“I exist as I am, that is enough, If no other in the world be aware, I sit content, And if each and all be aware, I sit content.” (Walt Whitman)
Would I cure my daughter? I have been asked that question often over the years. I believe that most people assume I would cure her, given the chance. What mother would not want to make her child’s life easier by taking away a disability that so profoundly affects her life socially, academically and emotionally. If I am being totally honest, up until recently, I would have said that those assumptions were correct; that yes, I would cure her.
If you pose that question to my daughter, she will tell you that she has no desire to be cured. She loves and accepts herself exactly as she is and sees her autism as something that sets her apart, makes her different and unique. Without it she feels she would be just another “ordinary kid.” So, why would I feel any differently?
When I thought about “curing” my daughter, I looked at it through one single lens. It was the lens of a parent who saw the many obstacles and hurdles that her child had to struggle to overcome. It was the lens of a parent whose heart ached when she watched her daughter struggle to fit in. It was the lens of a parent who worried for her child’s future and all that she might not have because of her autism. It was, in some ways, a “rose-colored” lens that I looked through. I didn’t think that curing Yael’s autism would ensure a care-free, successful and fulfilling life, but it sure would raise the odds in her favor.
More recently, I began to see Yael’s autism and the question of a cure through a different lens. This lens allowed me see more of the nuance hidden within that question. When I looked through this new lens, I saw my daughter’s reflection. I wondered, what else would I be taking away if I cured her autism? Would I be changing her quirky sense of humor? What about her profound sense of compassion, kindness, and empathy for others? Would I change the way she sees herself and the world around her? When I looked through this lens at the bigger picture, I wondered, what parts of my daughter are intimately connected to her autism? And would I risk losing any part of her if it meant I could cure her? The answer is no. I would not risk losing any piece of the Yael that I love, because to take away even one piece of that puzzle, would change the picture forever and would leave a hole that no other piece could fill.
So, when I look through my lens and see all that autism may cost her, I must see what it has given her. When I see what she may never have, I must see all the blessings that are. When I see the struggles past and yet to be, I must see her courage, tenacity, perseverance and the success she has achieved. When I see my own fears as a parent, I must see her hopes as a child. Through my lens I must see her, all of her, as “B’Tzelem Elohim” created in the image of God.
I still want to make her life easier. I want to lift her burdens and smooth away the rough roads. But I have learned that I can’t do that by changing her. I must instead work to change the world in which she lives. I must change minds and attitudes. I won’t cure her, but I will work to cure the world of ignorance, judgement and exclusion. I will not cure her, but I can ease her symptoms, give her the tools and therapies that she needs to live with her autism, yet not be defined by it.
For the past three years we have walked in the Georgia Walk for Autism. Yael will tell you that she still walks for a cure. She does not want it for herself, but for those whose lives on the spectrum are far more challenging than ours. Neither of us assumes that those families would see a cure as we do. Each of us sees this journey through our own unique lens and the answer to that question varies with the view.
As for our Yael, perhaps our feelings are best summed up with this old adage, “if it ain’t broke, don’t fix it.”
“Once we accept our limits, we go beyond them.” (Albert Einstein)