We explore through duoethnography how our relationship and dialogue across identity differences — a non-disabled white, cisgender, Jewish, lesbian professor and a disabled white, cisgender heterosexual student — mediated our development as disability allies. Couched in the relationship we developed through our work together in the academic discipline of disability studies, we explore structural and intersectional allyship, the power of language, and internalized ableism. We share the transformational learning that occurred for us through our duoethnographic dialogues and encourage vulnerable relationship-building across differences to explore the complexities of allyship. Both of us leave this study with more questions to explore, and we hope this work inspires others to engage in further reflections, dialogues, and allyship.
We both have a personal connection to disability and were introduced to the discipline of disability studies through Miami University's academic program — one of us as a non-disabled faculty member, the other as a physically disabled student. We collaborated with one another in several capacities: as researcher and participant, professor and student, and as co-teachers of a disability studies course in allyship and activism. As our relationship evolved, so did our perspectives on disability's position in society and the complexity of disability allyship. Throughout one semester, we explored these thoughts, and the role we have played in one another's ally development, through a duoethnographic format.
Disability studies seeks to transform how disability is positioned in society (Garland-Thomson, 2018; Linton, 1998). It explores the lived experiences of people with disabilities, conceptualizing disability as a social, cultural, and political phenomenon rather than an individual impairment (Linton, 1998). Garland-Thomson (2018) stated that:
disability studies is an interdisciplinary academic field that expands the understanding of disability from a health science perspective to consider it as a civil and human rights issue, a minority identity, a sociological formation, a historic community, a diversity group, and a category of critical analysis in culture and the arts. (p. 12)
Disability studies blends scholarly inquiry with activism and advocacy by emphasizing the contributions of disabled voices and promoting disability culture and pride (Garland-Thomson, 2018; Linton, 1998). Using duoethnographic dialogue, we explore together the transformative potential of disability studies for developing disability allies.
Allyship is, in part, the practice of amplifying the voices and perspectives of marginalized groups and taking direct action and advocacy alongside members of those groups (Kendall, n.d; Myers, Jenkins Lindburg, & Nied, 2013). Disability allies work to recognize and dismantle ableism on individual and structural levels by leveraging their own privilege as non-disabled individuals and challenging ableist practices (Adeye, 2013; Peters, Castañeda, Hopkins, & McCants, 2010). Disability allyship involves educating oneself about disability issues and acting on those issues alongside members of the disability community to ensure access and inclusion (Disability Rights Activists, n.d.; Myers et al, 2013; Peters et al., 2010).
Given the significant diversity among disabilities (e.g., physical, psychological, intellectual, learning) and therefore differences in the nature of ableism, disability allies can be disabled people working against forms of ableism that do not specifically impact their own disability. For instance, physically disabled people can act as allies for autistic people, just as autistic people can act as allies to physically disabled people. Not everyone might agree with this perspective because disabled people do not have privilege in an ableist system to leverage. However, our perspective, which acknowledges the various forms of ableism, promotes cross disability solidarity as described by disability justice activists. Disability justice "centers justice and wholeness for all disabled people and communities" (Mingus, 2015). Sins Invalid, a disability justice performance project, set forth 10 principles of disability justice. One of those principles is Cross Disability Solidarity, which is the idea that it is necessary to break down:
ableist / patriarchal / racist / classed isolation between people with physical impairments, people who identify as "sick" or are chronically ill, "psych" survivors and those who identify as "crazy", neurodiverse people, people with cognitive impairments, people who are a sensory minority, as we understand that isolation ultimately undermines collective liberation. (Berne, 2015)
Acting in partnership as allies to one another within the varied iterations of ableism enhances solidarity within the disability community.
Even beyond the disability community, the notion of allyship is a contested area for some, with pushback against well-meaning people who believe themselves to be allies but do not do the difficult work of resisting systemic oppression (Indigenous Media Action, 2014; McKensie, 2014). Indigenous Media Action (2014) critiques what it terms the "ally industrial complex," or the process of training and designating allies (sometimes self-designated) who are well-meaning but not willing to put themselves on the line for marginalized groups. Allyship is systemic action, not labels for people (McKensie, 2014).
Allyship is a developmental process. In her study of social justice allyship development among undergraduate students, Broido (2000) described allyship development as: "increased information on social justice issues, engagement in meaning-making processes, and self-confidence. To move from being willing and able to act as allies, to actually doing so, required external initiation" (p. 7). Disability ally development is less prevalent in higher education partly because colleges often perceive disability as a medical issue, rather than a diversity and social justice issue (Evans, Assadi, & Herriot, 2005). The social justice model of disability focuses on how ableism shapes the meaning of disability, considers diversity and intersectionality of disabled people's experiences and identities, and educates about the pervasiveness of ableism in shaping disabled people's experiences (Evans, Broido, Brown, & Wilkie, 2017).
