Respectful Curiosity: How and with whom are you building inclusion?

Transcript

1. UX Australia 2019 (AUUXAU3008D) Main Room, Day 2 – 30th August, 2019 ZOE GREEN: Come on in and take a seat. We have a missing clicker, so bear with us! We might just start anyway. My name is Zoe. This is Sam. At the beginning, I would like to acknowledge the country that we are on today. The Gadigal people of the Eora Nation, I would like to acknowledge the present, past and future elders on this land that we will gather today and talk about these really incredible things. It is a privilege to be here. The first thing I really want to say is that we are not experts in other people's lives. We are not here to tell all of their stories or relieve them for them. We're here to share our experience is with working with people with different needs. That is what we are here today for. Sam can testify to this. I have been freaking out on morning about this and probably for the last couple of months since I found out. Am I the right person to be up here? Everyone has kept saying, you are just sharing your experience. That is what I am here to do today. SAM FRAIN: We wanted to start by asking you guys to stand up, and I want you to sit down if you do not know a person with disability. If you have never met one or spoken to someone. If you don't know someone, sit down. Everyone turn around and look. That is everyone! Literally. I can't see anyone sitting. No one is sitting. People with disability are everywhere. They are in our lives and our work lives and our personal lives or the lives of people we know. People think about inclusive design all the time when it is life. It is the life we are living. People with disability are not an ad on or an extra. They are part of your life now. Thing we need to start by taking a deep breath and recognising that Before we crack into what is really just a series of tips and hints and some pretty funny stories about when we got it really wrong. SPEAKER: Really, really wrong. We will be honest today. I will start with a confession. I am not a designer at all. SPEAKER: Thank you SAM FRAIN: I am an occupational therapist by trade. My background is a clinical background. I have worked in the disability sector for 20 years. My career evolved into the UX innovation space around disability and I now run Northcott Innovation. We work alongside people with disability to find innovative solutions to the problems that they identify. But I am not a designer! ZOE GREEN: I would probably say I am not a designer either. We work with a lot of different people doing a lot of different things. I have been with Mel for about 2.5 years and I have gone to work on a lot of transport projects, government projects, some private corporations. I love the different experiences and joy is that I get to share back. During that time, I have done some, not a lot, of research with people with different needs, especially the transport space. A little from doing it and made a lot of mistakes as well. It was the best learning I've ever had.
2. UX Australia 2019 (AUUXAU3008D) Main Room, Day 2 – 30th August, 2019 Page 2 of 10 We want to start about by talking, who are we building inclusion for and how are we doing that? Designing for everyone is kind of hard, we're talking about all and when we say all, we really mean all. When we think about the population in terms of that sort of bell curve, and every single population group you can map out on a bell curve. When we say all, we mean the really... People at the pointy ends as well. Even though that is more of a challenge, all means all. Those of you who do not know Heather Simmons, she talks about the 12 values of inclusion. They are sort of principles of how you could approach anything, be it your everyday life, your workplace. The 12 values are really amazing and equally overwhelming. Even though I have spent my entire career in the disability sector, I still read those 12 values and go, oh, God, are you really living up to this? It is really hard. The speakers that were before us, when we have marginalised communities, our people born in or is that was, you know, we have put a barrier to them being included in that context? Today, I wanted to sort of highlight these four once. People with disability are born in. We all said we all know one or work with one or are related to one or are friends with one, people with disability, they are in already. We should not have to include them will stop they are in. All the means all. That is saying that irrespective of someone support needs or their circumstances or lived experiences, and irrespective of whether they are the bell curve, they should also be included in whatever is you are doing. Everyone in support. This is a really interesting one. If we think about our day-to-day lives, everyone needs support to do different things. If I think about my day-to-day life, I have two small children. A six-year-old needs an insane amount of support to put his school uniform. The number of times I have circled back around and told them to put his shirt on, just put it on! I am