Emily Rapp, author of Poster Child: A Memoir about her own experience of disability and being a poster child for March of Dimes, writes to those who would use her experience and her son’s life and death to promote the “right-to-life” cause. From Salon:
I’ve been writing about my son Ronan, who died of Tay-Sachs disease in February 2013, since the day of his diagnosis. This has included a discussion of parenting strategies that must accommodate a child’s inevitable death. These have recently been determined by one writer speaking on behalf of the Right to Life organization as “inspirational.” Although the writer qualifies the use of this sentimentally descriptive word, he goes on to explain that although he has no special-needs children of his own, he has much to say about how other people with terminally ill children should parent. I have an equally sentimental word for that which I will mention here without qualification: gross.
When Ronan died he was nearly 3 and he weighed 11 pounds. He was so emaciated that we had to be careful when we moved him that we did not dislocate his shoulders or hips. His eyes were fixed, every bone on his face visible. He died in the middle of the darkest, coldest night of mid-winter. The fact that the sun rose and birds started twittering hours later seemed to me a stunning and singular cruelty.
I don’t write about my son’s death to contribute or even respond in kind to the sensationalist bent of some Right to Life images or publications. I do so to be clear, and so that Ronan’s memory does not have to bear attitudes with which I do not agree. Also, he did not deserve to live or die in the way he did, and had I known his fate through the appropriate prenatal test while I was carrying him, I would have terminated my pregnancy. Would this have been another loss to mourn? Yes. Very much so. That decision never would have been made without careful and agonizing thoughtfulness. No parent can make that decision for any other parent.
Emily Susan Rapp was born on July 12, 1974, in Grand Island, Nebraska. Rapp was raised in Laramie, Wyoming; Kearney, Nebraska; and Denver, Colorado; by her father, a Lutheran pastor, and her mother, a school nurse. She has an older brother, Andrew, who is an attorney in Seattle. At age four, her left leg was amputated above the knee as the result of a congenital birth defect called proximal femoral focal deficiency. She has worn a prosthetic leg ever since. At age six, Rapp was named as the poster child for the March of Dimes in Wyoming.
In 2013, her book The Still Point of the Turning World was published by Penguin Press. The book shares the author’s life and experiences following her son’s diagnosis at nine months old with Tay-Sachs disease.