My – rejected – letter to the New York Times – with edits

As a parent of a four-year-old child with Down syndrome I too wonder what is the consequence of this kind of therapy (A Father’s Search for A Drug for Down Syndrome, Dan Hurley, July 31, 2011).

I am reminded of the novel Flowers for Algeron – where the parallel stories of a lab mouse and a man who is mentally retarded have both undergone experimental surgery to increase their mental facilities.  Initial success is followed by the devastating return of their initial intellectual state. Dr Costa’s knows what he observes these drugs do, but does he know what it means for the future well being of his subjects?

I wish our son was not plagued by health issues related to Down syndrome and I do fear for our child’s future and his functioning as an independent person. But, I fear more the unknown consequences of this kind of medical intervention.

In the past, people with Down syndrome used to be locked away from society in institutions because we believed they could not function as part of society. Now, with prenatal testing we can actually prevent these people from being born.

My husband and I often hear from people how happy people with Down syndrome are. We think don’t think our son is  “happy” but “evolved”.  He lives in the moment. He is ego-less. He is amazing. Will he solve algebra problems in the future? Maybe. Already at age four-something he can operate the DVD player that my mother who is above average in intelligence is incapable of learning.

The world isn’t just for people who solve algebra problems. It is also for people who represent our better selves. We for one do not want to cure our son of being who is. The world is lucky to have him as he is.

To Mr. Hurley, I would ask why you didn’t believe it necessary to interview a an adult person with Down syndrome on their thoughts regarding Dr. Costa’s drug therapies.

This entry was posted in Advocacy, By Notatypicalmom, Down syndrome, education, Health, Inclusion, Medical, Parenting, Special Needs by Kari Wagner-Peck. Bookmark the permalink.

About Kari Wagner-Peck

Kari Wagner-Peck lives with her husband and son in Maine. She is a writer & storyteller who home schools with her son. She has a M.S.W. and has been at various times a practicing social worker, documentary videographer, film festival director and retail clerk. She is the author of Not Always Happy: An Unusual Parenting Journey, May, 2017, Central Recovery Press. She has been published at The New York Times Well Family blog, The Huffington Post, The The Good Men Project, The Sydney Morning Herald Daily Life blog, BLOOM and Love That Max among others. Author page: kariwagnerpeck.com Twitter @KariWagnerPeck and Facebook: www.facebook.com/NotAlwaysHappyLive/ Email: kariwagnerpeck@gmail.com

2 thoughts on “My – rejected – letter to the New York Times – with edits

  1. I have a daughter with DS aged 5 and I hold the opposite view of you. I would pay anything to give my child a chance to be as near ‘normal’ to other kids in her peer group.

    • First, I am so glad you commented. Oh, I think if I knew the drug would just add IQ points and there was a guarantee it wouldn’t cause cancer down the road or some other awful side effect I might be inclined. But, I know I don’t want our son to be “normal” or whatever that is. We can disagree, right?

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