so repetitive. Every single morning. He needs support just to get addressed. He does not have additional needs, he is just a six-year-old. If you think about a university lecture, I will call the person question girl. She keeps putting her hand up and it just replaces the last sentence the lecturer said. You just wanted to stop. That person needs to keep asking this question because that is the kind of support they need to understand that topic. There might be someone else in this room... Can anyone else hear the air conditioner, it is super loud. There might people in this room, for them, they may need additional support to tune out that air conditioner. It is really loud. And to concentrate on what is happening in this room. Everyone needs support, it does not have to look like a support worker, a white cane, a hearing aid. I think that is a good tip to remember. Everyone can contribute. Irrespective of how you communicate, how you present, what you look like, everyone has a right to pitch in and give their contribution. The effort since with us. It is our job to make sure they can contribute. They have the skills and capacity to pitch in with whatever the activity is. It is our job to remove those barriers so that they can contribute. They have the skill, we just need to create the space for them to do that. ZOE GREEN:
3. UX Australia 2019 (AUUXAU3008D) Main Room, Day 2 – 30th August, 2019 Page 3 of 10 Absolutely. Sam introduced me to these principles and they are actually quite difficult to find online. There is really just one video of Heather talking them through on a whiteboard. They just resonated so much. it reminded me of the author of a book who talks about speaking to people in very diverse backgrounds and jobs. An example is a Sudanese pirate. She had a conversation with this guy. She was standing there next to someone who she just disagreed with, fully. Everything that person had done, she did not understand. How could you kill all these people? Just the way you are. They were talking about the love their children. Or the love of their family. She thought, that is all. I may not fully agree with you, but we can still be one. We can still be humans together. I really loved what that means and these values of inclusion. I wanted to put this up as well before we go through, just so we can look at, what does all mean and how does that impact on our inclusive sector in terms of how we get around the world? It is not just about people who are in a wheelchair or have a guide dog or are vision impaired. This started off as Microsoft inclusive. In a transport project, a colleague of mine took them and found them and we were unable to have anyone with a disability in the room to have their voice put across. We had a bunch of stakeholders and executives. We wanted them to think about the people they have never thought about before and helping them to build empathy. We tweak them a little bit. Sam and Northcott Innovation help last week them again. We have built on them again to ring them back into the experience. I want you to think about this spectrum. The exercise we did before about closing our eyes and being in another country and not speaking the language, maybe it is about having an accent or not understanding the language. I have laryngitis, and this is about having a needle support. Maybe I have a stutter. Maybe I am non-verbal and I communicate using other means. Maybe I'm a wheelchair user or I have luggage and a pram. I need different ways of getting around spaces and only different supports. Again, some are situational and some are more permanent. We can start to almost embody... Or just bring back home, if we have not met one or understand the experience. Another example is, I cannot see, I have conjunctivitis, I have blind or I have low vision. Or, I am on the train, I am listening to some really loud, bad music, I cannot hear I might be deaf, as well. There are lots of different ways that people can have different impairments at different times and yes, some are more permanent but some are in a moment or temporary. I think as the top before was talking about, everyone can be vulnerable at some stage. This is just showing this. You know what? Look what happens when we do design for all. I think this might have been an accident. People really love going to Coles during quiet hour. They are not playing the bad music, it is not a stress. The beeps on the cash register are lower. It is less scary. Thing about a translation. Having built-in redundancy in the environment is so important, not just in case one lift is out and someone cannot get down up off the train station. It is these options for people who might have to have prams or luggage. Taking a ramp versus the stairs or escalator. As designers and as people, why do we need to build inclusive experiences? We have a responsibility as a designers, we do make stuff that goes into this world, we have that
