Perfection is such a potent drug. I have spent a lot of time “perfecting” this email too; just like I spend time perfecting how I do things or say things or how my body and mind are. Ever since I fell ill (chronic pain from Fibromyalgia and Rheumatoid Arthritis and subsequent fatigue) at 26, four years ago, I have felt a societal pressure to “get better”, to improve my body from its state of imperfection.
This is interesting to reflect on because my father has lived with diabetes for half of his life and we rally around him with ease. He has systemic care from doctors recognising his illness, to treating it and him without judgment. The high prevalence of diabetes has led to a dearth of awareness campaigns, research and institutions which help in doing this. My journey through a lesser known and still shrouded in mystery arena of auto-immune conditions made my experience different and this is true for a whole host of illnesses and disabilities. It reminded me of the child with learning disabilities – often discussed these days – where the problem is still located within the child rather than in the system that has difficulty adapting outside the norm.
My engagement with disability literature since my diagnosis has shifted how I see healing and wellbeing. I have begun to see them as a journey rather than a destination where wellness was attained and illness discarded. Eli Care, author of Brilliant Imperfections, writes how disability isn’t just manifested in the illness itself “(…) but rather in a whole host of stereotypes and damaging material realities” like these set ideas of wellness and hence reminds how “(…) the disability rights movement joins the ongoing work of locating the problems of social injustice not in our bodies but in the world”.
In a lot of disability work there is so much resilience, survival and the navigation of good days, bad days. But in locating the problem within an individual, we dismiss all this vibrant life. Instead we focus on “fixing the broken”.
On the occasion of International Day of People With Disabilities Day (3rd December), it is important to ask ourselves how we can continue to shift our imaginations and become more inclusive and diverse in order to build systems that bring greater self-determination and voice to the community.
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