Living with Visual Impairment: Podcast Part 1/2

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 1 of the podcast here:

Interviewer: Matt Jacobs [M]

Interviewee: Allison Allen [A]

Editing/Transcription: Eric Kellenberger

M: Hi Allie, how are you doing today?

A: Hey Matt! Pretty good.

M: Do you want to tell me a little about yourself, what you're doing right now?

A: Yeah, so right now I'm in my fourth year of my PhD program at UC Santa Cruz. I'm trying to understand how our perceptual system makes sense of ambiguous information out in the world, and in particular, we know generally that there are ways that different "top down" systems can affect how we interpret ambiguous information. Some examples of top down systems would be past knowledge, previous experience, particular biases we have. My research really centers on exploring voluntary control and how voluntary control can alter what we see or what we think we see.

M: That is really cool. What are the implications of understanding voluntary control?

A: Well, one of the main implications is to understand to what extent agency interacts with "raw" sensation. There's some debate in the field right now about to what extent sensation is separate or distinct from cognitive mechanisms and to what extent it is influenced by them. And so some people are actually skeptical about this idea that you can have direct top down control, and that instead of actually controlling what you see is that there's instead some sort of after-the-fact interpretation where you think you controlled something but you didn't actually.

M: That is very interesting. So talking about that, I remember reading an Oliver Sacks book where he talked about how if at the beginning of a race you fire a gun, the time it takes for you to get running is faster than your perception of that event, but you probably have some top down influence that rearranges things so that it feels like a continuous experience. Is that related?

A: A little bit. The fact that you're acting beforehand suggests that the brain is processing things faster than you can consciously experience it. You can hear the gunshot and act appropriately by jumping into the water to begin swimming. But then those later systems do a sort of interpretation and synthesis that's on a little bit of a slower time-scale than the action. There's some top down stuff involved in that interpretation.

M: Okay. We're here today to talk about your experiences with visual impairment as well as your interactions with different technology, with society, and give you a chance to be a self-advocate for your own experiences and what people should be knowing about these things. Let's start with: where did you grow up?

A: I'm originally from this sort of suburban small town east of San Diego city. It's sort of a generic town. There's like a rodeo and Dairy Queen and Jack In The Box, and that's about it.

M: [Laughter]

A: It's not a very exciting place.

M: Do you have a memory from your childhood that jumps out at you?

A: I really loved playing softball.

M: You loved playing softball? Okay.

A: Yeah. I started playing softball when I was in fourth grade and I played up until they basically kicked me out of the league for being too old. I really loved it; I found out pretty quickly that I was a skilled batter, and so I liked honing that craft, which of course relies on pretty acute visual skills.

M: Yes.

A: But I also played so long that I eventually learned how to play every position on the field. I learned how to pitch; I learned how to catch. But I really like catching, because they're sort of the silent leaders of the game. They tell the pitcher what to do but it looks like the pitcher is doing all the work.

M: [Laughter]

A: I like that, I like secretly running things.

M: That's fun. I remember you talking to me a little bit about enjoying nature and critters and things? When did that start?

A: I don't know actually. Back as far as I can remember I've been obsessed with small, living things like insects, ants, worms, especially anything I could dig up in the dirt. I was intrigued by those things. I mean I never pursued it in a real sense outside of pulling things out of the dirt. [Laughter]

M: [Laughter]

A: And enjoy looking at them. Even to this day if I find a picture of a bee that is really zoomed in--I'm just really happy looking at zoomed in pictures of insects. I just find it really fascinating.

M: That is really cool.

A: Yeah.

M: Getting more on topic--how old were you when you started having visual impairments? Was it something your whole life? Was it something later on?

A: I originally noticed issues when I was-- It was like 2011. I'm 34 now, I'll let somebody else do the math. Or I turn 34 very soon, and this is the year 2020.

M: Okay, so that was 9 years ago. Relatively recent.

A: Yeah, I think I was about 25. 25 or 26.

