October 16, 2013

Flowers for Algernon

Recently, Amy Julia Becker asked me to provide some comments addressing the question "should we try to cure Down syndrome?"  Amy Julia writes and speaks about family, faith, disability, and culture at Thin Places, Faith, Family and Disability. She is a very talented writer and if you have not read A Good and Perfect Gift, Faith, Expectations, and a Little Girl Named Penny, I highly recommend it.

I was extremely complimented to have been asked and took the assignment to heart. Following are the first few paragraphs of my response from Amy Julia's post today:


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? Read more here.


Although this is not an option for people with Down syndrome today, it certainly may be an option in the next ten years. This will become the MOST serious ethical dilemma I may face in my life time.

If you have not liked our page, it is a good way to stay on top of the ups and downs of college for a person with a development/intellectual disability. I have no idea what is going to happen....but I will share the good and the bad. Please click on "The Ordinary Life of an Extraordinary Girl" now.

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