As little as 30 years ago, parents who had children with Down syndrome were told that they should institutionalize them. Now they’re far more likely to be encouraged to have high expectations, and to prepare for their children to be fully included in public education and even college.
But the mainstream understanding of intellectual disability still presents the child as a burden, and the parents martyrs. The more upbeat version of this formulaic narrative is that the world provides “special children for special parents,” with the parents framed as heroic and courageous, as though they are the only ones capable of parenting children with disabilities. Little wonder, then, that when prenatal tests identify a fetus as having Down syndrome, 90 percent of those pregnancies are terminated.
It is against this backdrop that parents are being offered a new prenatal test that scans fetal DNA in maternal blood in order to detect Down syndrome much earlier, and without the risks of amniocentesis or CVS, making abortion easier.
Is this really a “major medical advance,” as supporters claim? Or will it push parents into making choices based on the still-common misperceptions?
We are in the initial stages of a research project in which we’re interviewing parents of children with Down syndrome. Our research belies the common misconceptions. In the conversations we’ve had, we’re learning that families are doing just fine.
Before their children were born, many of the parents knew no one with Down syndrome, so they believed the stereotypes. What parents learned through their own experiences, however, and through connections with other parents was that life with a child with Down syndrome was very much like life with any other child: full of challenges, rewards, frustrations and satisfactions.
A father of a toddler explained, “I don’t think about this at all because life is so normal now.” The mother who was afraid of her child being a greeter at Walmart laughingly reported what her sister told her: “Your daughter’s going to … have a label that says ‘Down syndrome’ that explains why she’s a little whacked. The rest of us, you know, just go around with no excuse.”
Recent research has demonstrated that there are no significant differences in terms of happiness for parents of children with disabilities or without. Divorce rates are high in our society, but they’re not higher in families with children with disabilities. Indeed, having a child with a disability can add life skills to parents and siblings.
Yet the misconceptions continue to circulate, sometimes bolstered by medical professionals. One parent’s obstetrician advised that “the quickest, cheapest way to solve this problem is to terminate the pregnancy.” Another told a mother who wanted to continue the pregnancy, “You’re more courageous than I am.”
All the parents we’ve interviewed have told us they are experiencing lives that are far better than the familiar narratives predict. One mother said, “Being with (my daughter) has changed my life so profoundly for the positive that I obviously wouldn’t have it any other way.” While her child played on the floor, another mother shared: “It’s an amazing thing. I never, ever thought I’d be so blessed by having this amazing child.”
As we develop new prenatal tests that allow parents to choose whether to bring a potential person into their family, we need to balance expectations instead of allowing fear and misinformation to win. Parents can learn more about local resources and community through Family Connection; ThinkCollege.net lists college options for people with intellectual disabilities.
The reality is that life for families with or without children with Down syndrome looks much the same: a combination of joys, disappointments, surprise and moments to cherish. It’s being members of a family that is the most central and shared part of human experience — no matter what our differences.
Dr. Piepmeier is director of Women’s and Gender Studies at the College of Charleston, an associate professor of English and a faculty affiliate of the REACH program; contact her at piepmeierA @cofc.edu. Ms. Cantrell, a junior Women’s and Gender Studies major at the College of Charleston, is assisting in the research on this project; contact her at firstname.lastname@example.org
Read more: http://www.thestate.com/2011/11/09/2039373/piepmeier-cantrell-looking-anew.html#ixzz1dPEAHUot