4. UX Australia 2019 (AUUXAU3008D) Main Room, Day 2 – 30th August, 2019 Page 4 of 10 responsability that we facilitate. Let's have a look at some of the risks if we don't get it right. It means basic needs are not met. This is a short clip of an experience I had of a woman who was going through a translation, showing us what a day is like. You can see me hovering behind, basically what happened, we were going to catch the train, she tapped on her card, we went into the elevator, she tapped the buttons, she does have trouble tapping the buttons, she takes a little more time, but she can do all those things. We got down to the platform, the guard was not there. When all around the platform looking for the guard. The train is coming, we thought, the guard is upstairs. The angle of the lift and where her chair was, meant she could not reach the button. It meant she was trapped downstairs. There was no one there to help her except myself. I had to push the button for her, otherwise she would have had to wait for the guard to come down. He might have been on a lunch break. If we don't get those tiny touch points right, basic needs are just not met. People might not feel safe moving around the world that they are in. We design for ourselves and we forget others. This is a video of a sensor in the US that was not responding to darker skin. He put his hand under, it doesn't respond. The engineer is white, uses himself. great, everyone must be able to use it. We designed for non-existent norms. We design people out, create instances like hostile design and hostile architecture. We embed bias is, this is becoming more and more prevalent, we embed biases into machines that are expected to make human decisions. This is a book that a colleague put me onto, Virginia Eubanks, unbelievable. The author talks about a screening tool is a high over brief, a tool started in New Zealand now in America, it takes a number of data points, the idea is it can predict what families are at risk of domestic violence, child abuse. This quote is from the County Clerk, "you feed shit in, you get a shit out." We might miss people who actually need help. When we think about how much AI and machine learning is coming into our world. Life is harder than it needs to be. This is the woman who can't touch the emergency point when she's stuck in the station. One of our colleagues took this photo at the Hilton. She could not see the tea on the table, they are quite high. How could someone in a wheelchair or short statured get it? SAM FRAIN: Assumptions. Let's bust them. We love assumptions and bias. We are human. We need to be able to acknowledge them and reframe them. How do we check them before we go into research? We thought, we like talking. Rather than us rabbit on, we went to people that we work with. We ask colleagues, I asked people that access some of the disability services near where I work. There is a mix of colleagues and people who access disability services. They will talk about some assumptions in a series of videos. This first set is around assumptions
5. UX Australia 2019 (AUUXAU3008D) Main Room, Day 2 – 30th August, 2019 Page 5 of 10 based on how people look. ZOE GREEN: Assumptions based on appearance. We all know what that feels like the top if I'm having one of my super anxious days, thinking, is my hair out of place? must have something on my shirt. For someone with different needs, what people are thinking about them? This is a co-worker of ours. Can you turn it up please? VIDEO: They don't need to yell at me for me to understand them. SPEAKER: She is non-verbal. She uses her eye gaze to spell. So predictive text, using a kind of iPad, she selects it. We've got another co-worker, Shirley. SHIRLEY: Many people with a disability have to deal with (inaudible). Especially (inaudible) my electric wheelchair. I get frustrated when I am not spoken to directly. Treat people as equals and do not make assumptions that they are incapable of communicating. SPEAKER: No one thanks me or praises me for walking. Why are people praising Shelley for her mobilisation? Sometime she works, sometimes uses a chair. You shouldn't congratulate her, surely in particular is a particularly talented co-worker, she has a business degree, a commerce degree, the assumption is people make about her capabilities or intelligence, based on the fact that she is non-verbal, and she uses her iPad, or we can see this clever shot of her low-tech communication device. She points with her finger, the person she is communicating with, will read out the word to form the sentences. Who have we got next? Vaughan and Mirena. VIDEO: People stare at me in the shopping centre when we are walking around. I can still see. People come up to me like, can you see me? I say yes, I can still see. SAM FRAIN: They are a married couple, like half of you and your partners, I assume. They live independently in their own apartment, but they have 24 hour care in order to live independently due to their disabilities. They will feature a bit later as well. The romance of their story. But, later. We have a more polished video clip coming up next. Done by a TV show, not done by us with our phones. ZOE GREEN: This is from You Can't Ask That. VIDEO: Do people treat you like you are stupid?
