This post is one in a series addressing the question of whether we should try to “cure” Down syndrome. Margaret (Gary) Bender reflects upon Flowers for Algernon and her daughter Alex, who has Down syndrome.
I have a vivid memory as a fourteen-year old sitting on my parent’s sunny front staircase reading Flowers for Algernon. This book by Daniel Keyes was first published in the mid-60s and later made into the Academy Award winning movie “Charley.” It is the story of a man with developmental disabilities who works as a janitor and who is selected to undergo surgery to increase his IQ. Per the story, this phenomenon had only been successful in a lab mouse named Algernon.
Charlie’s IQ does increase over 120 points and as he rediscovers himself, his relationships, and his family he becomes disillusioned. His relationships deteriorate and he begins to drink too much. This is not a happy time for Charlie. His IQ begins to decrease dramatically and Algernon the lab mouse dies. Charlie sees the same future for himself, and as a result he institutionalizes himself. He realizes the happy janitor who was able to live independently was gone forever. I remember crying and crying and wondering why Charlie had to change in the first place.
I have not read this book in over forty years but I still recall being thankful this was science fiction. This book posed the first serious ethical dilemma I had come across in my fourteen years of life. Does anyone have the right to change who people are intrinsically, to change a person’s identity and identification? To think that a person’s intelligence defines who they are and how they contribute to their community?
Flash forward to October 2013. It is parent’s weekend at my daughter’s college and I am sitting at a cook-out for students enrolled at the TAP Program at the University of Cincinnati. I am surrounded by smiling students, proud parents and caring professionals. The students are joking, happy and very alive. One of these students is my daughter Alex, who was born twenty years ago with Down syndrome.I think back to Charlie and to the recent announcement that researchers had discovered a “cure” for Down syndrome using lab rats. I wondered again, does anyone have the right to change who people are intrinsically, to change a person’s identity and identification? What happens when science fiction becomes science fact?
But that is really not for me to decide, is it? I cannot assume for Alex nor will I ever try. So I decided to ask Alex, just like I do with any decision that impacts her future.
“Alex if there was a magic pill to take away your Down syndrome would you?” The look of incredulity in her eyes stated her answer before she even said the words:
“Mom, you made me this way and I love you for making me. I love who I am.”
And that was the end of the conversation. Alex changed the subject and told me I was being silly when I asked her again.
Once again I learned a lesson from Alex. We should all accept life on life’s terms and work our hardest to be the best people we can. We can all learn from Alex and the hundreds of thousands of people with Down syndrome who live in our communities, our states, our countries and our world.
(I should, however, include one caveat. With the exception of coarctation of the aorta repair when Alex was fifteen months she has always had good health. To the families who have struggled with life threatening medical problems I completely support any medical interventions that improve our children’s health. I am also invested in all research supporting advances in treating early onset Alzheimer’s in people with Down syndrome.)
Margaret (Gary) Bender is the mother of three children. Her middle daughter Alex has Down syndrome. Her passion is to create a better life for Alex and all her peers. She is the author of From Grief to Celebration: How One Family Learned to Embrace the Gift of Down Syndrome. She blogs at The Ordinary Life of an Extraordinary Girl. She is also a student at the Graduate School of Social Work at the University of Denver and plans to work with adults with developmental disabilities and mental health challenges when she graduates.