Guest post: "I wanted people to see my daughter's 'Super Powers', not her disability"
After her daughter was born with a rare chromosomal condition, Rachel Callender created Super Power Baby Project to celebrate the lives and abilities of similar children
Super Power Baby Project
Posted on: Wed 23-Nov-16 09:49:23
(18 comments )
It began with Evie Amore Callander.
A little girl, our daughter, born with a rare chromosomal condition (partial trisomy 9 and partial monosomy 6) that meant we needed to take each day as it came, readjusting our dreams as a family, our expectations and our lifestyle. We stopped thinking about the future; instead we gained an appreciation for each moment.
Our journey with Evie was hard. Harder than we would have ever thought we could have coped with. We dealt with stress and heartache on a daily basis that we were completely unprepared for, particularly the regular emergency trips to hospital where her life hung in the balance. However Evie constantly amazed us with her strength and determination to survive.
Over time we noticed that Evie responded to particular environments in a way that made us think she was experiencing them differently to other people. For example, whenever we drove under electrical pylons on a stretch of road near our home, she would cry - every single time, day or night.
Then we noticed the same reaction whenever we went through electric sliding doors. It was as if she had an electromagnetic sensitivity that was particular to her. We started lightheartedly calling this phenomenon her 'super power'.
We were constantly faced with the medical reality of Evie's condition and our 'Super Power' mentality helped balance the deficit language often reached for when describing disability. This, in turn, helped to bring out Evie's best and helped others see it, too.
We soon realised that her character and the things she was teaching us and those around her were very profound. Her fragility and her pure joy disarmed people and drew them in - she evoked a depth of love in people that they hadn't experienced before. Her strength and bravery in extremely tough medical situations; the way she expressed her happiness with her entire body; even the way she got around, scooting on her back - these things made her distinctly Evie, and we referred to them all as her 'Super Powers'. Soon, these words weren't lighthearted, but incredibly real.
'Super Powers' became a way for us to describe Evie in a positive manner when people asked us what was 'wrong' with her. We were constantly faced with the medical reality of Evie’s condition and our 'Super Power' mentality helped balance the deficit language often reached for when describing disability. This, in turn, helped to bring out Evie's best and helped others see it, too. The idea of 'Super Powers' helped people understand what Evie could do, and see her as a human being rather as a collection of failing body parts.
Inspired by our life with Evie, I decided to create a book which celebrates the lives and abilities of other children in New Zealand with chromosomal and genetic conditions. I wanted to discover their unique Super Powers. I've filled the pages of the Super Power Baby Project book with children as their parents see them. The words that accompany the gorgeous photographs reflect the conversations I had and the children I met.
While every child and family are distinctive, themes emerge in their stories: unconditional love, living in the moment, empathy and compassion. What astounded me as I travelled was how these are some of humanity's highest ideals, and these children are the teachers of those values. As one parent put it, “he will teach us more than we can ever hope to teach him.”
The words we currently use and have been given to describe 'disability' are: retarded; incompatible with life; abnormal; developmentally delayed. The things we associate with the word disability show up the deficits in our society, a culture that does not fully accept, encourage and celebrate humanity in all its guises. Too often, we place value judgements on other people before we get to know their character, before they can enrich our own experience of life, before they reveal their 'Super Powers'.
By Rachel Callender
I love this - thank you for sharing, Rachel
My dd was born with cerebral palsy and also has incredible 'super powers' which we were only able to see once the fog of grief had passed over us. She has taught us a great deal about life and what is truly important.
With best wishes to you and the gorgeous Evie!
This is a very beautiful and moving story and will make me see those Super Powers in the special children you have talked about
What gorgeous photographs in the book. A great project. I wish you and beautiful Evie all the best.
I saw your Tedx talk in Auckland Rachel. You changed the way I view 'super powered' kids forever. Thank you.
I admit I was a little bit wary when clicking on this title.
I find some of the 'super' 'amazing' 'special' language used around children with SEND a bit difficult sometimes (although never when used by a parent).
You know what? I LOVE this book and I will be letting people know about it.
I am a parent of a child with SEND (not as complex as your beautiful girl) and I am the parent of a child who became medically very complex for a long period before we lost her. I also work in the field of SEND with families whose children's conditions could be compared with Evie's.
I will be listing your lovely book as a resource.
Looks like a beautiful book. As someone diagnosed as on the autistic spectrum I wish people could accept differences and not fear them.
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Hello? I don't seem t b able t post my comment 😰
You did post. I didn't understand your post at 14:30?
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penny your comments are not appropriate on this thread.
Go and start your own one.
You have the whole of the internet to philosophize. Stop trying to hijack this thread.
Rachel, this is a beautiful story. I truly thank you for sharing..
While I cannot know the difficulties of what you and your family have faced, it's so encouraging to see that you're dealing with your trial in a way that actually helps Evie and encourages her not settle on what she can't do, but what she can do. That mindset is a winning mindset for her and for your family.
I'm oftentimes saddened by how we treat the disabled, but your story is so wonderful. Thank you!
What a wonderful and beautifully written post.
It reminds me a little of a phrase in a Kurt Vonnegut autobiography, in which Vonnegut described his father as creating a 'lazy artist' in his sister: Every scribble she made was worthy of the Sistine Chapel; Every painting she created was a genuine work of art.
My DH and I were very much thinking about our own DD (very complex disabilities) when we were talking about the phrase.
Your description of superpowers seems perfectly to describe the profound love and recognition of individual worth and ability in our children.
I will be seeking out your book, thank you.
Hi namechangeemergency, thanks for your comments. Apologies, you have obviously taken my comments the wrong way. My niece has been behaving in a similar way and so I have been looking into this. I take your comment on board and I'll take my thoughts elsewhere. Thanx for your time anyway! xxx
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