On Low Employment Expectations For "The Retarded"

Causes, Problems, and Breaking the Stereotype

By Howard Lenhoff, Ph. D.

All of us like to find jobs which match our true abilities and potentials. This ideal job placement will rarely happen for the mentally asymmetric, those generally labeled "retarded." The cards are stacked against them from the start. By whom? Often by the very people who should be the most caring and enlightened, the mental health professionals and the parents. Williams syndrome: My opinions are based mostly upon my experiences as a parent of an adult mentally asymmetric daughter, Gloria, who has Williams syndrome. Gloria is blessed with a superb lyric soprano voice; she sings in twenty five different languages, and is an accordionist with a repertoire of over 2,000 pieces. In addition, my experiences as co-organizer of the Williams syndrome Music and Arts Camp in Massachusetts and as a lecturer on music and Williams syndrome, have led me to encounter much anecdotal evidence in recent years from many parents and teachers indicating that [people with Williams Syndrome] show varying levels of musical abilities, some quite extraordinary. Although a proud parent, I am a trained academic researcher in the biological sciences who tries to temper my parental pride with some scholarly caution and skepticism. Low expectations by professionals: Why do I place the onus for severely limiting employment opportunities on professionals (that is in social work, education, mental health, and medical fields) and parents? The professionals are responsible for advising the parents and for seeking educational and work opportunities for our mentally asymmetric children; the parents are responsible for providing the necessary parental support, guidance, and training at home. My experience has shown me that most professionals and parents tend to become conditioned to expect too little from our children in regard to work potential. Why? The professionals' attitudes are often influenced by the many low functioning "clients" or "consumers" (God, I hate those classifiers!) they already work with day in and day out. They thus conclude that other mentally asymmetric individuals have no promise of holding jobs requiring higher levels of functioning. Consequently, those responsible for placing our children in the workplace select menial jobs for them. For example, men are supposed to do garden, yard and custodial tasks, or similar heavy work. Women are supposed to do lighter jobs, such as house work, or to act as chamber-maid helpers for hotels. Both sexes are considered suitable for doing factory-type piece work, assembling, sorting , and the like. And, of course, they can wash dishes at fast-food restaurants. In no way do I deprecate such work. I know that my own daughter has liked most of the jobs such as those just described that she has held over the past twenty years. Many times those jobs provide one of the few available social outlets so necessary for our children. Also, because they do provide some income, usually a minimum or token amount, they give our children some sense of self-worth. But that is not my point. I believe that a significant number of mentally asymmetric individuals, especially those who are not severely disabled, have one or more talents, and that it is the responsibility of the professionals and the parents to find those talents. Let me give one example outside of Williams syndrome. I refer to the National Institute of Art and Disabilities (NIAD) in Richmond, California, USA. Over 25 years ago, Dr. Elias Katz and his late wife, Florence Ludins-Katz, developed this innovative rehabilitation center "which taps a long-neglected yet essential aspect of human functioning [in the mentally asymmetric]: creative self-expression." In a unique studio setting created by the Katzs, they offer opportunity and special methods promoting creative work by the mentally asymmetric in painting, sculpture, printmaking, and other creative crafts. Dr. Katz lists over two dozen centers like his in the USA and two in Canada. The mentally asymmetric artists come to his center with a variety of syndromes. NIAD has two galleries in the San Francisco area, one on the prestigious Ghiradeli Square, displaying the products of the artists. We are the proud owners of two outstanding prints by mentally asymmetric artists of the NIAD studio. I use the term "asymmetric." Whereas these artists and the Williams musicians may be slow or "retarded" in regard to a number of cognitive functions, they may excel in some other trait. Parents of children with Williams syndrome have the new good fortune to know that many [people with Williams Syndrome] have extraordinary talent in music. So why not get those Williams young adults training and employment that makes use of those talents? For example, why not provide [people with Williams Syndrome] work opportunities to play in a band, or perform at restaurants and local commercial, religious, or social clubs? Similar attitudes of professionals toward the recovered mentally ill: While discussing this problem of low employment expectations for the mentally asymmetric with Harvey Lipman, an editor and writer for the Albany (NY) Times Union, he told me a similar story about Dr. Edward Knight, now co-chairman of a sub-committee appointed by the NY Health Commissioner to help design a managed-care system for Medicaid. Dr. Knight, a Ph. D. in Social Research and a former college instructor, suffered a number of psychotic episodes following the death of his young wife. After fifteen years in mental institutions, Knight was to be released on the condition that he set "realistic" goals for his return to the community. Lipman (Albany Times Union, January, 1996) uses Dr. Knight's own words to describe much of what then happened: "I had a [Ph. D.] degree and I was a research sociologist. They wanted to know what I wanted to do, and I said 'I'd like to do research on schizophrenia.' And I was told, 'That's a delusion of grandeur.' So I said, 'Well, I'd like to start self-help and advocacy groups.' 'No, that's a delusion of grandeur.' 'I'd like to write; I've written a couple of articles.' 