Stephanie Meredith, past co-president of the Down Syndrome Association of Atlanta, sends a response to Leslie Roberts’ blog post: ‘When abortion may be an acceptable choice.’ Roberts, a Canadian newsman and television personality, had written that abortion may be an acceptable choice when a disability is diagnosed prenatally.
Far from adding unendurable stress, parents of children with Down syndrome indicate that the stress involved with raising a child with Down syndrome is lower than expected (Hodapp et. al. 2001) and that families enjoy positive benefits from raising a child with Down syndrome (Blacher & Baker 2006). In fact, research suggests the parents of children with Down syndrome actually experience a lower divorce rate than couples who do not have children with Down syndrome (Urbano & Hodapp 2007), and the siblings of children with Down syndrome are typically more compassionate and well-adjusted than their peers (Dykens 2005).
While the reasons for this have not been fully explored and since most parents would resolutely deny the claim that they are saints, the evidence suggests that there is something to be learned from embracing genetic diversity. The majority of parents I have encountered as the former co-president of the Down Syndrome Association of Atlanta found that the greatest source of stress for them originated not from the child with Down syndrome but from difficulty accessing social supports and acceptance. Instead of languishing in institutions as was the standard practice just twenty or thirty years ago, when individuals with Down syndrome have been given the opportunity to “make real the promises of democracy” by fully participating in education, community, healthcare and employment, they have flourished as a whole (King 1963).
In just one generation, improvements in healthcare have almost doubled the life expectancy since the 1980′s (Yang, Rasmussen & Friedman 2002). Furthermore, since children with Down syndrome were granted the right to a public education in 1975 and early education services in 1986 in the United States, they have increasingly graduated from high school, attended college, and worked in various professions. So, for one generation, a window was opened to allow them basic rights, and they seized it and thrived. Unfortunately, the progress of this generation has gone unnoticed by most of society, including some in the medical profession. So, the outdated perceptions of people with Down syndrome who were never given those basic rights is held up as the standard for what people with Down syndrome can achieve, and the existential threat to this diverse population looms when prenatal screening is coupled with these outdated perceptions.
Indeed, Down syndrome stands on the precipice of an even greater debate about prenatal screening. What is society willing to sacrifice in terms of diversity as this standard of “suffering” begins to be applied to cystic fibrosis, autism, a family history of breast cancer, and more? Instead of improving the lives of these individuals with medical and social advancements and embracing their contributions to society, is it better to deny their existence altogether?
Hodapp, R., Ly, T., Fidler, D., Ricci, L. (2001).
Less Stress, More Rewarding: Parenting
Children With Down Syndrome. Parenting, 1,
Blacher, J., & Baker, B. (2006). Positive
impact of intellectual disability on families.
American Journal on Mental Retardation, 112,
Urbano, R., & Hodapp R. (2007). Divorce in
Families of Children With Down Syndrome:
A Population-Based Study. American
Journal on Mental Retardation, 112, 261-274
Dykens, E. M. (2005). Happiness, well-
being, and character strengths: Outcomes
for families and siblings of persons with
mental retardation. Mental Retardation, 43,
King, M.L. (1963). I Have a Dream. Retrieved May 24, 2008,
Yang, Q., Rasmussen, S.A., Friedman, J.M.
(2002). Mortality associated with Down’s
syndrome in the USA from 1983 to 1997: A
population-based study. Lancet, 359, (9311),