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technical paper
Our Long Ride on the Short Bus: Syndemics, Support, and the Social Security Disability System
keywords:
decolonization
mental health
ethics
Syndemics literature addresses illness burdens formed from unique social conditions in particular groups, creating disease clusters and vulnerable bodies. However, many social determinants of health tend to intersect and result in exacerbated morbidity, specifically in the instance of the caregiver and partner relationship. In this paper I address the mental health challenges of caregiving for a partner with a progressive illness. I argue that the syndemic relationship of our combined illness burdens, structural challenges in securing disability resources, and assumptions of traditional social support networks pulled us further into vulnerability and health degradation. I use a critical-interpretive perspective to discuss the structural violence in medicalization and its resulting internalization of self, creating a discordance in trust between service providers and assistance seekers. Based on ethnographic notes as well as follow up interviews, disability records and health statistics, I analyze the process from applying to maintaining disability services, and advocating for my partners autonomy while struggling to address my own health needs. Even in the most compassionate of American health care advocacy situations, support can be unreliable and contingent on strict economic guidelines. Family caregivers are met with continual scrutiny over intent and ability, and struggle with increased isolation, poverty, and stigma. My paper contributes to the anthropological discussion of caregiving and mental health by illustrating how barriers to creating and maintaining a therapeutic space for both partners in a long-term disability family setting create exponential detriments for all involved. Keywords: syndemics, disability, social services, mad studies, queer studies, ethnography