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Thanatosensitivity

From Wikipedia, the free encyclopedia

Thanatosensitivity describes an epistemological-methodological approach into technological research and design that actively seeks to integrate the facts of mortality, dying, and death into traditional user-centered design. First coined by Michael Massimi and Andrea Charise from the University of Toronto in a joint paper presented at CHI 2009, thanatosensitivity refers to a humanistically grounded approach to human–computer interaction (HCI) research and design that recognizes and engages with the conceptual and practical issues surrounding death in the creation of interactive systems.[1]

The term thanatosensitive is derived from the ancient Greek mythological personification of death, Thanatos (Greek: Θάνατος (Thánatos), "Death"), which is itself a term associated with the notion of the death drive common to 20th-century post-Freudian thought. This inter- or multi-disciplinarity is crucial to thanatosensitive investigation because, unlike many areas of HCI research, studies of death and mortality are rarely amenable to laboratory study or traditional fieldwork approaches. As Massimi and Charise argue, the critical humanist aspect of thanatosensitivity effectively offers "a non-invasive strategy for better understanding the conceptual and practical issues surrounding death, computing, and human experience".[1]

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  • Technologies for Aging Gracefully

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>> NICK: Ron Baecker from University of Toronto He's going to talk about Technologies for Aging Gracefully. Ron. >> BAECKER: Thank you Nick, I requested a very short introduction, and you did a great job, it's exactly what I wanted. Can everyone hear me here and in Toronto or wherever else, I don't know how many other places are watching. Okay, the--I'm here in part because I've been fortunate enough to receive two Google faculty awards, one of which was really instrumental in funding a very exciting project that I'm going to show, another one of which is now helping yet a couple of other projects. To start it, I did give a version of this talk in Mountain View I think about a year ago but I thought it would be nice if I said thank you to Google Canada as well and here so, hopefully you'll enjoy it, feel free to interrupt me at any time. I have more material than I [INDISTINCT] I will play it then, that's all right. I want to engage you with possible and conversation and after too many questions, I'll maybe ask you to hold them to the end. So, my lab is called the Technologies for Aging Gracefully lab and the reason I created this lab and it follows a line of work that I've been doing for almost 10 years now. Then I started about 10 years ago, when I can see turning 60 on the horizon. I can now see turning 70 on the horizon and [INDISTINCT] this work is worth doing. The good news is were living much longer and in fact the United Nation staff that say's by 2150 the percentage of the world population that's over 60 will have grown--grown from the current level of 20% to the level of 33% is just staggering, that is assuming the world would last to 2051 and the world's going to be very, very different place and the good news of course is that many of us will be around to enjoy that, I'm not sure if we, specifically will be around 2150. The bad news is that we have to come--come back a variety of impairments, disabilities, challenges centering motor cognitive et cetera, and you should see listed on this slides some of the things like Alzheimer's disease and mild cognitive impairment, MCI. If you're diagnosed with MCI, the odds are 50-50 you'll be diagnose with Alzheimer's disease within four years. There's a fair amount of research that's directed towards making the life of seniors easier and better, most of it is research that comes out of the AI and computer vision and machine monument community and you become a community and it [INDISTINCT] that says we can make machines smarter and put them all over the place in the walls et cetera, and they can watch out for bad things that may happen and [INDISTINCT] this is a very exciting line of research, our approaches is somewhat different, our approach is without technology to help make seniors smarter, more capable, more resourceful and to enable them and there family members and this is keen to work together to combat the effects of certain disabilities or impairments or just the things that happen when you get older. So, were about 20 people, students and staff at the University of Toronto, we have lot's of clinical collaborators in various hospitals and medical schools in Toronto and Northeast US. Our--as you'll see in the talk, we use a variety of technology so, it's not just like were only into mobile phones, were only into multi media you look around for human needs that seem compelling and sweet spots where technology might be relevant to that human need, in vision ways in which the technology could help and then design prototype build and were possible commercialize the solutions and the burden that my students have is that unlike much work in the field of human interaction which is sort of my core discipline, where students do their research by bringing a dozen or two dozen or three dozen first or secondary University students into the lab to test some new interaction technique for 10% performance and enhancement and the 5% air reduction rate, we actually try to build our technologies robustly enough to deploy them with real seniors, living in your real homes, doing real stuff and this is quite a challenge and we work with people with a variety of disabilities and challenges which are listed there and many of which will be mentioned and illustrated in this talk. Now, this work is not existent in a vacuum, just in case any of you here are thinking that you change the world and make lots of [INDISTINCT] are coming back for another degree or whatever, we do have four faculty and computer science in the University of Toronto. Listed there are myself, Robin, Khai and Daniel, who do very excess to Human-computer Interaction Research and, you know, I don't want to be too boastful but we're pretty good at it. We have a really, really well regarded group on a world class scale. The mentor of our lab is Research for the Journey through life and our minimal goal is to develop prosthetics, things that help combat some impairment or disability, and that's where we started so, if you think about breaking a leg, the crutches or prosthetic because