I’m at the point where I’m beginning to plan out my next research project. I’m finishing up work on one manuscript (Genocolonization) and writing another with my partner (Mary Douglas’ concept of “dirt” used as a lens by which to analyze racism).
Moving forward, I would like to interrogate the social construction of Down syndrome (DS). DS or trisomy 21 is the most common genetic disorder in the US, constituting about 1 in every 800 births. It is characterized by a third copy of the 21st chromosome, with the most common type due to an error during meiosis. There are certain physical charteristics, (i.e., epicanthal folds of the eyes, small features, low muscle tone, protruding tongue, short height), health concerns (i.e., thyroid issues, heart murmur, hearing loss, eyesight loss), and intellectual disability.
I have been surveying literature on Down syndrome and there seems to be a glaring hole; mainly, of all the research done on development, education, physiology, intelligence, etc., there is a lack of ethnography that engages people with Down syndrome. Parents, caretakers, teachers, case workers, doctors, and other professionals have been spoken to but it seems those actually living with DS have been omitted.
I try to avoid cynical speculation as to why this might be the case but it is hard to assume that it has nothing to do with the fact that those with DS are seen as unintelligent and lacking a internal mental and emotional life. There is the barrier in that people with special needs are a protected class and so research with them can be more difficult to get off the ground. However, given that many other studies have been done with those belonging to other protected statuses, it seems unlikely this is the sole reason.
I have a vested interest here; my brother has DS. Furthermore, he has a negative experience with it, saying “I don’t want to have Down syndrome.” He also really wants to date (he’s 29) but he has a rigid conception of the kind of woman that he wants to be with. He says “I want a hot girl.” When interrogating this statement further, it seems what he is really saying is that he wants a typically developed partner.
There is a lot to unpack in this statement, media hegemony over conceptions of attractiveness, self-value, societal values, and more. What I hope to do is develop a long-term project that talks to those professionals and caregivers above, but also to actively incorporate the voices of those that live with DS in the US.
While trisomy 21 is a genetic disorder, Down syndrome is constructed. What I mean is that there is a phenotype which then has value and meaning ascribed to it. The goal is to examine how people with Down syndrome are valued and thus integrated into society as members. The construction of Down syndrome has changed throughout time, with children being institutionalized for their entire lives, resulting in a low quality of life, low intelligence, and no social integration.
We have seen a transition to a more inclusive environment. For instance, Ángela Covadonga Bachiller, a woman with Down syndrome, was elected town councillor of Valladolid, Spain. However, we are also seeing an increase in the number of pregnancies terminated after DS diagnoses. This is not to say that women should not have control over their own bodies but instead, this reflects the value and meaning ascribed to the diagnosis.
A better understanding of the experience of Down syndrome and allowing those with Down syndrome to control their own narratives is essential if we want to better integrate people with Down syndrome into society in order to provide them with an opportunity to live fulfilling lives.
Stay tuned for further detail.