WEBVTT 00:00:00.000 --> 00:00:01.083 align:center BRIANNA BLASER: Excellent. 00:00:01.083 --> 00:00:04.440 align:center So thanks for joining us today to talk about technology 00:00:04.440 --> 00:00:05.710 align:center and chronic illness. 00:00:05.710 --> 00:00:07.890 align:center I was really excited this past fall when 00:00:07.890 --> 00:00:10.530 align:center I saw that there was a paper at Assets 00:00:10.530 --> 00:00:13.050 align:center and then McDonnell and Kelly Mack who are joining us today 00:00:13.050 --> 00:00:15.412 align:center and two other coauthors wrote about this. 00:00:15.412 --> 00:00:17.370 align:center And I watched their video and I was so excited. 00:00:17.370 --> 00:00:19.570 align:center And I said, I want to continue this conversation. 00:00:19.570 --> 00:00:22.320 align:center So I'm so happy that they agreed to join us today 00:00:22.320 --> 00:00:23.430 align:center for this conversation. 00:00:23.430 --> 00:00:26.550 align:center And we have two panelists who will be joining us today 00:00:26.550 --> 00:00:29.760 align:center as well, Litany Lineberry, excuse me, 00:00:29.760 --> 00:00:32.280 align:center from Mississippi State and Sarah Coppola 00:00:32.280 --> 00:00:34.380 align:center from University of Washington. 00:00:34.380 --> 00:00:36.400 align:center And we'll talk about that. 00:00:36.400 --> 00:00:39.540 align:center So without further ado, I'm going to turn it over 00:00:39.540 --> 00:00:41.250 align:center to Emma and Kelly. 00:00:41.250 --> 00:00:44.340 align:center And throughout you can ask questions in the chat 00:00:44.340 --> 00:00:46.350 align:center and during the panel to raise your hand if you 00:00:46.350 --> 00:00:47.470 align:center want when we get there. 00:00:47.470 --> 00:00:51.375 align:center So I'm going to stop talking and turn it over to you all. 00:00:51.375 --> 00:00:53.625 align:center KELLY MACK: All right, let me get these slides shared. 00:00:59.430 --> 00:01:02.075 align:center Do things look like the start of a presentation? 00:01:02.075 --> 00:01:03.450 align:center BRIANNA BLASER: It looks perfect. 00:01:03.450 --> 00:01:04.560 align:center KELLY MACK: Awesome. 00:01:04.560 --> 00:01:05.069 align:center All right. 00:01:05.069 --> 00:01:07.120 align:center Thanks so much, everybody, for joining today. 00:01:07.120 --> 00:01:09.322 align:center My name is Kelly Mack. 00:01:09.322 --> 00:01:10.780 align:center EMMA MCDONNELL: I'm Emma McDonnell. 00:01:10.780 --> 00:01:13.030 align:center KELLY MACK: And with our co-authors Leah Findlater 00:01:13.030 --> 00:01:16.090 align:center and Heather Evans from our University of Washington here. 00:01:16.090 --> 00:01:18.760 align:center We wrote a paper titled Chronically Under-Addressed: 00:01:18.760 --> 00:01:21.940 align:center Considerations for HCI Accessibility Practice 00:01:21.940 --> 00:01:23.500 align:center with Chronically Ill People. 00:01:23.500 --> 00:01:27.220 align:center This is a paper that appeared at the Assets 23 conference, which 00:01:27.220 --> 00:01:29.320 align:center is a big computer science conference focused 00:01:29.320 --> 00:01:30.820 align:center on accessible computing. 00:01:30.820 --> 00:01:33.100 align:center And it was nominated for best paper. 00:01:33.100 --> 00:01:36.445 align:center And so we're really excited to share this work with you today. 00:01:36.445 --> 00:01:37.320 align:center EMMA MCDONNELL: Yeah. 00:01:37.320 --> 00:01:39.900 align:center And we're going to begin with our motivation. 00:01:39.900 --> 00:01:43.690 align:center Globally, billions of people have a chronic illness, 00:01:43.690 --> 00:01:47.910 align:center which we define as one that isn't expected to go away, 00:01:47.910 --> 00:01:53.110 align:center likely will not be fatal, but does cause disruptive symptoms. 00:01:53.110 --> 00:01:57.460 align:center While HCI, or human computer interactions, health research 00:01:57.460 --> 00:01:59.650 align:center has explored the medical technology 00:01:59.650 --> 00:02:03.460 align:center needs of chronically ill people, HCI accessibility 00:02:03.460 --> 00:02:06.100 align:center has not yet broadly integrated chronic illness 00:02:06.100 --> 00:02:07.900 align:center into our research focus. 00:02:07.900 --> 00:02:11.290 align:center And so in this paper we articulate an opportunity 00:02:11.290 --> 00:02:14.170 align:center for future HCI accessibility research 00:02:14.170 --> 00:02:18.333 align:center to work with and support chronically ill people. 00:02:18.333 --> 00:02:20.000 align:center KELLY MACK: And through this motivation, 00:02:20.000 --> 00:02:21.850 align:center we arrived at our research question, which 00:02:21.850 --> 00:02:23.770 align:center is what would it look like to include 00:02:23.770 --> 00:02:27.550 align:center chronically ill people within HCI accessibility research? 00:02:27.550 --> 00:02:29.980 align:center And to understand this question, we 00:02:29.980 --> 00:02:32.140 align:center ended up developing three tenants that 00:02:32.140 --> 00:02:34.510 align:center are core for designing technology for people 00:02:34.510 --> 00:02:35.800 align:center with chronic illnesses. 00:02:35.800 --> 00:02:39.310 align:center We then applied how these tenets can be a useful lens 00:02:39.310 --> 00:02:42.040 align:center to understand chronically ill people's technology 00:02:42.040 --> 00:02:44.440 align:center use through three case studies of Emma 00:02:44.440 --> 00:02:46.720 align:center and my own experiences with technology, 00:02:46.720 --> 00:02:48.560 align:center as two chronically ill people. 00:02:48.560 --> 00:02:50.230 align:center And then finally through this process 00:02:50.230 --> 00:02:53.650 align:center we ended up developing a kind of a useful framing, which 00:02:53.650 --> 00:02:56.103 align:center we call consequence-based accessibility, which 00:02:56.103 --> 00:02:58.270 align:center is a way of looking at accessibility for chronically 00:02:58.270 --> 00:03:02.805 align:center ill folks, which we'll go in more detail into later. 00:03:02.805 --> 00:03:03.680 align:center EMMA MCDONNELL: Yeah. 00:03:03.680 --> 00:03:06.170 align:center And we're going to begin by outlining our tenants. 00:03:06.170 --> 00:03:08.870 align:center Our first tenant is beyond patients. 00:03:08.870 --> 00:03:12.770 align:center We must view people with chronic illnesses as more than medical 00:03:12.770 --> 00:03:16.310 align:center patients, but rather as people with valuable expertise 00:03:16.310 --> 00:03:20.000 align:center and non-medical access needs. 00:03:20.000 --> 00:03:23.090 align:center A narrow medical focus of our research 00:03:23.090 --> 00:03:26.150 align:center misses the majority of chronically ill people's lives. 00:03:26.150 --> 00:03:28.160 align:center I don't live at my doctor's office, 00:03:28.160 --> 00:03:31.310 align:center but that is what we focus on when we build technology 00:03:31.310 --> 00:03:34.160 align:center primarily with a health focus. 00:03:34.160 --> 00:03:36.710 align:center Additionally, many chronically ill people 00:03:36.710 --> 00:03:39.200 align:center experience trauma and disbelief at the hands 00:03:39.200 --> 00:03:40.740 align:center of our medical providers. 00:03:40.740 --> 00:03:43.610 align:center So a project that is begun in collaboration 00:03:43.610 --> 00:03:46.400 align:center with medical providers might miss the perspective 00:03:46.400 --> 00:03:47.960 align:center of many chronically ill people who 00:03:47.960 --> 00:03:50.750 align:center have no interest in further subjecting themselves 00:03:50.750 --> 00:03:53.620 align:center to collaborating with doctors. 00:03:53.620 --> 00:03:56.960 align:center Yet, in spaces that chronically ill people create, 00:03:56.960 --> 00:03:59.500 align:center such as social media communities, 00:03:59.500 --> 00:04:02.500 align:center extensive expertise is clear. 00:04:02.500 --> 00:04:05.830 align:center Chronically ill people share our experiences and ways 00:04:05.830 --> 00:04:08.890 align:center of navigating the world online and offline 00:04:08.890 --> 00:04:11.200 align:center in community driven spaces. 00:04:11.200 --> 00:04:14.170 align:center Figuring out ways to create access 00:04:14.170 --> 00:04:16.630 align:center in a system that does not prioritize 00:04:16.630 --> 00:04:20.230 align:center chronically ill people's medical care or non-medical access 00:04:20.230 --> 00:04:20.890 align:center needs. 00:04:20.890 --> 00:04:22.930 align:center And we see this as an opportunity 00:04:22.930 --> 00:04:26.650 align:center for HCI accessibility to bring its capacity 00:04:26.650 --> 00:04:30.520 align:center to engage disabled folks as stakeholders 00:04:30.520 --> 00:04:33.070 align:center without a necessary medical framing 00:04:33.070 --> 00:04:36.700 align:center in order to address non-medical access needs. 00:04:36.700 --> 00:04:39.250 align:center We are the prime candidates for the kind of support 00:04:39.250 --> 00:04:42.817 align:center that HCI accessibility can create. 00:04:42.817 --> 00:04:43.650 align:center KELLY MACK: Awesome. 00:04:43.650 --> 00:04:46.830 align:center Our second tenant is what we call variability of ability. 00:04:46.830 --> 00:04:49.200 align:center And this relies on the principle that chronic illness 00:04:49.200 --> 00:04:52.410 align:center can cause high variability in people's abilities, which 00:04:52.410 --> 00:04:54.810 align:center is crucial to consider when designing technology 00:04:54.810 --> 00:04:57.550 align:center to meet chronically ill people's access needs. 00:04:57.550 --> 00:05:00.600 align:center So at its core, this tenant is just talking about the fact 00:05:00.600 --> 00:05:03.330 align:center that everybody is different. 00:05:03.330 --> 00:05:06.000 align:center Two people who have the same medical diagnosis 00:05:06.000 --> 00:05:09.360 align:center could have great variety in how their symptoms are expressed 00:05:09.360 --> 00:05:11.130 align:center in their bodies and the experiences 00:05:11.130 --> 00:05:12.780 align:center that they've had with those symptoms, 00:05:12.780 --> 00:05:16.320 align:center but even within a single person people's abilities can 00:05:16.320 --> 00:05:18.090 align:center fluctuate so widely. 00:05:18.090 --> 00:05:21.660 align:center And in the paper we name two different types of variation 00:05:21.660 --> 00:05:23.820 align:center to consider when designing this technology. 00:05:23.820 --> 00:05:26.520 align:center There's baseline changes to ability or baseline 00:05:26.520 --> 00:05:27.520 align:center variability. 00:05:27.520 --> 00:05:30.360 align:center And as an example of this, you could imagine 00:05:30.360 --> 00:05:31.770 align:center somebody who's having a flare. 00:05:31.770 --> 00:05:34.110 align:center There's a lot of chronic illnesses 00:05:34.110 --> 00:05:37.920 align:center where it kind of follows a pattern of periods where 00:05:37.920 --> 00:05:40.860 align:center of onset of symptoms and very strong ways and then 00:05:40.860 --> 00:05:43.120 align:center it lessens and it kind of ebbs and flows. 00:05:43.120 --> 00:05:45.630 align:center So there could be days where the baseline variability 00:05:45.630 --> 00:05:47.370 align:center of your abilities is high. 00:05:47.370 --> 00:05:49.620 align:center And you wake up having way less ability 00:05:49.620 --> 00:05:51.510 align:center to do things than usual because you 00:05:51.510 --> 00:05:54.810 align:center have high fatigue, high pain levels, high nausea, things 00:05:54.810 --> 00:05:56.410 align:center like that. 00:05:56.410 --> 00:05:59.820 align:center At the same time, on a even shorter time scale 00:05:59.820 --> 00:06:02.190 align:center we can think about action determined variability. 00:06:02.190 --> 00:06:04.020 align:center And what we're referring to here is 00:06:04.020 --> 00:06:06.840 align:center the fact that a lot of chronically ill people 00:06:06.840 --> 00:06:09.510 align:center when they take an action, they might end up 00:06:09.510 --> 00:06:13.200 align:center with a very drastically different set of abilities 00:06:13.200 --> 00:06:16.660 align:center after performing the task than before they performed the task. 00:06:16.660 --> 00:06:19.590 align:center So one example that's kind of infamous within the chronically 00:06:19.590 --> 00:06:21.630 align:center ill community is showering. 00:06:21.630 --> 00:06:23.820 align:center So for people who aren't chronically ill, 00:06:23.820 --> 00:06:27.150 align:center you might take a shower and feel refreshed or relaxed 00:06:27.150 --> 00:06:28.050 align:center afterwards. 00:06:28.050 --> 00:06:30.210 align:center When for a lot of chronically ill folks 00:06:30.210 --> 00:06:32.490 align:center when they might be fine before showering, 00:06:32.490 --> 00:06:36.600 align:center after showering their symptoms are oftentimes much more severe 00:06:36.600 --> 00:06:37.620 align:center and significant. 