Our "Rare" Children Deserve Better
Mothers of Children with Rare Diseases Speak Out
Keywords:
disability justice, critical disability studies, rare diseases, genetic conditions, Pitt Hopkins Syndrome, Chromosome 18q, rare childrenAbstract
“Difficult, stressful, frustrating – not the syndrome, not the persons with the disabilities, but our ableist society.”
Drawing on my conversations with six mothers of children with rare diseases, I use a critical disability framework and an intersectional lens to explore the limitations of community and healthcare services for children with rare diseases and the implications on parental mental health as they attempt to navigate services for their children. In this paper, I shed light on the hardships and battles experienced by parents of children with rare diseases as they attempt to access community and health care resources and services for their children. These hardships are exacerbated when parents attempt to advocate for acknowledgement and acceptance and inclusion in the world. From initial diagnosis to interactions with health care and broader supports, the effects of a “rare” disease greatly impact the lives of families. The purpose of this research is to raise awareness of rare diseases – specifically, Chromosome 18q Deletion and Pitt-Hopkins Syndrome. As a new parent of a child with rare diseases myself, I present the struggles of families like my own and uncover the deeply-rooted ableist structure of the society we live in while looking at the implications for future social work practice. Our “rare” children deserve better.
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