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| Mental Asymmetry
(This article appeared in Ability Network Magazine - Spring 1995, Vol. 3, pp. 15-16. Please look at the end of this file for more information about this publication, copyrights, etc. The following is an abbreviated form of that article. H. M. L.) Many parents of mentally "retarded" children have been wrestling with definitions for the "disabled" for years. My particular problem will become clearer after I describe Williams syndrome briefly for those not familiar with this condition, presumed to affect one in twenty thousand individuals. Williams syndrome, sometimes called "Elfin Facies Syndrome," is caused by a microdeletion in one of the pair of number seven chromosomes. The microdeletion takes place in the formation of the sperm or egg, and the condition is determined at conception. One of the genes missing is the gene for elastin, the stretchy protein responsible for a number of the medical traits, such as cardiovascular problems, common to the syndrome. Those with Williams syndrome possess a friendly personality, an unusual facility with words, and a heightened sensitivity to sound (hyperacusis). Recently, it is becoming more and more apparent that many individuals with Williams syndrome have a remarkable capacity for learning and retaining music. Last summer, the first ever Music Camp for those with Williams syndrome was held in Lenox, MA, home of the famous Tanglewood Festival. Some Williams "savants" were recently featured over National Public Radio in the USA. My daughter Gloria, now forty, has a rich lyric soprano voice, and can play on the full-sized piano accordion, with ease and embellishments, almost any song she hears. She has a repertoire of about 2,000 songs and sings in over 20 foreign languages. Yet, like most individuals with Williams syndrome, she cannot add 5 + 3 nor can she get along independently. With her IQ of 65, we know she is "retarded," but in comparison to her and others with Williams syndrome, are not most of us "retarded" when it comes to learning and retaining complex music? Now you see my dilemma, and why I have been wrestling with the common definitions for the disabled. The only definition that I find accurate is "mentally asymmetric." My reasoning is as follows: STANDARD TERMSMentally Retarded when applied to certain mental features of individuals is a perfectly accurate term. It means "slowed down below normal." There is no doubt in my mind that Gloria is slower in certain cognitive, behavioral, and physical functions and will always be that way. On the other hand, in certain functions, like the retention of language and music, perfect pitch, and her general sweet nature, Gloria far surpasses a cross section of a typical population. Thus, mentally retarded when used as a general descriptor is not an accurate term. Developmentally Delayed is used by some in place of mentally retarded because, to some, retarded has a disparaging connotation. I do not like delayed because the word implies that the normal state is simply held back and will eventually be reached, and that is simply not true. Mentally disabled implies that all mental functions are below normal, and that is not correct for Williams syndrome people. Mentally Handicapped to many people seems a less objectionable reference, but I personally do not like the word "handicapped," which was derived from the phrase "hand in cap" used in sports and gambling circles, as in "handicapping" a racehorse. The term then became generally used to refer to people who are economically at a disadvantage because of a physical or mental defect. Developmentally Disabled is now one of the preferred terms, the one accepted by the Association of Retarded Citizens. Unfortunately, that phrase can also refer to extremely bright people who have congenital blindness, deafness, or other physical defects. The attitudes of most people to these individuals of normal intelligence who are physically disabled is usually positive, and quite different from their attitudes towards those who are "cognitively and behaviorally disabled." So in spite of its growing acceptance, the term developmentally disabled will not awaken public understanding of individuals with Williams syndrome nor accurately describe their abilities. Mentally Challenged seems to be gaining popularity as the politically correct way of describing our children. To me the phrase is too contrived. Aren't we all mentally challenged? Mentally Disadvantaged is another "politically correct" descriptive term you may hear. Although I do not think it accurately describes our children, I find the term acceptable in that it implies some social responsibility on the part of the public. That is to say, the general community is to take responsibility for providing appropriate opportunities for the "mentally disadvantaged" just as it does for the economically disadvantaged. AN ACCURATE AND POSITIVE ALTERNATIVE: MENTALLY ASYMMETRICIs there a more useful and accurate term? Yes! Mentally Asymmetric: All of the labels listed above to my mind are either inaccurate or negative and do not describe those with Williams syndrome well; they especially obscure the positive aspects and talents (some latent and some developed) of individuals with Williams syndrome. Some cognitive scientists convey the same concept by using the descriptive term "peaks and valleys" when describing individuals with Williams syndrome. Because "mentally peaked and valleyed" is hardly grammatical, I am starting to use in my publications the term Mentally Asymmetric, which points out that although individuals with Williams syndrome are not able to carry out some mental functions considered normal, they also exceed expectations of normal individuals in other areas of brain activity, especially in language and music. The first encounter with the term mentally asymmetric may cause confusion. Thus, I now start out describing my daughter as mentally (or developmentally) retarded, handicapped, delayed, disabled, challenged, or disadvantaged, depending upon the situation. But after a few minutes my audience starts to recognize her verbal fluency, and usually comments on how well she speaks. Then I give "the lecture" and tell them about Williams syndrome and the unusual capacities those individuals have. After that the phrase mentally asymmetric becomes lodged in their minds and will have a familiar ring to it the next time they hear it, and they too may start to use the term. I am not expert on other types of disabilities, but I feel confident that the term "mentally asymmetric" is applicable to many other "disabled" individuals with their own peaks and valleys. *Dr. Lenhoff, Professor of Biological and Social Sciences Emeritus, University of California, Irvine, is the author of the article "A Real-World Source for the 'Little People': The Relationship of Fairies to Individuals with Williams Syndrome" (in press, 1997, University of Georgia Press) and numerous newspaper articles on the mentally asymmetric. He has served on the Board of the Williams Syndrome Association, and is President of the Williams Syndrome Foundation. [Now Executive Vice President.] This article is from Ability Network Magazine: Volume 3 Number 3 - Spring 1995. 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