00:06:37.620 --> 00:06:41.560 align:center For example, being dizzy or fatigued or things like that. 00:06:41.560 --> 00:06:44.970 align:center So consequently you have to develop technology 00:06:44.970 --> 00:06:46.800 align:center with adaptability in mind when you're 00:06:46.800 --> 00:06:49.710 align:center catering to these constantly fluctuating abilities, 00:06:49.710 --> 00:06:52.800 align:center either on a day to day basis or even hour to hour, 00:06:52.800 --> 00:06:54.135 align:center minute to minute kind of basis. 00:06:56.880 --> 00:06:59.670 align:center EMMA MCDONNELL: Our third tenant is include the body. 00:06:59.670 --> 00:07:01.770 align:center Research with people with chronic illnesses 00:07:01.770 --> 00:07:04.650 align:center must be done using a model of disability 00:07:04.650 --> 00:07:07.470 align:center that accounts for both the physiological and 00:07:07.470 --> 00:07:10.350 align:center sociopolitical barriers they face. 00:07:10.350 --> 00:07:13.320 align:center Kelly and I both come at these questions with the disability 00:07:13.320 --> 00:07:16.080 align:center studies background, as does one of our co-authors, Heather 00:07:16.080 --> 00:07:19.200 align:center Evans, who is primarily a disability studies scholar. 00:07:19.200 --> 00:07:20.940 align:center And this is where we're drawing a lot 00:07:20.940 --> 00:07:23.370 align:center of our theoretical perspectives from. 00:07:23.370 --> 00:07:25.950 align:center But disability studies historically 00:07:25.950 --> 00:07:28.620 align:center has two dominant paradigms to explain 00:07:28.620 --> 00:07:31.920 align:center how people conceptualize disability, the social 00:07:31.920 --> 00:07:33.270 align:center and the medical model. 00:07:33.270 --> 00:07:35.730 align:center Under a medical model, somebody's body 00:07:35.730 --> 00:07:38.220 align:center is broken and needs fixing. 00:07:38.220 --> 00:07:41.160 align:center And therefore it's the job of doctors and technologies 00:07:41.160 --> 00:07:44.610 align:center to make that person's body more normal. 00:07:44.610 --> 00:07:46.950 align:center Under a social model of disability, 00:07:46.950 --> 00:07:50.400 align:center disability is a natural facet of human diversity. 00:07:50.400 --> 00:07:53.070 align:center And when disabled people can't access the world, 00:07:53.070 --> 00:07:55.200 align:center it's because the world was not built 00:07:55.200 --> 00:07:58.830 align:center with sufficient anticipation of all the kinds of bodies 00:07:58.830 --> 00:08:00.660 align:center that can exist. 00:08:00.660 --> 00:08:02.700 align:center These have been really useful tools 00:08:02.700 --> 00:08:05.460 align:center for shaping conversations and moving towards a more political 00:08:05.460 --> 00:08:07.440 align:center understanding of disability. 00:08:07.440 --> 00:08:11.100 align:center But this duality doesn't fully explain the experience 00:08:11.100 --> 00:08:12.360 align:center of chronic illness. 00:08:12.360 --> 00:08:15.030 align:center For someone who's experiencing chronic pain, 00:08:15.030 --> 00:08:19.530 align:center no amount of social access of infrastructural access 00:08:19.530 --> 00:08:22.230 align:center is going to eliminate the pain at its core. 00:08:22.230 --> 00:08:24.150 align:center But they might not want to revert fully 00:08:24.150 --> 00:08:27.330 align:center to a medical model view of seeing themselves as broken 00:08:27.330 --> 00:08:31.830 align:center and only in need of fixing and not in need of accommodating. 00:08:31.830 --> 00:08:34.740 align:center There are other theorists within disability studies. 00:08:34.740 --> 00:08:36.840 align:center Alison Kafer and Tobin Siebers are two 00:08:36.840 --> 00:08:39.240 align:center that we draw upon, who provide frameworks 00:08:39.240 --> 00:08:42.150 align:center to understand the ways that bodily and societal 00:08:42.150 --> 00:08:43.710 align:center factors interact. 00:08:43.710 --> 00:08:45.450 align:center So this is obviously relevant if you're 00:08:45.450 --> 00:08:47.940 align:center thinking about chronic illness in a disability studies 00:08:47.940 --> 00:08:52.080 align:center perspective, but it's important in an HCI context as well. 00:08:52.080 --> 00:08:55.230 align:center Because HCI has taken on some social and medical model 00:08:55.230 --> 00:08:58.620 align:center framings to guide our work in the last decade. 00:08:58.620 --> 00:09:02.970 align:center And as a result, don't always see ways that HCI accessibility 00:09:02.970 --> 00:09:05.700 align:center might be relevant to people with medical needs 00:09:05.700 --> 00:09:08.190 align:center that they do want to address. 00:09:08.190 --> 00:09:10.470 align:center To work with chronically ill people, 00:09:10.470 --> 00:09:14.160 align:center it's important to pay attention to people's bodily realities 00:09:14.160 --> 00:09:16.710 align:center alongside social discrimination. 00:09:16.710 --> 00:09:21.073 align:center So to do this work, we need to be able to do both. 00:09:21.073 --> 00:09:21.990 align:center KELLY MACK: All right. 00:09:21.990 --> 00:09:23.532 align:center And so now we're going to shift a bit 00:09:23.532 --> 00:09:26.040 align:center and talk about some case studies that apply these tenets. 00:09:26.040 --> 00:09:28.380 align:center So in our paper, we present three case studies 00:09:28.380 --> 00:09:30.570 align:center around how technology and chronic illness 00:09:30.570 --> 00:09:33.420 align:center intersect in our lives and how our three tenets can 00:09:33.420 --> 00:09:36.420 align:center be applied to these real world examples to help make meaning. 00:09:36.420 --> 00:09:39.090 align:center You can learn more about how technology supported 00:09:39.090 --> 00:09:41.280 align:center remote work, grants us access in our paper, 00:09:41.280 --> 00:09:43.650 align:center but today we're going to cover our experience accessibly 00:09:43.650 --> 00:09:46.920 align:center sharing and consuming tech TikToks and hacking text 00:09:46.920 --> 00:09:49.200 align:center to speech technology to make graduate school more 00:09:49.200 --> 00:09:51.780 align:center accessible for ourselves. 00:09:51.780 --> 00:09:54.720 align:center All right, so to start a bit of context, 00:09:54.720 --> 00:09:57.750 align:center I have very high motion sensitivity, which 00:09:57.750 --> 00:09:59.910 align:center gets triggered in videos a lot. 00:09:59.910 --> 00:10:03.120 align:center And specifically in how most TikToks 00:10:03.120 --> 00:10:04.740 align:center are filmed and shared these days. 00:10:04.740 --> 00:10:06.870 align:center It's often someone taking their phone 00:10:06.870 --> 00:10:09.360 align:center and walking around with it and shaking it. 00:10:09.360 --> 00:10:12.900 align:center And that kind of shaky, like non-tripod and camerawork 00:10:12.900 --> 00:10:15.540 align:center can make me really nauseous really quickly. 00:10:15.540 --> 00:10:18.030 align:center Consequently, I have to be very careful 00:10:18.030 --> 00:10:21.840 align:center and oftentimes don't use TikTok because so many of the videos 00:10:21.840 --> 00:10:22.538 align:center are triggering. 00:10:22.538 --> 00:10:25.080 align:center And I can't predict if they're going to be triggering or not. 00:10:25.080 --> 00:10:26.760 align:center I just kind of have to look at it 00:10:26.760 --> 00:10:29.020 align:center and see if it starts making me sick or not. 00:10:29.020 --> 00:10:31.890 align:center So consequently, I often don't use a lot of TikTok 00:10:31.890 --> 00:10:34.770 align:center despite there being a lot of content on that platform that 00:10:34.770 --> 00:10:37.180 align:center would be interesting to me. 00:10:37.180 --> 00:10:40.480 align:center EMMA MCDONNELL: And I do not have any particular motion 00:10:40.480 --> 00:10:43.510 align:center sensitivities that impact my ability to view TikTok 00:10:43.510 --> 00:10:47.350 align:center but Kelly and I are good friends and I like sharing videos 00:10:47.350 --> 00:10:49.900 align:center with the people who I am good friends with. 00:10:49.900 --> 00:10:53.090 align:center And Kelly and I over time developed 00:10:53.090 --> 00:10:56.980 align:center the process where when I send a TikTok to her before, 00:10:56.980 --> 00:11:00.130 align:center I send it, or any form of video content, 00:11:00.130 --> 00:11:02.380 align:center I provide a motion description. 00:11:02.380 --> 00:11:04.930 align:center Often this involves me primarily sending 00:11:04.930 --> 00:11:08.650 align:center TikToks that are steady, with a guarantee in advance 00:11:08.650 --> 00:11:10.060 align:center that this is a steady camera. 00:11:10.060 --> 00:11:11.230 align:center It's all tripod. 00:11:11.230 --> 00:11:12.790 align:center But if I wanted to send something 00:11:12.790 --> 00:11:16.240 align:center that was mostly steady, I might provide a description. 00:11:16.240 --> 00:11:19.750 align:center Suggesting that after someone says, "and then 00:11:19.750 --> 00:11:22.300 align:center I got my coffee" the video would be steadied. 00:11:22.300 --> 00:11:25.690 align:center Or that while the camera is moving the whole time, 00:11:25.690 --> 00:11:28.120 align:center the entire point of the video is the audio 00:11:28.120 --> 00:11:30.760 align:center and that motion is just to keep someone listening. 00:11:30.760 --> 00:11:33.160 align:center So Kelly could safely consume this TikTok 00:11:33.160 --> 00:11:35.470 align:center if she didn't look at it and just listen to it. 00:11:35.470 --> 00:11:37.420 align:center Getting the equivalent experience 00:11:37.420 --> 00:11:41.920 align:center of enjoying that content without getting herself sick. 00:11:41.920 --> 00:11:43.750 align:center KELLY MACK: And so when Emma does send me 00:11:43.750 --> 00:11:46.870 align:center some of these TikToks with these descriptions, 00:11:46.870 --> 00:11:49.780 align:center I then choose if and when I want to consume the TikTok. 00:11:49.780 --> 00:11:51.913 align:center Because occasionally Emma will send something 00:11:51.913 --> 00:11:53.830 align:center with a bit more motion, because it's something 00:11:53.830 --> 00:11:55.330 align:center that she knows I really like. 00:11:55.330 --> 00:11:57.495 align:center For example, I really love dancing. 00:11:57.495 --> 00:11:59.620 align:center And so sometimes she'll send me a dance video where 00:11:59.620 --> 00:12:02.320 align:center it's like, OK, the camera does pan a bit 00:12:02.320 --> 00:12:06.170 align:center and it's a little bit motion-y but it's really cool 00:12:06.170 --> 00:12:07.670 align:center and I think you're going to like it. 00:12:07.670 --> 00:12:10.570 align:center So when I get a message like that where it's like, OK, 00:12:10.570 --> 00:12:11.890 align:center this might trigger my symptoms. 00:12:11.890 --> 00:12:15.700 align:center I have to do some math around if and when I want to consume it. 00:12:15.700 --> 00:12:18.220 align:center Maybe I'll consume it at the end of my day right 00:12:18.220 --> 00:12:20.440 align:center before going to bed so if it makes me sick 00:12:20.440 --> 00:12:23.230 align:center at least I know that I don't have anything to do afterwards. 00:12:23.230 --> 00:12:26.320 align:center Or maybe I decide that actually I'm so nauseous right now 00:12:26.320 --> 00:12:29.810 align:center I can't risk getting any more stimulated than I currently am. 00:12:29.810 --> 00:12:31.810 align:center And so I'll choose not to watch it or watch it 00:12:31.810 --> 00:12:33.868 align:center on a different day. 00:12:33.868 --> 00:12:35.910 align:center EMMA MCDONNELL: And this is an imperfect process. 00:12:35.910 --> 00:12:38.520 align:center I sent Kelly an inaccessible TikTok last night 00:12:38.520 --> 00:12:41.640 align:center without a good enough motion description. 00:12:41.640 --> 00:12:44.730 align:center But we get it right a lot of the time 00:12:44.730 --> 00:12:48.240 align:center through conversation, feedback, and paying attention 00:12:48.240 --> 00:12:50.427 align:center to what works. 00:12:50.427 --> 00:12:51.260 align:center KELLY MACK: Exactly. 00:12:51.260 --> 00:12:54.350 align:center So now thinking about how we can look at this experience 00:12:54.350 --> 00:12:56.330 align:center through the lens of our three tenets. 00:12:56.330 --> 00:12:58.760 align:center To begin with beyond patients, we 00:12:58.760 --> 00:13:01.070 align:center see that we really are considering 00:13:01.070 --> 00:13:04.100 align:center people with chronic illnesses beyond a patient framing. 00:13:04.100 --> 00:13:05.990 align:center For example, we're not considering 00:13:05.990 --> 00:13:08.960 align:center how they access medical care or even work, 00:13:08.960 --> 00:13:11.120 align:center but recognize that people with chronic illnesses 00:13:11.120 --> 00:13:13.580 align:center are full people and they want to have fun 00:13:13.580 --> 00:13:15.620 align:center and consume TikToks with their friends. 