As we consider our own ally development, we align ourselves with the social justice model of disability and explore intersectional ableism and action. We extend Broido's (2000) work on ally development by considering how the development and nature of allyship is influenced by dialogues across multiple social identities and their connections to systems of oppression (Kendall, n.d.). We co-taught in 2018 an undergraduate disability studies course, "Disability Allies and Activists." Through this class, we developed a shared understanding of good practice for allyship (e.g., Disability Rights Activists, n.d.; Kendall, n.d., Peters, et al., 2010). Co-teaching was a formative experience in our relationship as allies. Faculty-student instructional arrangements like ours are all too rare, let alone co-teaching a disability studies class with a disabled student. For us, it was an opportunity to reap the benefits of faculty-student partnerships and empower disabled students (e.g., Ntem & Cook-Sather, 2018).
However, we come to disability studies and allyship positioned differently because of our multiple identities and experiences, especially in relationship to ableism. We introduce those differences here and then consider them in more detail through dialogue as we consider our allyship development and how we interact with some of these practices.
Megan: I am a disabled, white cisgender woman who recently graduated from Miami University, where I became involved in disability studies courses. I worked on a number of disability-oriented scholarly and activist projects, including the creation of a universally-designed classroom and the formation of a disability cultural space on Miami's campus. As a founding member and co-president of Miami's Students with Disabilities Advisory Council (SDAC), I facilitated conversations with faculty about access and inclusion in higher education.
Elisa: I am a non-disabled, Jewish, lesbian, white cisgender woman who is a professor at Miami University in the College of Education studying college student identity development theory. I became deeply interested in learning about disability when my nephew was born with Down syndrome in 2011. I translated this interest into researching disability identity among college students using critical theoretical perspectives and teaching a "Disability Allies and Activists" course in Miami's disability studies minor.
We have known each other for two years. We met when Megan was a participant in Elisa's research on college students with physical disabilities. The next semester, Elisa was Megan's professor in Disability Allies and Activists, and the following year we co-instructed the course along with another Miami student who identified as disabled. We have both valued our evolving relationship and how we have learned together. We also know that we experience ableism and allyship differently given our identities. To understand in greater depth these differences and their implications for working against ableism, we use duoethnography to explore the ways in which our relationship and identity differences mediate how disability studies has transformed our development as disability allies. Specifically, we ask as our research question: How does ableism shape our disability ally development across identity differences? To address this question, we explore the concepts of identity, privilege, internalized ableism, intersectional ableism, and counter-storytelling. We use disability studies as the context in which we explore these ideas because it is through this discipline that we have done much of our learning together. Consistent with emergent design of qualitative research broadly (Patton, 2002), and the evolving nature of duoethnographic analysis specifically (Sawyer & Norris, 2012), our research question and prompts evolved as we engaged in dialogue and writing.
Duoethnography is a research methodology in which two individuals are both the "researcher and researched" (Norris, 2008, p. 234). The dialogue between these two individuals about a topic becomes the research data. The individuals bring different perspectives to the topic and explore these differences through dialogue (Nusbaum & Sitter, 2016). They come to the dialogue intending to develop new understandings and meanings based on their differing perspectives. This intent requires that they be open to sharing the differences between them and challenging their own assumptions (Nusbaum & Sitter, 2016). Brown (2013) stated:
Duoethnography is about trusting the Other to be open to new and challenging points of view. It is also about trusting one's self to be open to new and challenging points of view. It is about seeking and finding, not holding onto; about letting go and ultimately moving and transforming. (p. 526)
Norris, Sawyer, and Lund (2012) explained that duoethnography is not about the meaning that people make of their lived experience but rather that "meanings can be and often are transformed through the research act" (p. 9).
A duoethnographic text is written as a dialogue without merging the individuals' perspectives and without extensively citing texts for substantiation (Seidel & Hill, 2015). Readers of this dialogue "are asked to bear-witness to the act of researchers engaging in a dialogic encounter where they explore and juxtapose their experiences and beliefs" (Norris, et al., 2012, p. 9). There are multiple approaches to writing duoethnographic texts to convey the conversation and insights (Sawyer & Norris, 2012).
We began our duoethnography by writing and exchanging essays in which we reflected on how disability studies and our relationship have transformed us as disability allies. We then dialogued for one hour about our reactions to those essays. We engaged in two more dialogues, each approximately an hour long. In between each dialogue, we exchanged essays in which we reflected on the prior dialogue. The topics for each subsequent dialogue stemmed from our reaction to each other's essays and new thoughts that emerged from our reflections. We circled back to topics from previous conversations as we made deeper sense of them. As Sawyer and Norris (2012) explained, duoethnographic data analysis occurs at multiple points throughout the process, including while engaged in dialogue. Indeed, we simultaneously dialogued and analyzed our dialogues, and then analyzed data between dialogues. We stopped after three dialogues because we felt we had analyzed our research question in depth and were not adding meaningful new thoughts. We recorded and transcribed verbatim all of our dialogues.