you use to crutch to help you walk. More ambitiously, we look towards methods for rehabilitation. So, again using the example of breaking your leg, once, after you use the crutch for a while you might work with a physical therapist in order to strengthen your leg. And were also looking for preventive interventions for example, to the delay mammal aging and this is a very controversial area of great commercial activity, almost literally a feeding frenzy and I'll talk about our response to this opportunity a little later. We work in three main areas identity, autonomy, family and community and they can be best understood by going back to the word need that I mention a few minutes ago and I said, we respond to human needs or we try to respond to human needs. You know, what is a human need? Well, there's a psychologist named Abraham Maslow. He wrote a seminal paper in 1944 in which he proposed a higher key of needs, ranging on the lowest level for physiological need to the highest level of self-actualization, whatever that means and to illustrate that the next slides talks a little about what their needs, with the lowest level, well, we need oxygen to breath, we need food, we need water, we need--we need to be healthy. The next level we need to feel safe and secure at the next level Maslow talks about love needs for love. Now, we don't really have a technological solution for that yet but we approach this from the point of view of what can we do to strengthen family and community and at a very end of the talk I'll mention one project that we started in that rightly hoping to get Google registered in because it relates to Google plus the notion of this special kind of circle in Google plus called the family. At the next level, esteem needs, we try to make seniors as autonomous and self reliant as possible to allay--allow them to do things that they were able to do that they were younger and the bulk of our work is really in the family community autonomy area and in terms self-actualization which is really sort of having a mission to your life. What we do, the work we've done is focused on the need for people as they loose cognitive of abilities through various forms of dementia to enable them to retain and their families to retain that sense of identity and I'll explain what that means that actually towards the end of the talk. So, this is an outline that we'll talk, I'm going to work my way up the hierarchy from physiological needs to self-actualization and the first two lower levels physiological and safety needs, I'm just going to speak about it very, very briefly because we're not actually working in that area now but I just want to give you a feeling for some of the kinds of things that are being done. So, in terms of health needs, physiological needs, an area of great interests is the area of websites to help health and again its possible that Google has its significant intrinsic contributed in this area in the notion of being able to find reliable information at your finger tips that help you understand the possible disease condition and what I've illustrated here are three pretty credible and successful websites for help ranging for PubMed Health which is a government side on the upper left through the Mayo Clinic, a renowned private healthcare institution to WebMD a company set up to--to work in this area one of the many companies set-up by the--the famous entrepreneur and--and computer scientist Jim Clark. Also, at that level one of the really exciting areas now, I think is technology to help seniors to be fit and here's an example of seniors using the Wii, I don't have some pictures of seniors using the Connect but I think the Connect which my friend, Bill Buxton, says it's the fastest selling consumer product in the history of the world or something like that. I think the Connect is going to have some significant impact in this as well. So, that's all I want to say about physiological needs. So, just a question to engage you, I mean you know, you're a--you're a web savvy guys so I assume you look at websites. How many of you when you bring that information to your physician, how many of you feel that this helps your dialogue with your physician or hinders or provides a new challenge to your dollar? If it helps raised on him, if it hinders or provides new challenges raised on him--okay, well, you raised your hand, both of them, okay. So, anyway, I don't have time to go into this but the--the ability of consumers health consumers, consumers of health information to know more or think they know more provides interesting new challenges for the way Medical care is going to be run. Let me now move to safety needs, there's a lot of excitement around the about Smart Homes and you see a diagram on the upper left that all straights sort of an image, a vision of all the kinds of technologies that could be available in Smart Homes, seems to monitor electricity, to watch you to ensure that your stove goes off, medication adherence, et cetera. There are individual aspects of this to the reality through the most practice is still affection that perhaps will be realized in 5 or 10 or 20 years. Although, this is exciting research and I just want to mention two aspects of research that I find particularly exciting. On the upper right is work from Shwetak Patel of the University of Washington and this is actually the commercialized and Shwetak has ways to hook up electronics both to the electrical circuits in your house and to the fluid flow in your house water and actually detect the differences between what's happening today and what happened last week or over a period and say you know this person usually runs the toaster and the coffee pot every morning now they had it done two days in a row, what does that mean? Alex Nicolaides, a brilliant young researcher at Toronto Rehab and UFT, in the lower part of this, works on fall detection and this is better than, "Now that I've fallen and I cant get up" with someone else needs to press the buttons of this--if commercially realizable and not quite optimistic that this will be turned into products within the next 5 years, would allow computer vision and AI to detect with reasonable certainty that it looks like somebody else has fallen and in this case you see the images of a shadow next to a bed. How many of you use Skype to actually--so now I want to move on to the need for love. How many of you actually Skyped with family members or significant others or distant relatives or whatever? Okay. So, or Google--I'm sorry. Google, what's the Google video is it called then--pardon. How many of you use Google video