The following interview was conducted in 2019 between our researcher Matthew Jacobs and Allison K. Allen, a PhD student at the Department of Psychology, University of California, Santa Cruz. Allison does research in consciousness, perception, attention, and agency. You can find Allison’s ResearchGate profile here.
Listen to part 2 of the podcast here:
Interviewer: Matt Jacobs [M]
Interviewee: Allison Allen [A]
Editing/Transcription: Eric Kellenberger
M: I'm going to shift gears a little bit and ask questions that are more about identity. A term that I heard you use earlier is disability.
A: Yeah.
M: Do you consider yourself having a disability?
A: Not anymore. I did consider myself disabled when I had that condition, but my identity now is around being chronically ill. I still function. I don't really know what the distinctions are, but the last thing I read defined disabilities more like visual impairments, hearing impairments, etc. I don't have that anymore, so I think chronic illness is more appropriate.
M: Mhm. But at the time, you did identify as disabled?
A: Yeah.
M: What does a label like that feel like that?
A: I think for me it was just a pragmatic label. To be able to say I have needs that are outside the norm. Even though the word disability is too ambiguous to define what that is, I think it helps adjust people's schemas a little bit in terms of what to expect, instead of those typical assumptions you have when interacting with people. You need to withhold those and hear out what my unique needs are.
M: How do you feel like that label influenced you socially?
A: For me it was really helpful to--I'm kind of a shy person when it comes to strangers. I think it helped give me a little bit more agency in saying, "I need help." Because there was no other way I was going to get things done. It's just like, I have a disability. Help. Strange person.
M: If I'm understanding you correctly it was almost a source of strength?
A: It was helpful to get my needs met. Yeah.
M: Are you familiar with models of disability?
A: [No.]
M: Okay. I will do a quick lesson and ask a question afterwards but if you don't know that's fine.
A: Mhm.
M: There's three models of disability. There's a medical model that says if you deviate from a typical--one healthy body, then there's something wrong, and you have a disability. There's a social model which just says every person exists and disability comes from social barriers, the way the environment is set up.
A: Mmmm.
M: If you're disabled it's because the environment fails to meet your needs. Then there's the functional model of disability, which says you are only disabled if it prevents you from working and having a means of income. I was going to ask if one of those resonated with you more, or if one of those felt more real to you?
A: To me I think I strongly resonate with the social model. I think disability is a social construction that's relative to the environment that's in place already. The environment we have in place is based on certain assumptions of what type of a body you're inhabiting. And historically and medically that body is a white man in his 30s. [Laughter] Or 20s, I don't know.
M: [Laughter]
A: Looking at you.
M: [Laughter] Looking at me.
A: You did this! But that's the model of health even in the medical field, so I think that that translates into how the world is structured.
M: How do you interpret the world--which model do you think most people operate by?
A: Like what are their assumptions?
M: Yeah, are they assuming it from a medical, a functional, or a societal standpoint?
A: I think it depends on the person, obviously. I don't have a strong answer but I get the sense that it's not universal either way. That the way a particular individual would fall would depend on the context they're in. So for some people it might be a more functional one, especially if you're more closely dealing with the needs of disabled people. But I'm thinking of people, like my mom or my grandma, what does my grandma think of disability? I think they'd have a more medical model.
M: Mhm.
A: Yeah.
M: If I'm understanding it really matters where you are at, which model is going to be your assumption?
A: Yeah, but are you asking as a society do we have one of those?
M: Um, I think I was being intentionally vague and just asking about your experiences with other people. If you felt like they were in line with your idea, or if they differed in some ways.
A: Yeah, I've definitely encountered people in all three categories. Yeah.
M: Okay. How has your experience been interacting with someone who takes a different approach to you?
A: Sometimes frustrating. In some cases, there are different expectations about the role of the people around the disabled person. In one case, there's more of an expectation that you're part of the environment. You have more power to change it. And in other cases like in the medical case, it's treated more as inherent to the disabled person and not something you can fix. You have less to do with. On the social model, that is probably better for getting the people around you to do things, to help, to listen to your needs--opposed to the medical model where it's like, you have an issue and that's separate from me.
M: Mhm. In continuing with the line of other people's perspectives, how do you think narratives around visual impairments and blindness in media--
A: --oh-- [Laughter]
M: --and people you know, how much do you feel like--is there a particular instance where you feel like they have either lined up or divided?
A: Yeah, so I'm going to answer in two ways. First I'm going to talk about how blindness is depicted in media, and I'll talk about what assumptions I realized my family had about blindness. So in media, a really common depiction of a blind person is a blind person touching their friend's face to figure out what they look like.
