Rachel Callander makes it her mission to raise awareness for the importance of empowering communication in healthcare. Inspired by her experience coping with a diagnosis of partial trisomy 9 and partial monosomy 6 in her daughter Evie, Rachel created the Super Power Baby Project, an internationally celebrated book featuring extraordinary portraits of brave children with chromosomal and genetic conditions.
Rachel delivered the keynote address at the Global Genes 7th Annual RARE Patient Advocacy Summit. Here is what she had to say:
On explaining her daughter’s condition to strangers:
“I didn’t get to share anything about Evie that I really loved, and I felt like I was letting her down. But with this new ‘superpower’ language, the next time someone asked me, ‘What’s wrong with your child?,’ I just said ‘Nothing is wrong with my child. Actually, she has superpowers.’”
“[Evie] could communicate just by using a single sound and the tone of her voice…There was so much going on between us without words and without language.”
“She got around by scooting on the floor on her back. She had incredible core strength. This was another one of her superpowers. She would scoot around to her heart’s content. Completely independent. Completely free.”
On creating “Evie’s Awesomeness Form” and the power of emphasizing the unique abilities of people with rare disease:
“This [traditional ability assessment] form actually broke me because I couldn’t tick a single answer. I had this sense of hopelessness and powerlessness because I thought, ‘The people on the other end reading this form would think that Evie was a child with no value that couldn’t do anything.’ I decided that I was going to make up my own form; one with much better questions.”
“I created ‘Evie’s Awesomeness Form’ with ten or so of my own questions, and I answered yes to every single one. With this form, I could see that Evie was changing and growing and developing and celebrate those things.”
“In that moment, Evie became a human being to them instead of this collection of failing body parts. And in that moment, there was an acceptance of difference, of diversity.”
Listen to a TEDx talk from Rachel here.
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