for that I shouldn't--I shouldn't talk about Skype here, okay, so, bad, bad, bad, bad thing, okay. But--but you know Skype--Skype has almost become like Kleenex. >> What about Google? >> BAECKER: Having, you know, a brand of word that's in that field. Okay, so were doing something a little bit different, we're not interested in the kind of people I can--I visited my friend and Marcus, a graphic designer in Berkeley, and watched on Sunday morning as he and his wife spoke happily and enthusiastically with grandchildren I think in Austin, Texas and some where in--in the far east, et cetera, et cetera. We're interested in facilitating connectedness in communication for people who are isolated and lonely and may not have the--the psychological resources or the technical skills to pick-up Skype at the moments noticed in chat and real time. And there are a lot of groups like that, some not all but some seniors living alone, 724 homebound caregivers, there are millions of people in this country 10s of millions in North America who are almost at total support as a caregiver for someone whose got Alzheimer's or Parkinson's or [INDISTINCT] stuff or something like that. People in long term hospitalization or people in the hospitals for even 10 or 20 year 30 days are very isolated from family and friends because its, you know, I remember once asked me someone, the television was free and this particular institution being--if you wanted a phone, you had to buy it, you have to let them come, that didn't come. Individuals who are quarantined, individuals with chronic fatigues and drug. We even particular been looking at people with chronic pain. And the characteristics of all these kinds of stake holders is that, for the most part they live alone or with very little support. They may also have some sensory or motor impairments and they have little control about their availability for social interaction at a given time. They are bit powerless. So, we've been working in particular with chronic pain which is a year ago was introduced to by Professor Diane Gromala and Simon Fraser who works in this area. And she convinced me in several papers she sent me that this is former widespread phenomenon that I ever thought. There is something like 27% of community developing--dwelling seniors in Canada. Now, it's more if you're in a hospital or institution. But community dwelling seniors in Canada are chronic pain, which means pain that persist over three months. So, we've done, we've completed an interview study with 20--it wasn't 30. I think it went up as 20 several people with chronic pain. A long interview study in which we asked them a lot of questions about their pain and about their communication with family and friends and loved ones, and their desired communication at to what extent technology was playing a role in being helpful or not. And the findings which will be reported next frame yet. The conference as we get the year 2012, is that the severity of their problems, there is significantly depending on the kind of chronic pain and how severe it is. But the intermittent variability of chronic pain, the fact that you cannot predict when you're going to feel good, and when you're going to feel terrible, and when you're going to feel so terrible that you can't barely breath or do anything. It causes great uncertainly, rapid communications and makes it difficult to schedule face to face meetings, to schedule excursions, to do Skype calls and things like this. And also, the human factors in ergonomics of the technology, that people use ranging from computers to phones and even a lot to be desired. So, what are doing in this area? Well, we started working with the concept of a Digital Communicating Picture Frame. And this was first prototyped by Elaine Macaranas as a fourth year thesis at OCAD University. And you see here images from Elaine's work. And now, you see this project's has been taking over by Jessica David. And I'm going to show you a little video that shows what this will be like, with sort of a bit of a screwy video message. So, the idea is that the person in chronic pain or the person who's isolated will touch the frame and the message will go out to close family members saying "I'm thinking of you." And there and then encourage to basically turn on their webcam, talking to their mobile phone, whatever. It send back a little video message and you'll see that or to take a pre-recorded video and that's what you'll see in here. >> Your message has been sent. >> BAECKER: Okay, some time later now. >> A message has arrived. Touch the screen to watch. >> I'm so bored and get the point here, all the guys said in front of me. Look at me. I'm a grad student. I'm 30 years old and I made $200 lives to hear. >> Don't make fun of gramps to us. You just made a terrible life choice. >> BAECKER: Okay. So, this would not be a typical use of this. More typically--I mean, the idea for this project actually came as I visited several times my sister who eventually succumb to MS after a 15 year battle. And the last few times I visit her last four or five times. This was in a rehab facility Northville, Philadelphia. I walked the halls of this place and all of these people were lying in their beds, mostly other people. Even the people who were not comatose were lying in their beds. And there were TVs going, off in two TVs in a room. And I imagined my sister's TV stopping for a second, a loud voice coming over. We interrupt this mess--this mindless dribble from CNN with a message from your son, "Hi mom it's Neil. Went golfing yesterday. Shot 88. Three birdies. Going to see them next tomorrow night. Coming to see you this weekend with my new girlfriend. Love you. Bye." Okay. Now, my nephew and my niece spent eight to ten hours a day on a computer or a cell phone. This would be a piece of cake for them to do. So, we started doing this with picture frames and we're continuing Jessica for a master's thesis. Is actually trying to understand better what actually happens to people in terms of who have chronic pain, in terms of when and how to communicate with friends and family, and the extent to which--the extent to which they want to or unable to. And we'll test model two of our communicating picture frame which is being built in. The first one was with a net book. It was distant disaster. The new version is on the android pad on the Samsung app happily enough. And we also--have also some other things we planned to do in the next few years. Some of which are technological enhancements to this and some of which are behavioral like, what's the--what is--what are the possibilities