M: [Laughter]
A: [Laughter] This idea is absurd.
M: I've seen that in a lot of movies.
A: It's completely ridiculous, yeah I mean, when I'm blind I can't see your face. But after that I just don't care what your face is. And touching it is not going to give me any extra information about what you look like. It's just going to make everyone uncomfortable. So don't assume anyone blind is going to want to go touching faces. That's just such a common absurd one. And one I encountered with my family is, once I had the label of blind, they had certain assumptions about what I could and could not do. Even once I was blind, I was navigating without a cane of any sort. I just sort of walked around without one. And I went hiking with my sister. We specifically went hiking somewhere where the road is paved so it's easier to avoid twisting an ankle, if you have a problem seeing depth. Usually when I would go hiking the texture of the dirt all sort of looks like one thing. It's hard to determine what's depth and what's just a shadow. So when we would go hiking, I remember there was a situation where there was a biker coming up behind us, like someone on a mountain bike. I could hear the bike coming, but my sister, rather than waiting to act on my own, just like grabbed me and pulled me to the side of the road. [Laughter] I was like, I can hear the bike. I know what's happening.
M: [Laughter]
A: Once she did that, I was like "I can take care of myself." I've been walking around blind for quite a while, I can navigate it fine.
M: Does that sort of thinking come from the misconception that blindness means you virtually see nothing? Correct me if I'm wrong, but I believe there's a misunderstanding that most people still have some vision.
A: Yeah, I think there's two misconceptions there. The first is just a general misconception about disability, and that's that the nondisabled person has to intervene and take care of you. And I think the other assumption is yeah exactly what you said, that I think people assume if you have the label of blind, what you're experiencing is just pitch blackness. But the experience of blindness is pretty broad. I think in my case I was considered not a severe case of blindness. Even now I can still see shapes in my blind eye and get the gist of, that's a person, that's a tree, that's where the road is. That's a car. In a lot of cases I still have good object-level perception. It's just the detail is not good at all and the contrast is bad, and the depth is not very good. But I know for other people there's a whole range of what being blind means.
M: Mhm.
A: Some people can only see motion; some people really don't see anything. There's a really wide variety of blindness in what you can still see.
M: Mhm. That makes a lot of sense. It's a variety of perspectives, it's not uniform.
A: Yeah, so if you're ever interacting with a blind person, it might be good to ask what their particular needs are, cause every person has different needs. Yeah.
M: I've heard that phrase with Autism specifically that if you've met someone with Autism you've met one person with Autism. Would you say that sentiment holds true with visual impairments?
A: Yeah, I think in some cases there are things that all of us will need help with. But for other things, it can be very individualized. I think in general one assumption is that we're all going to have trouble seeing details. We're not going to be able to see faces. I might be wrong. I think in some cases it's hard to see faces or details.
M: I mean, that makes sense at least at face value at the very least, from my limited perspective.
A: I'm mostly assuming that because the test for blindness tests for acuity of detail. Minimally that's what you're missing, an acuity of detail.
M: Okay. And in keeping with sharing more of what it's actually like to have visual impairments, one question we came up with beforehand that I thought was very interesting: are there everyday activities that just weren't reliant on vision at all?
A: Um, showering! [Laughing]
M: [Laughing]
A: Aren't reliant on vision at all. It depends! I mean eventually you can make it so you don't have to be reliant on vision at all. Doing my makeup, I was still doing my makeup and I didn't really rely on vision much. I could probably do my makeup with my eyes closed at this point.
M: That's very impressive.
A: Yeah, I'm trying to think of things that I did without relying on vision. Um, but I think in everything I was doing I still relied on what vision I had. And I think a lot of blind people do that. Whatever vision they still have, they use that as much as they can to help them function. It's not like you ignore what function you have.
M: Mhm. But I think the question is just getting at, were there things that were surprisingly unaffected by vision impairment?
A: Oh yeah! This reminds me of another rumor about being blind is that your other senses become heightened. No they don't. [Laughter]
M: [Laughter]
A: Those were unaffected by going blind. My partner joked that I was going to become like Daredevil.
M: [Laughter]
A: Unfortunately that never happened.
M: Unfortunate. That'd be so cool.
A: Yeah, so that doesn't happen, at least not for me, maybe I'm just really lame.
M: [Laughter]
A: But yeah I think that was something that stayed the same. I think everything else changes in some way.
M: Most everything, so everything kind of shifted in its own way, is what I'm understanding.