00:13:15.620 --> 00:13:17.840 align:center And there's ways that we can make that happen. 00:13:17.840 --> 00:13:21.080 align:center This process also relied on deep embodied knowledge 00:13:21.080 --> 00:13:24.230 align:center that Emma and I have developed over time of being friends 00:13:24.230 --> 00:13:25.890 align:center and discussing like she mentioned. 00:13:25.890 --> 00:13:27.380 align:center So this isn't the type of solution 00:13:27.380 --> 00:13:30.140 align:center that you necessarily even get from a medical provider, right? 00:13:30.140 --> 00:13:32.870 align:center It's something that we created through this friendship 00:13:32.870 --> 00:13:36.470 align:center and knowledge of myself and sharing that with Emma. 00:13:36.470 --> 00:13:39.500 align:center Moving on to the second tenant, variability of ability. 00:13:39.500 --> 00:13:41.030 align:center What I mentioned at the end there 00:13:41.030 --> 00:13:43.940 align:center of how I kind of do this what I like 00:13:43.940 --> 00:13:47.570 align:center to call consequence calculus of like what will the consequences 00:13:47.570 --> 00:13:50.120 align:center be if I consume this TikTok? 00:13:50.120 --> 00:13:52.730 align:center This all revolves around this idea 00:13:52.730 --> 00:13:55.460 align:center that my abilities fluctuate greatly 00:13:55.460 --> 00:13:56.930 align:center or my symptoms fluctuate greatly. 00:13:56.930 --> 00:13:58.430 align:center And in this case, this would kind of 00:13:58.430 --> 00:14:00.050 align:center be an action determined one where 00:14:00.050 --> 00:14:01.970 align:center by watching the TikTok afterwards 00:14:01.970 --> 00:14:04.850 align:center I may be way more sick and unable to do 00:14:04.850 --> 00:14:07.920 align:center tasks for a couple of hours or something like that. 00:14:07.920 --> 00:14:10.520 align:center So again, this variability of ability is key. 00:14:10.520 --> 00:14:14.150 align:center And then finally looking at including the body. 00:14:14.150 --> 00:14:18.230 align:center Adopting a purely social lens or social model of disability lens 00:14:18.230 --> 00:14:21.260 align:center if this situation doesn't capture the full experience 00:14:21.260 --> 00:14:23.240 align:center of what happens to me if I encounter 00:14:23.240 --> 00:14:24.620 align:center the thing that's inaccessible. 00:14:24.620 --> 00:14:26.240 align:center It's not just that I can't consume it, 00:14:26.240 --> 00:14:29.510 align:center it's that I'm very, very sick afterwards. 00:14:29.510 --> 00:14:33.117 align:center And that physical discomfort while again I 00:14:33.117 --> 00:14:35.450 align:center don't want to be viewed in a medical lens of disability, 00:14:35.450 --> 00:14:38.180 align:center it is important to think about the realities of how 00:14:38.180 --> 00:14:40.860 align:center my body feels and how it responds to these things, 00:14:40.860 --> 00:14:46.460 align:center not just the social practices surrounding this exchange. 00:14:46.460 --> 00:14:49.280 align:center All right, moving on to text to speech. 00:14:49.280 --> 00:14:51.680 align:center I'll start off by sharing a bit about my experience 00:14:51.680 --> 00:14:53.760 align:center for the second case study. 00:14:53.760 --> 00:14:55.580 align:center So many days reading with my eyes 00:14:55.580 --> 00:14:57.180 align:center can make me dizzy over time. 00:14:57.180 --> 00:14:59.390 align:center So I often can choose large chunks of text 00:14:59.390 --> 00:15:01.130 align:center with text to speech tools. 00:15:01.130 --> 00:15:03.110 align:center Sometimes I use a screen reader. 00:15:03.110 --> 00:15:07.280 align:center Screen readers can go very fast and require no internet access. 00:15:07.280 --> 00:15:10.730 align:center Other times I use online text to speech tools. 00:15:10.730 --> 00:15:13.550 align:center Some of the visual interactions of the tool that I 00:15:13.550 --> 00:15:15.260 align:center use, which is called Natural Readers, 00:15:15.260 --> 00:15:18.260 align:center which I should probably drop in the chat because so many people 00:15:18.260 --> 00:15:21.620 align:center have found it incredibly useful if you like consuming things 00:15:21.620 --> 00:15:23.060 align:center auditorily. 00:15:23.060 --> 00:15:25.670 align:center And some of the visual interactions of this tool 00:15:25.670 --> 00:15:28.280 align:center are useful to me, such as being able to click where 00:15:28.280 --> 00:15:29.960 align:center in the document to start reading. 00:15:29.960 --> 00:15:33.260 align:center But I have to turn off others due to my motion sensitivities, 00:15:33.260 --> 00:15:36.140 align:center such as the highlighting of each word as it's read, 00:15:36.140 --> 00:15:38.300 align:center which is kind of the default setting of the tool. 00:15:38.300 --> 00:15:40.790 align:center While this tool limits my reading speed 00:15:40.790 --> 00:15:42.980 align:center and requires internet, it works really 00:15:42.980 --> 00:15:45.560 align:center well on PDFs, which are often not fully screen 00:15:45.560 --> 00:15:48.157 align:center reader accessible. 00:15:48.157 --> 00:15:49.740 align:center EMMA MCDONNELL: For me, text to speech 00:15:49.740 --> 00:15:52.230 align:center is also a significant access solution 00:15:52.230 --> 00:15:54.810 align:center even though I don't have any symptoms that are directly 00:15:54.810 --> 00:15:56.040 align:center triggered by reading. 00:15:56.040 --> 00:15:58.920 align:center Rather I often experience fatigue or malaise 00:15:58.920 --> 00:16:00.990 align:center that makes being even upright enough 00:16:00.990 --> 00:16:03.870 align:center to be reading a computer difficult. And at the end 00:16:03.870 --> 00:16:06.060 align:center of the day, often struggle with brain fog, which 00:16:06.060 --> 00:16:08.700 align:center makes sitting down and reading an academic research 00:16:08.700 --> 00:16:12.720 align:center paper fully visually a pretty impossible task, 00:16:12.720 --> 00:16:16.080 align:center but a pretty crucial part of my job as a graduate student. 00:16:16.080 --> 00:16:19.530 align:center I actually found text to speech in talking to Kelly. 00:16:19.530 --> 00:16:22.080 align:center And found that the Natural Reader's tool that she uses 00:16:22.080 --> 00:16:24.390 align:center meets many of my access needs. 00:16:24.390 --> 00:16:27.420 align:center The highlighting feature that can make Kelly nauseous 00:16:27.420 --> 00:16:30.060 align:center is really useful to my brain when 00:16:30.060 --> 00:16:33.900 align:center I am so brain fogged that I need both the auditory 00:16:33.900 --> 00:16:37.680 align:center and visual stimulus to be able to follow what I'm reading. 00:16:37.680 --> 00:16:41.040 align:center In this way, text to speech significantly expands access 00:16:41.040 --> 00:16:44.350 align:center through different settings for both Kelly and I. 00:16:44.350 --> 00:16:47.140 align:center We'll now apply the tenets and see the kinds of technology 00:16:47.140 --> 00:16:50.050 align:center implications that come from this analytical lens 00:16:50.050 --> 00:16:51.850 align:center on our experience. 00:16:51.850 --> 00:16:54.640 align:center First, beyond patients. 00:16:54.640 --> 00:16:56.860 align:center Text to speech addresses access needs 00:16:56.860 --> 00:17:00.910 align:center outside of a medical context and with commercial technologies. 00:17:00.910 --> 00:17:02.710 align:center One of the things that I think is 00:17:02.710 --> 00:17:04.210 align:center kind of neat about this example is 00:17:04.210 --> 00:17:07.780 align:center screen readers are the bread and butter of a lot of HCI 00:17:07.780 --> 00:17:09.369 align:center accessibility research. 00:17:09.369 --> 00:17:11.680 align:center But they're not often considered in the context 00:17:11.680 --> 00:17:12.589 align:center of chronic illness. 00:17:12.589 --> 00:17:15.790 align:center And as Kelly and I's experiences alone demonstrate, 00:17:15.790 --> 00:17:18.910 align:center there's divergent experiences and divergent needs 00:17:18.910 --> 00:17:20.740 align:center within the community of people who 00:17:20.740 --> 00:17:24.069 align:center might find screen readers to be a really accessible tool. 00:17:24.069 --> 00:17:26.560 align:center And this is a tool that accessibility research 00:17:26.560 --> 00:17:28.420 align:center knows how to think about. 00:17:28.420 --> 00:17:30.460 align:center It's a place where medical providers would 00:17:30.460 --> 00:17:34.050 align:center be far less capable of helping. 00:17:34.050 --> 00:17:37.140 align:center Second, variability of ability. 00:17:37.140 --> 00:17:40.710 align:center Our text to speech use depends on variable ability. 00:17:40.710 --> 00:17:43.770 align:center It's not intelligible why Kelly and I would sometimes 00:17:43.770 --> 00:17:45.300 align:center need a screen reader and sometimes 00:17:45.300 --> 00:17:47.910 align:center not despite the fact that we're both sighted people 00:17:47.910 --> 00:17:51.060 align:center without understanding that ability varies. 00:17:51.060 --> 00:17:54.030 align:center And this is a tool that's particularly useful for both 00:17:54.030 --> 00:17:56.880 align:center of us when we're in a flare, when motion sensitivity might 00:17:56.880 --> 00:17:59.070 align:center be higher or when I'm struggling to be upright 00:17:59.070 --> 00:18:00.840 align:center and looking at a computer in a way that 00:18:00.840 --> 00:18:03.510 align:center is moving my work forward. 00:18:03.510 --> 00:18:06.030 align:center Finally, include the body. 00:18:06.030 --> 00:18:09.300 align:center Text to speech does not fix or normalize us 00:18:09.300 --> 00:18:13.740 align:center to some non-disabled ideal, but it addresses physiological 00:18:13.740 --> 00:18:15.960 align:center and not only social barriers. 00:18:15.960 --> 00:18:19.170 align:center Kelly and I are using text to speech as a direct response 00:18:19.170 --> 00:18:22.830 align:center to bodily experiences, which also 00:18:22.830 --> 00:18:26.100 align:center has complicated social context, but needs 00:18:26.100 --> 00:18:28.440 align:center to include both to understand why 00:18:28.440 --> 00:18:31.747 align:center this would be an appropriate tool for the moment. 00:18:31.747 --> 00:18:32.580 align:center KELLY MACK: Awesome. 00:18:32.580 --> 00:18:33.960 align:center And finally, we're going to conclude today 00:18:33.960 --> 00:18:35.640 align:center by talking a bit about this framing 00:18:35.640 --> 00:18:37.950 align:center of consequence-based accessibility. 00:18:37.950 --> 00:18:40.620 align:center Oftentimes accessibility is thought of as a binary, 00:18:40.620 --> 00:18:43.980 align:center where a person can or cannot do something like climb a flight 00:18:43.980 --> 00:18:45.090 align:center of stairs. 00:18:45.090 --> 00:18:47.520 align:center Sometimes it's discussed as a spectrum, 00:18:47.520 --> 00:18:51.630 align:center going from where a task could be impossible or easy to do. 00:18:51.630 --> 00:18:54.450 align:center But in both of these paradigms the accessibility 00:18:54.450 --> 00:18:57.480 align:center of a task to someone is considered static. 00:18:57.480 --> 00:19:00.870 align:center With chronically ill people, this just isn't the reality. 00:19:00.870 --> 00:19:03.690 align:center Chronically ill people often physically 00:19:03.690 --> 00:19:05.610 align:center perform inaccessible tasks. 00:19:05.610 --> 00:19:07.800 align:center I could read with my eyes for hours, 00:19:07.800 --> 00:19:10.290 align:center I would just be extremely ill afterwards. 00:19:10.290 --> 00:19:13.200 align:center Someone with IBS can physically eat food, 00:19:13.200 --> 00:19:15.090 align:center they just might be very sick afterwards. 00:19:15.090 --> 00:19:17.310 align:center And therefore, what defines accessibility 00:19:17.310 --> 00:19:19.830 align:center for many people with chronic illnesses is not 00:19:19.830 --> 00:19:22.830 align:center innate physiological ability to perform a task, 00:19:22.830 --> 00:19:25.440 align:center but rather being able to perform a task 00:19:25.440 --> 00:19:28.590 align:center and remain in some kind of reasonable state of existence 00:19:28.590 --> 00:19:30.528 align:center afterwards. 00:19:30.528 --> 00:19:32.070 align:center EMMA MCDONNELL: And this is, I think, 00:19:32.070 --> 00:19:35.300 align:center a really exciting context to think about technology design 00:19:35.300 --> 00:19:35.960 align:center within. 00:19:35.960 --> 00:19:37.700 align:center Because there are many reasons people 00:19:37.700 --> 00:19:41.690 align:center might choose to do something that is inaccessible to them 00:19:41.690 --> 00:19:43.760 align:center and weather the consequences. 