6. UX Australia 2019 (AUUXAU3008D) Main Room, Day 2 – 30th August, 2019 Page 6 of 10 SPEAKER: People think I am stupid. SPEAKER: I personally don't feel, due to my circumstances, the people treat me stupid. It's only by my actions. SPEAKER: (inaudible) SPEAKER: Because I communicate well, I don't experience that often. I struggled with that in school, teachers would assume my intelligence was low. SPEAKER: (inaudible) SPEAKER: Some technical issues with this video. So sorry. Right now he's talking about going to work. Going to a job interview. (Video plays) SPEAKER: He's talking matter job interview he went to. I can't read sign language, I've just seen this video before. He doesn't put down that he is deaf, he says he is physically fine and he can work. They don't know what to do. They panic. His friend are saying the same, he could get a job as a labourer or bricklayer. So they started their own business, because no one would give them a chance. The last I was saying, treat us as equals, basically. Sorry about that, I hope you enjoyed the over speech. We have another cluster of videos, we have grouped them around assumptions people make about my decisions and my desires. They assume I can't do that, I shouldn't do that, and make decisions for me. We have a cluster of people talking about what that looks like. The first one is Vaughan and Mirena, again. VIDEO: (Inaudible) SPEAKER: To piggyback off of that, they got married a couple of years ago. I wanted to show this article, it says "Community kicks in for cerebral palsy wedding." They are just two adults getting married because they are childhood sweethearts. Absolutely they fundraiser, because two people living on a disability pension, they fundraiser their wedding. They are not a cerebral palsy wedding due are, they are just two adults getting married.
7. UX Australia 2019 (AUUXAU3008D) Main Room, Day 2 – 30th August, 2019 Page 7 of 10 The second one is the picture. The worker is front and centre. If I was going to get married, and I was going to marry Zoe, because now it is legal! SPEAKER: The media would betray us like this. There would be no third person in the middle, unless that is what we were doing, and I would be OK too! (Laughter) SPEAKER: For Vaughan and Mirena, there are just two people in this. The disability support worker is in the middle, literally holding their hands! If you go and read the article, don't actually, it is a bit heartbreaking, it has quotes from the CEO of the organisation that they receive disability support services from. If I marry Zoe, my manager should not be quoted in an article about me marrying Zoe. Why are they quoting a CEO about Vaughan and Mirena's marriage? They are just two people in love. Society has assumed so much stuff about them and then betrayed it in so many different ways that it starts to skew everyone's internal biases. There is another phrase right at the top, 'Vaughan is a pretty resilient young man'. He is probably just a young man, right? Is resilient necessary? In the second paragraph, it says they are confined to wheelchairs. Being bound to, can't get out of, it is not about the will to have, it is about Vaughan and Mirena. This is only a couple of years ago. It is not the 1960s. Moving on before I get too angry about it. This is Shirley. SPEAKER: A physical disability, I feel I have achieved a great deal in my life. I have learned to challenge myself. I was fortunate to have a wonderful supportive circle of family, friends and support worker. Some of my achievements are having a paid job and go into the cerebral palsy conference. I have also (inaudible). I have also perfected speaking without using my voice. (inaudible) childcare centre that I understand that I think with my voice which takes time. I have a physical disability and need assistance (inaudible). The most important thing to remember is to treat people as equals and not make assumptions that people are incapable of communicating. SPEAKER: I am really good. How was your day? SPEAKER: How are you? SPEAKER: Good.
8. UX Australia 2019 (AUUXAU3008D) Main Room, Day 2 – 30th August, 2019 Page 8 of 10 ZOE GREEN: The next one up is Moe. He is getting support a couple of days a week to develop his ability to live independently in the community. He is also a fierce sex and disability advocate. MOE: I said that I wanted to see if everything is OK. So I said to Doctor, I can't do it in their because I am a in wheelchair. He said, that is all we have. I asked if he assumed that just because I was in a wheelchair, I want to have sexual intercourse? (inaudible) ZOE GREEN: He goes on to say that that interaction went on for an uncomfortable amount of time. Back and forward. In the end, the doctor gave him an ice cream bucket, as if that is any more helpful, and washed his hands of the situation and said, you really need to test anyway. Even though he is a sexually active young man and he is doing the right thing by his partners and getting his sexual health checks done, the entire experience has made him feel the humanised, embarrassed, and he did not get his checks done. Or because a doctor could not think of another way that he could give a specimen to do the test. This is our last one, and it is Vaughan and Mirena again. SPEAKER: We wanted what we needed and the (inaudible), (inaudible). SPEAKER: We can do anything. ZOE GREEN: We were conscious to not speak on behalf of others, which is way we have played so many videos. I am conscious of time and we want to wrap up, but we want to talk about some mistakes we have made along the way, and the fuck ups, and the lessons we have learnt about that. Failures are actually just learning in this case. We'll need to remind ourselves of that. I once pulled a chair out on a blind woman as she was trying to sit down. I was just trying to be hospitable and make that reaction for anyone was to adjust the chair. She said she didn't need that and I said, because you don't, you need to find a chair. She had acknowledge that that was not what she needed. A sort of crowd sourced some examples. Scheduling in interviews really early in the morning for people who have mental disabilities, they do not turn up, generally. Scheduling them later in the day definitely works. Also, there has been a couple. Sam? SAM FRAIN: We were organising workshops for a whole range of people. I did not say, do you have a lift for persons? We had them go into a goods lift. It was a bit of a squeeze. It was a bit of a mistake. We have also done testing because we're building an app for people with vision impairment. We had a great pre-conversation with one of the users, we went to an environment where she was really familiar so she knew where she was going. We lay the parameters. Very hands-off.
