I find great meaning and value in my life and I have no wish to be cured of being myself. If you would help me, don’t try to change me to fit your world. Don’t try to confine me to some tiny part of the world that you can change to fit me. Grant me the dignity of meeting me on my own terms. Recognize that we are equally alien to each other, that my ways of being are not merely damaged versions of yours. Question your assumption. Define your terms. Work with me to build more bridges between us.
– Temple Grandon, Author with Autism
After first reading Temple Grandon’s thought-provoking words I found myself imagining, of all things, a magic wand. This particular magic wand would hold the power to completely erase the Rubinstein-Taybi syndrome that my son, Max, was born with. This magic wand could, no strings attached, make him “normal”.
In pondering this mystical prospect, I realized that I wouldn’t hesitate to spare Max all the medical issues – the illnesses, tests, procedures and surgeries – he has endured since he was born almost two years ago. I did, however, find it harder to come to terms with eliminating many of the other manifestations of RTS in Max. I am referring to the aspects of Rubinstein-Taybi syndrome that, were they erased, would theoretically result in Max being a very different person. Of course, I’m sure the magically transformed “normal” child would be thoroughly adorable and lovable and we would cherish him… but he would not be Max – our dear, sweet, funny, bubble-of-bliss, bring-out-the-best-in-everyone Max.
After contemplating the increasingly unnatural prospect of Max without RTS, I started to consider the consequences, should this magic wand get around. I imagined it being waved over more and more “challenged” people until everyone was “normal” and I cringed as I envisioned a world aching even more deeply for the joy, compassion, innocence and love already in too short supply. I imagined respected scientists completely baffled as to why the average size of the human heart had mysteriously diminished… significantly.
And then I reread Temple Grandon’s words and realized the more appropriate question is not whether or not I would wave the magic wand, but whether or not Max would. It is my passionate hope that our family, friends and neighbours (across the street and around the world) will help Max to grow up realizing that he is more magical than any of us “normal” mortals could ever aspire to be. I want Max to know… actually, I want everyone to know and genuinely embrace that Max is perfect, through and through, with his own rare and enviable qualities aplenty.
No more magic needed here – Max’s inexhaustible charms amount to an abundance for all!
Janet Estes – November ‘98