M: What did you notice?

A: Visual Impairment, really rapid visual impairment is how I became diagnosed with the condition that I have. At first I wrote it off as natural gradual visual impairment, but eventually I realized something was wrong because my vision was getting really cloudy. I had a lot of floaters. It was really blurry. I had an extreme sensitivity to light, suddenly. I told a nurse about my symptoms, and they were like, "There's something wrong. You need to go see a doctor."

M: Yeah.

A: At the time, I don't remember if I had health insurance or not but I went to an optometrist hoping that it was just like giving me a new prescription. They immediately knew what it was, and they sent me to urgent care at SF General, which is very fortunate because SF General is linked to UCSF, which has a specialist uveitis program, which you cannot find anywhere else in the country. So I got really really lucky. They diagnosed me with bilateral anterior uveitis in both eyes, which is basically chronic eye inflammation in the front part of your eye. It's an autoimmune condition.

M: Do you remember the day that they diagnosed you?

A: Yeah, I do. It was actually really fun. I mean it wasn't fun, but there were parts of it I remember fondly. What was scary was going to urgent care, and I went to urgent care sort of later in the day. I remember the nurse looking at me and immediately knowing I needed to go to ophthalmology, but by the time they sent me to ophthalmology, it was after hours. The doctor who looked at me--she was probably still a resident, and she was dressed like she was going to a dinner party right after. She wasn't even [Laughter]

M: [Laughter]

A: She wasn't dressed in scrubs at that point. It was really cute, she did an eye exam on me using a slit lamp, which is really common with ophthalmology exams. I could see her light up, like this--it was as if it was the first time she had encountered someone with my condition. She pulled out her textbook, looked it up, called somebody, and then was like--she wrote down the name and she was like, "You have this" and told me the name and explained it.

M: Do you remember what you felt in those moments?

A: Mostly confusion, because I'd never heard of it before. I wasn't sure how long it was going to affect my life, how much it was going to affect my life, but I basically tried to come to a radical acceptance as quickly as possible because you only have so much control over what your body does.

M: That's a really interesting concept: radical acceptance. Is that something innately that you've learned?

A: Radical acceptance is something I learned in therapy, very fortunately. The idea is rooted in Buddhist thinking. Instead of trying to have control over events in the world, including even maybe your feelings, you just take a step back and accept that this is the way things are, and take control of the things that you can control, but accept the things you can't control. In a case like getting a diagnosis, totally out of one's control, you just accept that and focus on the things you can control--taking care of your body, taking your medications, etcetera.

M: Do you think that in the United States that is a principle that a lot of people take or something that is less accepted?

A: If we're talking about the population, generally probably not just because in western cultures it's pretty unique to getting in therapy. There is kind of a counterpart in western philosophy: Stoicism, which is also about accepting things you can't change. But I think Stoicism is not a part of mainstream culture, so if someone has exposure to it, it's probably just in passing. Maybe just knowing what the term is.

M: Okay. So when you were 25, you found out you were having floaters in your eyes, a lot of sensitivity to light, and blurred vision.

A: Yeah.

M: At first you just thought it was a natural part of getting older. Was it something that was beginning to worsen over time?

A: Yeah, and just for a little context I already had glasses. I've needed glasses since the 3rd grade, so I just assumed that it was a gradual progression of that. After that, they were able to put a halt on it, to a certain extent. I can't remember the exact order this happened, but basically uveitis is related to a number of things. In some cases it's related to viral infections. For example, Syphilis. And in other cases it's related to other autoimmune conditions like Lyme disease or Sarcoidosis. They gave me a blood test for all those things. It came back negative. So from there they needed to figure out is this more viral or is it autoimmune. I remember the first course of treatment I went through, they gave me antiviral medication and no effect. They switched me over to autoimmune medications. I think they started me off with Prednisone, which is a very general sort of anti-inflammatory medication. You don't want to be on it for a very long time. I was on it for like a year, it was awful.