With our essays and dialogues as data, we continued our analysis by identifying five themes related to disability allyship and identity. Using these themes, we wrote a composite dialogue that includes stories, quotes, and insights from the data. We each wrote our own dialogue contributions so that the composite narrative is true to our voices. While writing this narrative, our data analysis process continued, as Sawyer and Norris (2012) suggested it might, because we challenged each other, developed new perspectives, and raised new questions. The composite narrative is a reflection of our dialogues and essays, as well as of the new insights we developed through the writing process. In short, and consistent with Sawyer and Norris (2012), analysis included reflections during and between dialogues, a thematic analysis of transcripts and essays, and probing conversations while writing the following composite narrative.
Dialogue on Identity, Disability Studies, and Allyship
Inside Elisa's faculty office, in the area she calls her breakfast nook — a small table with flowers — we sat down together between classes and meetings for meaningful reflective time that we both considered a highlight of our days. We addressed numerous topics in our dialogue. We considered the meaning of allyship, questioned language, thought carefully about intersectional ableism, and unpacked internalized ableism. We now reflect on these conversations, a process that inspired new thinking given how the duoethnographic process required us to be open to change.
Recognizing Allyship as Relational and Structural
Elisa: We started our dialogues exploring how our identities mediated the relationship between disability studies and allyship, and ultimately discussed at length how we understand what allyship means. I was interested in how we initially discussed allyship as relational while also recognizing that allyship requires working toward structural change.
Megan: I too appreciated how we both initially focused on allyship as relational. I think we both came to that understanding through our own experiences with allyship in the context of our marginalized identities — mine as a disabled person and yours as a Jewish lesbian. We see allies as partners who deeply understand each other, and we value our relationship with each other as teacher-student, mentor-mentee, co-instructors, and friends. We don't frame ourselves as "allies" to one another. Ally is not a label I use for you, because allyship is not a label. It's who you are through your actions in these relationships (Ponder, 2018).
Elisa: Just as I don't put labels on you. And even though we both initially focused on the relational aspect of allyship, in part because we were thinking about the nature of our relationship, we both agreed that allyship goes beyond the interpersonal. We drew on three components of allyship from disability studies: (1) being aware of our own privileges; (2) taking action to work against ableism; and (3) taking this action in partnership with disabled people and amplifying their voices (e.g., Disability Rights Activists, n.d.; Kendall, n.d.; Peters, et al., 2010). We agreed that, for us, allyship is an umbrella term for a range of actions, including advocacy, activism, and interpersonal support. We know there is pushback against the term "ally" in social justice movements, with some people in favor of "accomplice" (Harden & Harden-Moore, 2019; Indigenous Media Action; Powell & Kelly, 2017). "Accomplice" denotes doing the difficult and often risky anti-oppressive work against ableism in partnership with the disability community, rather than only being supportive of those most impacted by ableism. We agreed, though, that allyship also requires this partnership and anti-oppressive work, and that the pushback against the term "allyship" is in part a result of it often being misused, when partnerships and the structural component of allyship are not fully considered.
The identity differences that you and I have didn't seem to mediate our broad understanding of allyship, which we developed together through a disability studies perspective, especially our co-taught course, and was inspired for both of us through our marginalized identities. For me, as a Jewish lesbian, I have always appreciated a range of ways that people have demonstrated allyship, and have been especially grateful when people recognize the intersection of the systems of oppression that shape these identities. For instance, my synagogue recently did an event during Pride month to learn from the stories of LGBTQ Jews for the purpose of creating a more inclusive congregation. To be in a religious space — where my partner and I were married and our children received their Hebrew names — discussing my lesbian identity was truly special and inclusive. Although some might not deem the creation of community space to be an act of allyship, I experienced it as allyship because the synagogue leadership used their privilege to create space for me to teach people about oppression, which I value doing, and generate strategies for working to disrupt these systems. All that to say, it is interesting and important that our different marginalized identities contribute to a shared understanding of allyship. This shared understanding speaks to the interconnected nature of systems of oppression.
Considering the Power in Language
Elisa: Throughout our dialogues, we had meaningful conversations about language. It was important that we did so because language is rooted in and perpetuates power, which we both have discussed in disability studies courses as we critiqued ableist language, such as "lame," "crazy," and "obsessive-compulsive" (e.g., Cohen-Rottenberg, 2018; Linton, 1998). Our conversation about language choices around "ally" and "accomplice" was especially interesting.
Megan: Yes! As a writer, I think it is especially important to consider the semantic connotations of the words we use to describe our relationship to the disability community and to one another. I was particularly interested to learn that "accompliceship" has recently been suggested as an alternative to "allyship" in social justice movements. As a fairly widely used term across marginalized identity communities, commentary on the website Indigenous Media Action (2014) notes that the word "ally" has become "disembodied from any real mutual understanding of support. The term ally has been rendered ineffective and meaningless."
But I wondered in our dialogues about "accompliceship" as an alternative. An accomplice, of course, is someone who has aided in a crime. This term does connote more of a side-by-side relationship than "ally," which sometimes indicates a power differential. But by using "accomplice," are we implying supporting the disability community — or any other marginalized identity community — is a subversive activity? To suggest that amplifying disabled perspectives, or working alongside the disability community for access and inclusion, is somehow deviant feels misleading to me.
