Changing the ignorant narrative

As a rare disease family it occurred to me quickly that the rest of the world is ignorant. Let me clarify that. You aren’t necessarily a malicious person if you are ignorant. It just means that you may not be aware of how harmful some of your statements can be. Our family has experienced a lot of ignorant comments after having Owen. Some of them are innocent and some of them were meant to be rude. I was curious if other BWS families encountered similar things, so I asked them. Their responses are concerning. My hope is that through sharing other families experiences, people outside of the rare disease community can be aware of how their questions and comments come across.

What are some comments you have gotten regarding your child?

“He is so big and should be wearing a mask. Shouldn’t he be walking right now?”
”We had a photographer try and poke her tongue back inside her mouth when my daughter was a baby”
”Be glad your child isn’t handicapped!”
”I don’t see how she is different so I can’t agree with it”
”I am an adult with BWS and I am told I talk weird”
”Where do you get your height from? You are so tall! You have the longest legs”
”What is wrong with his face? Will he have to live with those marks on his face forever?”
”Wow! Look at his big tongue!”
”Why is he sticking his tongue out and not keeping it in his mouth?”
”Tell your son to stop sticking their tongue out at me. Doesn’t he know that is rude!”
”Why is your kids tongue sticking out?’
”Why is his mouth always open, why is he drooling so much?”
”She is making such a silly face!”
”Your child is way to big you must be over feeding him!”
”Why does he act/talk like that (thinking he’s much older than he is due to his size)”
”His tongue looks weird”
”Put that tongue away!”
”Does your child have down syndrome ?”
“Hopefully your child can work and live on their own”

What physical feature have people commented on most?

Stork Bite Mark (pink birthmark)
Leg differenc

How have you handled the negative comments?

“Just try and ignore it”
”Take every opportunity to educate them on BWS”
”Pretend not to listen or hear the negative comments”
”I used to get angry and defensive but not anymore”
”I continue to show how much we love our son and if necessary point out their ignorance”

What advice do you have for brand new BWS families?

“Stay strong. We were given BWS babies because we will give them the best life.”
”If you hear someone talking about your child join in the conversation and educate them.”
”Don’t care what other people think, no one knows your baby the way you do.”
”The chances of you seeing that person again are really small. They just don’t understand, it can be a small moment of education and awareness. Try to take it with a grain of salt, most people aren’t commenting to be mean.”
”Be bold and face the world!”
”Some people just suck, but take a second and explain BWS. Awareness is powerful!”

As a community we can’t expect others to understand that their comments, even when coming from a good place, may be hurtful to us. Which is why awareness and education is so important. Taking time to educate someone may help them realize why a question they asked was insensitive or hurtful. If you are a rare disease family reading this, continue to educate those who don’t understand and continue to stand up for your child when comments do come from a malicious place. For those outside the rare disease community, think before you ask something. Try and put yourself in the other person’s shoes and ask yourself “Would this hurt my feelings if our places were switched?” Together we can make a difference if we just draw from different perspectives and learn from one another, being ignorant isn’t bliss.

Live Large & Stay RARE.
XOXO Theresa

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