Choosing Naia: A Family's Journey. M. Zuckoff, M. Boston: Beacon Press, 2002.
Greg and Tierney Fairchild, an interracial couple with impressive careers, imagined their ideal family would include three children. However, prenatal testing during Tierney's first pregnancy revealed Down syndrome and a serious heart defect in their baby girl. Choosing Naia follows the couple in their difficult journey as they examine their options. Should they terminate the pregnancy or commit to raising a child whose physical and mental challenges were uncertain?
Making the right choice weighed heavily on the minds of the Fairchilds. They studied literature, watched videotapes, and sought counsel from professionals. Some family members pressed the case for abortion; others tried to be supportive. Conflicted, the couple did not know if they wanted this baby.
Society's intolerance played a role in all the Fairchilds had to consider. Greg knew his marriage to Tierney would present challenges to any child the couple had, but this seemed too much to bear. The racial distinctions combined with the facial features and mental retardation associated with Down syndrome would give birth to a lifetime of discrimination and stigma.
I appreciate the reason the Fairchilds shared their story: so others would know Naia was a choice and not an unexpected or unwanted surprise. It took great courage for the Fairchilds to put their vulnerabilities out to public view. Their contribution will help move society and its attitudes to a higher plain.
I have written dozens of drafts of this review and have decided finally to be truthful with you and myself about my thoughts on Choosing Naia. It is not easy. I know the author is a veteran reporter, and significant people and organizations have bestowed high honors and praise upon him. I made every attempt to avoid appearing critical or judgmental of either the author or the Fairchilds.
I must end this agony and spend no more time beating around the bush by reverting to naked honesty and let the chips fall where they may. The lives of my two children are extraordinary and are the reason I think the way I do.
After reading the last word of Choosing Naia, I laid it down and paused for a time to consider its contribution to the advancement of current day thinking. Certainly, the Fairchilds' story is a demonstration of the transition society is making in its perception of people with disabilities. Their ultimate decision to give birth to Naia contradicts mainstream thinking. More than 90% of expectant parents chose to terminate a pregnancy under similar circumstances, and the book will likely create some level of change as people consider their choices. Choice, discrimination, disability, and how they relate to one another, however, are experiences that carry tremendous emotional power that can be the impetus that activates major change in the lives of people with disabilities and their families as well as mainstream society.
The author's journalistic style makes it difficult to connect with the energy behind the turmoil of what the Fairchilds endured. In the end, I did not have a new banner of advocacy to carry. I expected one. I really wanted one.
The reason the Fairchilds had for choosing Naia was not a vision they found for a more accepting society. Their decision came only from a persistent search for a piece of information somewhere that would make a choice easier for them. Their search ended upon their learning there are families willing to adopt a child with mental retardation. It provided them with the “escape hatch” they needed to “seal the deal” (their words) and decide to give birth to Naia.
Far back in the history of our treatment of people with disabilities, society has sterilized, murdered, neglected, infected, and tortured these individuals in the name of progress. This destruction has been disguised in many different forms: the eugenics movement, state institutions as safe-havens, or test subjects for vaccines. We have never apologized and that is what worries me most. This omission hinders the growth of our values and our souls.
The words not found in Choosing Naia are symbolic of what is missing from society's soul today—an absence of a natural consideration that all people are inherently valuable. This absence is at the root of a deep pain felt by people with disabilities everywhere.
Choosing Naia captured for me why the 40-year-old movement known as self-advocacy remains so radical. People with developmental disabilities have largely been ignored and Choosing Naia is no exception. Not unlike what drove the civil rights movement, self-advocates want a sense of somebodiness—a belonging. The severity of their disabilities is not their most ominous challenge. How people view them is. Self-advocates are driven by a desire to be recognized for their aspirations and valued as contributing human beings. They do not want to be called “retarded” anymore; but we still do so, and Choosing Naia was again no exception.
Why is there an emotional and intellectual detachment between expectant parents who face making a choice and the people their children might grow to be? Something is missing from our souls.
After her birth, Naia's heart surgery proved successful. The family catapulted into a world of developmental therapy, special education, and concerns for her future. The Fairchilds briefly weighed the benefits of plastic surgery and began to face the pain every parent and person with a disability encounters when our tax-paying society poses the question, “Are they worth it?”
It was 28 years ago that children with disabilities received the right to a public education when the Individuals With Disabilities Education Act (IDEA) became law. It was 12 years ago that the Americans With Disabilities Act (ADA) extended civil rights protections to millions of Americans with disabilities. The intent behind both landmark commandments was to cultivate inclusion, acceptance, and full community participation.
Society has clearly been asked to change their views about the inherent value of people with disabilities. We have so much farther to go, and Choosing Naia is evident of that.
I expect this book will serve as a baseline. I hope that when the Fairchilds decide to be the subject of a second book down the road a bit, we will find their values and spirit has grown alongside Naia. I want to hear their concerns for her future as an adult, the struggles they have as she pushes for control in her life, and the realization that they almost made a terrible mistake.
I will strain to hear how their lives dramatically changed. Not because of her, but for her and the others who have fought for so long now to be recognized as the human beings they are. That kind of emotional power can mobilize major change and bring society's values to a higher plain.
That's the banner I am looking for.