00:19:43.760 --> 00:19:46.620 align:center It might be a video Kelly wants to watch. 00:19:46.620 --> 00:19:48.350 align:center Thanksgiving dinner might make me sick, 00:19:48.350 --> 00:19:50.250 align:center but it might be my favorite foods. 00:19:50.250 --> 00:19:53.150 align:center So if we're thinking about how, especially 00:19:53.150 --> 00:19:55.130 align:center in a world with AI and machine learning-based 00:19:55.130 --> 00:19:56.900 align:center tools, and sensing-based tools, how 00:19:56.900 --> 00:19:59.270 align:center you would build an adaptive tool for someone 00:19:59.270 --> 00:20:00.590 align:center with a chronic illness. 00:20:00.590 --> 00:20:02.480 align:center You have to build in the understanding 00:20:02.480 --> 00:20:04.850 align:center that someone might choose to do something 00:20:04.850 --> 00:20:07.550 align:center that they know isn't going to leave themselves reasonable 00:20:07.550 --> 00:20:08.390 align:center afterwards. 00:20:08.390 --> 00:20:10.940 align:center But that is a crucial part of their decision 00:20:10.940 --> 00:20:12.650 align:center making around their bodies. 00:20:12.650 --> 00:20:15.050 align:center So in a consequence-based accessibility, 00:20:15.050 --> 00:20:19.310 align:center world the lines between accessible and inaccessible 00:20:19.310 --> 00:20:22.760 align:center are necessarily blurry, which is we 00:20:22.760 --> 00:20:24.230 align:center think a really interesting nuance 00:20:24.230 --> 00:20:26.820 align:center to add to how we think about technology. 00:20:26.820 --> 00:20:29.900 align:center So that is the content of our paper. 00:20:29.900 --> 00:20:33.080 align:center So thank you all so much for listening to this presentation. 00:20:33.080 --> 00:20:37.010 align:center Again, our co-authors are myself and Kelly, who led this work. 00:20:37.010 --> 00:20:40.080 align:center And it was advised by professors Leah Findlater and Heather 00:20:40.080 --> 00:20:40.580 align:center Evans. 00:20:40.580 --> 00:20:45.288 align:center It was funded by the NSF and Create Here at UW. 00:20:45.288 --> 00:20:46.205 align:center Thank you all so much. 00:20:50.560 --> 00:20:51.880 align:center BRIANNA BLASER: Excellent. 00:20:51.880 --> 00:20:53.980 align:center Does anybody have any questions before we 00:20:53.980 --> 00:20:57.790 align:center move into the panel discussion part of our presentation? 00:21:00.460 --> 00:21:02.880 align:center I see some applause. 00:21:02.880 --> 00:21:05.810 align:center Excellent. 00:21:05.810 --> 00:21:06.310 align:center Excellent. 00:21:06.310 --> 00:21:12.700 align:center I really enjoy hearing about the work that you're doing. 00:21:12.700 --> 00:21:15.400 align:center Maybe we can start by talking about-- 00:21:15.400 --> 00:21:17.200 align:center or maybe we should-- 00:21:17.200 --> 00:21:18.970 align:center yeah, OK, that's where I'm going to start 00:21:18.970 --> 00:21:21.250 align:center is what's an example of a technology that 00:21:21.250 --> 00:21:24.220 align:center wasn't built for people with chronic illnesses that's 00:21:24.220 --> 00:21:25.785 align:center helped you? 00:21:25.785 --> 00:21:27.910 align:center Are there any ways you would change that technology 00:21:27.910 --> 00:21:29.305 align:center to better suit your needs? 00:21:35.220 --> 00:21:37.350 align:center EMMA MCDONNELL: And just to clarify, 00:21:37.350 --> 00:21:39.210 align:center our panel is not just Kelly and I, 00:21:39.210 --> 00:21:44.340 align:center so this question also goes out to Litany and Sarah. 00:21:44.340 --> 00:21:45.750 align:center BRIANNA BLASER: Yes, absolutely. 00:21:45.750 --> 00:21:48.030 align:center Sorry, I should have clarified that. 00:21:48.030 --> 00:21:50.040 align:center And maybe Litany and Sarah as you 00:21:50.040 --> 00:21:52.805 align:center answer this question you can tell us a sentence or two 00:21:52.805 --> 00:21:53.430 align:center about yourself. 00:21:57.085 --> 00:21:57.960 align:center LITANY LINEBERRY: OK. 00:21:57.960 --> 00:21:58.890 align:center Hello, everyone. 00:21:58.890 --> 00:22:00.440 align:center I'm Litany Lineberry. 00:22:00.440 --> 00:22:03.680 align:center I am a PhD student at Mississippi State University, 00:22:03.680 --> 00:22:07.340 align:center where I also teach an intro class to computer science 00:22:07.340 --> 00:22:09.230 align:center and engineering. 00:22:09.230 --> 00:22:14.300 align:center For me, most recently that I have utilized actually 00:22:14.300 --> 00:22:21.870 align:center in my classroom is they have microphones for faculty now. 00:22:21.870 --> 00:22:26.660 align:center And so with my chronic illness sometimes I have to sit down, 00:22:26.660 --> 00:22:30.050 align:center so I can't always be standing and projecting my voice. 00:22:30.050 --> 00:22:34.460 align:center So I have really been utilizing that this semester 00:22:34.460 --> 00:22:37.350 align:center due to my heart defect. 00:22:37.350 --> 00:22:40.520 align:center So that is something that wasn't necessarily created 00:22:40.520 --> 00:22:43.970 align:center for my chronic illness, but it's much appreciated. 00:22:52.440 --> 00:22:54.090 align:center SARAH COPPOLA: Hi, I'm Sarah Coppola. 00:22:54.090 --> 00:22:57.330 align:center I'm a faculty member at University of Washington. 00:22:57.330 --> 00:23:01.530 align:center And I would say just in general remote access 00:23:01.530 --> 00:23:03.120 align:center has been really important. 00:23:03.120 --> 00:23:08.280 align:center Zoom, FaceTime, just having the ability 00:23:08.280 --> 00:23:12.480 align:center to do things asynchronously and remotely 00:23:12.480 --> 00:23:16.230 align:center has definitely been useful. 00:23:16.230 --> 00:23:21.003 align:center Even before COVID, I was really happy to have those options. 00:23:21.003 --> 00:23:22.170 align:center Now they are so much better. 00:23:26.972 --> 00:23:27.680 align:center KELLY MACK: Yeah. 00:23:27.680 --> 00:23:30.650 align:center This is probably a couple other random examples from my life. 00:23:30.650 --> 00:23:32.660 align:center Audio descriptions is one that is 00:23:32.660 --> 00:23:34.490 align:center built with an accessibility intent, 00:23:34.490 --> 00:23:36.650 align:center but is not traditionally thought of for people 00:23:36.650 --> 00:23:37.610 align:center with chronic illnesses. 00:23:37.610 --> 00:23:40.070 align:center But yeah, use the heck out of those. 00:23:40.070 --> 00:23:42.423 align:center And love that Netflix all the way at the bottom 00:23:42.423 --> 00:23:44.090 align:center it's not yet at the top, but all the way 00:23:44.090 --> 00:23:46.010 align:center at the bottom you can filter by audio 00:23:46.010 --> 00:23:47.600 align:center described and captioned content. 00:23:47.600 --> 00:23:49.340 align:center And that's really helpful. 00:23:49.340 --> 00:23:51.580 align:center On the non-accessibility side of things, 00:23:51.580 --> 00:23:54.020 align:center they're not intended to be an access tool, 00:23:54.020 --> 00:23:58.070 align:center my bike is an awesome mobility aid a lot of the time. 00:23:58.070 --> 00:24:01.135 align:center If I'm like struggling at the end of the day, 00:24:01.135 --> 00:24:02.510 align:center it's nice and stable and gives me 00:24:02.510 --> 00:24:04.093 align:center something to grip on to as I'm walking 00:24:04.093 --> 00:24:05.180 align:center home, which is also nice. 00:24:09.510 --> 00:24:10.500 align:center EMMA MCDONNELL: Yeah. 00:24:10.500 --> 00:24:14.400 align:center Sarah kind of led with my answer as well 00:24:14.400 --> 00:24:20.580 align:center because I would say Zoom acts as a really significant 00:24:20.580 --> 00:24:21.990 align:center accessibility aid for me. 00:24:21.990 --> 00:24:26.200 align:center The ability to flexibly say, it's 00:24:26.200 --> 00:24:29.950 align:center not going to be a good idea for me to be on campus today. 00:24:29.950 --> 00:24:32.260 align:center Or if it is already an online class, 00:24:32.260 --> 00:24:36.340 align:center even the ability to lean back in ways 00:24:36.340 --> 00:24:38.420 align:center that are pretty inconspicuous on camera, 00:24:38.420 --> 00:24:41.680 align:center but also be able to go off camera and take class laying 00:24:41.680 --> 00:24:45.970 align:center down is a thing that is technically possible 00:24:45.970 --> 00:24:49.750 align:center in a classroom, but raises a lot of-- 00:24:49.750 --> 00:24:53.668 align:center just it makes difference very visible in a classroom. 00:24:53.668 --> 00:24:55.210 align:center And often there's not a lot of places 00:24:55.210 --> 00:25:00.490 align:center I'd love to lay down while in class, whereas when I'm at home 00:25:00.490 --> 00:25:02.320 align:center it can be less visible. 00:25:02.320 --> 00:25:07.660 align:center People can just trust that I'm doing what I can do. 00:25:07.660 --> 00:25:13.375 align:center And also makes the not having to go in barrier is really useful. 00:25:16.427 --> 00:25:17.510 align:center BRIANNA BLASER: Excellent. 00:25:17.510 --> 00:25:20.120 align:center I also will say I just love that in Zoom 00:25:20.120 --> 00:25:22.970 align:center if I don't want to talk, I can type stuff in the chat. 00:25:22.970 --> 00:25:24.080 align:center Ask questions in the chat. 00:25:24.080 --> 00:25:26.810 align:center I am much more likely to engage that way in a lot of things 00:25:26.810 --> 00:25:28.820 align:center than I am necessarily to engage verbally. 00:25:31.610 --> 00:25:33.830 align:center As you look 10 years down the line, 00:25:33.830 --> 00:25:35.330 align:center what would you like to see in terms 00:25:35.330 --> 00:25:39.500 align:center of technologist's engagement with chronically ill people? 00:25:42.260 --> 00:25:44.250 align:center LITANY LINEBERRY: For Litany again, for me 00:25:44.250 --> 00:25:49.790 align:center personally, especially being on the side of my degree 00:25:49.790 --> 00:25:53.780 align:center in computer science is really talking individually 00:25:53.780 --> 00:25:58.760 align:center with or in a group with people with chronic illnesses 00:25:58.760 --> 00:26:03.560 align:center and asking them those questions of, well, I have this idea. 00:26:03.560 --> 00:26:06.950 align:center How could this fit your specific illness instead 00:26:06.950 --> 00:26:08.840 align:center of having it generalized? 00:26:08.840 --> 00:26:11.390 align:center And thinking that covers everyone. 00:26:11.390 --> 00:26:12.500 align:center So that's for me. 00:26:18.087 --> 00:26:19.170 align:center KELLY MACK: This is Kelly. 00:26:19.170 --> 00:26:23.310 align:center I would love to see people who have chronic illnesses being 00:26:23.310 --> 00:26:25.530 align:center thought of as having valuable expertise 00:26:25.530 --> 00:26:28.050 align:center and not be being secondary to doctors, 00:26:28.050 --> 00:26:31.080 align:center at least in a lot of cases with HCI-based solutions, right? 00:26:31.080 --> 00:26:34.180 align:center Like I've lived with this for years. 00:26:34.180 --> 00:26:36.222 align:center I know what I need really, really well. 00:26:36.222 --> 00:26:37.680 align:center Like sometimes maybe you don't even 00:26:37.680 --> 00:26:39.222 align:center have to talk to doctors if we're just 00:26:39.222 --> 00:26:42.210 align:center talking about how to make work more accessible to me. 00:26:42.210 --> 00:26:44.810 align:center So that's what I'd really love to see a shift in perspective. 00:26:44.810 --> 00:26:45.310 align:center Yeah. 00:26:49.618 --> 00:26:50.660 align:center EMMA MCDONNELL: I think-- 00:26:50.660 --> 00:26:53.330 align:center and I think this is one of the reasons Kelly 00:26:53.330 --> 00:26:59.210 align:center and I wrote this paper, but we combed the HCI literature. 00:26:59.210 --> 00:27:04.010 align:center And even in papers that adopted a more like accessibility type 00:27:04.010 --> 00:27:06.890 align:center approach, more like people have social needs 00:27:06.890 --> 00:27:08.390 align:center and we could support social needs. 00:27:08.390 --> 00:27:11.180 align:center It's not framed in context of either disability 00:27:11.180 --> 00:27:12.740 align:center or accessibility. 00:27:12.740 --> 00:27:14.930 align:center And I think we are living in a world 00:27:14.930 --> 00:27:16.910 align:center where with the wake of long-COVID, 00:27:16.910 --> 00:27:20.120 align:center the biggest growing portion of disabled people 00:27:20.120 --> 00:27:24.110 align:center is going to be people disabled by chronic illnesses. 