for using this? So, Allison Benjamin, a wonderful research assistant who works with me, is now following up on the study. The interview study she did with chronic pain by doing--starting a set of questions in a complex continuing care hospital situation and then a long term care/nursing home situations. To understand the communication patterns and needs and wishes for people who are living there. Okay. And now, I'm going to move down to--oh, okay. So, I want to ask you a question. How many of you know at least one person who you would regard as significantly socially isolated and lonely? Okay. Good. All right. All right. So now, I'm wanted to move down to esteem needs. So, the area that is really receiving the most commercial attention now is brain fitness. How many of you--either half or know someone or have seen the Nintendo game Brain Age? Okay. One person over there. Okay. There is a huge feeding frenzy. There is a huge commercial activity around brain fitness. Not quite maybe as big as crowd computing is right now, but really huge. Okay? Lot's of company is trying to make money. It projected the market to go up to five billion dollars in 2015. Nintendo is the 800 pound gorilla in the field and that they probably sold, maybe close to a billion dollars worth of Brain Age over a the six or seven years since they put it at, but there are 50 or a 100 other companies. And the idea, the hope is that we can slow mental aging. Okay? If you do a knack of the right kind of thing. Now, why should we think that this might be possible? It used to be 30-40 years ago, psychologist and neuroscientist --well there weren't neuroscientist 30 years ago but the equipment would tell you, "Okay. By age three, four, six, eight, you're going to continue to grow neurons. You're going to learn new things. You're going to increase your capabilities." But by the time you get to college age or your age or whatever, that's it. You know, it's down hill after that--that's no longer what people believed. There's a science of great rusticity that's emerging that says, at almost any age, you can recover from certain world damage by essentially rewiring your brain. Okay, and there's a concept called "Cognitive Reserve" out there that's most associated to your Google cognitive of reserve the name of the researcher you've come up the most often is Yaakov Stern--professor Yaakov Stern of Columbia Medical School, and I visited his lab five years ago on the house Sabbatical. And the idea of "Cognitive Reserve" is you can take two people or two-third, you know, of a thousand people or a thousand people who have matched amounts of brain damage, okay, plaques and tangles, the things that often manifest itself as Alzheimer's disease. And you can--and yet, one of them is perfectly healthy and the other one has memory problems and executive function problems and other things that make him look like they have Alzheimer's disease. They're what--what's called expressing Alzheimer's disease. Okay, why is that? Well, if you look at a large numbers of people, you'll see that people who went to Harvard or Waterloo or whatever have built up more cognitive reserve than people with a high school education. People who have worked as doctors or lawyers or programmers have more cognitive reserves than date seekers. People who have had lots of friends it's better off than being a hermit. People who've exercise a lot you're better off than being a couch potato. If you eat a Mediterranean diet you're better off than eating McDonald's or Kentucky fried chicken. Bilingual education as a young kid helps give you more cognitive of reserve. So, if you've been a good person and done the right things over a lifetime, you are better able to withstand the neurological damage that manifests itself as Alzheimer's disease. But, there's relatively little evidence--not no evidence but relatively little evidence that says "if you start doing "Sudoku's" at age 60 or playing "brain age", or whatever, because that's really going to help you. Okay, and in fact, you can do sudoku's at age 60, there's evidence that you'll probably get a life better at sudoku's, but there's little evidence that says, you're going to get better at cross-word puzzles or you're going to be less likely to leave your--your stove on when you become age 70 or 80 or 90 or more likely if you will remember your medications, it's called transfer training. So there's a need for more perspective research studies in this area. And so, what we've done rather than building yet, another brain fitness game like everybody else is doing, we have built a web portal we called "Tangra". Tangra is the prodigal--prodigal Bulgarian God of wisdom and thunder. Velian Pandeliev, architect of it is of Bulgarian ancestry, we've built a web portal, that makes it possible to do studies about the effectiveness of such interventions on-line, so that, participants don't have to travel as in the case when Yaakov Stern at Columbia, ask people to do a study as he did recently, sometimes they have to travel up to two hours a day each way, across the greater New York area in order to sit there and play a game for an hour and a half a day. And they do that three times a week for 12 weeks. So we've built a portal, that let's you do this kind of studies on-line and their measure--their variety of measures of success in challenges still in this work that I'm not go on to because I don't--I don't really have time to cover it, but I'd be happy to answer questions if you have one. So, going back to esteem, so, one thing you want to do is you get old is you want to remain mentally fit. You want to still be able to do crossword puzzles, you wanted to be able to do lots of stuff. But, as important, our perhaps in some sense are more important--they are all important is being able to speak and being able to read. Okay, God, what can be more fundamental. And so, we have research going on, both directed to being able to speak can be able to read. So, let me talk to you about the work I'm being able to speak. And as I said, this work was partially supported by Google factory word "thank you", and has led to the formation of a startup company called "My Voice". So, the idea of My Voice is that, it's a help to speaking both in terms of helping you recall words and in terms of vocalizing them if your problem is a vocalization problem. And it does this--what's interesting about it, instead, it does it in two ways. It allows you to access words in semantic categories, but it also allows you to access words based on your location. Okay, so, if you we're to [INDISTINCT] to come up with words like "coffee, cream, double-double, ten bits, and it wouldn't come up with that if you're in front of a movie theater. Now, that's not to say that you might not sit in the movie theater, talking about the great ten bit you just had. But still, on the average, if you're going to order coffee, having the coffee-related words is going to be useful. And, so, we have built this, it works, it's elegant, it runs on both hi-phone and android platforms, it's shipping and it makes a lot of difference to people. The person we've worked with the most is a man named Bill Scarp, who's a stroke survivor. Had a stroke about 12 years ago, and he's been amazingly resourceful in terms of dealing with his disability. But what he used to do is walk around with a briefcase about as big as you see in the upper left with all those things in it, in fact a few more, that he didn't have when he took the picture. And now what he does is he carries--he carries his iPhone. So let me show you a little bit--a couple of minutes of this tape about My Voice, it's a pretty commercial--I mean it's not a research tape, it's a product tape, so--but you'll forget that--do the right thing. >> [VIDEO CLIP] >> It's an opportunity for him to share with others which he had difficulty doing before. >> Alicia is my daughter. Debbie is my son-in-law. >> The huge breakthrough that we had was to introduce web technology to communication aids. With an interactive website that enhances and customizes your communication aid, my voice is able to do incredible things like suggesting relevant vocabulary based on your current location. At the coffee shop, your personal coffee order is at your finger tips. At the movie theater, you'll get relevant words and phrases to make good conversation. >> You're going to love this movie. Jim Grant is dreaming. >> Simply drag and drop vocabulary from any web browser anywhere in the world. And with the bookshelf, users can add hide quality content in seconds. For instance, I'm into basketball, so I would want to add the basketball book to my vocabulary. >> You see, my voice seems to get a little... >> Okay, so how do we know that this is [INDISTINCT] well, something like seven thousand people have already not only downloaded it but signed up to use it. That's a good sign, although in truth we don't know yet in detail what those seven thousand people are doing and we're just in the process of designing a survey to do it. But, we've been doing some more in-depth testing in Toronto. So we finish this summer, field testing with children with special needs and I believe the politically correct phrase now is mild intellectual disabilities which include difficulties in speech and language acquisition, social language in behavior and expression of emotions. So we worked and this was Rochelle Campogado under the supervision of Professor Rondo Mchuin with about--a little over a dozen girls in one case and students of both genders in another case, ages 12 to 17. And we gave them MyVoice on iPhones and iPods for, in one case three months and another case one month. And we got very encouraging results, more social exchange, more collaborative problem solving, increasing of confidence ability of learned vocabulary, more socially appropriate discussion. And in the second school, a greater sense of community because the gap between students who were capable and students who really had serious problems seem to break down somewhat because of the technology. Now, this is a very small study, only--as I say, that number of students in two schools over a small amount of time but still very encouraging. The report--the feedback we get from people who work with special needs, teachers, is very very encouraging and very exciting. Our other primary initial mark--it is "Aphasia". An aphasia is a communication disorder in which people have trouble recalling words and, in some cases, articulating words that it's often caused by a stroke. And there are 1.3 million people in North America who suffer from aphasia and we're just in the process--we're about midway through of a very intense study with five individuals with aphasia, mostly stroke survivors in which we've given them MyVoice and we're really studying the extent to which they're able to use and then how this helps them with speech and communication, etc. We've also beckoned another piece of doctor research, this is the PhD work of Carrie Depmonds Ep, and it really responds to the notion that you can think about helping people speak because--like they've had a stroke or something like that, but there's another--there's another need where people need help in speaking and that's not a clinical population. That deals with levels of poor literacy in this country which is just staggering. The number of people who's literacy has tested those beyond middle school level is that, I think only 30 or 40 percent. It's very, very poor. And also, ESL is another problem so what carries to improve PhD's work is building a MyVoice--a system in the spirit of MyVoice, but [INDISTINCT] instead of having data types of English word and picture, has data types of English word, French word or whatever word and picture. The last area I want to talk about in terms of esteem is being able to read. And this, actually, and again thanks to Google, both the picture framework and this work are being supported with my current Google family org. We started out and--it was really--we we're looking at an iPad one day thinking about things that could--we could do with it, and we realize [INDISTINCT] you know, we could enlarge the type that was--you know, you didn't have to be a genius to figure that out. And we could also read a text aloud. But, we started thinking about a more integrated higher functioning A2 readings. So the first population we started thinking about was for people with poor vision and large print books and books on tape are pretty successful but they're not enough of them out there and they're expensive to produce and there ought to be a way to make larger quantities of text available given all that's happening with electronic publishing, Google's attempts to digitize lots of books; the internet archive, there are lots of players in the space. So the first idea was to unify the idea of the large print book and the talking book as an E-book. And, the ultimate technology became what we call Alt, the accessible large print listening and talking e-book. So the first L and the T are sort of the obvious things. The large print and the talking. But let me talk a little bit about accessibility and listening. So the idea of accessibility is that we realize that it's not