Bioethics Blogs

Un/Inhabitable Worlds: The Curious Case of Down’s Syndrome by Gareth Thomas

In her superb exposition of staring, Garland-Thomson (2009) draws attention to Chris Rush’s artistic piece Swim 2 which depicts a woman with Down’s syndrome in a regal pose (figure 1).

Figure 1: ‘Swim 2’ by Chris Rush. All rights reserved.

She continues:

The portrait invites us to stare, engrossed perhaps less with the “strangeness” of this woman’s disability and more with the strangeness of witnessing such dignity in a face that marks a life we have learned to imagine as unliveable and unworthy, as the kind of person we routinely detect in advance through medical technology and eliminate from our human community (2009: 83).

Garland-Thomson appears to mark two separate ‘orientations’ (Friedner 2015): one in which Down’s syndrome is afforded a positive social imaginary marked by dignity and worth, and another in which this condition is categorised as an existence without value. Likewise, I see two different and competing ways of enacting Down’s syndrome, that is, as both a negative pregnancy outcome (via prenatal technology) and as joyous and enlightening, and not the misfortune one may initially imagine on receipt of a diagnosis (via parental accounts). I explore these contentions below.

Prenatal Technology: A Troubled Relationship

Down’s syndrome is one of the most common genetic conditions in the world, affecting approximately one to two of every 1,000 live births in England and Wales alone (based on NHS statistics). People with Down’s syndrome are likely to have several symptoms such as learning difficulties, shortened limbs, reduced muscle tone, restricted growth, and a flat facial profile. However, it is by no means a simple or straightforward diagnostic category.

The views, opinions and positions expressed by these authors and blogs are theirs and do not necessarily represent that of the Bioethics Research Library and Kennedy Institute of Ethics or Georgetown University.