00:27:24.110 --> 00:27:28.820 align:center And understanding that this is a constituency that 00:27:28.820 --> 00:27:32.480 align:center is relevant to design for feels like the really obvious step 00:27:32.480 --> 00:27:33.680 align:center one. 00:27:33.680 --> 00:27:35.570 align:center And I would hope that 10 years down the line 00:27:35.570 --> 00:27:38.270 align:center we can get past that step one. 00:27:38.270 --> 00:27:43.490 align:center But bringing in understandings of variable ability of fatigue 00:27:43.490 --> 00:27:47.240 align:center and brain fog as types of cognitive disabilities 00:27:47.240 --> 00:27:48.080 align:center to design for. 00:27:48.080 --> 00:27:50.090 align:center I think a lot of chronic illnesses 00:27:50.090 --> 00:27:54.710 align:center present symptoms that fall into even the category of more 00:27:54.710 --> 00:27:56.660 align:center traditional understandings of disability 00:27:56.660 --> 00:27:58.970 align:center that HCI has not paid as much attention to, 00:27:58.970 --> 00:28:02.280 align:center that accessibility has not paid as much attention to. 00:28:02.280 --> 00:28:05.240 align:center So like putting that even in the center 00:28:05.240 --> 00:28:07.160 align:center of how we think about accessibility 00:28:07.160 --> 00:28:08.390 align:center and who we're working with. 00:28:12.488 --> 00:28:13.280 align:center SARAH COPPOLA: Yes. 00:28:13.280 --> 00:28:15.540 align:center This is Sarah again if I can build off of that, 00:28:15.540 --> 00:28:19.580 align:center I think also questioning the idea of productivity 00:28:19.580 --> 00:28:24.770 align:center when we design productivity tools around these 00:28:24.770 --> 00:28:26.540 align:center not just the variability of flexibility, 00:28:26.540 --> 00:28:31.820 align:center but questioning what that even looks like. 00:28:31.820 --> 00:28:36.590 align:center I think productivity tools are sound so ablest in the way. 00:28:36.590 --> 00:28:40.920 align:center We can just get more time out of day. 00:28:40.920 --> 00:28:43.320 align:center Questioning that, knowing so much of our population 00:28:43.320 --> 00:28:44.100 align:center is disabled. 00:28:44.100 --> 00:28:46.710 align:center It's very particular ways of long-COVID 00:28:46.710 --> 00:28:48.735 align:center that are just in conflict. 00:28:52.538 --> 00:28:54.580 align:center BRIANNA BLASER: I think that's really interesting 00:28:54.580 --> 00:28:56.247 align:center to think about from the universal design 00:28:56.247 --> 00:29:00.670 align:center perspective of like everybody gets sick sometimes, right? 00:29:00.670 --> 00:29:07.130 align:center And how can those benefit other folks in some of those ways? 00:29:07.130 --> 00:29:11.440 align:center So Emma and Kelly talked about three tenets beyond patients, 00:29:11.440 --> 00:29:15.520 align:center variability of ability, and including the body. 00:29:15.520 --> 00:29:17.710 align:center Can you think about how these tenets 00:29:17.710 --> 00:29:19.930 align:center might come up in your day to day life 00:29:19.930 --> 00:29:22.960 align:center or impact your experiences? 00:29:33.110 --> 00:29:34.700 align:center EMMA MCDONNELL: I can start this one. 00:29:34.700 --> 00:29:40.130 align:center Of the things that has felt very relevant to my life recently 00:29:40.130 --> 00:29:44.150 align:center is like often when we think about work like the idea of, 00:29:44.150 --> 00:29:45.950 align:center oh I might need to take a sick day, 00:29:45.950 --> 00:29:49.880 align:center is like maybe even the only thing close to the idea 00:29:49.880 --> 00:29:52.490 align:center that we have that bodies don't work all the time. 00:29:52.490 --> 00:29:56.060 align:center And like I very rarely experience a sick day, 00:29:56.060 --> 00:29:58.010 align:center but I experience a lot of sick hours. 00:29:58.010 --> 00:30:01.650 align:center I experience those most of the days. 00:30:01.650 --> 00:30:10.160 align:center So how I like plan my life around how 00:30:10.160 --> 00:30:12.830 align:center I might be down for the count for an hour and then 00:30:12.830 --> 00:30:14.540 align:center able to work later in the night. 00:30:14.540 --> 00:30:21.130 align:center And that kind of just rather extreme to many like ping 00:30:21.130 --> 00:30:24.160 align:center ponging of what my capacity at any time of the day 00:30:24.160 --> 00:30:27.980 align:center looks like is something that I don't think we 00:30:27.980 --> 00:30:30.560 align:center have a good social anticipation for. 00:30:30.560 --> 00:30:33.080 align:center And I'm not quite sure even how technology starts 00:30:33.080 --> 00:30:35.280 align:center to build for that assumption. 00:30:35.280 --> 00:30:37.520 align:center But that is something where I definitely 00:30:37.520 --> 00:30:42.920 align:center feel the variability of ability in how I plan my life. 00:30:46.950 --> 00:30:48.690 align:center LITANY LINEBERRY: For me, I guess 00:30:48.690 --> 00:30:55.800 align:center [INAUDIBLE] beyond the patient and also the variability one 00:30:55.800 --> 00:31:00.400 align:center is with my chronic illness, especially at work, 00:31:00.400 --> 00:31:02.110 align:center I sometimes get fatigued. 00:31:02.110 --> 00:31:06.000 align:center So I have to make sure that I can-- 00:31:06.000 --> 00:31:09.750 align:center so we have stairs, but we also have an elevator. 00:31:09.750 --> 00:31:13.560 align:center So sometimes if I feel up to it I can take the stairs. 00:31:13.560 --> 00:31:17.100 align:center If I don't, then I take the elevator. 00:31:17.100 --> 00:31:23.400 align:center So looking at things like that, but also as far as beyond 00:31:23.400 --> 00:31:25.420 align:center like walking just in general. 00:31:25.420 --> 00:31:28.920 align:center So on campus now they have-- 00:31:28.920 --> 00:31:31.410 align:center they're not golf carts, there's like scooters or something 00:31:31.410 --> 00:31:33.000 align:center that you could use. 00:31:33.000 --> 00:31:37.920 align:center So that has been very beneficial and a good idea. 00:31:37.920 --> 00:31:40.690 align:center So looking at, OK, I know my limitations. 00:31:40.690 --> 00:31:45.430 align:center I know I sometimes can get fatigued due to exertion. 00:31:45.430 --> 00:31:49.090 align:center So what are ways that I can limit that while I'm at work 00:31:49.090 --> 00:31:51.255 align:center and still get my job done? 00:32:04.125 --> 00:32:06.000 align:center SARAH COPPOLA: I'm an ergonomist by training, 00:32:06.000 --> 00:32:07.800 align:center so I'm always thinking about bodies 00:32:07.800 --> 00:32:11.770 align:center and the variation of bodies. 00:32:11.770 --> 00:32:17.970 align:center And so for me it's a lot of having access 00:32:17.970 --> 00:32:21.070 align:center to not very expensive, but all sorts of tools. 00:32:21.070 --> 00:32:26.490 align:center So I'm showing a pink Logitech ergonomic mouse. 00:32:26.490 --> 00:32:30.030 align:center And like I have to have I have it 00:32:30.030 --> 00:32:32.100 align:center here with a ring on the back of my phone. 00:32:32.100 --> 00:32:35.970 align:center And just using voice to text, just having the option to use 00:32:35.970 --> 00:32:40.160 align:center variable input technologies. 00:32:40.160 --> 00:32:45.910 align:center Having the ability to work around races and mobility 00:32:45.910 --> 00:32:49.910 align:center aids without facing a lot of stigma for using them. 00:32:49.910 --> 00:32:55.594 align:center I think it's sort of, yeah, so it's the variability but also 00:32:55.594 --> 00:32:59.003 align:center [INAUDIBLE] 00:32:59.003 --> 00:33:00.920 align:center BRIANNA BLASER: I want to invite two questions 00:33:00.920 --> 00:33:02.160 align:center from the audience. 00:33:02.160 --> 00:33:03.830 align:center So if anybody has a question, you 00:33:03.830 --> 00:33:07.370 align:center can raise your hand in unmute or put it in the chat. 00:33:07.370 --> 00:33:09.460 align:center But I'd love to get some conversation going 00:33:09.460 --> 00:33:11.210 align:center because I know we have a lot of folks here 00:33:11.210 --> 00:33:16.660 align:center who have viewpoints that we'd all like to hear as well. 00:33:20.130 --> 00:33:23.120 align:center So I'll ask another question while folks are thinking 00:33:23.120 --> 00:33:25.400 align:center of questions they might have. 00:33:25.400 --> 00:33:27.080 align:center What are some challenges you experience 00:33:27.080 --> 00:33:30.680 align:center in work or school or personal life 00:33:30.680 --> 00:33:32.165 align:center where technology could help? 00:33:44.050 --> 00:33:46.350 align:center LITANY LINEBERRY: So for me it's grading. 00:33:46.350 --> 00:33:48.900 align:center So like I said earlier, I teach an intro 00:33:48.900 --> 00:33:50.220 align:center of the computing class. 00:33:50.220 --> 00:33:54.210 align:center And sometimes I don't have the energy due to I 00:33:54.210 --> 00:33:55.810 align:center have two chronic illnesses. 00:33:55.810 --> 00:33:58.950 align:center So sometimes I really don't have the energy to grade. 00:33:58.950 --> 00:34:01.380 align:center So sometimes it takes me longer to grade 00:34:01.380 --> 00:34:05.130 align:center than usual or other professors or instructors. 00:34:05.130 --> 00:34:08.130 align:center So maybe having within-- 00:34:08.130 --> 00:34:11.620 align:center and we're all like they submit all the work online. 00:34:11.620 --> 00:34:15.750 align:center So maybe having something within that module 00:34:15.750 --> 00:34:18.750 align:center or within that program that we use where 00:34:18.750 --> 00:34:21.600 align:center I can grade it using voice to text 00:34:21.600 --> 00:34:24.960 align:center or have it where it reads me their paper 00:34:24.960 --> 00:34:27.060 align:center if they did a paper or a discussion post, 00:34:27.060 --> 00:34:30.785 align:center where they have me try and read through everything 00:34:30.785 --> 00:34:32.800 align:center when I'm already not feeling good. 00:34:32.800 --> 00:34:34.335 align:center So having something like that. 00:34:40.340 --> 00:34:41.840 align:center EMMA MCDONNELL: Something in my life 00:34:41.840 --> 00:34:44.900 align:center that I feel like I haven't spent as much time hacking on 00:34:44.900 --> 00:34:52.400 align:center or thinking on is ordering things when brain fog is hard. 00:34:52.400 --> 00:34:58.450 align:center Like even figuring out that brain fog is happening 00:34:58.450 --> 00:35:00.640 align:center is sometimes a trick and a half. 00:35:00.640 --> 00:35:03.250 align:center But then there are days where I will 00:35:03.250 --> 00:35:05.050 align:center be like just stuck in email. 00:35:05.050 --> 00:35:09.860 align:center And like cannot figure out what I was going to do next. 00:35:09.860 --> 00:35:13.810 align:center And I think that's a really tricky tool to use or tool 00:35:13.810 --> 00:35:15.430 align:center to figure out. 00:35:15.430 --> 00:35:17.560 align:center But like Kelly and I have brainstormed, 00:35:17.560 --> 00:35:20.950 align:center like sometimes like I can backtrack it. 00:35:20.950 --> 00:35:23.260 align:center If I can just look at what I was looking at last 00:35:23.260 --> 00:35:26.470 align:center or go through like, oh this tweet made me think of that. 00:35:26.470 --> 00:35:29.000 align:center That's why I went off in this direction. 00:35:29.000 --> 00:35:33.620 align:center So even a way for like with a ton of security and privacy 00:35:33.620 --> 00:35:36.470 align:center implications that terrify me as I say this, 00:35:36.470 --> 00:35:39.860 align:center like a way to keep track of all of the things 00:35:39.860 --> 00:35:40.970 align:center that I've looked at. 00:35:40.970 --> 00:35:43.490 align:center Beyond just like links, but like it was that email that's 00:35:43.490 --> 00:35:44.750 align:center sent you over there. 00:35:44.750 --> 00:35:47.330 align:center Like do you want to figure out what that pattern meant? 00:35:50.170 --> 00:35:50.920 align:center I think there's-- 00:35:50.920 --> 00:35:53.950 align:center I think cognitive accessibility and keeping track of where you 00:35:53.950 --> 00:35:57.130 align:center are in a task, with the danger of being very 00:35:57.130 --> 00:36:00.250 align:center productivity-focused but also with the reality of having 00:36:00.250 --> 00:36:03.880 align:center things I need to do in a day could be-- 00:36:03.880 --> 00:36:05.950 align:center is an area that I think technology 00:36:05.950 --> 00:36:08.103 align:center could play a huge role in, especially when 00:36:08.103 --> 00:36:08.770 align:center work is digital. 00:36:11.807 --> 00:36:12.890 align:center KELLY MACK: This is Kelly. 00:36:12.890 --> 00:36:14.807 align:center I have a couple of examples that come to mind. 00:36:14.807 --> 00:36:17.450 align:center One would be something where I can just shift 00:36:17.450 --> 00:36:18.800 align:center into different modes of work. 00:36:18.800 --> 00:36:22.160 align:center Like a good body day, let's get the stuff done. 00:36:22.160 --> 00:36:24.750 align:center And the I was sick all of last night, 00:36:24.750 --> 00:36:26.600 align:center got about one hour of sleep. 00:36:26.600 --> 00:36:29.690 align:center Hey computer, please like help me cancel all my meetings 00:36:29.690 --> 00:36:31.130 align:center or reschedule my meetings. 