I am pleased to be able to share a link to a journal article that I have co-authored: Down Syndrome as Pure Simulacrum https://www.liverpooluniversitypress.co.uk/journals/article/65783/
Unfortunately this article (like many academic articles) is behind a journal paywall, which means if you do not have university access you cannot read it. The journal has, however, given us permission to share it with anyone who is a parent/carer of a child or young person with Down syndrome, or indeed people with Down syndrome. Please email me if you meet this criteria and would like a copy. We will also attempt to write an Easy Read version of the article as soon as possible.
The main premise of the article is that there is a dominant negative/deficit narrative surrounding Down syndrome, and that it is such a powerful and all encompassing image that it also incorporates the more positive cultural representations that are frequently celebrated, for instance by parents or in marketing campaigns. As a result, we argue that these positive images simply reinforce the negative images because image alone is not enough for there to be change. We contend that instead it is necessary for a more complex, more real engagement with people with Down syndrome to take place, and that we need more cultural representations that reflect this.
A couple of years ago I had the great pleasure of watching Sarah Gordy in Jellyfish on the stage. It was a captivating but also challenging performance. We discuss this play, written by Ben Weatherill, in the article, as an example of the type of cultural representation we feel is needed – a representation that does not easily become absorbed within the image of Down syndrome that we might have in our heads if we do not know someone with the genetic condition. A representation that affects the audience, makes us stop and think and recognise that the image we have does not reflect the real lives of people with Down syndrome – the discrimination and assumptions they face, the desires they have, the way they would like to live their lives.
Our intention is to challenge the pervasive image that persists, calling for greater inclusion and presence of real people with Down syndrome in culture and society.