Kindness is Everything

The theme for this year’s Moebius Syndrome Awareness Day on Tuesday, January 24th is….

Kindness is Everything

So, how can you be kind to me, and others with Moebius Syndrome?

All people with Moebius have facial paralysis. Some of us have had smile surgery, so we are able to smile. Some of us have not, so if you smile at someone, and they don’t smile back, don’t make assumptions. Maybe they legit are not friendly. BUT, maybe they have facial paralysis, and are not able to smile back.

Some, but not all, people with Moebius have limb differences. I do not have fingers on my right hand, and my feet also look different.

Please don’t stare at me. It’s perfectly fine to *look* at me, just don’t *stare* at me. Don’t feel bad if you catch yourself doing a double take when you see my hand. I get it, it looks different. It’s completely normal to look. Heck, I definitely do double takes when I see something different too. It’s those stares that last what seems like forever that I start feeling pretty darn uncomfortable.

Please don’t shush your children when they notice my hand or have questions. I understand you think you’re being kind when you do that, but it’s sending the wrong message. You are teaching your child to fear and turn away from people who are different. Instead, encourage them to come say hi to me. Engage with me. Normalize being different. Lean in. Don’t turn away. Connect. Learn.

It’s ok to ask me why my hand looks different or about my facial paralysis. However, please ask from a mindset of curiosity and not pity. I very much prefer the energy of “hey I noticed your hand looks different, I’m curious to learn more”, than “oh man what happened to your hand, that must be so hard, I feel so bad for you”.

Please, PLEASE don’t feel bad for me or pity me. Don’t talk down to me, or make assumptions about my capabilities. Having one hand is all I’ve ever known, and I’ve adapted quite well. I can do most things, and I ask for help when I need it.

Kindness IS everything. Be kind to us. Talk to us. Educate yourself. Learn more about us/our life experiences.