00:36:31.130 --> 00:36:33.170 align:center Help me pick out the tasks that are so 00:36:33.170 --> 00:36:35.630 align:center highly important I have to do them or so easy 00:36:35.630 --> 00:36:37.640 align:center that I could make some progress on them today. 00:36:37.640 --> 00:36:38.690 align:center That's one. 00:36:38.690 --> 00:36:42.320 align:center The second, this is like research question for folks. 00:36:42.320 --> 00:36:45.320 align:center I would love a way to skim PDFs. 00:36:45.320 --> 00:36:47.840 align:center Like since I use a screen reader the thing 00:36:47.840 --> 00:36:50.030 align:center that I haven't been able to find an equivalent 00:36:50.030 --> 00:36:52.130 align:center for is quickly skimming through papers. 00:36:52.130 --> 00:36:54.110 align:center And it makes certain tasks just really-- 00:36:54.110 --> 00:36:56.608 align:center I dread them because someone could 00:36:56.608 --> 00:36:58.400 align:center skim a paper in five minutes and figure out 00:36:58.400 --> 00:36:59.730 align:center what was relevant to them. 00:36:59.730 --> 00:37:02.270 align:center But I have to parse through the entire thing with a screen 00:37:02.270 --> 00:37:04.380 align:center reader and it takes so hecking long. 00:37:04.380 --> 00:37:06.680 align:center So that's another thing where I would love technology 00:37:06.680 --> 00:37:10.310 align:center to help me when my eyes are not doing good enough to read. 00:37:16.592 --> 00:37:18.550 align:center SARAH COPPOLA: I spend most of my time thinking 00:37:18.550 --> 00:37:19.720 align:center about teaching. 00:37:19.720 --> 00:37:25.150 align:center And so for me, I would like a better system 00:37:25.150 --> 00:37:28.120 align:center for teaching hybrid classes or online classes that 00:37:28.120 --> 00:37:32.800 align:center doesn't require 20 steps of cognitive overload 00:37:32.800 --> 00:37:34.240 align:center that I have to remember to do. 00:37:34.240 --> 00:37:40.630 align:center And I think there's a massive opportunity here for one 00:37:40.630 --> 00:37:42.730 align:center of these tech companies to come up 00:37:42.730 --> 00:37:48.340 align:center with a much better online teaching platform. 00:37:48.340 --> 00:37:51.430 align:center Even in classrooms where I do have a hybrid classroom, 00:37:51.430 --> 00:37:55.390 align:center it's still so many steps to get everything working. 00:37:55.390 --> 00:37:57.130 align:center And most of my classrooms are not, 00:37:57.130 --> 00:38:00.040 align:center so I have to drag a camera around me. 00:38:00.040 --> 00:38:01.750 align:center It's just too much. 00:38:05.523 --> 00:38:07.940 align:center BRIANNA BLASER: I think that's so important to as we think 00:38:07.940 --> 00:38:12.020 align:center of all of the reasons that we know folks with disabilities 00:38:12.020 --> 00:38:16.160 align:center and other backgrounds need online access to classes 00:38:16.160 --> 00:38:18.820 align:center and not just coming in person. 00:38:18.820 --> 00:38:20.500 align:center Richard, I see your hand is up. 00:38:24.745 --> 00:38:26.620 align:center RICHARD LADNER: Yeah, this is Richard Ladner. 00:38:26.620 --> 00:38:30.860 align:center Yeah, that was a great talk and this wonderful panel really. 00:38:30.860 --> 00:38:31.360 align:center Wow. 00:38:34.720 --> 00:38:37.300 align:center I'm wondering if we're going back 00:38:37.300 --> 00:38:40.660 align:center to the sort of theoretical framework. 00:38:40.660 --> 00:38:42.680 align:center And I liked your framework. 00:38:42.680 --> 00:38:47.830 align:center And we have the medical model and we have this social model 00:38:47.830 --> 00:38:49.950 align:center and there's things that are not-- 00:38:49.950 --> 00:38:51.540 align:center that's too binary. 00:38:51.540 --> 00:38:53.430 align:center But when I think of the medical model 00:38:53.430 --> 00:38:57.120 align:center these days, when I go to the doctor they don't ask me 00:38:57.120 --> 00:39:00.060 align:center how I feel, they ask me if I can tie my shoes. 00:39:00.060 --> 00:39:03.030 align:center They ask me if I can-- 00:39:03.030 --> 00:39:06.690 align:center you go through a physical these days, it's not-- 00:39:06.690 --> 00:39:10.150 align:center to me it's not looking at my body so much as my activities. 00:39:10.150 --> 00:39:11.910 align:center So I wonder if the medical model really 00:39:11.910 --> 00:39:15.300 align:center is what we think it is anymore, at least for somebody 00:39:15.300 --> 00:39:16.560 align:center that's aging. 00:39:16.560 --> 00:39:19.320 align:center The questions that I may ask at the doctor 00:39:19.320 --> 00:39:26.110 align:center are more access questions, if you like. 00:39:26.110 --> 00:39:29.950 align:center EMMA MCDONNELL: That is so interesting and also 00:39:29.950 --> 00:39:33.800 align:center very divergent from my experience as a 26-year-old. 00:39:33.800 --> 00:39:40.180 align:center So I wonder if we have a lot to learn from how there's some 00:39:40.180 --> 00:39:43.790 align:center exciting work happening in like more progressive, 00:39:43.790 --> 00:39:47.850 align:center more like in some ways disability-informed thinking 00:39:47.850 --> 00:39:49.835 align:center about aging that doesn't-- 00:39:49.835 --> 00:39:51.960 align:center in the same way that chronic illness doesn't always 00:39:51.960 --> 00:39:56.280 align:center cross into accessibility spaces, that kind of thinking 00:39:56.280 --> 00:39:58.050 align:center doesn't always cross in. 00:39:58.050 --> 00:40:00.930 align:center Also one of the things that Kelly and I grappled 00:40:00.930 --> 00:40:04.890 align:center with in writing this paper is there 00:40:04.890 --> 00:40:08.140 align:center are some parts of medical practice, 00:40:08.140 --> 00:40:10.800 align:center especially like physical and occupational therapy, that 00:40:10.800 --> 00:40:14.340 align:center get closer to looking at the kinds of questions 00:40:14.340 --> 00:40:18.420 align:center that we're trying to solve maybe with our HCI accessibility hats 00:40:18.420 --> 00:40:20.370 align:center on. 00:40:20.370 --> 00:40:22.920 align:center But also like most folks with chronic illnesses 00:40:22.920 --> 00:40:25.900 align:center don't get sent to occupational therapy. 00:40:25.900 --> 00:40:32.560 align:center So how could that knowledge be something that gets built in? 00:40:32.560 --> 00:40:34.720 align:center Maybe that's a more productive way 00:40:34.720 --> 00:40:38.830 align:center of a middle ground on engaging medical knowledge 00:40:38.830 --> 00:40:40.660 align:center and technical knowledge. 00:40:40.660 --> 00:40:43.330 align:center There's some cool work within HCI, 00:40:43.330 --> 00:40:45.820 align:center Megan Hofmann has led some cool work on collaboration 00:40:45.820 --> 00:40:48.970 align:center with occupational therapy in accessible technology. 00:40:48.970 --> 00:40:50.633 align:center And maybe that is a really cool place 00:40:50.633 --> 00:40:51.925 align:center to think about chronic illness. 00:41:01.900 --> 00:41:04.330 align:center Like Sarah, Kelly, and Litany, I'm 00:41:04.330 --> 00:41:06.040 align:center curious if that's ever your experience 00:41:06.040 --> 00:41:09.250 align:center with how medical care is provided to you functionally 00:41:09.250 --> 00:41:13.315 align:center rather than like medical model-y. 00:41:16.265 --> 00:41:17.640 align:center SARAH COPPOLA: This is Sarah, I'm 00:41:17.640 --> 00:41:19.500 align:center laughing because what medical care? 00:41:19.500 --> 00:41:21.548 align:center I think for so many years, this is 00:41:21.548 --> 00:41:23.340 align:center what I wrote my dissertation on, so I'm not 00:41:23.340 --> 00:41:24.423 align:center going to get on a soapbox. 00:41:24.423 --> 00:41:30.000 align:center But for so many people who are assigned female birth for women 00:41:30.000 --> 00:41:34.410 align:center or fem-presenting there is so little useful health 00:41:34.410 --> 00:41:36.360 align:center care for you. 00:41:36.360 --> 00:41:40.290 align:center And I'm actually sort of baffled as my mother has transitioned 00:41:40.290 --> 00:41:45.390 align:center into elder, sort of geriatric care at the Mayo Clinic 00:41:45.390 --> 00:41:48.090 align:center how good and comprehensive it is. 00:41:48.090 --> 00:41:51.840 align:center And thinking about things like chronic illness with her 00:41:51.840 --> 00:42:00.180 align:center that I don't have access to as a over-educated, wealthy person 00:42:00.180 --> 00:42:02.130 align:center in the US. 00:42:02.130 --> 00:42:05.520 align:center So it's hard to really think about the medical system when 00:42:05.520 --> 00:42:08.430 align:center I know that the medical system is so terrible for people who 00:42:08.430 --> 00:42:11.730 align:center are chronically ill, and especially people like me 00:42:11.730 --> 00:42:14.490 align:center and many of the other panelists here. 00:42:14.490 --> 00:42:18.278 align:center [INAUDIBLE] 00:42:18.278 --> 00:42:19.820 align:center KELLY MACK: And this is Kelly, I want 00:42:19.820 --> 00:42:22.195 align:center to just highlight what some people are saying in the chat 00:42:22.195 --> 00:42:26.570 align:center too around how it really depends on the doctor. 00:42:26.570 --> 00:42:29.990 align:center And like Sarah was saying, some of your identity 00:42:29.990 --> 00:42:32.990 align:center characteristics age, gender, things like that. 00:42:32.990 --> 00:42:35.310 align:center Because some doctors, if you can find 00:42:35.310 --> 00:42:37.310 align:center one who's willing to view you more holistically, 00:42:37.310 --> 00:42:38.900 align:center maybe you do get questions like that. 00:42:38.900 --> 00:42:40.937 align:center But the standard health care that I 00:42:40.937 --> 00:42:43.520 align:center can get two blocks up the road that's free for me as a student 00:42:43.520 --> 00:42:45.980 align:center or very cheap for me as a student, you know, 00:42:45.980 --> 00:42:49.790 align:center someone who looks like me who's like 20 something and looks, 00:42:49.790 --> 00:42:51.170 align:center quote, unquote, healthy right? 00:42:51.170 --> 00:42:54.050 align:center I don't usually get questions about what 00:42:54.050 --> 00:42:55.220 align:center capabilities do you have? 00:42:55.220 --> 00:42:57.980 align:center When really if you ask, right, there's a lot of limitations 00:42:57.980 --> 00:42:59.970 align:center there that I would love your help on. 00:42:59.970 --> 00:43:02.600 align:center So it's often me bringing that up myself. 00:43:02.600 --> 00:43:05.630 align:center And people having varying responses 00:43:05.630 --> 00:43:07.100 align:center to me bringing them up, right? 00:43:07.100 --> 00:43:10.628 align:center Some being open, some being less so. 00:43:10.628 --> 00:43:12.170 align:center LITANY LINEBERRY: And this is Litany. 00:43:12.170 --> 00:43:15.080 align:center So for me, there's a lot of different disparities. 00:43:15.080 --> 00:43:22.390 align:center However, I know when I go to like my regular doctor 00:43:22.390 --> 00:43:26.000 align:center or if I'm on campus and I get sick 00:43:26.000 --> 00:43:28.760 align:center then I know I have a different experience than if I 00:43:28.760 --> 00:43:32.660 align:center go to my personal doctor that knows in-depth 00:43:32.660 --> 00:43:34.830 align:center my different chronic illnesses. 00:43:34.830 --> 00:43:38.930 align:center So if I go, let's say, on campus I may be told, 00:43:38.930 --> 00:43:41.810 align:center well, you look fine or you seem fine. 00:43:41.810 --> 00:43:44.600 align:center And reality it's like, yeah, no. 00:43:44.600 --> 00:43:48.950 align:center So however it's also about me explaining to them, 00:43:48.950 --> 00:43:50.840 align:center no, this is how I feel and it's probably 00:43:50.840 --> 00:43:55.280 align:center do because of this chronic illness or this chronic illness 00:43:55.280 --> 00:43:56.810 align:center and x, y, and z. 00:43:56.810 --> 00:44:01.070 align:center So they don't go into depth about the question 00:44:01.070 --> 00:44:04.940 align:center unlike my regular doctor back home does. 00:44:09.930 --> 00:44:12.540 align:center BRIANNA BLASER: I see a question in the chat from Kimberly. 00:44:12.540 --> 00:44:15.330 align:center What about the use of AI, like chat GPT? 00:44:15.330 --> 00:44:18.300 align:center Has anyone used an AI to aid with accessibility? 00:44:18.300 --> 00:44:20.520 align:center Could it summarize a paper, do some of the checking 00:44:20.520 --> 00:44:23.227 align:center of computer code? 00:44:23.227 --> 00:44:24.560 align:center KELLY MACK: Yeah, this is Kelly. 00:44:24.560 --> 00:44:25.940 align:center It's funny that you mention that, Kimberly, 00:44:25.940 --> 00:44:26.982 align:center because that's actually-- 00:44:26.982 --> 00:44:29.840 align:center I was complaining about this to somebody who's a PhD student 00:44:29.840 --> 00:44:31.400 align:center and also understands chronic illness. 