advocacy – Natalie Abbott

When Snapchat Filters Mock Your Medical Condition

I will be the first to admit it: I don’t really “do” Snapchat. I downloaded it but then just never checked it enough to actually see things, and the inability to browse users without knowing their exact username is maddening. I’ve played around with it a bit and don’t hate it… I just don’t have time to constantly keep up with it.

This week Snapchat came out with a bunch of new morphing filters… One of which gives the impression of one-sided facial paralysis. <<headdesk moment>> I mean besides the more obvious question to me of why it’s entertaining to send weird morphed photos of yourself to friends, it also comes back to the fact that it’s supposed to be funny. And that differences in appearance aren’t inherently funny or things to be gawked at.

I’ve probably written this before here, but appearance differences are kind of a strange medical condition to have. You skirt the line between the disability community and “passing” – but neither are quite right. I’m almost thankful sometimes that my orthopedic and neurological and autoimmune (phew, that’s a mouthful!) issues made it easier for me to join the disability community at a crucial age.

Appearance djfferences without other impairments aren’t quite embraced as disabilities by some…and since they aren’t thought of as a protected class, it’s not seen as in poor taste do things like presenting facial paralysis as a funny and weird thing you can try on. (Now by no means am I against humor: check out some of David Roche’s material about facial differences).

I don’t think Snapchat will remove the filter, so all I can hope for is that people start to think a little bit before using it. Some great organizations are working towards that goal, and I’m looking forward to what they are able to achieve.

Awareness is not Garish

This week is Facial Paralysis Awareness Week. I did what one is now “supposed to” do in the era of social media: shared the posts, changed my profile photo to the designated Twibbon, so on and so forth.

Other organizations and people are doing things too, some of which make me vaguely uncomfortable as a person with facial pareisis (if we’re getting very technical). People are cutting half their hair, painting half their face in a strange showing of solidarity.

But they are missing the point.

Everyday life with facial paralysis isn’t over-dramatic or sometimes even obvious. People (hopefully) aren’t recoiling from the obvious. It’s the little questioning doubts, the assumptions people make, the side glances. It’s not extraordinary, but it is subtle and persistent.

So what could a person without facial paralysis do to show solidarity? Listen to us, embrace our similarities and differences. Work on efforts to improve understanding of differences.

And maybe think twice about doing over dramatic things that don’t reflect what life is truly like for some people with facial paralysis.

A Preview of Rare Disease Day 2014

My dog’s getting into the spirit of the day! Actually, he just really likes to hold things so I capitalized on that in this instance. Tomorrow I’m going to Sacramento, CA with many other rare disease advocates from across the state, along with the National Organization for Rare Disorders and the Global Genes Project. We’re not going on Friday the 28th (which is Rare Disease Day) because the legislature is not in session then… so we’re being prompt! I’m really excited to see what we can do collaboratively to advocate the cause of rare disease funding, care and research.