just blind people or people with very poor vision who have trouble reading books. It's people who can't hold the books in their hand. It's people who can't turn the pages because their hands are tremoring or whatever. So we started thinking about accessibility and what we've been working on is a variety of methods to allow the Alt e-book to be controlled, not just by gesture which is sexy but not everybody can do it but by keyboard and, ultimately, by voice and things like that. But also, we're interested in the idea, and here's where the listening comes, the idea of collaborative reading. There was a very large survey done in England about five or six or so years ago, and people who were blind or partially sided with very poor vision were asked about a whole bunch of things about reading and their visual visibility. And one of the things that came out of that study was the fact that one half of blind individuals and one third of partially sided individuals have somebody read to them. I've called it collaborative reading. And so, all is designed to facilitate that, in that--if you're reading--as the original builder of this was Xavier Snelgrove in actually growing in 4th year undergraduate thesis. Xavier was in the habit of going to read to his now eighty year old grandmother who was a very cultured, scholarly literate woman whose ability to read kept going down as she became--as her vision got poorer and poorer. Now, she's totally blind. So the idea is as Xavier is reading to his grandmother, it will listen and record his voice. And there she then wants to read or someone else pick-up. She can read, play and hear part of the stuff being read in his voice and then when he hasn't--when there's a part that hasn't been recorded by him, it speaks in a computerized voice by way of access to some very interesting voices that's much better than--I don't know about the results about another language. I know that--and this is--I'm an expert on this research. The research is actually done in York University by Ellen Bialystok, with the collaboration of Fergus Craik in Baycrest. But, they basically have a number of studies that show cognitive advantages relatively laid in white, and differences between people who've had a bilingual education and people who have not. So--Okay, are we okay then; shall we go? Okay, all right. So, let me just show you the--an early version of the [INDISTINCT] in action. This video is pretty crude but. So, this is just enlarging the type and shrinking it. >> [VIDEO CLIP] >> BECKER: So, that's the... >> [VIDEO CLIP] >> BECKER: That's the terrible built in voice. Okay, now you see an the early version of our keyboard to help people who can't gesture. We got a much nicer version now. >> The gardener set his eldest son to watch, but about 12 o'clock he fell asleep and in the morning another of the apples was missing. Then, the second son was ordered to watch and at midnight he too fell asleep, and in the morning, another apple was gone. >> [VIDEO CLIP] >> The gardener set his eldest son to watch, but about 12 o'clock he fell asleep and in the morning another of the apples [INDISTINCT] Oh, it's pretty cold. >> BECKER: So, we're [INDISTINCT] we're getting some feedback somewhere--okay. We're working actively on this project. As I said we knocking beyond vision loss to things like MS, Parkinson's, and dementia, and we're working very hard on the issue of accessibility. There's some technical challenges associated with the listening feature. And, we just about have inner--working interfaces now to large categories of books, of which the two most interesting once are with Mr. Kail's internet archive, and the Google archive. The last area I want to talk about is the area of identity. And, as I said that's closest to self actualization we've gotten. As you develop Alzheimer's and the numbers in Canada, I think, are around 400,000 people right now which is supposed to grow to 3/4 of a million by another twenty years from now. It impacts your memory, it affects your identity, it affects your executive function. It--there's a huge caregiver burden, enormous toll on families and increasingly, you and your family members find it hard to remember and re-experience what you were like before you developed the Alzheimer's. So, I was talking about this to Elsa Marziali who is a social work prof at [INDISTINCT] social work in Baycrest at about seven years ago. And, she had done a little project in which she had made 10 minute video giving some highlights of someone's life and showed it to the--that individual and the family members, and it seemed to be well received. So, we constructed a research project which we got funded by the Alzheimer's association to create digital life histories of people, to aid reminiscing about what life was like before Alzheimer's. And, we eventually produced DVDs that represented the products of that. So, what we did is, we worked with 12 participants half with Alzheimer's and half with mild cognitive impairment ranging in ages from 60 to 94. There was a lot of time spent in deciding "What was the story? What did you want to communicate in?" okay. Would these people weren't lucky enough to be like Scarlett O'hara to have a film--a three hour long film, one with a wind telling the story of their life. But, the question was, what could somebody say in a half an hour our 45 minutes. In eight cases, the story was actually constructed and written, the biography as it were, by family members: adult, children, or spouses. In four of cases, four of people with mild cognitive impairment, they actually wrote their own story, it was a autobiography. So, we produced these autobiographies, typical over a period of three to six months. We then showed it to them, sort of a world premier, we requested that they be viewed regularly over six months. We went back at three months and six months and video taped them watching either by themselves or with family members, the story of their life. Did lots of interviews, coded, transcribed, coded, and what did we learn? Well, we learned that in fact, it stimulated reminiscence. It enabled people to soak up the memories, to have the feeling of what their life was like 10 years ago, 20 years ago, 30 years ago. And, primarily that feeling, those remembrances were enjoyable--not always. Sometimes you'd see a video--you'd see in the video someone who had passed away, and that would give you a moment of pain. But, in general, and we counted these, there were fifteen times as many moments of enjoyment, than moments of sadness. Let me show you a couple examples. This woman was brought to Canada from