Monthly Archives: June 2020

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

The Mind Hears affirms that Black Lives Matter

-Michele Cooke and Ana Caicedo

The murders of George Floyd, Breonna Taylor, Ahmaud Arbery, and too many others stem from historic and continued systemic oppression of Black Americans. The disabled and deaf communities are not without white privilege and we need to do the uncomfortable work of recognizing and dismantling these privileges. BarbaraSpiecker and Alicia Wooten express this beautifully in their Atomic Hands video (link here). We encourage you all to watch the video.

White privilege within the Deaf (signing deaf) community has been manifest as better education for white Deaf students and a greater proportion of whites in leadership positions within the Deaf community. Furthermore, a study of the Post-secondary achievement of Black Deaf People in the US by Garberoglio et al (2019)  reports that more Black deaf people are looking for work than white deaf people. David A. Player’s blog provides a summary of white deaf privilege. 

“White people with disabilities also have a white privilege because whiteness superseded all forms of identities that could be considered as deviance attributes. They will also get a form of assistance from a white able-bodied hearing dominate society” 

David A Player, Dear White Deaf People  (link here)

We deaf and hard of hearing academics know what it is like not to be heard. We know what it is like not to be included. But white deaf/HoH academics have the privilege of our whiteness as we interact within our communities and navigate our careers.

The Black community in the US has historically helped the deaf and disabled communities in their struggle to be heard and recognized. In 1977, disability activists led nationwide sit-ins to protest the lack of enforcement of Section 504 of the Rehabilitation Act of 1973. Section 504 prohibits institutions, such as universities, that receive federal funds from discriminating on the basis of disability; however, until 1977, there were no regulations to enforce the law. During the 26-day-long sit-in within the Federal Building at 50 United Nations Plaza in San Francisco, the Black Panthers fed, assisted and supported disabled protesters (read here or here or here about Bradley Lomax’s key role in the protests). The sit-in concluded with the signing of regulations that enforce Section 504. By the way, these regulations are why US universities have disability service centers for students. During the Deaf President Now protests in 1988, Gallaudet University students shut down campus to protest that the University had only had hearing presidents in its 124 year history. During that week-long protest, the local Black community supported Gallaudet student protesters. Both of these impactful protests as well as the 1990 Capital Crawl led the way towards the passing in 1991 of the comprehensive Americans with Disabilities Act, which prohibits discrimination on the basis of disability regardless of whether businesses receive federal funds.  

It is long past time for us to support our Black colleagues, friends, and neighbors. The Mind Hears commits to amplifying Black deaf/HoH voices and perspectives.

The murders of George Floyd, Breonna Taylor, Ahmaud Arbery, and too many others stem from racism and the systemic oppression of Black Americans. The disabled and deaf communities are not without white privilege and we need to recognize and dismantle these privileges. During the Section 504 sit-ins of 1977 and the 1988 Deaf President Now protests that contributed eventually to the 1991 Americans with Disabilities Act, the Black community aided and supported protesters. It is long past time for us to support our Black colleagues, friends, and neighbors.