How do you see me?

March 17, 2016 10:01 AM

How do you see me? (SLYT) Let's change the way we look at people with Down syndrome. AnnaRose is a nineteen year old from NJ. She's a full time college student who works part-time at a physical therapy center and enjoys basketball and swimming through the Special Olympics NJ. AnnaRose, as many people with Down syndrome, only wants to realize her potential and live a meaningful, beautiful life.
posted by Four-Eyed Girl (6 comments total)

This is really nicely done, thanks for posting it.
posted by LobsterMitten at 10:35 AM on March 17, 2016

Thanks for this. The video raises a very interesting and important question that gets asked a lot when working with people with Down Syndrome, which is: to what degree are people with Down Syndrome aware they have Down Syndrome? How do they see themselves? And as you might imagine, it really varies, as Down Syndrome has a huge variety in presentation; some people are affected much more dramatically than others, not unlike ASD (there was case of Mosaic Down Syndrome at the hospital I work at in which a woman did not even know she was mosaic for Down Syndrome until she had a genetic test at 60 years old).

The issue has become more pressing as the life expectancy for people with Down Syndrome has increased by a factor of three or four in the past 30 years. In the 80s, most people with Down Syndrome didn't make it to their mid twenties. Now it's not unusual for me to see a Down Syndrome patient in their 70s or even 80s, due to the advent of cardiology intervention.

So what you end up seeing is children with Down Syndrome, who are very good at mirroring social cues and who have a lot of support programs in primary school, having relatively normal childhoods. But it gets tougher and tougher to keep up with their cohorts, intellectually and socially, as they age. So people with Down Syndrome who are less aware of their difference can really be emotionally crushed when they reach young adulthood and see their peers going to college, having children, etc., and have a very difficult time trying to figure out why they aren't able to achieve the same benchmarks. It can be really heartbreaking. There are more and more programs popping up to support this community, which is a great thing, though this population also falls increasingly under the radar as the incidence drops due to more and more mothers electing not to carry Trisomy 21 kids to term (over ~90% at this point, last time I saw figures).

In any case, they are one of my favorite populations to work with (they, unlike a lot of people, love their hearing aids). Thanks for the post!
posted by Lutoslawski at 10:44 AM on March 17, 2016 [18 favorites]

Well, I just have to get this out there. This video really bothers me.

I applaud the effort to raise awareness of the condition and Olivia Wilde for her participation. But I would much rather have seen AnnaRose herself move through her day than have seen her portrayed by a neurotypical actress.

I suppose that the video wants the viewer to see through AnnaRose's eyes and to question how the rest of the world sees her, and subsequently questioning one's own preconceptions. That's a powerful message. I disagree that AnnaRose needs to be replaced with Olivia Wilde for 90% of the video's runtime. The subtext that she couldn't carry it off herself very nearly spoils the whole damn thing for me.
posted by vverse23 at 11:25 AM on March 17, 2016 [7 favorites]

Pretty much all the disability rights and neurodiversity advocates I follow have spoken up about how intensely offensive they find this ad. It erases disability in a way that few people would find acceptable if it were done about another group of people.

Some of their responses:
David Perry has been tweeting about it, starting with this tweet at 2:15 PM - 15 Mar 2016.
Rick Godden responds to "How do you see me?".
Kim Sauder: When I Picture Myself Being Included, I Don’t See Myself Without My Disabilities.
Sarah Levis: "How Do You See Me?", CoorDown's video for Down Syndrome Awareness Day, isn't intentionally problematic, but the messaging is very off.
And a roundup article: This Video Starring Olivia Wilde as a Person With Down Syndrome Is Being Called Ableist.
posted by Lexica at 3:11 PM on March 17, 2016 [3 favorites]

Do any of these critics have Down Syndrome? I'm not sure how relevant it is for Kim Sauder (for instance), who has autism and cerebral palsy, to say she doesn't picture herself as a person without disabilities, when the topic is how a person with Down Syndrome sees herself.

I don't know how well the video speaks for AnnaRose, but I don't know that I trust that any of these people are representing her any better.
posted by straight at 3:32 PM on March 17, 2016 [1 favorite]

I'm going to be honest, I don't really know or immediately recognise Olivia Wilde (I've heard her name) so when this video started I was a little shocked, as my (very basic) understanding of Down Syndrome is that is a genetic disorder that, amongst other things, and as delicately as possible, has a very distinct physiognomic effect.

So when I saw this woman who turned out to be Olivia Wilde I was like "huh, that's interesting, obviously the already very little I know about Down Syndrome is completely incorrect" and I began paying closer attention in order to be informed about how to adjust and correct my preconceptions (which is the intent of the ad).

But then as the video went on I became increasingly suspicious, firstly because, well, no way is this woman 19, and secondly because, wait, how come we're seeing her working as a chef and doing a lot of running when AnnaRose actually works in physical therapy and enjoys basketball and swimming?

I guess I'm a stupid idiot person for not paying closer attention from the outset, but this ad really rubbed me the wrong way and left me feeling vaguely angry. I already knew that people with Down Syndrome had inner and outer lives.
posted by turbid dahlia at 6:24 PM on March 17, 2016 [4 favorites]