A: Yeah, because I'm thinking about my daily routine and getting dressed relies on some degree of vision, navigating relies on some degree of vision. If I'm spending the day reading and coding, all of that I'm relying on what I have left to get through the day.
M: Mhm. So we've talked about your experiences, we've talked about some misconceptions. We've talked about where we think some of those misconceptions come from. Do you think that it's important to have better education on these topics? Err, what do you think is the quality of education on these topics going out to the general population?
A: General population it's not super great, because it's mostly relying on those media representations, of Daredevil and, I don't remember where the face touching comes from. But it's getting better because of Youtube. At least for me, I don't know I've only ever been blind around the Youtube time period, but that's my suspicion. Because maybe I don't know a blind person here, but I was able to go on Youtube and find blind Youtubers. Even very famous blind Youtubers, talking about very distinct experiences. And that was really helpful, to get a sense of how similar my experience was to other people, how different it was, what strategies they had for navigating the world broadly.
M: And what I'm picking up is that having first hand self-advocate experiences was what was important.
A: Yeah, I think every person I saw on there, part of what they were doing on Youtube was educating people, because there's clearly a need. It was really common to see things like blind people explaining what they can see, still. Blind people explaining how they still have relationships. Explaining how to do makeup. I watched some blind makeup tutorials.
M: That's incredible.
A: Yeah, and just other things like that.
M: To make it broader, do you feel that there is a severe lack of education around these things?
A: Yeah, definitely. Yeah.
M: And just to make sure I'm understanding, where do you think the education should come from?
A: In an ideal world, it would just be built into our ideology. It would just be--not specifically education on "this is the experience of blind people" but like a built-in general ideology of what it means to be differently-abled or have a different way of thinking. Being neuro-atypical as we're called now, be more assumed to be within the spectrum of human experience rather than being treated as other.
M: Mhm.
A: Because I think with that would come more education. Just naturally, because if it's built-in to the ideology then you're not making an assumption that it's that 20 year old white man. You can start to go into the nuances of what it means to be human.
M: Do you think that that connects directly to specifically a more social model of disability?
A: I think so. Because that means it's up to the social ideology to change so that the social things that flow from that--the way institutions are structured--hopefully those would change too.
M: Mm. Are you familiar with the idea of universal design?
A: Vaguely. I think I've encountered it once or twice.
M: The idea of universal design is that instead of building something for the majority and then trying to find adaptations for people with any sort of difference, is that you should build it ground up, for everyone, and thinking through using aspects of--so maybe some aspects are more geared towards someone with a difference but building them in a way that benefits everyone.
A: Yeah.
M: The idea of like, having curb cuts was designed originally for wheelchairs. Although, if you have a stroller, it's super helpful. If you have a shopping cart it's super helpful. If you are using universal design for learning, then you're teaching through different types of reinforcement through kinesthetic learning, through kinesthetic, auditory, visual, that even if we're trying to make sure each type of learner is hit. if each learner is also having it reinforced several different ways so they are benefiting from it.
A: Yeah.
M: I was wondering your thoughts on Universal design and if it matches up to your beliefs?
A: Oh yeah, absolutely. If you have a broad social ideology that isn't assuming a particular body, then you do a universal design. I think that that would flow from that kind of an ideology.
M: mhm. I think so as well. I think we've covered most things. The last thing that I wanted to talk about your experience was is kind of more related directly to the lab, is assistive technology, and your experiences with them. Because that is what largely what this lab is for and developing and trying to find solutions with larger social impact through design and technology. So the first question is, what phone do you use?
A: [Laughter]
M: Just honestly.
A: Um, it's an iPhone 4, from 2010. [Laughter] But it has amazing accessibility settings on it still. It got me through blindness.
M: Wait, so when did you get that phone again?
A: Before I even had uveitis.
M: So you've had that phone for a long time!
A: [Laughter] Longer than I've had uveitis.
M: Woww. That's a while. And the settings--can you talk about some of the settings that have been helpful to you?
A: The two main ones that I used were inverted contrast, or inverted color setting. What that does is that instead of having a white background with black font, you have a black background with white font. The reason this was helpful for me was that with cataracts, the lens thickens and becomes milky, and so the light which is sort of spread out, and so that white background would blur into the text. But if I inverted it then the text would be crisper and I could actually see it. Then I used the size settings to make the font as large as I could. Yeah.
M: So those were the main features?
A: Yeah.
M: And through those features you were able to fully access your phone?
