Category Archives: grad school

A brown-skinned woman wearing a blue patterned dress, a gray headwrap, and hearing aids sits on a bench looking to the right. To her right, a white cane stands upright.

“Moving Together”: Or Researching Health Care Access as a Disabled Academic

–Arrianna

This is a repost of post published on 11 March 2018 by Dr. Arrianna Planey on her blog. You can see the original post at this link and her gorgeous blog at this link.

As I work on my dissertation, one question arises over and over: whether my disability status as a researcher matters, and how much.

I vacillate between foregrounding my experience as someone with disabilities and downplaying my disability status. That choice depends on the context. If my credibility as a researcher is in question, I’d rather people not focus on my social status, because the “ideal” academic researcher is still white, non-disabled, and well-off. The “view from nowhere” is the “ideal” academic’s gaze.

A brown-skinned woman wearing a blue patterned dress, a gray headwrap, and hearing aids sits on a bench looking to the right. To her right, a white cane stands upright.

But I am compelled to foreground my experience as a Black woman who is also deafblind when I talk about why I choose to research health care accessibility and help-seeking among disabled adults in the U.S.- especially people with sensory and mobility-related disabilities. My interest in this research is driven by my own experience- the foregone care, the delayed diagnoses, and systemic barriers that undergird those outcomes.

Moreover, it is necessary to contextualize those systemic barriers with the fact that many disabled adults remain “dependents” due to a confluence of policies that simultaneously penalize benefits recipients for not having enough of a work history and penalize those who have too many assets. For further context, the recent push for Medicaid “work requirements” in states across the US (even states with Democrat governors), means that disabled people potentially face worsening access to health care- a particularly pernicious circumstance given that their access to Medicaid may be predicated on having a diagnosis that affirms their disabled status, which presumes access to health care. I mention this because disability status is not necessarily the same as one’s medical status- estimates of disability prevalence based on diagnosis by definition undercount by excluding people who do not have access or have not procured a diagnosis that corroborates their disability status.

For this reason, my project looks at both health care providers- their location decisions, their clinical practice- AND patients as I study health care access as a process. In the U.S. health care providers play a key gatekeeper role in the medico-legal complex that comprises the social safety net.

For this reason, my project looks at both health care providers- their location decisions, their clinical practice- AND patients as I study health care access as a process. In the U.S. health care providers play a key gatekeeper role in the medico-legal complex that comprises the social safety net.

More specifically to the field of Geography and the subfield of health geography, the question of the researcher’s subject and social position is important methodologically. Currently, much of the debate over emergent qualitative methodologies- e.g. ‘mobile methods’- presumes that the researcher is able-bodied. Within the ‘new mobilities paradigm’ (Sheller & Urry, 2006), the ‘walking interview’ is a popular method for capturing participants’ experiences of place. However, much of the literature on the ‘walking interview’ provides methodological guidelines and considerations that assume that (1) walking is the normative mode of mobility, (2) that the researcher can balance managing the recording equipment with conducting the interview (no fine motor skill constraints or no need to use a cane or operate their wheelchair), and (3) they assume a power imbalance between the researcher and participant on the basis of disability status (Sheller & Urry, 2006; Finlay & Bowman, 2016; Hein, Evans & Jones, 2008).

Parent (2016) makes an important intervention in this literature, providing her experience as a researcher who uses a wheelchair as she uses mobile methods in her work. She found that her status as a disabled person was overlooked by even disabled research participants, with whom she initially corresponded via email. One blind participant suggested meeting at a coffee shop, assuming that the researcher was able-bodied. The coffee shop was not wheelchair accessible, and the author’s disability status became the initial subject of conversation, rather than the respondent’s sense of place in their activity space. Later in that same interaction, the author made a comment to the tune of “This is going so smoothly!” to which the blind participant replied

“Yes, it’s true. It seems to be going well, but you know, I can never say that to myself. I always have to take one step at a time. Too often I thought it was going well, and then I hit my head on something. Even when you think it’s going well, you can go one step at the time and think ‘OK, this is good. My foot and my face didn’t hit anything. I am fine.”

(Parent 2016, 528)

This foregrounds the importance of intersubjectivity, a concept taken for granted in the broader literature on ‘mobile methods,’ which emphasizes “moving together” without considering that each person in an interaction may have a different form of mobility that structures the interaction itself (Novoa, 2015). For example, in the above example, the interview was punctuated with the researcher’s verbal descriptions of the path to enable the blind participant to navigate the space safely. They had to “move together” through spaces that were not designed with them in mind.