00:44:31.400 --> 00:44:34.550 align:center And she was like, why don't you toss the paper in chat GPT 00:44:34.550 --> 00:44:37.170 align:center and see if it will summarize it for you? 00:44:37.170 --> 00:44:40.260 align:center Which was really interesting and I hadn't considered. 00:44:40.260 --> 00:44:43.910 align:center And I think that there are maybe places where AI can help, 00:44:43.910 --> 00:44:46.520 align:center but you've got to also be thoughtful of what 00:44:46.520 --> 00:44:48.890 align:center if it's incorrect and I'm going to be like citing this 00:44:48.890 --> 00:44:51.500 align:center in a paper because I think this paper says one thing when it's 00:44:51.500 --> 00:44:53.750 align:center actually the edge and summarize it right? 00:44:53.750 --> 00:44:55.700 align:center So I think definitely hitting up against some 00:44:55.700 --> 00:44:57.710 align:center of those traditional problems too around 00:44:57.710 --> 00:44:59.510 align:center what's going to happen if the AI is wrong? 00:44:59.510 --> 00:45:01.040 align:center How do we present that confidence? 00:45:01.040 --> 00:45:04.700 align:center What about the privacy and how the AI is being run? 00:45:04.700 --> 00:45:07.100 align:center Like are there people being underpaid to check 00:45:07.100 --> 00:45:09.500 align:center the output of this AI, right, is that something 00:45:09.500 --> 00:45:11.030 align:center that I want to be using? 00:45:11.030 --> 00:45:12.500 align:center All these are valid questions. 00:45:16.410 --> 00:45:18.950 align:center EMMA MCDONNELL: I think chronic illness also brings up 00:45:18.950 --> 00:45:24.470 align:center some really interesting questions in the like even 00:45:24.470 --> 00:45:27.710 align:center the pre-AI generative tools. 00:45:27.710 --> 00:45:31.530 align:center Landscape, in that Kelly and I touched on this a little bit, 00:45:31.530 --> 00:45:35.000 align:center like a lot of times AI needs-- 00:45:35.000 --> 00:45:37.460 align:center well, pretty much all AI and machine-learning models 00:45:37.460 --> 00:45:40.490 align:center need some form of labeled training data. 00:45:40.490 --> 00:45:44.540 align:center And when there is such a complicated set of calculus 00:45:44.540 --> 00:45:46.910 align:center around is this accessible to me? 00:45:46.910 --> 00:45:49.187 align:center Like I couldn't just go through it. 00:45:49.187 --> 00:45:49.770 align:center I can do this. 00:45:49.770 --> 00:45:50.280 align:center I can do this. 00:45:50.280 --> 00:45:50.880 align:center I can't do this. 00:45:50.880 --> 00:45:51.480 align:center I can do this. 00:45:51.480 --> 00:45:52.400 align:center I can't do that. 00:45:52.400 --> 00:45:55.130 align:center Because it is so highly contextual. 00:45:55.130 --> 00:45:56.750 align:center And there's ways that a tool might 00:45:56.750 --> 00:46:00.800 align:center be able to infer that context, but also 00:46:00.800 --> 00:46:03.350 align:center how do you make a tool if it is doing something 00:46:03.350 --> 00:46:05.450 align:center like reinforcement learning and learning 00:46:05.450 --> 00:46:08.810 align:center even like [INAUDIBLE] learning small samples that doesn't 00:46:08.810 --> 00:46:11.390 align:center learn that the day that I made a choice that I knew 00:46:11.390 --> 00:46:16.550 align:center was going to hurt was within my usual range of capabilities. 00:46:16.550 --> 00:46:18.170 align:center And we discussed this in the paper, 00:46:18.170 --> 00:46:20.420 align:center but thinking about the TikTok case 00:46:20.420 --> 00:46:24.080 align:center might be one where an AI tool might 00:46:24.080 --> 00:46:28.400 align:center be a really obvious answer for how do you classify motion 00:46:28.400 --> 00:46:29.480 align:center in videos? 00:46:29.480 --> 00:46:31.820 align:center But how do you provide a training set 00:46:31.820 --> 00:46:34.730 align:center of videos that make someone highly nauseous 00:46:34.730 --> 00:46:38.810 align:center and the costs of that algorithm being wrong, 00:46:38.810 --> 00:46:41.150 align:center which we know is going to happen, 00:46:41.150 --> 00:46:43.450 align:center are really, really high. 00:46:43.450 --> 00:46:45.010 align:center So there's some-- 00:46:45.010 --> 00:46:48.310 align:center I think chronic illness presents some interesting questions 00:46:48.310 --> 00:46:50.980 align:center to even more traditional AI landscapes. 00:46:56.140 --> 00:46:59.680 align:center LITANY LINEBERRY: For me there are some code 00:46:59.680 --> 00:47:02.720 align:center analyzing AI tools out there. 00:47:02.720 --> 00:47:09.490 align:center However, you run into a wall where your institution 00:47:09.490 --> 00:47:13.060 align:center has the honor code that you may possibly violate that. 00:47:13.060 --> 00:47:16.540 align:center So I would like to see maybe coming together 00:47:16.540 --> 00:47:20.590 align:center with institutions or in either the collegiate level or K-12 00:47:20.590 --> 00:47:25.720 align:center level and with a developer and developing some type of code 00:47:25.720 --> 00:47:28.480 align:center reader where it doesn't violate the honor code, 00:47:28.480 --> 00:47:32.570 align:center but it can help those that do have chronic illnesses, persons 00:47:32.570 --> 00:47:34.030 align:center with chronic illnesses. 00:47:42.870 --> 00:47:44.620 align:center BRIANNA BLASER: Katie brought up something 00:47:44.620 --> 00:47:45.700 align:center interesting in the chat. 00:47:45.700 --> 00:47:48.040 align:center This comes back to the notion of privilege. 00:47:48.040 --> 00:47:49.990 align:center I have the option to go to PT, which helps 00:47:49.990 --> 00:47:51.250 align:center put all the pieces together. 00:47:51.250 --> 00:47:53.560 align:center Even looking at the price of natural readers 00:47:53.560 --> 00:47:56.410 align:center many of these tools, including rest time, 00:47:56.410 --> 00:47:59.740 align:center aren't available to the vast majority of Americans. 00:48:02.440 --> 00:48:04.530 align:center I think that's an interesting point. 00:48:04.530 --> 00:48:07.050 align:center Even navigating the health care system 00:48:07.050 --> 00:48:09.810 align:center and figuring out how to get insurance to pay for things, 00:48:09.810 --> 00:48:17.260 align:center et cetera, as we all know, is quite difficult. 00:48:17.260 --> 00:48:19.330 align:center Are there any technologies that of 00:48:19.330 --> 00:48:23.680 align:center or use that are made for people with chronic illnesses, 00:48:23.680 --> 00:48:26.695 align:center but are hard to use or could be better? 00:48:33.330 --> 00:48:35.970 align:center SARAH COPPOLA: So one I've used that I've 00:48:35.970 --> 00:48:37.920 align:center abandoned this food tracking. 00:48:37.920 --> 00:48:40.710 align:center I have a bunch of food allergies. 00:48:40.710 --> 00:48:45.660 align:center And those-- but I'm sure they work for someone, 00:48:45.660 --> 00:48:47.160 align:center they don't work for me. 00:48:47.160 --> 00:48:51.750 align:center Also apps for celiac like finding food when I travel. 00:48:51.750 --> 00:48:55.167 align:center Those are actually useful for me. 00:48:55.167 --> 00:48:57.000 align:center And the app-- the thing I was thinking about 00:48:57.000 --> 00:48:58.500 align:center though when I saw this question it's 00:48:58.500 --> 00:49:02.820 align:center the technologies for diabetes care 00:49:02.820 --> 00:49:06.660 align:center have come so far for insulin pumps 00:49:06.660 --> 00:49:09.330 align:center that you still require a human in the loop, 00:49:09.330 --> 00:49:14.910 align:center but just I think that's a really cool example of technology, 00:49:14.910 --> 00:49:17.700 align:center high tech, that is improving people's lives 00:49:17.700 --> 00:49:19.995 align:center but requires a person to use. 00:49:19.995 --> 00:49:21.870 align:center And there's also really interesting questions 00:49:21.870 --> 00:49:26.940 align:center about who owns the data, who is going 00:49:26.940 --> 00:49:29.850 align:center through a medical provider, does the person who 00:49:29.850 --> 00:49:35.940 align:center is implanted into what control do they have over it? 00:49:35.940 --> 00:49:39.840 align:center I think I'd like to see more examples like that 00:49:39.840 --> 00:49:40.627 align:center moving forward. 00:49:43.307 --> 00:49:44.390 align:center KELLY MACK: This is Kelly. 00:49:44.390 --> 00:49:47.150 align:center Sarah, you beat me to it with tracking apps. 00:49:47.150 --> 00:49:49.640 align:center There are so many things where doctors are like, oh, 00:49:49.640 --> 00:49:51.500 align:center it'd just be great if you could track like your sleep 00:49:51.500 --> 00:49:53.240 align:center and your stress and your exercise and what you eat 00:49:53.240 --> 00:49:55.615 align:center and how much water it was and if it was a Tuesday or not. 00:49:55.615 --> 00:49:57.930 align:center And I'm like, that's way too much information. 00:49:57.930 --> 00:49:58.430 align:center I can't. 00:49:58.430 --> 00:49:59.300 align:center I can't do that. 00:49:59.300 --> 00:50:00.800 align:center That would just be my life, right? 00:50:00.800 --> 00:50:02.550 align:center Would just be putting things into the app. 00:50:02.550 --> 00:50:04.830 align:center So that's definitely one. 00:50:04.830 --> 00:50:07.130 align:center And then I think that there are some areas where tools 00:50:07.130 --> 00:50:08.490 align:center could just be better developed. 00:50:08.490 --> 00:50:12.020 align:center So for example, compression socks is kind of a weird one. 00:50:12.020 --> 00:50:15.015 align:center Where oftentimes compression socks 00:50:15.015 --> 00:50:17.390 align:center can be helpful for a lot of folks with chronic illnesses. 00:50:17.390 --> 00:50:19.340 align:center I feel like they're oftentimes-- 00:50:19.340 --> 00:50:20.870 align:center I feel like they come in two styles 00:50:20.870 --> 00:50:24.462 align:center they come in hospital, which is like beige and terrifying, 00:50:24.462 --> 00:50:26.420 align:center and like looks like you got them in a hospital. 00:50:26.420 --> 00:50:28.820 align:center Or like really obnoxious patterns. 00:50:28.820 --> 00:50:31.580 align:center And there's no professional middle ground for, oh, 00:50:31.580 --> 00:50:33.660 align:center like I need to go to a conference. 00:50:33.660 --> 00:50:36.830 align:center And I would like to look reasonably professional. 00:50:36.830 --> 00:50:38.747 align:center As well as the fact that compression socks 00:50:38.747 --> 00:50:41.330 align:center are perfect technology because some people who need them most, 00:50:41.330 --> 00:50:44.453 align:center like folks who have Ehlers-Danlos Syndrome, ADS, 00:50:44.453 --> 00:50:45.620 align:center I pronounced it incorrectly. 00:50:45.620 --> 00:50:46.790 align:center I apologize. 00:50:46.790 --> 00:50:49.140 align:center It can be really hard for them to put the socks on, 00:50:49.140 --> 00:50:51.182 align:center but it's really important to have them on, right? 00:50:51.182 --> 00:50:54.660 align:center So that technology is great and simple, which is nice. 00:50:54.660 --> 00:50:56.960 align:center But also still doesn't quite fit all of these cases. 00:50:56.960 --> 00:50:57.460 align:center Yeah. 00:51:00.528 --> 00:51:02.820 align:center EMMA MCDONNELL: I have to admit, my first reaction was, 00:51:02.820 --> 00:51:06.070 align:center what technology for people with chronic illnesses? 00:51:06.070 --> 00:51:09.390 align:center Then thinking about it a little more. 00:51:09.390 --> 00:51:11.670 align:center The heart rate tracking on my Apple Watch 00:51:11.670 --> 00:51:14.790 align:center is something that I use a lot to be 00:51:14.790 --> 00:51:18.120 align:center able to monitor POTS or check which 00:51:18.120 --> 00:51:20.820 align:center postural orthostatic tachycardia syndrome, which 00:51:20.820 --> 00:51:25.870 align:center is a most obvious tell is heart rate variability. 00:51:25.870 --> 00:51:29.460 align:center So sometimes being able to just gut check like, 00:51:29.460 --> 00:51:32.610 align:center OK, is that why I feel terrible right now? 00:51:32.610 --> 00:51:35.190 align:center Is a really useful tool. 00:51:35.190 --> 00:51:37.650 align:center But it's also a tool that is not designed 00:51:37.650 --> 00:51:40.650 align:center for the kind of tracking that I am doing. 00:51:40.650 --> 00:51:45.720 align:center I can't get that data easily into like this was a big change 00:51:45.720 --> 00:51:48.990 align:center or, hey, you're like quite a bit above your baseline right now. 00:51:48.990 --> 00:51:51.510 align:center And there might be tools I could hack 00:51:51.510 --> 00:51:54.630 align:center from exercise sides of things to do that, 00:51:54.630 --> 00:51:59.710 align:center but to design a tool that uses that kind of sensing. 