M: Aww.

A: But it worked for my vision. Once I was on that, they were able to figure out, oh, this seems to be autoimmune, and start trying out other autoimmune medications.

M: What made it particularly awful?

A: [Laughter] It's different for everybody. I'm laughing because anyone who has been on it a long time probably knows. For me personally, I gained 15 pounds, but like in weird places. There's actually a name for this, but I gained weight just in my belly and just in my face.

M: Interesting.

A: Yeah. I've been that weight before and that's not where the fat in my body tends to go if I'm naturally that much heavier. It was a bit dysphoric to be in a body that felt really different, and it felt like it happened really suddenly too. Because in addition to weight gain there's water retention. The water retention happened really quickly where suddenly it was just like BLUH. My stomach was suddenly just bloated.

M: Did that affect your social life in any way?

A: Not especially. I know some people were joking that I had gotten fat because I had just started a relationship at the time, and they were like, "oh, you're getting comfortable." [Laughter] My friend said that and I was like, "no, this is literally a symptom of the medication that I'm on, rude word [sic]. [laughter]

M: [Laughter] Wow.

A: And then eventually the weight did come off as I tapered and then she was like "oh, you were right" and I was like "I hate you." It was kind of funny.

M: So, you tell this anecdote in a humorous sense but, I want to use the word gaslighting. "Oh, what you said was actually true." And it could just be your friendship and it was fine and I'm just missing the context, but.

A: We weren't super close, so I'm inclined to interpret it a little more gaslight-y. We were acquaintances, not super close. Either way, there wasn't a shared understanding that it was a joke.

M: Okay. Has that been something you've encountered? People think they're joking but you're not in on the joke?

A: Probably here and there, because everyone has a different sense of humor. I think more often, I'm telling a joke and people don't know I'm joking. Because I have an inappropriate tone. You nod knowingly [laughter]. Like, "I've been on the other end of this." Yeah, I have tone problems. [Laughter]

M: [Laughter] Yeah. So you're around 25, on and off drugs for a year or two. What does this look like a couple years into it? You said that you were finding solutions that helped you maintain your vision.

A: Yeah, so Prednisone worked, but you can't be on it long term. The next drug they put me on was Methotrexate, which is a drug that works on fast growing cells. Things like hair, skin, nails. You take a dose once a week and it inhibits those systems. They found that that worked to a certain extent for me. It made things better, so I could go on a lower dose of Prednisone, but it wasn't enough to completely fix the issue. With Uveitis they basically have a zero tolerance policy when it comes to inflammation. Methotrexate had me at low-grade inflammation, but not zero percent. They had to start exploring other things and the next medication that I went on in conjunction with Methotrexate was a medication called Humira. I was on that medication for a few years. In the process of being on that medication--I was living in San Francisco at the time--San Francisco has something like a universal healthcare program there, or at least it did before the Obamacare era. I was on that through that system, but was financially pushed out of San Francisco due to affordability issues. Once that happened I had no healthcare. I took the last of my Humira and then spent roughly two years with zero treatment.

M: Mm.

A: Which is not good.

M: When you suddenly didn't have access to treatment due to this ridiculous bay area housing--did that really affect your vision at that point?

A: Yeah. To be clear, I was able to get on Obamacare but my premium was so high that I could afford the premium to have Obamacare, but didn't have any extra money to use it. So I had Obamacare but couldn't actually afford to go to a specialist and get medication.

M: What is an experience of that like, when you had that realization?

A: For some context, part of this issue comes from the rarity of Uveitis specialists. They are hard to find sometimes, and seeing specialists costs more money on certain healthcare programs. They cost more than seeing your general practitioner. On top of that, Humira in particular is a very expensive drug. I can't remember what it is off of insurance, but I'm on insurance now with a decent program, and it's $150. I still can't afford it, so it's just a very expensive drug. The way I dealt with not having it was--my vision just got worse, and I radically accepted my situation.

M: Yeah.

