Problematizing How we "See" Down Syndrome

As World Down Syndrome Day approaches (March 21st) there are bound to be campaigns aimed at Down Syndrome awareness and inclusion. While well intentioned, it's important that these efforts are contextualized to ensure they do not perpetuate or reinforce stereotypes. 

With this in mind, the #HowDoYouSeeMe campaign strikes me as particularly problematic. In short, this video narrated by a woman with Down syndrome is shot almost entirely using a famous, white, non-disabled woman to demonstrate all the things folks with Down Syndrome do. The reveal at the end is that the reflection in the mirror is that of a woman with Down Syndrome - and the catch is that we should "see" people first. While this plays on notions of personhood and disabled status (there are many pieces on the politics person-first language that are well worth the read), the ultimate take away is that we should not see Down syndrome. Yet, historic and contemporary resistance to the physical characteristics associated with Down syndrome are important considerations that this campaign completely ignores. 

There are many reasons this is problematic, and disability rights advocates quickly responded to voice their concerns (a specific thank you to @erabrand for our conversation and shared insights here). However, my specific discomfort with this campaign is the ways in which it ignores historical context around the physical features associated with Down syndrome and subsequent attempts to correct and erase these. 

In his paper "Observations on an Ethnic Classification of Idiots" John Langdon Down (sometimes uncritically embraced as the "father" of Down syndrome) situated Down Syndrome in relation to the physical characteristics of various "ethnic standards" suggesting the presence of Down syndrome was a kind of "retrogression" linked to non-European races. Of note are how these foundational ideas still persist in language around Down syndrome and practices aimed at erasing and/or diminishing these physical features. For example, both tongue reduction and facial reconstruction have been touted as means to diminish the physical features of Down syndrome. 

Folks with Down syndrome have been (and continue to be) subject to invasive and abusive interventions aimed at minimizing Down syndrome and making them appear less disabled to the outside world. Given this, it is especially important that any awareness campaign does not erase the physical features associated with Down syndrome and instead promotes inclusion that is based on "seeing" and embracing our peers as they are.