I want to live in a world where my existence is just accepted. I don't want to have to undergo drastic physical or neurological changes to be perceived as a normal part the world. When I imagine myself in an inclusive and accepting world, I see myself as me unchanged, still disabled but simply in a world where that does not matter.
And yet this is not what people think I should see. This is evidenced by this video, produced for World Down Syndrome Day (March 21).
In the video, a narrator talks about her life aspirations and goals while the actor Olivia Wilde lives them out. The implication is that the narrator cannot do those things for some reason. That reason is revealed at the end to be because she has Down Syndrome (DS). The narrator concludes with, "This is how I see myself, how do you see me?"
The intent of the video is to convey that people with DS should be able to do all of the things talked about in the video. Unfortunately the way that message is delivered is deeply misguided.
It frames the narrator as wanting not only to be accepted and to have opportunities but seeing herself achieving them without Down Syndrome. It looks a lot less like the intended "I want to have what you have" and more like "I need to be fundamentally different to achieve acceptance and opportunity".
It suggests (though the producers object) that people with DS should want to be Olivia Wilde rather than themselves. From a larger standpoint it says that disabled people generally should see themselves as not being disabled.
It is unfortunate that the producers of this video felt that it would be more effective to have a nondisabled celebrity play out the life and dreams of someone with DS. Besides completely missing the mark on their stated intentions, the people who produced this video lost the opportunity to model how acceptance and inclusion can look.
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.
The use of Olivia Wilde completely undercuts not only the need for disabled people to have opportunities and acceptance because no one questions a beautiful celebrity being able to do those things. People do however regularly question not only whether disabled people can do something but whether they should be allowed to.
Sure the nondisabled viewer may finish watching that video and think "of course people with DS should be able to do all those things", but the sentiment isn't likely to lead to action because without a clear guide what passes for acceptance and opportunity will be defined by nondisabled people. I promise you it will not look like the images of Olivia Wilde with someone with DS swapped in.
It's interesting that this video came out around the same time as the short film Guest Room starring Lauren Potter did.
This film clearly illustrates why relying on giving nondisabled viewers "the feels" is not going to be effective because it shows so clearly how the reality of people with DS makes nondisabled people uncomfortable. Not just people like the woman in the hair salon who utters "you're so good with her" but the people closest to the protagonist and her boyfriend. His parents are really uncomfortable with the idea of the two of them becoming parents. Particularly if the baby also ends up having DS (for more on why Guest Room is amazing click here).
Charities and nondisabled advocates have been exploiting people's immediate gut reactions for decades. It is really easy to get people to think "of course the narrator should be accepted". It is a far harder thing to actually get them to actual acceptance.
This is why it is so important to actively confront the real discomfort that society has with the reality of the full participation of disabled people in all aspects of life, as "Guest Room" does brilliantly. It is also equally important to model and show disabled people participating and being accepted.
When we dream about a better more inclusive reality, we shouldn't show the status quo and suggest that people who don't usually fit in should have that too. We should show a world where they actually do.
Or is that really too hard for you to imagine?
Originally published here