Moreover, a human geography tradition that centers disability as a variation in human experience is one that moves from thinking of space in  in terms of what is empirically measurable, or that which ‘contains’ the social toward a relational and dynamic understanding of space that is constituted by social relations (which are ever shifting). Casey (2001) sums it up nicely in the term ‘co-ingredience’- “There is no place without the self and there is no self without place” (pp 684). The social scientific methods that best apprehend these dynamics in space are what Sayer (1992) terms to be “intensive” methods, which tease out the working of processes among a small number of cases with greater attention to context and applicable social theories that may inform their interpretation. They must begin with an understanding of social structures as conditions of possibility (context-dependence). These methods may be coupled with quantitative data collection and analysis, such as qualitative GIS and travel diaries. However, we must return to “moving together” with a greater attentiveness to intersubjectivity- between disabled and non-disabled people, between disabled people (because disabilities are heterogeneous*), among networks of people within a neighborhood, and between caregivers and care recipients.

* Said heterogeneity among disabilities (lived experiences with disabilities, as well as comparative types and degrees of “limitations” across social spaces designed for and by non-disabled people) is overlooked or ignored in law and policy regarding “accessibility” for disabled people in public spaces.

References:

  1. Chouinard, V and Grant, A. (1995). On Being Not Even Anywhere Near ‘The Project’: Ways of Putting Ourselves in the Picture. Antipode. 27. 137-16
  2. Finlay, J.M. and Bowman, J.A. (2016). Geographies on the move: a practical and theoretical approach to the mobile interview. Professional Geographer 69(2), 263-274. 
  3. Hein, J.R., Evans, J. and Jones, P. (2008). Mobile methodologies: theory, technology and practice. Geography Compass 2(5): 1266-1285.
  4. Merriman, P. (2014). Rethinking mobile methods. Mobilities 9:2, 167-187. 
  5. Novoa, A. (2015). Mobile ethnography: emergence, techniques and its importance to geography. Human Geographies 9:1, DOI:10.5719/hgeo.2015.91.7
  6. Parent, L. (2016). The wheeling interview: mobile methods and disability. Mobilities 11(4), 521-532. 
  7. Sayer, A. (1992). Method in Social Science: A Realist Approach. 2nd ed. Routledge: London and New York
  8. Sheller, M. and Urry, J. (2006). The new mobilities paradigm. Environment and Planning A 38, 207-226
A dark skinned woman with glasses and head scarf smiles to the camera

Biography: My name is Arrianna Marie Planey, and I am an Assistant Professor in the Department of Health Policy and Management in the Gillings School of Global Public Health at University of North Carolina, Chapel Hill. I am a health/medical geographer with expertise in measuring and conceptualizing health care access, health and healthcare equity, and spatial epidemiology. My research and teaching focuses include the application of spatial analytic/statistical/epidemiologic methods to study interactions between health(care) policies, healthcare access and utilization and underlying, population-level health inequities, and identify points of intervention at structural- and system-levels. At the core of my research agenda is equity in access and outcomes, with attention to the intersections of race, class, gender, and disability status. I earned my PhD in Geography from the University of Illinois at Urbana Champaign, after earning my Master’s and Bachelor’s degrees at the University of Chicago and the University of California, Berkeley respectively

Profile: Alex Lu

PhD Student, University of Toronto, Canada

Field of expertise: Computational Biology

Years of experience (since start of PhD): 5 years 

Describe your hearing: Profoundly deaf; I’m oral and voice for myself, but I use ASL interpreters for professional interactions

Background

I grew up mainstreamed in Vancouver. For most of grade school, I used hearing aids —back when I was in elementary school, we still had those clunky FM systems that attached to your hearing aids through wires and boots. I was lucky to have a hearing resource teacher who recognized the importance of sign language, and she brought in a Deaf teacher to teach me and a few other Deaf/hard-of-hearing students the basics in grade 9. In grade 11, I decided to stop using my hearing aids entirely. Part of my decision was practical—I had a progressive hearing loss, and it was getting to the point where I felt like my hearing aids weren’t helping enough to be worth the headache they gave me from amplifying everything. But the other reason was because I had grown to resent what they represented: how hearing people always expected me to “fix” myself to be acceptable to them. My parents and teachers were furious—I was in the middle of a highly intensive International Baccalaureate program and they didn’t know how I would get through it. But I managed to cobble together strategies, including basic ASL and borrowing notes from classmates. I’ve used ASL interpretation for my academic needs ever since. 

I’m also queer, and outside of academia, I do a lot of activism in bridging Deaf and queer communities. For a while before my PhD (and even well into it), I was active in many non-profits. Some of my fondest memories include negotiating accessibility in Pride boardrooms, emceeing Deaf poets for spoken word festival events, and moderating all-Deaf panels about prison justice. 

How did you get to where you are?

