On Tuesday I dropped into Twitter to see what people were seeing about Primary Tuesday, and got distracted immediately by a discussion that noted disability writer and advocate David M. Perry was involved in. I jumped right in uninvited, because apparently that’s the kind of Twitter user I’ve become. I felt quite strongly about the topic once I investigated, though, which was this year’s Down Syndrome Awareness Day (March 21) video from Italian Down Syndrome advocacy group CoorDown.
Content Note: Ableism, Assumptions, Erasure, Media Depictions of Disability
Image Description: Cartoon representations of DNA strands, in light blue. In two strands, several chromosomes are replaced by the words “Down Syndrome”.
The video in question is entitled “How Do You See Me?”, starring AnnaRose Rubright, a 19-year-old woman with Down Syndrome, and actress Olivia Wilde:
I understand what CoorDown was trying to do with “How Do You See Me?” They were using the Olivia Wilde character, “normal”-looking and someone that anyone would expect to make those statements to get people interested, and then there’s the “gotcha”: the narrator isn’t the Olivia Wilde character, like you assumed, but a person with Down Syndrome. How does that change things for you, CoorDown, asks? How do you see AnnaRose? What assumptions do you have about her do you need to challenge?
CoorDown’s intent with “How Do You See Me?” wasn’t bad. But the messaging is bad. The optics are bad. David Perry was trying to tell a CoorDown representative this yesterday, but the person wasn’t very receptive.
Here are some things about the video that were problematic for me
Disabled People Shouldn’t Be Required to Identify as Non-Disabled
There’s an implication in “How Do You See Me?” that in order for people with Down Syndrome (and, by extension, disabled people in general) to “see” or perceive themselves as people with valued social roles, and a well-rounded personality, and dreams, and a life in the community that brings them fulfilment, they also have to self-perceive as a white, non-disabled person. Not only should it not be necessary in this day and age for disabled people to self-perceive as non-disabled in order to live like a non-person person (period…forget about skin colour), it explains why this video is drawing criticism from disability advocates everywhere.
In “How Do You See Me?” AnnaRose Looks and Sounds Like She’s Waiting to Start Her Own Life
This isn’t the case, by the way. AnnaRose goes to college, works at a physiotherapy clinic, and is a Special Olympics athlete.
Yet, in “How Do You See Me?”, we hear her voice talking about “seeing” herself being and doing a lot of things while we watch Olivia Wilde do them.
“The video would have been far more poignant and entirely less infuriating if it had shown the narrator engaging in the activities she described rather than Olivia Wilde.”
Mixed Messages in “How Do You See Me?”
The video posits, presumably unintentionally that it’s better to have Olivia Wilde’s face than it is to have AnnaRose’s face, with the distinguishing features found in most people with Down Syndrome. For a video created for Down’s Syndrome Awareness Day, by a Down Syndrome advocacy group, that sends a rather mixed message to me. Piggybacking a bit on my last point, it would have been nice to see more of AnnaRose in the video, not so much of “Olivia Wilde plays a girl with Down Syndrome” and “Olivia Wilde has Down Syndrome…”, which seem to be the ways the preview for the video appears on Twitter when it’s shared – without AnnaRose’s name.
Again, it’s not that I think that CoorDown intended to film something that was problematic. But there’s an implication “How Do You See Me?” that disabled people should see themselves as non-disabled simply because of an ableist assumption that non-disabled is better. And I can’t get behind that, especially from a video that’s supposed to raise awareness about Down Syndrome.