People with Down Syndrome

Down Syndrome Today
Spring 1992, Vol. 1, No. 2, p. 22
Darlynne A. Devenny, Ph.D.

Printed with the permission of Darlynne A. Devenny, Ph.D.
New York State Institute for Basic Research in Developmental Disabilities
1050 Forest Hill Road
Staten Island, NY 10314

     People with Down syndrome are not diseased. They are not "afflicted with", "suffering from", or "a victim of" Down syndrome. People have Down syndrome.
     There is a growing sensitivity to the terms used to refer to differences between people. The language used to describe people with Down syndrome, also, has changed to express a recognition of their rightful participation in the community.
     In the original article on this syndrome in 1866, J. Langdon H. Down focused on a few features. In particular he noted facial features which included a flat profile, narrowing of the eyes and eyes wide set and oblique. This facial configuration is typically found in people of Asian descent. Down noted the similarity in a group of his patients whom he described as "Mongolian". Ten years later a dissociation between the syndrome and the cultural group of Mongols was advocated. But the term 'mongolism' persisted in journals and scientific writing through the 1970s.
     What has this label 'mongol' meant to people with Down syndrome? First, it has focused attention on a few specific facial features. The typical formation of the eyes is a consequence of a shortening of the front-to-back dimension of the skull. The bridge of the nose is flattened by this growth retardation. This produces the wide set appearance of the eyes and the exaggerated fold of skin beginning from the inner border of the eye. However, by focusing on physical characteristics that people with Down syndrome have in common, the important differences that identify these people as individuals tend to be overlooked. Second, by referring to people with Down syndrome using an exotic term, a "psychological" distance was created between them and their family and community. The original choice of the term 'mongol' was part of a naive attempt to categorize people with mental retardation, in general. However, long after this categorization scheme was abandoned, the distancing effect created by its use persisted.
     In recent years the term 'mongolism' has been replaced by Down syndrome. However, when 'Down syndrome' is used as an adjective, as in "the Down syndrome woman", it places an inappropriate emphasis on the syndrome as being the major characteristic of the individual. It is as if I know the person when I know that she has Down syndrome.
     It is more appropriate to refer to a "person with Down syndrome". This is a descriptive term to indicate a person with a particular chromosome disorder. This places the syndrome in a less prominent position and emphasizes the primacy of the individual.
     As we are all aware, however, there is tremendous variability among people with Down syndrome. Knowing that someone has this syndrome informs us that the individual has three copies of chromosome 21 and that the consequences of the extra chromosome are likely to be... (and you think of all the possible associated features). The critical word, however, is likely. Not everyone with Down syndrome has all features associated with the syndrome. In addition, individuals with particular features will differ with respect to how that feature is expressed. In fact, the differences between people with Down syndrome far exceed their similarities.
     If we are to give full recognition to people with Down syndrome we must recognize their individuality. Using correct terminology is a beginning.