"Life With Anthony"

What would you do if you could know ahead of time that your child would have a life-long disability? Because Trisomy 21 can be detected during pregnancy, Lisa Spellman asks herself this very question in Margaret Renkyl’s article, “Life With Anthony.” According to this article, about 90% of pregnancies that test positive for Down Syndrome are aborted, but Lisa claims that if she had had the test and knew Anthony would have the disability, she would have carried the pregnancy to term anyway. What is most interesting about this article, however, is the words used to describe Anthony and his disability. The title, for example, gives a hint to the strange word-play to come, because the first thing that comes to mind after reading “Life With Anthony” is “Life Without Anthony.” In this way, I feel the young boy is equated with and identified by his disability. This kind of labeling can create stigma. The word choice of the section headers in the article will be discussed to show the pessimistic representation of disability.

The first section header is “Devastating news,” implying that Anthony’s initial diagnosis of Down Syndrome was a terrible tragedy; devastation is a term used to describe natural disasters, ruin, and death. It should not be used to describe the diagnosis of a little boy. The next section title is “Coming to terms,” which echoes the tragic quality assigned to Anthony’s diagnosis. When I think of the phrase “coming to terms,” I think of dealing with unavoidable crises. While Anthony’s disability came as a surprise, his family’s reaction is darkened by being described by this phrase. The final header in the article is “Fears and hopes.” By placing the word fear in front of hope, Down Syndrome is once again described in terms of devastation. One wonders what there is to be afraid of; Trisomy 21 is a disability, not a convicted kidnapper or murderer. The fear and stigma of Anthony’s disability seem to overshadow the fact that he can still have a good and productive life. This article is very telling of the stigma attached to disability, and it seems possible that these word choices were even accidental, or without such intention. Most of the headers in “Life With Anthony” clearly imply trepidation and doom for a little boy, and these headers are all assigning meaning to the label of disability that has been bestowed upon him.

article - http://www.cnn.com/2008/HEALTH/family/02/13/par.life.with.anthony/index.html?iref=newssearch

Acceptance of Down Syndrome

As everyone knows, a person with Down syndrome is certainly recognizable, as their disability is plainly visible.  Wide-set, almond-shaped eyes, flat nasal bridge, short stature and short limbs, thick neck, poor muscle tone, and the characteristic protruding tongue and single palm creases—all are outward signs of Down syndrome.  Cognitive impairment, varying degrees of learning disabilities and mental retardation, and congenital heart defects are only a few of the inward signs of this complex genetic condition.  A problem arises, however, when the outward appearance of a child with Down syndrome affects his acceptance into society.  Questions arise.  Should such a child be surgically altered to become more acceptable?  The answer to this question is a resounding “yes” to one couple in the United Kingdom.  A plastic surgeon and his “surgically enhanced” wife admit they are considering surgically altering their daughter’s appearance in the future to assure society’s acceptance of her.  Yet this raises another question:  are they considering surgery to help their daughter in the future, with her happiness in mind, or are they more concerned with their own disappointment in having a less-than-perfect child?  Further, this is certainly commentary on what we, as a society, value…whatever is aesthetically pleasing.

Ophelia Kirwan, age two, has no idea she has Down syndrome, or for that matter, what Down syndrome even is.  She has no idea she looks different from most other two-year-olds, and she has no idea of her pivotal position in this furious ethical debate.  While their admission could be considered noteworthy, her parents maintain they fear that Ophelia and “others like her” will be unfairly judged for their appearance, particularly where it concerns future employment.  They maintain they simply want her to be happy, and they are not alone in this sentiment.  Another couple in the UK have already had cosmetic surgery performed on their own daughter, Georgia, who also has Down syndrome, three times before she was five years old, once to “correct” her protruding tongue, once to “correct” her slanting eyes, and once to “correct” her ears that stuck out.  Again, they cite their daughter’s happiness as their only concern.             

When considering this news story, we must question what these parents are modeling for their children, especially in regard to attitudes toward disabilities.  Many times, these behaviors are learned.  Further, cosmetic surgery can only affect outward appearance.  What will they do for inward manifestations of Down syndrome?  Does this say that outward appearance is of supreme importance?  Ultimately, will cosmetic surgery make any difference to how these children feel about themselves?  Will they even know the difference, and isn’t that what these parents should be considering?