My Family's Journey Through Disability

 (Based on my personal experiences)

My family's experience has been deeply affected by my youngest sister's diagnosis of meningitis. Meningitis itself is not a disability, but the aftereffects of meningitis can lead to disabilities. Meningitis is an inflammation of the membranes surrounding the brain and spinal cord. It can be caused by viruses, bacteria, or other microorganisms. My youngest sister, whom we address as “Tiny” was born as a seemingly typical child, but a fateful encounter with a harmful pathogen in the delivery room changed the course of her life. According to medical professionals, she is now considered "not normal." She faces challenges such as difficulty walking, cognitive impairments, and impaired vision, which significantly set her apart from what society deems as “normal”.

This situation made me reflect on a poignant memory from my family's history. I remembered how my great-grandmother had referred to my mother as having given birth to a "freak" child, making my mother cry. This situation perfectly aligns with the perspective discussed by authors like Adams, Rachel, Benjamin Reiss, and David Serlin, who emphasize that the concept of "normal" is not an inherent truth but rather a product of socio-cultural constructs.  My family has endured its share of suffering due to society's construction of what is deemed "normal." There were moments when my mother even considered not taking my younger sister away from home, fueled by her fear of judgment from others. When my sister goes out, to a public place many eyes are focused on her as she cannot walk properly like a “normal” human being. As the eldest sister and the eldest daughter in the family, I have felt a profound responsibility to care for my younger sister, particularly in the event of our parents' absence.

Disability and Queer Studies have provided a critical lens through which to view the normalization processes and socio-cultural constructions of identity. These fields encourage interdisciplinary conversations and challenge the overarching influence of societal norms and expectations on the lives of individuals, including my sister. By embracing the idea that disability is a valuable part of human diversity rather than a deviation from normative standards, I am determined to work towards a more inclusive and equitable society for my sister and others like her.

- Dahara de Silva-