Elisa: Although we acknowledge that people have different perspectives on the terms "ally" and "accomplice" based on their own experiences, this is another area where I think our different social identities did not necessarily mediate our perspectives — except that internalized ableism, a concept we discussed in some depth, shaped some of your initial perspectives. I thought about internalized ableism and language when you asked why we say someone is "complicit in ableism" when complicit implies something negative and it is the norm to act ableist. You stopped yourself then, noting that by suggesting a person is not doing something wrong by merely perpetuating the norm — that by suggesting not actively engaging in allyship or accompliceship is not inherently wrong, or criminal — you felt you were actually perpetuating the norm - an ableist norm. Your doing so, Megan, is not ableist since internalized ableism is the result of non-disabled people perpetuating ableism to such an extent that it is an unquestioned power-laden norm woven into the fabric of society (Campbell, 2009). When ableism causes you to believe you are acting in an ableist manner, this again demonstrates the insidious nature of ableism. Disability allies must expose and disrupt ableism so that it is not the norm.
At the same time, however, it is important that we recognize that we are white women who have chosen to use "ally" despite it being repudiated by some racially minoritized groups. In some ways, we are flexing our white privilege by doing so. We continue to use "ally" because it is the term through which we have been socialized in our disability studies experiences, and more importantly, we do so because we commit to using our privilege to educate others who use the term "allyship" that doing so requires actively working against systemic ableism. We, of course, respect others' decisions to use "accomplice" and their reasons for doing so.
Megan: I agree, and we also noted that the relational solidarity we call allyship is a continuous action and not a discrete action that can be "completed." Allyship is a process and therefore should be described in fluid language — for example, we "act as" allies rather than declaratively "being" allies. This mindset perhaps addresses part of the concern Indigenous Media Action (2014) registers with the perceived meaninglessness of the term "ally": many people have come to adopt "ally" as a title rather than as an ongoing process and aspiration. I hope we can educate against this limited mindset.
Developing a Nuanced Perspective on Intersectional Ableism and Allyship
Elisa: Even though we see allyship similarly, our social identities did to some extent mediate what it meant for us as two white women to come to this shared understanding. For me, as a professor who studies critical perspectives on identity, and also as someone who identifies as Jewish and lesbian and therefore feels a sense of connection with other marginalized identities, it was important that we think intersectionally about allyship. I thought about how allyship should be connected to disability justice. Disability justice is a contemporary movement founded by queer disabled people of color that works to disrupt interconnected systems of oppression through coalition building to foster wholeness for multiply marginalized disabled people (Berne, 2015; Mingus, 2017). Just as disability studies needs to be intersectional, focusing on the "needs, perspectives, and interests of marginalized people with disabilities" (Miles, Nishida, & Forber-Pratt, 2017), disability allyship must not be only for the needs of white, cisgender, heterosexual people (Lemus-Mosgrovejo, 2019). I initially felt that you, Megan, were unsure about intersectional allyship. But I also understand that what you were saying was more nuanced and that you embraced the idea but had concerns about how we as two white women could be truly intersectional in our allyship.
Megan: Right. That was an interesting conversation, and one that I fear will be misconstrued. I think one concern I had was that you and I, in this single piece of writing, will never be able to do justice to the true intersectionality of disability (or of any other marginalized identity). Not only do we not have the space to do so, but of course, neither of us are fully equipped to do so. We do have some differences in identities, life experiences, and the literature with which we have engaged — all of which mediate our perspectives in this conversation — but the fact is that we are two white, cisgender women who come from similar economic backgrounds and share similar worldviews. I initially felt that we shouldn't do intersectionality an injustice by claiming to understand it fully, but instead mark our conversation with a red flag — offer it with the caveat that it represents only the lived experiences of you and I in this duoethnographic format.
The other thought about intersectionality that emerged for me had to do with my personal experience as a disabled person who during my time at Miami took a number of disability studies classes and was involved in the effort to have disability recognized as an aspect of diversity on an institutional level. My disability studies courses taught me how important it was to center disability. Yet I struggled to reconcile this idea with the necessity of being intersectional — in thought and action.
I found it relatively easy to understand why disability should be centered in disability studies scholarship. Of course, I reasoned, disabled people are the experts on disability studies, given their lived experience. It made sense, then, that special emphasis should be placed on their writing and research in disability studies, as opposed to that of nondisabled scholars. But when I thought about centering disability in a societal context rather than a purely academic one, I became uneasy. Just as I do not see this duoethnography as being a truly intersectional work, I worried that centering disability within all of society would do other marginalized identities an injustice. Disability studies is, by definition, about disability (although it is experienced intersectionality). Society as a whole is not all about disability, nor do I believe it should be. Therefore, it seemed wrong — and antithetical to ally behavior — to privilege disabled perspectives above those of any other marginalized identity in society at large.
