Have Life-Changing Abilities
By Stephen Robertson,
Curekids Professor of Paediatric Genetics, University of Otago, New Zealand
Rachel and Sam Callander were told their daughter Evie had a rare chromosomal condition that would prevent her from walking, talking and even eating solid food. But they learned there was so much more to Evie than her medical diagnosis.
Instead of focusing on all the things she couldn’t do, they used the language of “Super Powers” that celebrated who she was and all the things she could do. They highlighted Evie’s magical ability to connect with people and share her joy in life.
In her two and a half years on earth, Evie taught Rachel and Sam, and many others who knew her, to love and communicate in ways they would never have known was possible. Inspired by their time with Evie, Rachel and Sam decided to create a book that celebrated the life-changing powers of other Super Power Babies. This beautiful book inspires us to change the way we talk about these children. All children are born awesome—this book demonstrates it.
I first met Evie Callander on the 24th of April 2008. She was only 4 weeks into what was to prove to be a short but remarkable life. I, as a clinical geneticist, was tasked with talking to her parents about her chromosomal testing result which revealed a significant imbalance in her genome. I know of no geneticist who finds it easy to find the right words to convey to a family at such a vulnerable time just exactly what such a result might portend for the future. The right words and the thinking that underpins them is what the Super Power Baby Project is all about.
Our ability to analyze the human genome has scaled to new heights and higher resolution in recent years. Geneticists can now scour the genome in search of a limitless number of variants that might explain a syndrome, a malformation or a disability. Knitting together correlations of genomic variants and health outcomes is the stuff that a clinical geneticist is trained to do. Although powerful, it remains an evolving and inexact science. So much still remains uncertain and the reassurance that so many families naturally seek at such a time of uncertainty is often impossible to offer.
What we can all offer though is a reminder that all infants carry with them into this life individualities and uniqueness. Amongst the uncertainties about health, development and longevity, the strengths of such children can often be discounted or ignored. No genetic test can predict anyone’s personality, talents and temperament. The discovery of those dimensions to each and every human life remains the special joy that every parent looks to with anticipation and wonder.
In this wonderful book, Rachel and Sam Callander remind us of the need to re-balance our language and our thinking around children with genetic syndromes. So much can be framed around the physical and developmental challenges they face while their personalities, strengths and gifts remain the private and often exclusive observations of their families and close friends. This is perhaps not a new revelation to most people. They are after all loved and treasured members of families in their own right. What is perhaps new to some is the idea that these children also represent exceptional examples of humanity. They have talents and gifts in equal if not greater measure than those who do not have to confront physical or cognitive disability personally.
This powerful narrative and photo-essay shows that these children are often agents of transformational change for their families and friends. It is as though their genetic conditions strip some artifice from those of us charged with caring for them and many of those they meet. Somehow these children can pierce the bubble we insulate ourselves in, so that the words mentioned by so many in these pages—patience, tolerance, joy, and acceptance—take a stronger hold in the hearts of those they touch.
The Super Power Baby Project is a life affirming work. It does not shy from the notion that genetic syndromes bring with them their share of challenge, grief and difficulty. The strong message is that there is much that lies beyond that. These pages demonstrate that these children have much to teach us about themselves and ourselves that is to be celebrated as truly exceptional. This book celebrates that simple reality.
Rachel Callander is a leading New Zealand photographer. After losing her daughter Evie who had a rare chromosome condition, Rachel turned her talent to capturing the beauty and abilities of other children with ‘Super Powers’- a term coined by Rachel to flip the deficit mentality often reached for when describing disability. Rachel traveled the length and breadth of New Zealand meeting ordinary families being made extraordinary through the journeys their children are taking them on. As a result of her travels, Rachel’s insights and images offer a fresh understanding and language regarding disability.
The excerpted portion presented here is the forward of this magical book.
Super Power Baby Project features striking photographic portraits of 72 New Zealand children with genetic conditions, taken by award-winning photographer Rachel Callander. The personality of each child shines through, with text that explains the unique qualities and life-changing powers each one brings.