A: I reminded myself that having to suffer with these kinds of health issues has been for most people historically the case prior to technologies and third world countries. Many people have to live with these conditions. And going blind isn't the worst thing that could happen, at least to me. I just sort of accepted that that was a possibility if things were left untreated. During that time my vision did get bad enough--I don't know for sure because I didn't get an eye exam--but based on other eye exams, I suspect eventually I got low vision. My vision was bad enough that I couldn't read things on paper, like a typical 12-point font.

M: That's pretty rapid for a year and a half decline in sight.

A: Yeah. Yeah.

M: I think this puts us close to you being around 30?

A: That sounds about right.

M: Starting your PhD here?

A: Yeah. Just before I moved here, I was able to get health insurance through my husband's job. He luckily got a promotion that came with healthcare. I was able to get treatment starting in Stockton before I moved out to Santa Cruz. Then once I moved I had to reacquaint myself with a specialist out here. Now I have Kaiser and I'm really lucky because Kaiser has uveitis specialists in many locations.

M: That works out. So since then you've been able to access healthcare that's improved your vision?

A: Yeah. My vision did get worse for a time because one of the medications I was one--it's called Pred Forte. It's a steroid eye drop. It's basically the prednisone equivalent of an eye drop. One of the side effects of that is that it can cause cataracts. I had been on that medication for a really long time. My vision got better as far as the uveitis, but then it got worse because of the cataracts. [Laughter]

M: That is ironic.

A: That is what happened the first two and a half years when I first moved here. I knew before I moved here that I had early stage cataracts. There were already signs around that time when I was in Stockton. So that basically just got worse and worse and worse, until I eventually became low vision, which was probably in 2018. Eventually, I became blind recently, legally blind, around August of 2019, and then lived with legal blindness until I was able to get my cataract surgery in November 2019.

M: You went all the way to legal blindness--20/200 I believe is the threshold.

A: I believe you; nobody's ever told me. [Laughter]

M: I believe it's somewhere around there. You had cataract surgery in one eye, correct?

A: Yeah.

M: What was the experience of going from legal blindness to cataract surgery? Were you instantly able to see again? Did it take some time for you to start processing stimuli?

A: For about a week ago after surgery, my eye was just so swollen that the lid was closed. But on the few occasions that the doctor pulled up my eyelid I could tell that things were better. After that period, it was like getting a high resolution television where things felt unrealistically detailed.

M: So interesting.

A: Yeah, like uncannily detailed.

M: I've gotten a theme of radical acceptance through each of these stages, but having that hyperdetail: what was the emotional experience of that?

A: Exciting! I gained a lot of independence back, and that was a major relief. My poor, wonderful partner was taking care of a lot of things because I couldn't see. And because I was considered temporarily low vision, temporarily blind, there wasn't a lot of intervention for me to adapt to being in that situation. I found some ways to adapt from the internet and from the disability resource center on campus. And then just creatively trying to find ways to navigate things like cooking, but my partner had to do a lot of lifting. Not literal lifting. [Laughter]

M: Okay. There's three things that I'm going to want to follow up on. The first of which you started talking about your partner and him picking up the slack. I was wondering if you felt comfortable expanding about that, and perhaps what you understand about his experience and your experience of relying on someone so deeply.

A: Yeah. Just some examples of what he had to take care of: I basically couldn't cook anymore. I was still cooking low vision and had some accidents, usually burning myself.

M: Ow!

A: Not super bad, but enough to be like, "I shouldn't be doing this." He took over the cooking almost completely. I couldn't clean anymore. I tried, but usually he had to go back over it and be like, "That's cute. Let me fix this." [Laughter] "I see that you tried but it was not good." So he had to take over cleaning, he had to take over taking care of our pets in ways that he wasn't used to. He had to learn how to clip cat nails.

M: Oh, that's a big one.

