Before delving into my argument, I must first situate myself by sharing my relationship to disability and the challenges of locating my disablement. Disablement is inherently unstable, shifting depending on social, medical, and internal conditions. My experience exists at the intersection of impairment and external barriers, shaped by both privilege and marginalization. These tensions are central to this paper as I interrogate whether disablement is inherent in my bodymind or produced by the environments and expectations around me. My positionality is especially relevant to this paper, as I draw from my personal experiences of disability to inform my arguments.
I am a cis-gendered, white and Indigenous (Maidu), light-skinned, queer, physically disabled woman with multiple mental health diagnoses that moderately impact my life. As O’Toole (2013)1 writes, “Each of these descriptors identifies but a small part of me and none of these provides insights into the complex intersections of holding these multiple locations” (p. 4).
For instance, even within these seemingly independent categories, I move between positions of power and oppression. I am disabled with severe daily chronic pain and mobility impairments. However, I also have access to free Medicare and Medicaid, a supportive primary care physician, ongoing pain medication, free mobility aids that usually cost thousands of dollars, and affordable housing in a progressive city.
I am a part-time chair user but can sometimes walk short distances unaided, allowing me a certain amount of privilege in how others perceive me and how I access my physical surroundings. Even though I hold a master’s degree and am a licensed psychotherapist, I am also very low-income due to my reliance on Social Security Disability Insurance (SSDI) for the majority of my income.
Within disability activism, it is standard practice to name our relationships to disability and intersecting identities. Linton (1998)2 emphasizes that “stating one’s position relative to the subject matter is of theoretical importance and it is also of political importance” (p. 13). Wendell (1996)3 notes that disability is shaped by both personal experience and external recognition (p. 12).
While activism has helped me articulate my experiences, my disablement remains unstable. My chronic pain is constant, yet its recognition depends on social and institutional contexts. This reinforces the central question of this paper: Is disablement inherent to my bodymind, or does it emerge through the structures that define and accommodate it?
For those of us with chronic pain, not disclosing impairments is rarely an option. As Bernhard (2015)4 explains:
“Most of us don’t have the luxury of keeping our medical conditions private. We have to explain to people why we can’t do this and why we can’t do that; why we have to cancel plans at the last minute; why we have to suddenly sit down or leave a gathering early. And so, instead of keeping this intimate part of our lives private, we’re forced to talk about it.” (p. 265)
This is why I share some of the details of my impairments here. They have a significant impact on how I experience the world and how the world experiences me.
My journey to my disability identity has been long and complex. I acquired my disability in my late 20s after a near-fatal car crash. I was expected to make a ‘full recovery,’ but years of physical therapy and diagnostic testing could not explain my continued falls and severe chronic pain. The transition from ‘not disabled’ to “disabled maybe-possibly-yes” (Sheppard, 2020, p. 41)5 was a long, uncertain process. For many, it is a gradual realization rather than a single event, making it difficult to claim a disability identity.
This experience of moving between disabled and non-disabled worlds is not uncommon. As Wendell (1996) describes, “[p]erhaps the type of disability I have also influences my appreciation of diversity in disability politics. Because my disability is no longer readily apparent, and because it is an illness whose symptoms vary greatly from day to day, I live between the world of the disabled and the world of the non-disabled” (p. 76). Like Wendell, I move between these spaces, sometimes being identified strongly with disabled communities and other times passing as non-disabled. This liminality makes claiming a disability identity complex, especially when impairment fluctuates or remains invisible to others.
For those with progressive or unpredictable conditions, the bodymind holds an uncertain future. There is an inherent tension between embracing disability identity and fearing further impairment. Kafer (2013)6 captures this contradiction by stating, “[a]s much joy as I find in communities of disabled people, and as much as I value my experiences as a disabled person, I am not interested in becoming more disabled than I already am” (p. 4). This uncertainty complicates the question of disablement’s location: If my impairments worsen, does that mean my disablement increases? Or does my disablement still depend on whether external structures accommodate my shifting needs?
Series so far:
Intro
- O’Toole, C. (2013). Disclosing our relationships to disabilities: An invitation for disability studies scholars. Disability Studies Quarterly, 33(2). https://doi.org/10.18061/dsq.v33i2.3708 ↩︎
- Linton, S. (1998). Disability studies/not disability studies. Disability & Society, 13(4), 525–540. ↩︎
- Wendell, S. (1996). The rejected body: Feminist philosophical reflections on disability. Routledge. ↩︎
- Bernhard, T. (2015). How to live well with chronic pain and illness: A mindful guide. Wisdom Publications. ↩︎
- Sheppard, E. (2020). Performing normal but becoming crip: Living with chronic pain. Scandinavian Journal of Disability Research, 22(1), 39–47. https://doi.org/10.16993/sjdr.619 ↩︎
- Kafer, A. (2013). Feminist, queer, crip. Indiana University Press. ↩︎
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