Many people in academia will talk about how they’ve always known what they’ve wanted to study since they were very small. I am definitely not one of those people. Rather, I got to my current interests by taking opportunities as they arose, and by being receptive to advice. I began studying computational biology as an undergraduate because a family friend mentioned it might appeal to me. I had many interests and didn’t know whether I wanted to major in English or history or a science; I figured that their advice was as good as any. As I worked through my degree, I met a graduate student who asked me to volunteer for a lab that wanted someone with computational skills, and I specifically got involved in image analysis because that was the data the lab worked with. That experience opened the door to my PhD; I applied to just two graduate schools upon finishing my undergraduate, and I figured that if I didn’t get into either, I would just start my career. But one graduate school liked my background enough that they accepted me, and I’ve been working in image analysis and computer vision ever since. 

That isn’t to say that I am not passionate about what I do; I love working on challenges in big biological image datasets, and it really challenges my creative problem solving skills. But I am fundamentally a very flexible person, and I can easily see alternative histories where I stumbled into something radically different—comparative literature, maybe, or psychology—and would have been equally as happy and passionate about that. In retrospect, taking opportunities as they arose was a very good strategy for me as a marginalized disabled person—it meant that I was always surrounded by people who were eager to invite me into their space, so I attribute a lot of my success to being easy-going enough that I could let these people guide my journey. 

What is the biggest professional challenge? How do you mitigate this challenge?

Anything that involves travel. I never know whether I will be able to find qualified accessibility services when I travel for conferences or other academic commitments. For conferences, my school has been terrific about having my regular academic ASL interpreters fly out with me: we have flown to New York, Los Angeles, and Vancouver together, and that guarantees that I can be fully involved in the important networking connections that are being made there. However, this is not a problem I have fully solved. I’m due to spend three months in Switzerland for a research exchange soon, and since they use a different sign language than mine, I wasn’t able to find local services. I’ve had to come up with more creative solutions; my current plan is to have my interpreters in Toronto Skype with me remotely for regular meetings, and I will have to see how this works out. But in general, I think about academic mobility a lot for disabled people. While a lot of my able-bodied peers are able to take jobs and opportunities anywhere in the world, I feel like there are more hurdles for me, and I’m trying to find ways to not let this limit the steps I can take in my career. 

What is an example of accommodation that you either use or would like to use in your current job?

I have an awesome accessibility plan with my school, which gives me “block times.” Three or four afternoons a week, I have an ASL interpreter present for any needs that might pop up: a collaborator or student showing up for a meeting, impromptu chats with my supervisor or colleagues, seminars that I learn about last-minute but seem interesting. The interpreter is booked regardless of there’s something happening or not, and if it turns out to be a quiet afternoon, she spends her time on prep or coordination. 

This accommodation has really made a massive impact on my success in my program and career. For example, it makes collaborations a lot easier: while I could book interpretation for each specific meeting happening, having to set a date three weeks ahead to confirm interpretation is a lot less convenient than a collaborator just dropping in with short notice to discuss how a project is proceeding. Similarly, I don’t have to devote a lot of energy into keeping abreast of departmental and campus events to be able to request interpretation ahead of time—I can spontaneously go to seminars as other graduate students mention them to me. It’s really leveled the playing field a lot in terms of how much time and energy I have to devote to being engaged and available as a scientist, compared to hearing people. 

What advice would you give your former self?

You work way better 9 to 5! I can’t believe how much more productive I became after I started sleeping 8 hours a night and giving myself more downtime—sometimes fewer working hours is more! 

Any funny stories you want to share?

I once helped host an ASL-interpreted theatre production. I taught the director how to say “thank you” in ASL, so she could wave goodbye to the community members I had invited as they were leaving the show. Unfortunately, between the start and end of the play, she forgot that the sign starts from the mouth, not the chin, and ended up signing “fuck you” all night… (People had a good sense of humor about it).

The sound we can see: working with hearing loss in the field

When I was 19 I went for a checkup with an audiologist and found out that I was hearing only 90% of what I should be. The doctor said that for my age, this was a high level of hearing loss, and attributed it possibly to the intense course of antibiotics I took for kidney failure when I was one year old. He suggested that I come back yearly to repeat the hearing exam, to verify if my ability further decreased below my current hearing levels. Of course I ignored this advice and never went back. When I started my graduate studies six years later, I decided it was finally time to visit the audiologist again, because I discovered that I could not hear the species of frog I had decided to base my research on. This was a very scary moment for me. How did I find myself in this situation?