A: Until I was blind. And then it also has a magnifying feature you can set up so that if you tap with three fingers it will zoom in for you and have like a close-in magnifying glass built in.
M: Mhm. Did you use any sort of auditory features?
A: No, I think I tried them and they were sort of clunky for me.
M: Okay. They didn't work. Do you remember what particularly was clunky about them?
A: So they tend to read every single piece of text on a page. Sometimes it's not coherent.
M: Yeah. That makes sense.
A: [Laughter] Yeah. The magnifier was good enough that I was like it's more reliable to get the information.
M: If I could reframe that problem, the auditory system was reading everything when it should be prioritizing what it reads and what order it reads it.
A: Yeah, yeah. In my experience across other technologies that has been an issue. Automatic reading systems don't know how to prioritize, or in the particular programs I was using, they didn't know how to prioritize information. They just read you everything.
M: So that would be a particular failure of adaptive tech right now, the failure to prioritize.
A: Yeah, because it can be confusing too if it's reading something in a header or a footer, and not a part of the text. It seemingly pops out of nowhere, so you don't understand the flow.
M: That makes a lot of sense. I also know you use an Apple laptop. Was that purposeful?
A: No! That was by a really fortunate accident. I got that initially because my advisor had a similar laptop. I was like, if you think it's good then I'll use it. But it ended up being really lucky because I have a PC, not a PC, a--
M: --a windows machine?
A: Yes! A windows laptop machine at home. And the accessibility on that is very bad. But this Mac has very similar settings to what my iPhone has, so I was able to increase the font size, increase the mouse size. It has this really nice setting where if you jitter the mouse the cursor gets big so you can see where it's at. And inverting the contrast.
M: That's so creative. I like that the jittering of the mouse makes it larger so that it's easier to identify.
A: Yeah, because sometimes it can get lost in the--
M: --ethers of the screen.
A: Yeah, exactly.
M: No, that makes sense. You mentioned Windows being particularly bad. Do you remember what made it difficult to use?
A: Yeah. It just didn't have a clear accessibility area. Or I think it does. Maybe I'm wrong. It's been a long time since I've used it. But I remember it being hard to navigate the accessibility settings, and it didn't have an inverted contrast setting that was universal. It was just for the Windows aesthetic, so like the borders, rather than being across all of the text on the screen.
M: And so that makes it not usable?
A: Yeah, it basically made it not usable for me. Yeah.
M: I feel like that's a pretty cheap thing for Microsoft to fix.
A: Yeah, it would be really easy.
M: I feel like that's a...filter.
A: Yeah. [Laughter] It would be pretty easy to fix. I think they did have like--you can change font sizes and the sizes of icons, but that's sometimes not enough.
M: In your personal experience, Apple has just taken it away in terms of tech?
A: Yeah. At a certain point, it was all I could use.
M: Okay. That is a really important quote.
A: Yeah.
M: I feel like that's a pretty powerful thing to say about a certain technology, about Mac.
A: One of the additional perks to it too, besides from it's particular settings, is how easy it is to navigate to the accessibility screen in the first place. One of the downsides to the inversion thing is that it also inverts pictures. If I want to see what pictures look like I have to go back and change that, but it's super easy if I have to flip back and forth between using it for text and for pictures, and so it made it, like, thank you Apple.
M: Yeah.
A: So good. Such a good design.
M: That must feel really relieving to have a company build products that are easy for you to use.
A: Yeah. I wouldn't have been able to function without it.
M: That's truly incredible.
A: Yeah. I mean academically I wouldn't be able to function. [Laughter] On the internet or computer.
M: Yeah, but I mean, I have to ask even outside of academia, don't you use your phone and your laptop quite a bit?
A: Yeah.
M: Or am I assuming?
A: No, I do. Yeah, yeah.
M: We've talked about hardware, but have there been other, let's say, apps for your phone that have been particularly more accessible or not accessible.
A: So, this one's pretty tricky because my phone's so old that it can't handle apps very well.
M: Oh okay. [Laughter]
A: So not for my phone. But I did get some software from the Disability Resource Center called Kurzweil, maybe Kurzweil [pronouncing with v instead of w], if it's German, I don't. It's basically a program that reads pdfs for you. It will go through and convert it so it can understand what the text says, so that I can have it read out loud for me if I need it to be read out loud.
M: That's incredible. I mean speaking of universal design, I would love that.
A: Yeah. The only downside is that the menus aren't--maybe there's a way to navigate that if you're fully blind, but at a certain point I had to rely on my memory of what information was where in the File, Edit, drop down boxes to do certain things.