Again, here I acknowledge a disconnect in my own parallel lines of thought. Counter-storytelling, and the centering of disabled perspectives, is crucial in ensuring the disability community is thoroughly represented in the classroom, on campus, and in scholarly writing. Counter-storytelling is an approach I learned is often used in critical race theory (Campbell, 2009; Delgado & Stefancic, 2017). Counter-storytelling allows members of marginalized groups to challenge common assumptions and prejudices about their identities that have been told through dominant narratives rooted in privilege. But at the same time, it can be undeniably an academic notion — one that, in practice, often meets with friction and emotion. When a disabled person expends the time and effort to engage in counter-storytelling, only to have their audience not react in the way they were hoping or anticipating, what consequence does that have for the disabled person and their likelihood of engaging in future counter-storytelling? More broadly, how does one center the lived experiences of disabled people without placing the onus for doing so squarely onto those disabled people?
That perspective left me unsure of how to proceed with disability advocacy and allyship on campus. My work with the disability community was motivated by the fact that there had not been a space or organization on campus that was devoted to centering disability, at least within its own walls. On the other hand, members of many other marginalized identities seemed to have an organization to mobilize themselves or a space on campus. The mission of those of us doing disability work became to put disability on that plane, rather than having it exist seemingly a step below other marginalized identities. We were fighting to have disability recognized, and that sometimes felt like enough of a challenge without trying to factor in intersectional perspectives as well — as much as we all valued and tried to amplify those experiences. It was, and is, a fine line. I never want to dismiss intersectionality, but I also know firsthand how difficult it can be to even have disability recognized on a systemic level.
Of course, I recognize that people experience disability differently depending on their other social identities — and I've seen that firsthand through conversations with others in the disability community. They, and you, Elisa, have helped me understand intersectional ableism, and I acknowledge its importance. Allyship means that ableism be addressed through an intersectional lens. And I want to work more on doing so. As a disabled person committed to the disability community, I also know it can be challenging to have disability acknowledged at all as a form of diversity. Allyship must be intersectional, and making it so is messy and complicated.
Elisa: I very much respect your thoughtful explanation, Megan. I also know that it's not fair of me to say that I initially felt some uncertainty from you. I sometimes wonder the extent to which I have hidden behind some of my privileges to write and teach about allyship through a critical disability studies lens, but have not always done the very difficult intersectional action — truly worked toward disability justice — beyond teaching. This conversation about intersectional ableism, as well as our conversation about internalized ableism, reminds me that I sometimes can be too academic about these topics and miss the realities of people's lived experiences. Your lived experiences as a disabled person engaged in disability allyship work provides a valuable perspective that I respect. Our conversations and reflections on the disability studies class have prompted me to get out of my head and push not only my thinking about intersectional allyship but, I hope, some of my actions as well. And I appreciate your reminder that I'm doing so as a white cisgender woman, just as you are.
I value your vulnerability in stating a perspective about intersectional ableism with which others might not agree but is one you are trying to reconcile for yourself. Like you, I know that intersectional allyship is necessary to strive toward because the experience of disability is not the same for all people given the realities of intersecting systems of oppression. The disability justice movement has brought these realities to light in critical ways (Berne, 2017; Mingus, 2017). You, though, have reminded me of some of the complicated realities of intersectional allyship, especially in predominantly white spaces where disability and ableism are often unrecognized. I hope we can both work toward intersectional allyship, while also realizing our positionality and understanding the contexts in which we are working.
Bringing Internalized Ableism and Privilege to Light
Megan: Although our conversation about intersectional ableism was a crucial part of this work, and stretched my thinking, for me, our discussions of internalized ableism have been the most revelatory part of this duoethnographic process — and one of the most important concepts that has come to light through years of talking together about disability studies and disability identity. I have always been conscious of my identity as a disabled person, and have been comfortable thinking and talking about disability, but I had never heard of internalized ableism until you mentioned it during my participation in your research project.
You explained to me that internalized ableism has been discussed in the literature on disability identity, and suggested it might help me make sense of my own complex relationship with the idea of allyship. Campbell (2009), you told me, likens internalized ableism to internalized racism, noting that both produce self-hatred as a result of the insidious nature of systems of oppression. Explaining that "[w]ithin ableism the existence of disability is tolerated rather than celebrated as a part of human diversification," Campbell observed that disabled people enact internalized ableism in two ways: "the distancing of disabled people from each other and the emulation by disabled people of ableist norms" (p. 155). The latter often results in efforts to perform able-bodiedness through passing (Campbell, 2008). Citing Leary (1999, p. 85), Campbell (2009) explained that "Passing occurs when there is perceived danger in disclosure… It represents a form of self-protection that nevertheless usually disables, and sometimes destroys, the self it means to safeguard" (p. 156).
The term "internalized ableism" explained, and named, so much of how I often felt about my disabled identity, particularly in the classroom. I am grateful to have a phrase to validate a phenomenon I and we have talked about before, but it's also a bit infuriating to discover how embedded in me it is. For example, I realized during our conversations that I have expended considerable effort trying to pass in the classroom. Though I'd long been aware of my right to accommodations in school — and had been fortunate enough to have teachers and administrators who went above and beyond to provide them — I had always felt that those accommodations made me a burden in the classroom. Instead of asserting myself by asking for accommodations, risking annoying my teacher or making a scene in front of other students, I engaged in Campbell's self-protection and did the best I could without them.
