“‘What would it mean to esteem the disabled body for what it is?’ Sieber argues that current theories of the body, to the extent that they privilege empowerment, pleasure, and physical adaptability, fail to confront disability in any transformative way and cites this representational absence as one factor in the social and political neglect of the needs and perspectives of people with disabilities.” (Susannah B. Mintz, Unruly Bodies: Life Writing by Women With Disabilities, 2007, p.3)
Living with inflammatory bowel disease (IBD) has been a journey filled with immense challenges, both physical and emotional. Throughout this personal experience, I have discovered the solace and empowerment that come from considering myself a patient and embracing the identity of disability. In the face of the impossible demands of the modern world, these labels have provided me with respite, allowing me to prioritize self-care and find understanding amidst the chaos. Simultaneously, I have grappled with the complexities of identifying with disability and recognizing its transient nature as my abilities fluctuate from day to day. Most importantly, I I have arrived upon a sense of agency in being able to honor my challenges of living as a chronically ill person, with each time, that in a work interview, to a friend, to a new date or just about anyone in the world, that I have been able to say out loud that I am disabled in this way or these are my subjectivities that need to be acknowledged in how my lived experiences shapes this interaction that we are about to have. And each time, it has taken courage. The very breath of uttering this has stirred up a fog in my chest as I speak my truth to the other.
Finding Respite in Patienthood and Disability
As someone living with IBD, the constant battles with pain, fatigue, and the unpredictable nature of the disease have often left me feeling overwhelmed and exhausted. However, I have found solace and a sense of respite in embracing the identity of a patient. This acknowledgment of my condition has allowed me to prioritize self-care without guilt or shame. It has provided me with a tangible validation of my experiences, fostering a deeper understanding of myself and opening doors for support from both within and outside my community.
The Impossible Demands of an Ableist World
The demands of the modern world can feel unattainable and suffocating, particularly for those of us with chronic illnesses like IBD. The pressure to meet societal standards of productivity and success often exacerbates our symptoms, leaving us feeling inadequate and isolated. Identifying with disability has granted me the respite I need from these impossible demands. By reframing my experiences within the context of my condition, I have found relief from the relentless pursuit of an ideal that doesn't consider the unique challenges I face daily.
The Nuanced Challenges of Identifying with Disability
Navigating the identity of disability has been an intricate and deeply personal journey. At times, I have embraced the term wholeheartedly, finding strength and solidarity in connecting with a larger community of disabled individuals. Through this identification, I have gained a profound sense of belonging and discovered opportunities to advocate for change and inclusivity. However, there can be moments when one would hesitate to embrace the label due to the stigma and limitations it may carry, fearing being defined solely by my limitations in an ableist world, overlooking the resilience and strength that lies within one.
I’m reminded of a text by Susannah B. Mintz (2007), who talks about how viewing the body as a mere physical anatomical entity, makes it even more challenging for those with a disability or illness to openly articulate and express the pain and frustrations of impairment, the acknowledgement of which would play into the oppressive narrative which would consider such an admission to be evidence of disability being about physical and personal limitation after all. As a consequence, most of the disability theories focus on impairment as both a lived experience and an effect of socio-political discourse. However, the question of seeing the disabled or chronically ill body in its entirety (warts and all) perhaps continues to remain complicated.
Embracing the Transience of Disability
I feel, however, that there are days when one is more disabled than other days, and also days of great ability in a chronic illness. For me it is always a nuanced experience dependent on multiple factors that change constantly. It has been helpful for me to cultivate a view of disability as a transient state, a spectrum of different changing capacities each day, each hour, and each minute. And I wish others around me would understand the changing nature of it all. Sometimes there is a pressure to fit into a perception of being chronically ill, chronically, or of being absolutely healthy when in remission. Both don’t tell the complete picture. There are moments of great ability in one moment followed by feeling greatly disabled the next. From one task to next. It’s personal and it’s all relative. And I wish I had the right to assert my freedom to live as per my subjectivities (transient and ever changing subjectivities) rather than by conventional standards of consistent “normality.”
One remarkable aspect of living with IBD, and many other chronic conditions, is the ever-changing nature of disability. Some days, I find myself more abled, allowing me to engage in activities that would typically be challenging. This fluidity challenges the notion of disability as a static, permanent state. It teaches me to recognize and appreciate the transience of disability, acknowledging that my abilities can fluctuate from day to day. Embracing this transience has offered me a broader perspective, allowing me to celebrate the victories of each day while remaining aware of the potential challenges that lie ahead.
My personal journey with IBD and disability has been a profound exploration of identity, resilience, and self-discovery. Embracing my identity as a patient and a person with a disability has provided me with respite from the impossible demands of a very ableist world. It has allowed me to prioritize self-care and find validation in my experiences. However, navigating the complexities of identifying with disability has been a deeply personal process, with moments of great isolation. Nevertheless, recognizing the transience of disability has empowered me to embrace the fluidity of my abilities whether or not it is validated by the world, fostering a nuanced understanding of my own journey and a deep personal relationship with myself and my body. I continue to navigate the challenges of IBD, finding strength in my evolving identity and embracing the respite and transience that patienthood can sometimes bring, if at all.
References
Mintz, S. B. (2009). Unruly Bodies: Life Writing by Women with Disabilities. Chapel Hill, NC: University of North Carolina Press.