The always overdetermined metaphoric uses of disability efface and distort the lived experience of people with disabilities, evacuating the political significance of our lives – Rosemarie Garland-Thomson


The above poem is based on one of my earliest memories, of a measuring chart on the back of a bedroom door depicting a party clown. The poem's title is a reference to a way of naming the condition I have, a rare form of Ichthyosis – Non-bullous Ichthyosiform Erythroderma. When I was a child (during the 1970s and 80s) treatment for the condition included a high dose of Alimemazine, acting as an antihistamine and sedative. The poem is in the form of a sonnet, a form that can hold contrary aspects without necessarily looking for resolution.

Rachael Boast

Image of Rachael Boast credit: Rebecca MacPhail

We asked Rachael to write a poem for Rare Disease Day #RareDiseaseDay. You can find out more about the poem by reading a conversation between Rachael and The Poetry Society on their website. Visit https://poetrysociety.org.uk/

For more information about Rare Disease Day visit https://www.rarediseaseday.org/