I felt that looking out for me was just one more task on my instructors' endless to-do lists, and that I was inconveniencing them sometimes just by being present (despite their every effort to assure me otherwise). This was never far from my mind when, as your student, I asked you for an accommodation in our Disability Allies course.
Elisa: I appreciate your sharing these thoughts with me, Megan. Our conversations about how internalized ableism has shaped your experiences as a disabled person also stood out to me most from our conversations. The concerns you had coming into the Disability Allies course are ones I wish I had been aware of at the time. I'm realizing now that my own privilege stood in the way. I have also since come to learn about a concept called psycho-emotional disablism, which is the idea that disability not only limits accessibility but can also limit a disabled person's psychological well-being, specifically self-esteem and confidence (Thomas, 1999). The worries you had coming into a disability studies class about burdening me speak to how disability has possibly impacted your self-esteem and confidence.
I was saddened to learn that you feel that you were burdening me when you needed accommodations in class and that you never wanted me or others to feel pressured to act as an ally. The fact that internalized ableism shows up in a disability studies course is a reminder of how insidious ableism is in education. I was also disheartened to realize that you were concerned that the disabled students in the course participated too much — you were worried about having "monopolized" discussion periods — during the semester in which you were a student in that course. None of these thoughts ever crossed my mind, and the fact that they had not makes me complicit in ableism. To be unaware of the way internalized ableism, and possibly psycho-emotional disablism, caused you to feel guilty, a burden, and not worthy of being centered in a disability studies course is a result of my non-disabled privilege. I came into our dialogues focusing on my own possible inadequacy as an ally rather than thinking about your experiences as a disabled person working with allies. This casual approach to internalized ableism was a stark reminder of how privilege shapes my experiences and limits some my effectiveness acting as an ally. I am grateful that you shared your experiences with internalized ableism. I hope that learning about the concept can help to loosen its hold on you, while making me more aware of how disabled people might feel about allyship and make sure I am centering disabled people and not myself. As someone trying to act as an ally, I will now be more explicit in my syllabi that accommodations are not a burden but in fact are an important way to resist ableism. I will also encourage students to point out to me, in whatever way is most comfortable for them, where they notice ableism in my course structure and content.
Megan: Even as you say that, I feel uncomfortable with the idea that I, as a disabled person, need to be "centered." I suppose that's internalized ableism, and maybe psychosocial disablism, which seems to me a corollary of internalized ableism, talking. Of course, that is the fascinating and frustrating nuance of this conversation for me, but at some level, the idea that my perspective ought to be prioritized above others' perspectives seems counterintuitive.
Elisa: And yet, this is the idea we taught together in our course about allyship. It's also important for us to keep in mind that it is the nature of oppression to create the perception that only one identity can be centered. Privilege pits marginalized identities and systems of oppression against each other, further decreasing their power within these systems. This phenomenon denies the realities of intersectional identities and the strength in coalition-building (Dill & Zambrana, 2009). Therefore, some of your internalized ableism may also be a result of multiple systems of oppression, not only ableism, which is part of why it is so difficult to recognize and overcome.
This conversation about internalized ableism has made me aware of ideas about which I thought I was already aware (again, a result of my non-disabled privilege), and I am hopeful will make me more effective acting as an ally and teacher not only in disability studies courses but all classes. As a non-disabled person teaching a disability studies course on allyship, I need this heightened awareness of my privileges. I know I will now spend class time in the disability studies allies course discussing internalized ableism, since there will be disabled people in the class who might have mixed feelings about allyship given their own possible internalized ableism. I need to remember that allyship is difficult for disabled people too, not only those who are non-disabled. Naming internalized ableism might empower disabled students in the class to expect more from allies rather than being held back by their own guilt or uncertainty.
Megan: I think that naming internalized ableism might have another benefit in the classroom, too — making space for disabled students to engage in counter-storytelling, even though doing so is sometimes risky, as I commented earlier. Within the disability allyship course, there is a unit dedicated to exploring media representation of disability and the phenomenon of inspiration porn (Young, 2014). Discussing internalized ableism in this context, as Campbell (2009) suggests, would allow students to reclaim the narrative, to tell their own truthful stories of disability. I remember how I appreciated the chance to do so when you and I co-taught that course; I was able to tell the students about my disability, during one of the first class sessions, on my own terms. This set the tone for the rest of the semester, as I continued to share my perspective as a peer-leader; my own counter-storytelling allowed all of us in the classroom to challenge common assumptions about my life as a disabled person, together. Instead of reflexively feeling pity toward me, or approaching our interactions with the uncertainty and stiltedness that so often occurs around disability, students in the course were able to ask questions directly of me in a carefully cultivated classroom space.
More broadly, my involvement in disability studies courses let me encounter my own disability in a new light — as an enriching addition to the curriculum, rather than only a circumstance requiring accommodation, a gap to be bridged with the help of academic supports and facilitated by a disability services professional. Rather than proving I could be a valuable contributor to the class in spite of my disability, it became an asset, a firsthand perspective I could share to enhance classroom discussion. I added to class because of my disability.
