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 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'.
Please or to access all these features
Please
or
to access all these features
Guest posts
Guest post: "I wanted people to see my daughter's 'Super Powers', not her disability"
18 replies
MumsnetGuestPosts · 23/11/2016 09:49
OP posts:
Pennylee123 ·
26/11/2016 14:30
This reply has been deleted
Message deleted by MNHQ. Here's a link to our Talk Guidelines.
Pennylee123 ·
27/11/2016 14:30
This reply has been deleted
Message deleted by MNHQ. Here's a link to our Talk Guidelines.
Please create an account
To comment on this thread you need to create a Mumsnet account.