We wanted a form of communication that leveled the playing field between people who have and live with rare genetic conditions and people who study and treat them. As very few people write poetry on a regular basis, we thought of poetry as an ideal mechanism. Peoples' general lack of familiarity with writing poems makes poetry a great pretext task in which they focus on the expression rather than self-consciousness about the subject being expressed. In particular, we settled on the Cinquain Poem. It has a regular structure that serves to guide creativity, in which one is encouraged to express themselves about their chosen topic. It also lends itself to "braiding", in which the lines from a number of poems can be woven together to make new poems. This helped us to take peoples' individual perspectives and weave them together into shared experiences and also serves as an analogy for the genetic process of recombination.
Genetic Alliance Workshop
Our Genetic Alliance workshop was attended by a diverse audience of people with rare genetic conditions, their family members, researchers, and clinicians, (as well as us).
We split up into groups and wrote individual poems, which we then talked about within our group. We then wrote recombined poems according to what resonated with each of us from the original poems. The resulting poems and recombined poems are displayed below.
Some groups also wrote poems about Covid-19 and the experience of Lockdown, and these are also presented below.
We would like to thank Genetic Alliance for giving us the opportunity to run this workshop, and also to thank everyone who took part. It was an amazing experience for us to be part of.
Genetic Alliance: Group 1
Original Poems
Recombined Poems
Genetic Alliance: Group 2
Original Poems
Recombined Poems
Genetic Alliance: Group 3
Original Poems
Recombined Poems
Genetic Alliance: Group 4
Original Poems
Recombined Poems
Genetic Alliance: Group 5
Original Poems
Recombined Poems
Genetic Alliance: Covid-19 and Lockdown Poems
Social media poetry call
We put a call out on social media across a number of rare genetic condition communities. We received a great selection of responses, and we would like to thank everyone who took the time to write and submit a poem.