Elisa: I'm glad that disability studies courses provided you these opportunities for counter-storytelling that pushes back against internalized ableism. At the same time, I know that I must be careful about not relying on disabled students to educate others. I need to negotiate centering disabled students' stories and not putting extra labor on disabled students to benefit non-disabled students. As with students of color telling their narratives, disabled students need to be able to opt in and out of counter-storytelling (Cabrera, Franklin, & Watson, 2017).
Megan: Absolutely. Oftentimes, the burden of educating others — peers and faculty alike — falls to marginalized students who happen to be enrolled in diversity-related courses. I genuinely enjoy talking and thinking about disability issues and sharing my perspectives, so I have never experienced counter-storytelling as burdensome or obligatory in the disability studies courses that I have been in as a student or co-teacher. But it is also true that I have never been the only disabled student in those classroom spaces, and my peers have often been equally willing to share their insights — meaning that there has scarcely been pressure on me, whether perceived or manifested, to act as the sole disabled voice in the classroom.
But outside of the classroom, as I alluded to earlier, I have acutely felt the responsibility of assuming that spokesperson role. Because I was one of the leaders of the only disability-specific student organization on campus — which itself had a small membership body — inquiries from other student organizations or faculty members about the disability experience were often routed to me. Often, these were not matters on which I felt personally qualified to comment, as I am only one person with one personally-lived experience of disability.
While I was grateful that the larger campus community was seeking out our student organization as a resource for learning about disability, the sheer number of these connections came to overwhelm me. I felt responsible for ensuring that I or someone else in the organization responded to each request, whether it entailed writing an email, speaking to a class or student organization, or serving as a disability-interest representative on a committee that was planning an event or project. This obligation stemmed from my de facto position as an ambassador of the disability community and my desire to be a committed citizen of our campus; I felt that if I did not attend to these inquiries, no one would. Likewise, if I did not respond to these (always well-meaning) requests for feedback or support, I could not be said to be a responsible representative of our group or the disabled population on campus. Looking back, I suppose that much of this perception was rooted in internalized ableism — but regardless, it existed and resulted in significant labor and, consequently, burnout. Like counter-storytelling, student advocacy and activism must be voluntary, and conducted such that it does not exact an undue physical or emotional toll on the students. Students with disabilities should not impose on themselves, or allow others to impose upon them, a level of work that impedes their balance between academics, advocacy, and personal life. That, of course, is more easily said than done.
Elisa: I appreciate how you move counter-storytelling out of the realm of only the classroom and share how the pressure to tell your story — and stories that are not yours — had some negative consequences for you. This is not something I had heard you discuss before in the time we have been together. The fact that your desire to do so was connected in part to internalized ableism is also an important realization for me. There is an ableist irony to adding more demands into the life of a disabled student who is already working hard to comply with the normalized (i.e., ableist) fast pace of academic life (Samuels, 2017). You have helped make clear that counter-stories ought to be empowering for disabled students, which requires that they have agency in determining how and when counter-stories are shared, and for what purpose. Connecting this point to allyship, you illuminate how allyship is about both respecting the disabled individual and also changing the ableist context. As ableist contexts change, less extra labor will hopefully be put onto disabled students. At the same time, respectfully hearing and amplifying disabled students' counter-stories is important for allyship. Your perspectives add greater depth to the nuanced meanings of allyship that we have discussed, and I have deeply appreciated this dialogue.
Reflection on Dialogue Experience
Megan: I've really enjoyed thinking about why each of us is drawn to disability allyship, and how we each perceive the other's relationship to that process. We had a chuckle over the irony of the situation — me praising your allyship as an example I live by, but worrying that my presence in some way obligated you to allyship. All the while, you feel you could be doing more to act as an ally to me and to others. But I think the greater irony is that neither of us will ever be fully convinced of what the other knows to be true — my deeply-ingrained belief that on some level, I'll always be inconveniencing people by way of needing accommodation, and our shared belief that we're not doing enough for the disability community acting as allies. It's odd that, given how much we respect one another (and others who say similar things to each of us), we'll probably never quite be able to reconcile that paradox.
Elisa: I too am struck by the irony and paradox you point out. I'm also struck by the fact that before our conversations, I had not had such intimate conversations with a disabled person about disability allyship. Sure, I have listened to disabled people share their perspectives on allyship and had meaningful conversations with them, but I have never delved into the complexities and emotions in such a personal and deep manner. Our vulnerable conversations transformed how I think about allyship. I still agree with the components of allyship we discussed in our dialogue, but the way these conversations took our relationship to another level makes me think about the rich potential of allyship for creating genuine partners. I respect and have learned much from disability activist Mia Mingus. She speaks about the "magnificent vulnerability" that can result from interdependence where disabled and non-disabled people recognize how they need each other and struggle together for liberation (Mingus, 2010, 2017). I think our conversations truly reflected how we need each other: to learn, to grow, to feel more capable of working together to dismantle ableism within our own spheres of influence, and to appreciate how we both need this work done, despite our identity differences and in different ways, to live more freely.