A: Yeah. That, and generally having to be more mindful about picking me up and dropping me off places, because I had trouble navigating new locations. If it was somewhere I was used to going I could navigate it easily, like coming to school. But if it was something new, I really needed someone with me to be like, "this is a coffee shop and this coffee shop is called blahblahblah." Because I couldn't read any signs. I couldn't read street signs or addresses or anything like that, so I needed someone to orient me to things.

M: Okay. So having been both from a sighted perspective and a low vision perspective, what does navigating the world feel like in both of those perspectives. Do you find yourself relying on different skills and abilities?

A: Yeah, definitely. With vision it's really straightforward because you have everything available that you need. You can see the sign telling you where you're at, you can see the signal telling you to cross the street, you can see what number bus you're taking. Without those cues, I had to rely on things like contextual cues. I had to rely on a bit of luck. And I had to rely on memories. Like knowing, "there's a driveway here." Even though I can't see it, maybe that the sidewalk dips in this area and being prepared to react in that way even if I don't have direct sensation of it. Eventually I had to learn things like the sound of my crosswalk so I knew how to cross. It was easy to catch the bus because every bus was there but in some cases I had to learn to just ask strangers, like "what number bus is that?" Because I couldn't see and so, in a lot of situations I learned to rely on strangers, to say "hey I'm low vision can you tell me what that says?" Or "I'm vision impaired" is usually what I said. "I'm vision impaired can you help me with x, y, or z?"

M: Are there ways in which the environment has been set up that you found to be particularly supportive?

A: Yeah, I discovered how important having those crosswalk sounds are. There's a buzzer in the elevator in this building, actually, too. I relied on that, because the number of times that it buzzes--well it buzzes on each floor and so I knew which floor I was on but how many times it had buzzed. Things like that were really helpful. Sound was important. I relied on a lot of textures. So touching things and being able to--it's unfortunate that people can't see this--relying on a lot of relative tactile, using two hands, and using touch as much as possible to determine distance for little things. For example if I was pouring water into something, I couldn't tell how much water was in it, so I'd put a finger into the cup. That's a really common technique. Put a finger in it, fill it up until you can feel it, and stop there. But in cases where it was hot water I had to go get help.

M: That makes sense, you don't really want to put your finger in boiling water.

A: Mhm, yeah.

M: Are there ways that you found--and we can talk about particularly navigation we've kind of expanded but--ways in which the environment has been set up in a way that is not helpful or ways in which it could have been improved?

A: Yeah, something I've discovered that I hadn't noticed before but once I needed it I quickly discovered: in San Francisco, the buses verbally say what number bus they are. Loud enough for you to hear from the street. Number 8 will drive up and then someone will say "Number 8" and then the location, like Mission Street. But here, the buses don't do that at all. I had to completely rely on asking people what number bus things were. One of the main issues with having cataracts is lack of, or at least I don't know how universal this is, major issues with contrast. It was really common to not be able to tell where a curb ended and where a road began. Or to tell the boundary of the stairs in certain cases, stairs that are all a very similar color, without the edge being highlighted like a bright yellow or something. I had to walk really slow and use my feet to feel where steps were. Usually the most important things were in safety contexts like that where risk of falling would happen. Sometimes things weren't well labeled like the elevator, but you can use feeling to infer which button was which floor. Just having knowledge of how elevator floors work. Knowing that lower floors are lower on the thing, and again counting the sound. Using those sorts of inferences to figure out what's going on. Oh! An obvious one I haven't talked about is reading. A major part of my job is having to be able to read. As a researcher you have to be able to read papers, you have to code a lot. The main obstacle was turning everything digital in some way. Some things are really easy to turn digital but in other times I had to figure out how to make things digital in order to access them.

M: Can you give an example?

A: Of something hard?

M: Of something difficult to make digital.

A: Yeah, so, I had to grade exams, and exams are handwritten. If I just picked them up and looked at them, I couldn't read them. So I had to individually scan each exam, which sometimes was 400-500 pages of paper to turn it into a digital format so I could read what students had actually written.