South Africa about six years ago before this was shot. She was 91 at that time, mid-stage Alzheimer's and she's watching a bit about the story of her life, most of which was--most of which was her early life in South Africa. >> [VIDEO CLIP] >> BECKER: So she remembers names, places, people. But, also, she remembers feelings. "It was very good to live there." But what we've discovered is that even more powerful than someone watching this themselves is watching it with family members. So, here you see Ms. Zed [SP] who was 85 mid-stage Alzheimer's and her daughter watching--this is a very small portion of a much longer piece--watching the video. And, you'll see several things with very quick cuts. Because this was edited in a little too tightly. And you'll here the daughter both interacting with her mom, and as the narrator of the story of her mom's life. >> [VIDEO CLIP] >> BECKER: So, it's the interaction with families, the preservation of identity, the feeling of connectedness, the legacy for family that--is every important for this, not just as a tool to stimulate, recall, and reminisce into the people with Alzheimer's. And what is interesting is this also is relevant to third party caregivers. In ten of cases, the people lived at home, and two of the cases, they live in a long term care facility, and in both cases, some of the caregivers saw the videos and appreciated that, and now I hope it's not just woman in the 17th door--20 doors along this corridor, they're all between 80 and 90m half of them are Holocaust survivor, but, oh, it's a woman from South Africa who's passion was lawn bowl. Okay. So this was very powerful. So, the results were to have been published were very positive in terms of enjoyment, enhancing, reminiscing, stimulating family conversation and connectedness, but even--well, not even more important but as important, we developed an approach to this that is practical, it's not without a cost which you don't need to do the--you don't need what--forget Fleming, I think was the--was the director of "Gone with the Wind", you don't need something of that scale. You could do this with a college student or even a high school student who has some facility with computers and desktop video as long as there are some adult around to mediate the issues that sometimes come up, which is what is the story. What should we include, what should we not include because they're often are disputes. And in theory, this should all become easier in the next 10, 20, 30, 40 years as more of the resources are in digital form. Although I'm not convinced that they'll be any easier to find than they are now in people's shoe boxes. There's another project that I don't have really time to discuss in which we ask the question, what can we do in terms of helping people remember not their entire life but what they did yesterday, the trip to the zoo? And so we did a study with an experimental camera called the Microsoft SenseCam. It's now available commercially from a British company called Vicon Review, and, again, I don't have time to go into it because we're already getting late. But we have in this study which we're just in the process of submitting for publication, added to a growing body of evidence that says if you have difficulty forming new episodic memories, in other word, recollections of what you just did, if you see a series of pictures that represent snapshots of what you just did and you view that a few times, you will be able to remember that for some period of time. And this has been--there's a number--about a dozen studies now of this--working with people with anterograde amnesia and also with Alzheimer's. So I'll skip over this. So in summary, we've worked and others have worked with a huge variety of technologies ranging from the weed to smart homes to digital pictures frame to context sense of the mobile apps, E-box, and collectively, the people who are doing this are helping with needs ranging from understanding you health to keeping physically fit to staying connected with family and friend to helping you speak and read, preserve your identity. Another project--I'll just mention two of other project, one nearing completion, my Ph.D student Mike Massimi, has pioneered something called Thanatosensitive Design. Thanatos is the Greek god of death, I did not know that several years ago, and Thanatosensitive Design is the design of technologies that in some sense respond to the fact that we are going to die scenario that has not been much explored in computer science. Mike's helping to pave the way for this he is just in the process of the final study in his research designing and evaluating a web portal which he calls Besupp, Bereavement Support, to help individuals who are grieving. And the last piece of work, and I'm not sure if there's anyone here in Waterloo to discuss this with, because I think most of the effort Google Plus is in MapView. But we're starting a Ph.D. thesis called the Family Quilt Project that's trying to do for families what Facebook does for so-called friends and what Linkedln does for professional collaborators of the people who you hope will hire you or whatever. And so--and this--we're doing this because things like Facebook do not serve families very well. Grandparents, for the most part, don't want to use it, young children are forbidden to participate, and there are lots of issues, and I think this might be of interest to discuss with Google because, in fact, Google Plus has this concept of circles and one of the circles is a family circle and [INDISTINCT] believes that some of his work may be irrelevant to this. So what have we learned? We've learned that the work is very, very difficult. We--some of these studies take three or four years. Many of our participants are not available when we need them. Sometimes they even pass away during the study and they pass away shortly after the study, which is very, very discouraging. It's highly multi-disciplinary involving a whole mix of mix of disciplines. And above all, it's not what I thought it was when I started at 10 years ago. I thought it was about cognitive prosthetics, crutches for the individual human mind. And it's not about that. It's as much about supporting family and community and caregivers and clinicians as it is about the individuals, and is much about supporting communication and identity and efficacy and self-worth as it is about memory and cognition. We're thankful for a number of sources of support including, as I have said, Google Research, and thank you for your attention and I'm happy to take some questions and comments [INDISTINCT]. Thank you.