Moving Forward Together
We are now considering how to move forward in our development as allies and also some of the key ideas we hope to share with others on this journey. We both feel more committed to exploring how ableism shapes our identities and relationships, and subsequently our allyship behavior. Our conversations across difference reminded us of how much we can learn about ourselves and others when we take the time to trust and question rather than assuming we know another's truth. Disability studies was the impetus for much of our ally development, and we filtered that learning through our different social identities. We believe we will both act as more effective allies as a result. We hope our conversations reveal the introspection that is necessary for allyship and the mutual learning that comes from dialogues across different identities and life experiences.
Because allyship involves action, not only introspection, we have also begun to change some of our practices in the weeks after our dialogues. Elisa, for instance, is changing her future syllabi regarding accommodations and internalized ableism, and being more conscious about not letting her intersecting privileges within an ableist system contribute to assumptions about the experiences of disabled students. Megan is more directly seeking out chances to practice intersectional allyship — particularly as she pursues post-undergraduate life — and continues to explore her relationship to internalized ableism, which she hopes will be the subject of more of her writing going forward.
At the same time, we know we still have much to learn, particularly in understanding intersectional perspectives that do not reflect our own lived experiences. We realize that writing about how we are theoretically committed to intersectional allyship grounded in the disability justice movement (Berne, 2015; Mingus, 2017) is different than enacting such allyship. We do not want to be well-intentioned white people who use the difficulty of intersectional allyship as an excuse not to engage in that work. Disability justice, as opposed to disability rights, seeks, among other goals, wholeness for disabled people with multiple marginalized identities. Queer disabled people of color have taught us how important intersectionality is to their visibility; without intersectional perspectives, their lives and stories are non-existent (e.g., Abes & Wallace 2018). Reflecting on our privileges, we consider how intersectionality shapes some of the ideas we talked through in our dialogues. For instance, internalized ableism is experienced differently when it intersects with other systems of oppression, such as racism and classism. Megan's experiences with internalized ableism in the classroom that caused her to feel like a burden when asking for accommodations were deeply challenging for her because of ableism's push for students to fit into an unattainable norm (McRuer, 2006). However, internalized ableism is exacerbated when ableism intersects with racism and classism. Educators often perceive students of color and low-income students who are not succeeding academically as misbehaving "problems" who do not meet education systems' standards of "goodness" (Broderick & Leonardo, 2016). These students are often considered disabled and relegated to lower standards rather than being seen as students worthy of success through accommodations. Disability deviates from goodness (Broderick & Leonardo, 2016). The internalized ableism these students might experience, therefore, differs from that of a white or higher-income disabled student.
Although we are still learning to translate thoughts into more intersectional action, the words of Mia Mingus (2018) resonate with both of us. Mingus explained that disability justice means that disabled people, especially those who live at the intersections of multiple marginalized identities, deserve more than "a seat at someone else's table," but instead "to be able to build something more magnificent than a table, together with our accomplices" (Mingus, 2018). That is, rather than working within systems that perpetuate privilege, we need to re-imagine those systems. In order to act as allies (or accomplices) who build the "magnificent" new realities, we both have more to learn about ourselves and others and need to spend more time learning from stories of disabled people with different social identities, lived experiences, and worldviews than ours.
This perspective on disability justice informing disability allyship extends earlier work done on social justice and disability allyship (Broido, 2000; Evans, Assadi, & Herriot, 2005) through the inclusion of intersectionality and focus on the creation of non-oppressive systems. The more inclusive perspective on allyship toward which we aspire embraces emerging models of disability in higher education, including the social justice model and disability justice (Evans, et al, 2017). It also extends Broido's (2000) work by demonstrating in depth how allyship is enhanced through meaningful dialogue across identity differences and experiences with ableism. This perspective highlights disabled students' capacity to foster allyship in others, a perspective that focuses on their assets rather than positioning them as only marginalized students. Still, we have so much room still to grow. Although this duoethnography was grounded in our personal relationship across disability differences, we hope to continue learning how not to get comfortable in the relational component of allyship. As disability justice advocates remind us, we need to truly do structural work, as challenging as it might be in contexts that do not always acknowledge disability. We hope others also take these risks.
Indeed, we hope that our duoethnographic conversation encourages others to engage in meaningful, nuanced, messy, reflective, action-oriented allyship together. We share the transformational learning that occurred for us so that others might engage in vulnerable relationship-building across differences to explore the complexities of allyship. We encourage that such dialogues across differences occur with vulnerability; curiosity that welcomes challenge, discomfort, and personal growth; explicit conversation about the multiple power dynamics across identities; and an emotional intimacy that truly allows people to get a glimpse into what is at stake when we come together to discuss the impact of living within and working against systemic oppression. We were grateful for the opportunity we had for meaningful dialogue and leave this study with new questions for ourselves, with resolve tinged by uncertainty. We hope our questions inspire others to reflect, dialogue, question, and act.
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