In the last year of my undergraduate studies I took an ecology course and fell in love with the topic. I knew I wanted to earn a master’s degree in ecology, ideally working with animal populations. In Brazil, one has to take a standardized exam to enter a graduate program. I traveled 440 km to take the test and passed; I began my studies in the Federal University of Paraná located in Curitiba, in the south of Brazil. Among all the available mentors, there was one who carried out research on ecological dynamics of insects and anuran amphibians. I chose his lab and wrote a project proposal examining the population dynamics of an endemic species of stream frog (Hylodes heyeri) in the Atlantic Forest in Brazil, specifically Pico do Marumbi State Park, Piraquara, in the state of Paraná. Much of what I was to be doing was completely new to me: I had never worked with frogs and I also had never practiced the mark-and-recapture method. I thus faced a steep learning curve and had to learn a LOT about lab and fieldwork from my team and my mentor. In my first field outing, during which I was to learn how to identify and capture the species I would study, I discovered that I could not hear the frog. A labmate who accompanied me to the field said, “Are you listening? The frog is so close to us.” He thought I was not hearing the frog due to lack of experience, or because of the background noise of the stream. I worried that something else was amiss, and this finally prompted me to go back to my audiologist. There, I discovered that I had lost 2% more of my hearing, and this loss compromised treble sounds, those in the range of high to very high frequencies, precisely overlapping my frog’s vocalizations.

Now, I’m a PhD student and I use hearing aids programmed specifically for my hearing loss, which primarily encompasses frequencies above 4000 Hz. I was initially ashamed to wear hearing aids because people mocked them. But I didn’t consider changing projects, because I knew I could get help localizing the frog. I also knew there would be ways for me to analyze the sound without necessarily hearing it. Even with hearing aids, however, I can only hear the call of my frog when I am no more than 4 meters away. Other members of my lab can detect the sound of the frog from much farther away, even when they are 20 meters or more from the stream. This means that for every survey I carry out in the field, I need a person to accompany me to guide me to the frog, using their sense of hearing to identify the sound. But the assistance I receive in the field goes beyond locating my frog; the field can be dangerous for many reasons: I may not hear dangerous animals—such as puma, collared peccary, or leopards—approaching; and I may lose track of my team if people call me from too far away. Even for scientists without hearing loss, it is advisable not to carry out fieldwork alone.

In recent years, I have had the opportunity to learn Brazilian sign language (LIBRAS) in graduate courses. I am happy that it is a requirement for my degree! When I am in the field I communicate primarily with gestures. I am lucky that my frogs are diurnal, because I am able to see my companions in the field, making communication much easier. Once my companion hears the frog, they look at me so I can read their lips or we make gestures so as to not scare the frogs. Sometimes I use headphones, point the microphone of my recorder in the general direction of the frog, and increase the volume to better understand where the sound comes from—this trick of using my main research tool (my recorder) to find my frogs was taught to me by a friend who also carried out research in bioacoustics and had the challenge of finding a tiny mountain frog species that hid in leaf-litter (thank you, André Confetti). My frogs are also tiny, only 4 cm long. They camouflage in the streams and spook very easily, but in order to obtain my data, I need to get as close as 50 cm from the frog. Only then can I really start. The aim of my work is to analyze the effect of anthropogenic noise (such as traffic road sounds transmitted by playback) on frog communication. Once I am in position, I can play the anthropogenic sound, and record the frog’s call. I take these recordings back to the lab and experience the most rewarding aspect of my efforts to find these frogs. The recordings are transformed into graphs of the frequency and length of each call. Although I cannot hear the sounds my frog makes, I can see them! After seeing the sound I can analyze several call variables and calculate various statistics.

Would I recommend field work such as mine to somebody who finds themselves in my predicament? If you are open to creative workarounds, such fieldwork is possible for all. Having a field companion, using signs to communicate, and making use of the amplification provided by my recording equipment has solved the majority of my problems. Most important of all, having support from your mentor and other people who can help and you can trust is crucial. I do not intend to continue with bioacoustics research after I graduate, but if I need to mentor any students in the area, I’ll be happy to do it. I worry about my hearing loss too, in thinking of how it will affect my teaching in the future, because sometimes I hear words incorrectly and confuse their meaning. But I recently exposed my hearing loss in an interview; reading more at The Mind Hears and on other blogs has inspired me to worry less about my hearing loss and to continue to forge ahead in my career.

 

Biography: My name is Michelle Micarelli Struett and I am a doctoral candidate in the Graduate Program in Ecology and Conservation (where I also received my MS) at the Federal University of Paraná in Curitiba, Paraná, Brazil. My undergraduate was at Maringá State University in Maringá, which is also in Paraná. I am interested in animal behavior, especially in frogs, and in my research will examine multi-modal communication in the Brazilian Torrent Frog (Hylodes heyeri). This unique frog can sing from one or both sides of its mouth (it has two vocal sacs), depending on context. I will attempt to determine what that context is that stimulates those two possibilities (auditive, visual, or tactile), and how anthropogenic noise may interfere with communication and social interactions in this frog. Despite my hearing loss (which primarily encompasses frequencies above 4000 Hz), I have not been constrained from working with frog calls and bioacoustics.