Conceptual and practical applications

Historically, design and research in the computer sciences has rarely considered the issues pursuant to the death of the user. However, Lindley et al. note, "[s]hifts in the field of HCI (Human-Computer Interaction) coupled with the growing maturity of interactive technologies is leading researchers and designers to consider issues relating to mortality."[2] The proliferation of digitally mediated (and often password-protected) personal data and online identities, as well as biometrical practices, "routinely assume a living body for access",[1] which makes access to data following death increasingly problematic for individuals and relatives, as well as institutions and corporations, that may have claims to or stakes in such materials. A 2004 news story describes how Yahoo! denied the family of Justin Ellsworth, a deceased US marine, access to his email, preventing them from accessing information necessary for handling the aftermath of the account owner's death.[3] Determining how digital information and artefacts "can be bequeathed, inherited, and appropriately repurposed"[4] while accounting for the complexity of privacy concerns presents a new horizon of human-computer interaction research. "At a fundamental level, such issues are becoming increasingly prominent as technology companies decide how to handle email accounts or webpages belonging to people who are now deceased."[2] Recent scholarship in this area has called for the development of more purposive applications for facilitating the inheritance of digital materials.[5]

Moreover, the ways in which people use technology in practices concerning mortality, dying, and death are areas of HCI research that have historically received little attention.[6] Although technological artefacts that address issues of the end of life are increasingly common (e.g. online memorials), academic research in this area is at an early stage. Such "thanatechnologies"[7] seek to meet numerous needs, including memorialisation, bereavement support and communication, archiving, access to information and resources, and so on. While many thanatechnologies exist, relatively few are the product of a thanatosensitive design process; rather, they are appropriations of general purpose technologies. For example, forum management software is not explicitly concerned with the mortality of its users; however, online forums are a common place for the bereaved to communicate regarding loss in the form of formal and (more commonly) informal online memorials.[8] Additionally, 3D virtual worlds are beginning to be explored as spaces for informal memorialization.[9]

References

  1. ^ a b c Massimi, Michael; Andrea Charise (2009). "Dying, death, and mortality". CHI '09 Extended Abstracts on Human Factors in Computing Systems. pp. 2459–2468. doi:10.1145/1520340.1520349. ISBN 9781605582474. S2CID 14069413.{{cite book}}: CS1 maint: date and year (link)
  2. ^ a b Lindley, Siân E.; Eduardo H. Calvillo Gámez; Juan José Gámez Leija (April 2010). "Remembering rituals of remembrance: Capturing Xantolo through SenseCam". CHI 2010 Workshop on HCI at the End of Life.
  3. ^ "Yahoo denies family access to dead marine's e-mail". CNET News. December 21, 2004.
  4. ^ Wendy Moncur; Annalu Waller (2010). "Digital Inheritance". RCUK Digital Futures 2010. {{cite journal}}: Cite journal requires |journal= (help)
  5. ^ Wiley, Cyndi; Wang, Yun; Musselman, Ryan; Krumm, Beverly; Stephanidis, Constantine (2011). "Connecting Generations: Preserving Memories with Thanatosensitive Technologies". In Constantine Stephanidis (ed.). HCI International 2011 – Posters' Extended Abstracts. Berlin, Heidelberg: Springer-Verlag Berlin Heidelberg. pp. 474–478. doi:10.1007/978-3-642-22098-2_95. ISBN 978-3-642-22098-2.
  6. ^ "HCI at the end of life: Understanding death, dying, and the digital" (PDF). Proc. CHI 2010 Extended Abstracts, 4477-4480.
  7. ^ Carla Sofka; Kathleen Gilbert; Illene Noppe (2012). Thanatechnology: Dying, Death, and Grief in an Online Universe. Springer Publishing Company. ISBN 978-0-8261-0732-9.
  8. ^ Jed Brubaker; Janet Vertesi. "Death and the Social Network". Paper presented at the CHI 2010 workshop HCI at the End of Life. Archived from the original on 2012-07-04. Retrieved 2017-10-31. {{cite journal}}: Cite journal requires |journal= (help)
  9. ^ Braman, James; Dudley, Alfreda; Vincenti, Giovanni (2011). "Death, Social Networks and Virtual Worlds: A Look into the Digital Afterlife". 2011 Ninth International Conference on Software Engineering Research, Management and Applications. pp. 186–192. doi:10.1109/SERA.2011.35. ISBN 978-1-4577-1028-5. S2CID 11685020.

External links

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