9. UX Australia 2019 (AUUXAU3008D) Main Room, Day 2 – 30th August, 2019 Page 9 of 10 Moving through, the app is not going well. She is getting frustrated with the app. And then I see a massive pot plant and in the sheer panic of thinking, there is a pot plant, she said she did not want me to help, she tripped over it, fell on the ground and injured herself. My job is disability innovation inclusion and I just stood there while she ploughed into a pot plant, because I was so caught up in thinking that she said not to intervene. I just had a bit of a brain fail. ZOE GREEN: These things, we cannot be afraid to stumble into them. Someone once told me that I would be clumsy in different situations. As long as you were respectful and curious, that is what matters. Asking someone, is that OK? How should I rephrase that? What can I do, what do you need? How can I help? Those are the questions you need to be asking. That leads us to, quickly... Out of these, I think the best thing for everyone in the room to do is go through the disability to get information. It is on the Australian Network on Disability. It is just a run-down of what we're going to quickly go through. The first thing is about asking. Just ask the question. It may be uncomfortable for you but it is better than falling into a situation where you have offended someone or done the wrong thing. This is around research, ask what they need in advance, how is this test? Where should we do this? Do not make assumptions. Next one is just acknowledge, making sure you acknowledge their support for their contribution to the research. Making sure they are involved in the research, paid for their research. All of the videos here, except the ABC one, were paid. They are staff. The next one is value in budget. A lot of the time, it is not budgeted in. It can be more expensive to include people with different disabilities. Your budget may need to expand, but this is not a reason to not do it. ZOE GREEN: I recommend you have disability or inclusion as its own line item. I challenge any project owner to say, we cannot afford that. If you explicitly state, this is for translators, this is for the transcription, this is for the closed captioning, they have to say yes. Put it in the budget from the beginning. Inclusive design takes longer. Allow time. When you would have seen the clips, we have obviously consolidated that down because we do not have very long to talk. Their communication takes time. Vaughan and Mirena, their communication takes time as well. There is gaps and pauses while everyone thinks and processes. You need to make sure there is enough time to interact, take a break, come back. It all takes time. You need to factor that into your project plan because it quickly becomes disrespectful to rush people through. Remembering that not all people with disabilities have support. You do not always have to include someone's care or parent or defector. Some people, you can just ask them and they can participate freely. For others, they have a support network and it is really important that you include it.
10. UX Australia 2019 (AUUXAU3008D) Main Room, Day 2 – 30th August, 2019 Page 10 of 10 Be fully conscious of who that individual is. Who is around them and is it appropriate? Also, recognising that there is a difference between independence and autonomy. For Vaughan and Mirena, due to the degree of their physical disability, they are not very independent. They need someone to support them with most daily activities. Independence for them is not the same as autonomy. They can make their own decisions. Just because they need someone to help them get dressed doesn't mean they cannot decide things about their life as a married couple. Reimagining the artefacts and activities. When we all turned up to the conference, we were given that cool pencil case. If I could not write, what good is that goodie bag to me? What is the point? If you cannot voice your opinion or because the Post-it notes.. If that is all unfolding and you can't see that happening or it is happening at such a rapid pace, and you are not given the opportunity to process it, or the words are not plain and simple enough for you to understand it and maybe they do not given an easy English guide for you to follow, we need to change how we do things. We cannot just revert back to post-it notes and touchscreens. We have to rethink it. Thank you for your time today. (Applause)