M: Mhm.
A: But once it's set up it's really good for just reading things to you.
M: That's incredible. I would love that while I'm driving, because if I'm stuck in traffic for over an hour--
A: [Laugher]
M: --I could be going through all these different papers.
A: Except that it's still kind of a robot voice.
M: Okay.
A: That's the biggest downside to these technologies. The voices aren't--they're better than they used to be but they're still a little bit robotic.
M: Mhm. I've heard that complaint specifically in talkers and AAC devices, that people don't want to sound robotic, so I wonder if the next movement, and I would love your opinion on this, if there should be a huge push for--for example, Alexa's voice from Amazon--that's an open API.
A: Mmmm.
M: Developers can just use that. I'm sure they have to pay Amazon. Or Google has more naturalistic voice AI systems that we should really be working on getting those into more products to help promote more of a human feel to these things.
A: Yeah, I think it would be helpful because, not just to make it sound like a human voice reading something, but ideally for it to have enough knowledge about content, the content to know when to change its tone to indicate it's asking a question, or that it's indicating sarcasm, or indicating it's a joke. It just doesn't have that dynamic skill.
M: Skill. And that would be something that would be very beneficial?
A: Yeah, I think it would reduce the cognitive load that it takes to interpret what the thing is saying. Because if it's just reading everything monotone you have to do a little more mental work to figure out what the author meant to say. Like is the author telling a joke right now? Was this a question?
M: That makes a lot of sense. Is there any other technology you've interacted with that's been, either like Apple where it's been super intuitive and easy to use, or perhaps like Windows where it's been very difficult to navigate for certain reasons.
A: Let me think. Oh, keyboards were a little bit of an issue. At a certain point, I had to rely on the fact that my keyboard had a backlight to see what the letters were. Not that I was going to look at the keyboard every time, but just to orient onto the keyboard.
M: Mhm.
A: And for keyboards that didn't have that, it sometimes would take me a really long time just to guess what I was typing if I needed to maybe put in a password or web address into a computer that wasn't mine.
M: That's so interesting. That's probably something that I wouldn't have thought of.
A: Yeah. It's like a little thing that can make a big difference. I'm trying to think if there's anything else but.
M: I was just going to say again something that's not that hard to implement into keyboards now, like with LEDs and so forth, very cheap, it could be a more universal feature.
A: Yeah. Um, I can't think of anything off the top of my head besides from websites. Many websites were not super accessibility friendly. And in particular, I would have to zoom in to websites a lot, and sometimes websites just cannot--they're not designed to handle that. Certain functions get lost, certain functions were unnavigable. For example, websites with a lot of ads, if I zoomed in too much I would just get a full screen of an ad and I'm like, I can't, I don't know how to exit out of this, I can't see the text behind it. So eventually, certain websites I just had to never use.
M: Are there examples of particularly bad websites that come to mind?
A: Not off the top of my head, but some of the ones with menus that range across the top in sort of a bar--sometimes those just get collapsed if it doesn't resize with the zoom. Some of them did and some of them would just be lost. It would take up the whole screen, maybe, so you can't read anything below, that you're trying to scroll beneath it. In other words what happens is I would zoom into the menu but if the menu is a bar, the bar menu takes up the whole screen so you can't see the content of the website below the bar, as an example.
M: That sounds very frustrating.
A: Yeah, so it just made some websites hard to use or unusable.
M: Was there any website that stood out as particularly really easy to navigate?
A: Reddit!
M: Reddit.
A: Yeah...
M: Interesting.
A: Shout outs to Reddit. Because it's mostly text-based. And so it was--it's kind of like an old minimalistic design as far as like its interface, so it's really good for zooming in on. Basically just like simpler websites in general have that benefit. Google, Gmail, was pretty good. Google was pretty good. NPR, like some of the news websites I used were pretty good. YouTube got tricky, because sometimes the videos would get kind of weird, like sizing, yeah.
M: And YouTube's so big, I feel like they should be taking these things into account.
A: Yeah. It wasn't impossible. Just a little clunky.
M: Okay. is there anything about your experiences that I have not asked about that you would like to share?
A: Um, I don't know about me in particular. I think the main thing to me that I would want for people to think about generally is that most of us will be disabled at some point in our lives. It's really more universal than I think we think it is. I think when we're young and healthy, it's something that happens to other people. But at some point, I think most of us will experience disability in one way or another, like losing vision when we're older, hearing when we're older. Etcetera.
M: Mhm. Thank you so much.
A: Yeah! Thank you!