M: Wow. Would that take hours?

A: Yeah, it would take hours, just to convert. Yeah.

M: And again, you've talked a lot about radical acceptance, but how did those situations make you feel?

A: They were frustrating when they would happen. Sometimes I didn't know I had a limitation until I was trying to do something like I usually did it, and then discovered oh, there's a change. And I'm on a time limit, right? If I've got papers to grade and a PhD course load of my own classes and my own research, I can only spend so many hours trying to get this set of papers graded. Before I knew I had to convert them digitally, I had a moment of panic. How am I going to do this? I can't read things on paper anymore. What are my options? I had no idea. I had to try out a couple of things. I tried reading glasses, I tried a number of magnifying glasses, and those didn't work. Different lighting contexts. Eventually, I came to the “scan the papers” option and that was really effective, but it took some trial and error to get there.

M: Do you feel that this was a common occurrence that when you encountered a new problem, that there wasn't necessary literature or support in terms of figuring out how to get around it easily, that you had to do problem solving?

A: Um, it depends. If it's a context that a lot of people experience then it was a lot easier. So every blind person has to know how to cook. Every blind person, not every--many blind people learn how to cook. Many people learn how to put on makeup, I was still just like makeup by braille. Basically tactile cues to do my makeup. Tactile cues to do some chores. There were more resources on the internet for stuff like that than there were for doing things in a PhD, academic setting, research setting, grading setting. In that case, I just had to figure it out myself because I don't know anybody else who has had those issues around here.

M: Why aren't there a lot of people with visual impairment [in academia]?

A: I'm not 100% sure, because again, I'm a case of temporary blindness, and so they didn't give me--there were state resources that I could have gotten if I were more permanently disabled. I forget what it's called, but it's basically rehabilitation for learning how to do jobs blind. I could have probably gone through something like that if it were more permanent. It’s possible some of those resources exist and I’ve just never been acquainted with them. But in my experience I was mostly on my own. I did get a little bit of help from the Disability Resource Center with some software to help me read things. For the most part, it was help-yourself.

M: If I'm understanding it's because if I don't fit this particular set of boxes I don't have access to these resources that I might benefit from.

A: Yeah, exactly. There were some resources that I know were available that I didn't quite qualify for.

M: What was the experience of not having access to those?

A: Frustrating, because I talked to people about it, people who were in charge of my healthcare, like my doctors and stuff. Their response was either that it wouldn't be useful, so when I asked about low vision assistance training, my doctor said, "they're basically just going to teach you how to do work with magnifying glasses." Reading glasses and magnifying glasses, and I'm already doing that. Then, when it came to blind resources, I asked about it once and he was like, his reaction was, "you're not going to go blind." This is temporary. The idea of me getting rehabilitation or training in being blind would be to assume I was always going to be blind. But my feeling at the time was like, I still have to live with this. [Laughter]

M: Yeah.

A: How do I live my life?

M: Is that kind of the question that kept occurring? How do I do things?

A: Yeah, yeah. How do I figure this out without having someone in person to help me navigate it?

M: Mhm. Did you find anyone else with low vision that was helpful or were you on your own?

A: Not in person. I did at the disability resource center; I don't know what their role was but it was like blind assistive technology. I got a little help there and besides that I got help on reddit. There's a subreddit for blind people and low vision people. Sometimes it would just be like, "hey, I'm temporarily blind and I'm having this issue. How do you navigate this?"

M: What was the quality of the help from the community? Can you talk a little bit more about your experiences interacting with a community that is in a similar position as you?

A: Usually they were really helpful. I can't remember particular examples unfortunately. Many of the conversations were about hobbies, like how to adjust your hobbies around being blind. What video games can you still play? What things can you still make? Things around that. I took a lot of my cues from that. When people were saying here's what I do, here's how I do this, I tried to incorporate those into whatever I could. That's really ambiguous but I can't remember. [Laughter]

M: Okay, thank you.