing that you're doing better you're creating good tech value that because value that because that 20 pound voucher that 50 pound voucher that's a pair of shoes for a kid who's like living in a hostel yeah that's food that's been able to do all sorts of things that we might take for granted we get paid for doing what we're doing, unless you're self-employed I get paid to be here I'm assuming that you are getting paid you're still gonna get paid for today's but in this time enriching your own practise so fight for those incentives make sure like at every level that is about justice as well making sure that you're valuing their time so you can value it monetarily like through giving a voucher but you value it by going in checking in as well don't run away thinking you're very clever I'm sure you all very clever right cause you've come chosen this conference so you very clever but even though you're very clever you don't know that you've heard right we get in our own way we think that we've always a distant go and spend that time to check in because in the checking sometimes something services the new ones of things sometimes comes up in your life all that's what is meant yeah because don't forget you can't leave every single bias and your worldview outside you have to take it with you that is who you are walking through the world so they're checking gives you an opportunity to open up a little space you know the light that James is talking about like using the pickaxe it gives you a little like 18 and little aperture today but go ahead this is potentially like we can see the world slightly different lens so pay attention to the opportunities that it gives you to be able to do that. so, these are reflections after the first couple of we suddenly work in January and after the first couple the team like this is really hard so that we used to this so experienced they used to you know doing a couple of calls and they've got all their outreach done and they're like this is not like the normal average this is the only thing I know I know I know I know it's hijacker but the one thing that they said is this is important work to do this is really hard but it's important and so we're going to keep doing it and said these are the reflections directly from the team but the living experience avoid to take away and the time is and stuff that's just sharing with you our practise so these are the principles in which we work I'm not going to go through them all some of you might be working with principles similar or the same as these anyway because they're just good principles one day I want us not to call this design justice I just wanted to call design like cause we're all working from that place it's not going to be me having to like convince any of you or you having to convince your managers were teams to be able to ensure that you have justice at the heart of this thing that you're doing but the basic things are like so it takes a little bit of the universal proportionalism and you see how it's kind of fits in there is that easy to see now that even though you know we started it you'll right now I haven't heard of it but you have you just hear those two words together but hard to visit don't go reinventing the wheel piggyback as much as you can, go back to those communities on other communities honour the process even if it's trash there are ways that you can do it you can create panels I would suggest to you that if you're going to create a panel with people who representative of the communities you serve that you like think about the cadence of those panels and you think about how long you keep the panel together don't cherry pick and then keep don't choose shabir's, go really go down to the grassroots to make sure that you're breathing life into it and choose people who community leaders, community leaders won't just be trying to talk about their own story yeah that will be looking at the we're hearing the stories coming up from the ground and the time so that we're sharing with you living experience that's coming up rather than just the lived experience because they need you know we all need to make sense of our own experience and so sometimes we do that we're feeding it on a panel but choose your panel as representatives of the communities they serve rather than like you're here just for your experience just think about that nuance in there. So, for us I'm always thinking about how to be ultimately pragmatic. I don't want this just to be a bunch of theory that you're like oh that's really good said good bunch of ideas and then you go back remember one of the things I want you to have as I want you to take something away in your pocket that you can then use for your own practise and deep in the narrative that you have in your organisations and so these are the things that it means in practise, you know the be data-driven is a sensitive one that actually really needs unpicking cause it's about who owns the data and who's interpreting the data and which lens you're interpreting the data so be careful with that one but go and get the data and keep looking at the data we're so lucky there actually like huge amount of data that exists on just about anything and what I would say is then always ask yourself who owns this data how do I share this data back with the communities I serve because we take data from communities and then we rub it and then we keep it as ours because it's in some sort of portal or database that’s government-owned but that'll make sense but you have that so I'm not going to go through it and so I want to leave enough time for us to just be able to have any discussions.