00:51:59.710 --> 00:52:02.440 align:center I know a lot of folks do go out and seek 00:52:02.440 --> 00:52:06.010 align:center as a way to monitor and manage. 00:52:06.010 --> 00:52:11.360 align:center Having an accompanying designed app with that context of use 00:52:11.360 --> 00:52:12.650 align:center could be a really cool tool. 00:52:17.085 --> 00:52:17.960 align:center LITANY LINEBERRY: Hi. 00:52:17.960 --> 00:52:19.460 align:center So this is Litany. 00:52:19.460 --> 00:52:23.160 align:center For me I want to piggyback on Emma really quickly. 00:52:23.160 --> 00:52:26.960 align:center So I actually had to delete a heart tracking 00:52:26.960 --> 00:52:32.240 align:center app because it was doing the wrong thing, I guess. 00:52:32.240 --> 00:52:36.620 align:center The readings weren't-- they were different every time within 00:52:36.620 --> 00:52:40.400 align:center like the span of like 30 seconds. 00:52:40.400 --> 00:52:43.640 align:center So it was like maybe that's not correct. 00:52:43.640 --> 00:52:45.740 align:center And so that definitely. 00:52:45.740 --> 00:52:49.470 align:center And then also for me personally, I have a pacemaker. 00:52:49.470 --> 00:52:52.280 align:center And so I just got it replaced. 00:52:52.280 --> 00:52:56.360 align:center But my older pacemaker I found very inconvenient. 00:52:56.360 --> 00:52:58.670 align:center I had to download the app to my phone 00:52:58.670 --> 00:53:01.530 align:center and give permissions and things like that. 00:53:01.530 --> 00:53:05.450 align:center But then afterwards I had to make sure 00:53:05.450 --> 00:53:08.720 align:center that my phone was charged if I ever want to send data. 00:53:08.720 --> 00:53:10.760 align:center If I was having an issue I would have 00:53:10.760 --> 00:53:15.950 align:center to make sure that my Bluetooth was on and location 00:53:15.950 --> 00:53:20.480 align:center and Wi-Fi or mobile data on before I could send anything. 00:53:20.480 --> 00:53:22.640 align:center So making that a little bit more easier. 00:53:22.640 --> 00:53:24.020 align:center And I think they have. 00:53:24.020 --> 00:53:27.890 align:center They moved from that to having a machine, 00:53:27.890 --> 00:53:30.410 align:center a technology machine that you keep plugged in. 00:53:30.410 --> 00:53:31.460 align:center You push a button. 00:53:31.460 --> 00:53:34.340 align:center But even then if I go out of town 00:53:34.340 --> 00:53:37.640 align:center I would have to take the big thing through security 00:53:37.640 --> 00:53:41.210 align:center or I can't be gone more than a week away from it. 00:53:41.210 --> 00:53:44.780 align:center So improving that and being continuous and improving 00:53:44.780 --> 00:53:46.000 align:center that type of technology. 00:53:51.680 --> 00:53:54.020 align:center EMMA MCDONNELL: There's a really interesting space where 00:53:54.020 --> 00:53:56.420 align:center we started this paper with we have to think about things 00:53:56.420 --> 00:53:59.150 align:center outside of medical context, but there are so 00:53:59.150 --> 00:54:03.920 align:center many medical tools that with accessibility lens 00:54:03.920 --> 00:54:08.435 align:center might still be a way forward to think about both. 00:54:10.755 --> 00:54:12.880 align:center SHERYL BURGSTAHLER: Hi, this is Sheryl Burgstahler. 00:54:12.880 --> 00:54:15.280 align:center I just have a question as we get toward the end of this, 00:54:15.280 --> 00:54:21.340 align:center is so much uses the medical model or functional limitations 00:54:21.340 --> 00:54:23.170 align:center model or so to provide access. 00:54:23.170 --> 00:54:25.090 align:center But the universal design part would be 00:54:25.090 --> 00:54:26.830 align:center what could answer the question, what 00:54:26.830 --> 00:54:29.080 align:center could a department or an institution 00:54:29.080 --> 00:54:33.220 align:center do as far as their broad policies and resources they 00:54:33.220 --> 00:54:38.280 align:center provide to everyone that would benefit you? 00:54:38.280 --> 00:54:40.300 align:center KELLY MACK: Sarah, do you want to start? 00:54:40.300 --> 00:54:43.683 align:center I think we have the same one. 00:54:43.683 --> 00:54:45.850 align:center SARAH COPPOLA: Well, we only have four minutes left, 00:54:45.850 --> 00:54:49.290 align:center so that was dangerous, Kelly, since this is sort of where 00:54:49.290 --> 00:54:51.180 align:center my research area has gone. 00:54:51.180 --> 00:54:54.820 align:center I think universal design gets us part of the way there, 00:54:54.820 --> 00:54:57.630 align:center but it doesn't get us all the way there, right? 00:54:57.630 --> 00:55:01.780 align:center And so thinking about variability. 00:55:01.780 --> 00:55:06.210 align:center So having asynchronous options for work and for school. 00:55:06.210 --> 00:55:07.330 align:center That doesn't work for me. 00:55:07.330 --> 00:55:09.900 align:center I teach a 6:00 to 10:00 class, it's really hard for me 00:55:09.900 --> 00:55:13.063 align:center to get coverage if I'm ill on that day that I teach. 00:55:13.063 --> 00:55:14.730 align:center And if I miss that class, that's a tenth 00:55:14.730 --> 00:55:15.945 align:center of instruction per quarter. 00:55:18.520 --> 00:55:26.050 align:center The having seamless hybrid so the technology exists, 00:55:26.050 --> 00:55:27.170 align:center it works. 00:55:27.170 --> 00:55:29.620 align:center I don't have to turn three things on. 00:55:29.620 --> 00:55:31.990 align:center It just automatically works. 00:55:31.990 --> 00:55:34.480 align:center Or there's a person who is a staff 00:55:34.480 --> 00:55:38.590 align:center member whose job and expertise is in making that work. 00:55:38.590 --> 00:55:41.410 align:center Those are my big asks. 00:55:41.410 --> 00:55:45.650 align:center There's other things that are frustrating like temperature 00:55:45.650 --> 00:55:46.500 align:center regulation. 00:55:46.500 --> 00:55:50.600 align:center So I can't tell what temperature my office will be. 00:55:50.600 --> 00:55:54.890 align:center Normally it's 80 degrees, today it's about 68. 00:55:54.890 --> 00:55:56.750 align:center And so I have all this extra clothing, 00:55:56.750 --> 00:55:59.540 align:center I have a heating pad for now. 00:55:59.540 --> 00:56:01.550 align:center But in the summer we have no air conditioning. 00:56:01.550 --> 00:56:05.180 align:center And so my office was hitting 90 degrees most days, which 00:56:05.180 --> 00:56:08.120 align:center is unsafe, it's above the threshold 00:56:08.120 --> 00:56:11.600 align:center of safety for OSHA standards. 00:56:11.600 --> 00:56:14.030 align:center But for people who are chronically ill who really need 00:56:14.030 --> 00:56:17.660 align:center to manage their temperature, this 00:56:17.660 --> 00:56:21.470 align:center is just a really hostile work environment at baseline 00:56:21.470 --> 00:56:22.640 align:center that no one could-- 00:56:22.640 --> 00:56:24.560 align:center no one who had temperature sensitivity 00:56:24.560 --> 00:56:27.030 align:center could work in my office. 00:56:27.030 --> 00:56:32.518 align:center And so I think there's just a lot. 00:56:32.518 --> 00:56:34.310 align:center And that's before even thinking about COVID 00:56:34.310 --> 00:56:37.580 align:center and how ableist it is that we can't have mask mandates. 00:56:37.580 --> 00:56:39.470 align:center We can't require masks in our classes, 00:56:39.470 --> 00:56:41.692 align:center even when we have someone who's going through cancer 00:56:41.692 --> 00:56:42.650 align:center treatment in our class. 00:56:42.650 --> 00:56:45.830 align:center I'm still not allowed to request masks 00:56:45.830 --> 00:56:48.350 align:center and so or if I were going through cancer treatment, 00:56:48.350 --> 00:56:51.990 align:center I'm not allowed to request masks in my own office. 00:56:51.990 --> 00:56:56.630 align:center And so I think universal design has gotten us some of the way, 00:56:56.630 --> 00:56:58.230 align:center but there's just so much more. 00:56:58.230 --> 00:57:00.500 align:center And the ways that it hasn't gotten 00:57:00.500 --> 00:57:05.060 align:center us there or the sort of chronic illness type things we've 00:57:05.060 --> 00:57:06.990 align:center been talking about today. 00:57:06.990 --> 00:57:07.490 align:center OK. 00:57:07.490 --> 00:57:08.657 align:center I left you 2 minutes, Kelly. 00:57:12.970 --> 00:57:14.350 align:center KELLY MACK: No, you covered it. 00:57:14.350 --> 00:57:16.180 align:center Litany, I'm passing it to you. 00:57:19.195 --> 00:57:20.070 align:center LITANY LINEBERRY: OK. 00:57:20.070 --> 00:57:20.920 align:center Sorry, real quick. 00:57:20.920 --> 00:57:23.410 align:center So for me. 00:57:23.410 --> 00:57:26.550 align:center I will also say just having the conversation, 00:57:26.550 --> 00:57:32.250 align:center but also like for me we just renovated our building. 00:57:32.250 --> 00:57:37.620 align:center And to my surprise, they have a hand motion sensor 00:57:37.620 --> 00:57:38.790 align:center to open the door. 00:57:38.790 --> 00:57:41.320 align:center So now I don't have to pull it open, 00:57:41.320 --> 00:57:44.580 align:center especially again due to my chronic illnesses sometimes 00:57:44.580 --> 00:57:47.680 align:center I just don't have any or I can't do certain things. 00:57:47.680 --> 00:57:51.810 align:center So even pulling open a heavy door really takes it out of me. 00:57:51.810 --> 00:57:54.000 align:center So now I just need to wave my hand, 00:57:54.000 --> 00:57:55.630 align:center but even that's not perfect. 00:57:55.630 --> 00:57:59.220 align:center Sometimes it takes two or three or four tries to get the work, 00:57:59.220 --> 00:58:00.540 align:center but it does work. 00:58:00.540 --> 00:58:04.440 align:center But also looking at what can be done within the classroom. 00:58:04.440 --> 00:58:09.180 align:center And talking to professors, the instructors 00:58:09.180 --> 00:58:12.760 align:center about how can we make this easier for you? 00:58:12.760 --> 00:58:15.780 align:center And even if they don't know about your disability 00:58:15.780 --> 00:58:19.770 align:center or your chronic illness, still maybe do like a survey 00:58:19.770 --> 00:58:23.610 align:center of how can this work or how can we improve? 00:58:23.610 --> 00:58:25.095 align:center And then go from there. 00:58:27.235 --> 00:58:28.110 align:center EMMA MCDONNELL: Yeah. 00:58:28.110 --> 00:58:30.630 align:center With an eye on the 2:00 on the dot 00:58:30.630 --> 00:58:33.780 align:center and wanting to make it quick, what we Kelly and I actually 00:58:33.780 --> 00:58:37.920 align:center do in the paper address this a little bit if people 00:58:37.920 --> 00:58:40.330 align:center wanted to read a bit about it. 00:58:40.330 --> 00:58:43.410 align:center But one of the things we were thinking about in terms 00:58:43.410 --> 00:58:45.990 align:center of universal design is that bringing chronic illness 00:58:45.990 --> 00:58:48.810 align:center into the space might make us have 00:58:48.810 --> 00:58:54.550 align:center to admit that one space at one time isn't the answer. 00:58:54.550 --> 00:58:58.950 align:center And so allowing for multiple spaces, multiple times, 00:58:58.950 --> 00:59:00.030 align:center asynchronous access. 00:59:00.030 --> 00:59:03.390 align:center There are access conflicts that can occur, especially 00:59:03.390 --> 00:59:04.920 align:center when you have multiple chronically 00:59:04.920 --> 00:59:09.960 align:center ill people in the same space that aren't always resolvable. 00:59:09.960 --> 00:59:14.520 align:center So maybe expanding the axes on which 00:59:14.520 --> 00:59:15.780 align:center we can universally design. 00:59:19.470 --> 00:59:20.640 align:center BRIANNA BLASER: Excellent. 00:59:20.640 --> 00:59:23.130 align:center Thank you so much to all of you for joining us and sharing 00:59:23.130 --> 00:59:24.120 align:center your thoughts. 00:59:24.120 --> 00:59:26.520 align:center In the chat I just saw some great comments 00:59:26.520 --> 00:59:28.200 align:center about temperature regulation, but also 00:59:28.200 --> 00:59:30.630 align:center the return to normal and how problematic that is. 00:59:30.630 --> 00:59:32.340 align:center I think there are so many topics rich 00:59:32.340 --> 00:59:35.350 align:center for conversation here that we could continue talking about. 00:59:35.350 --> 00:59:39.310 align:center So I did drop a link to the paper again in the chat. 00:59:39.310 --> 00:59:41.525 align:center I also dropped a link to an evaluation form 00:59:41.525 --> 00:59:43.650 align:center if you all can take a minute to fill that out, that 00:59:43.650 --> 00:59:44.275 align:center would be great. 00:59:44.275 --> 00:59:46.800 align:center It benefits our project. 00:59:46.800 --> 00:59:49.290 align:center And thank you again for joining us. 00:59:53.780 --> 00:59:55.170 align:center KELLY MACK: Thank you.