'No, that's an illusion of grandeur. You have to recognize where you are in life now. You're in a public mental institution.' A couple of weeks later he went back to the staff and told them he hoped to become a filing clerk, which they decided was a wonderful idea. "A little while after that a psychologist took me aside, back in the nurse's station, closed the door so that nobody could hear us, and said, 'Don't give up[ your delusions of grandeur]. Those are your goals.' " Today, in addition to his position co-chairing New York state's mental health committee, Dr. Knight is on the executive committee of a research center on mental health established by the National Institute of Mental Health, and is executive director of Mental Health Empowerment Project, Inc., which helps people with mental illness set up self-help groups in New York state. Parents' deflated job expectations: Focusing once again on Williams syndrome where employment in the music field may offer some opportunities, I see a multitude of reasons why parents of Williams adults do not encourage them to seek such jobs. For one, those sort of opportunities do not exist in the employment categories determined by the mental health professionals who fund the institutions that train and help the mentally asymmetric find jobs. Further, the well-meaning mental health professionals, teachers, and physicians dealing with our children do not encourage parents to have such "unrealistic" goals for their children. After being led to believe that their children will be capable of handling only relatively simple work, the parents become discouraged from providing their children with the lessons and training needed to allow them to compete successfully. Because of the difficulties involved in raising and caring for a mentally asymmetric child, it seems quite natural for those parents to not want to set themselves up for disappointment. On the other hand, many of those same parents, encouraged by professionals, will go to great lengths to try to train their children in arithmetic and in solving money problems as "independent living skills," although, at least in the case of Williams syndrome children, those lessons usually lead to disappointment and are frustrating to teachers, parents, and children alike. Difficulty in finding teachers who will teach in non-traditional ways: Even if parents wish to give their children the necessary lessons and training in music, it is difficult to find private teachers who will teach "retarded" folk. When instructors are found, most will use music as primarily as "therapy." Few teachers want to teach students who usually are not able to learn to read music, who will never conceptually grasp intervals and music theory, and who often do not have the motor coordination to play the majority of musical instruments in standard fashion. Those of us who have had success in finding suitable teachers may go through two to three before finding one who is creative enough to accept the challenge of teaching music in non-traditional ways. But once these teachers do come on board, they become almost fanatic in their enthusiasm based on their discovery of the extraordinary musical talents of their mentally asymmetric students. When we have moved to new communities, we have learned to start by finding bright (and hungry) college students who are open to giving it a try. Our experiences in providing training in music: Our musical Williams daughter, Gloria, has just turned 41. We did not know that she had Williams syndrome until she was 34. Up until then we were told that she was brain damaged and was "educably mentally retarded, " and that we should not expect too much. Noticing that as a child she had a long attention span only for listening to music, we started seeking music teachers for her when she was about 12. Once we saw she had a talent for singing and playing the accordion, she has had lessons ever since. Once again, Gloria had these opportunities because we did what most parents of mentally asymmetric children do. We did it ourselves in spite of the system. Gloria, like most [people with Williams Syndrome], loves to perform. Give her a microphone and an audience and she is transformed. She takes command, oozes a strong sense of self-confidence, and performs to the hilt. Being pushy parents, we made certain that Gloria performed whenever and wherever there were opportunities. We started at local social and church clubs, at schools. Once she was experienced we particularly focused on having her perform for events promoting the needs of the mentally asymmetric; these were at local, state, national, and international levels. Usually she soloed, but for a while she was part of a group of "retarded" musicians called Hi Hopes. A curiosity? Despite Gloria's unique musical abilities, some that rank with those of even the best of professional musicians, she is usually viewed as a curiosity, as an "idiot savant," as a rarity among the retarded. She is seldom considered for what she is, a highly talented and versatile musician and performer. But something interesting happened when we moved out of a large metropolitan area and took up residence part of each year in a small coastal community in northern California. New opportunities in a small town: When we moved north, we expected the worst regarding opportunities for Gloria. To our surprise we found an enlightened "server" of the local mentally asymmetric citizens. The staff tried very hard to match employment and training opportunities to each of their "clients." The first time Gloria was employed there they got to know her by having her do sorting jobs in their now-defunct thrift store. During our next stay in that town, they taught Gloria to become a cashier in that thrift store, a feat that we thought impossible because of the notoriously weak mathematical abilities of [people with Williams Syndrome]. During this last visit, after the thrift store was closed down, Gloria became an office worker, and made a good start into touch typing, a skill that she is still trying to master. A curiosity no more: But all this time, my wife and I sought opportunities for Gloria to perform after work hours at local events and institutions. She played regularly at the town's senior center on birthday, Thanksgiving, and Christmas celebrations. She performed regularly at the local Spring Downtown Street Fair, at the community Thanksgiving dinner, and at a synagogue and churches. After a few short years there she has gained a following of admirers of all ages. Hardly a week went by that her performances would go unnoticed by the local newspaper. She no longer was a curiosity. Her talent as a performer became recognized widely in the community. For a while she provided the sole musical entertainment billed as "Gloria's Lunch time Serenade" at a local music cafe. Breaking through the bureaucratic curtain?: Watching carefully Gloria's evolution as a local attraction were her employers, commissioned by the state. They decided that Gloria could probably get part-time employment as a musical entertainer in numerous places in the community: at the senior center, nursing homes, social and religious clubs, and restaurants. However, there was no such job classification in the state bureaucracy for a "retarded " entertainer. Toying with the idea, and exploring the various employment opportunities for the "retarded" in the state, they found a possible loophole, a job classification as a "recreational aide," that is someone who can assist at nursing homes helping the occupational therapists with the residents of the home. Because Gloria has had much experience entertaining at nursing homes, her work trainers thought that job classification would be a start. Once successful at this level of employment, and there is no question that she will be a hit, Gloria's trainers feel that the next step will be to tweak that job classification ever-so-slightly allowing Gloria to gain employment which fully utilizes her special talents, such as at local restaurants and clubs. These are the plans. Will the professional bureaucrats interfere and prevent Gloria from breaking out of the trap of menial employment? Only time will tell. I will report to you the results of this continuing saga in a forthcoming issue.