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Learning about Happiness from Persons with Down Syndrome: Feeling the Sense of Joy and Contentment

Richard J. Robison
Federation for Children With Special Needs
1135 Tremont Street
Boston, MA 02120
(617) 236-7210; Fax: (617) 572-2094
E-mail: fcsninfo@fcsn.org
American Journal on Mental Retardation. 2000. Vol. 105, No. 5, 372-376
  Reprinted with the permission of Bruce Appelgren, Publications Manager
Copyright © 2000 American Association on Mental Retardation

One well-known stereotype about persons with Down syndrome is that they are relentlessly "happy." Although some individuals with Down syndrome seem to possess an unusual personality aspect that calls out the best in others, this aspect should be viewed as distinct from the traditional stereotype. Many people with Down syndrome have shattered popular expectations of what they might accomplish, society still has lowered expectations for them. In this paper I seek to identify those characteristics that offer genuine and thoughtful joyfulness among these individuals Happiness is closely aligned with a sense of peace, well-being, and/or contentment. A more appropriate contention is the idea that a rare and potent trait holds within it true enrichment and peace among individuals with Down syndrome.
A well-known stereotype about children with Down syndrome is that they are relentlessly happy. As the father of two teenagers with Down syndrome, I am uncertain where and how such an image could ever have developed! Yet in certain revealing moments, I do watch and wonder about an unusual quality or characteristic in this regard that stands above most.
     I am the pastor of a small congregation of older individuals in an urban setting. Many of these good folks have demonstrated survival skills and the ability to endure the most challenging of circumstances. For them religion is a serious matter, and the church is not the proper setting for too much fun. Each week as I recess from the pulpit to the back of the church, my daughter Amy, who has Down syndrome, joins me in the journey as I pass her seat in the front pew. As we arrive at the rear door of the church's sanctuary, she pushes me aside and stands ready to greet each and every worshipper who passes through the door. From my vantage point, she accomplishes in one hand shake what has otherwise been elusive throughout the entire worship experience. As she asserts herself with the approaching dour-faced parishioner, by extending her petite hand and heartily bursting forth with an enthusiastic "good morning," the most somber face melts into a joyful, animated smile.
     Amy's gift of happiness is so much more than the stereotype would allow. It contains a certain sense of well-being and self-assuredness that draws and entices. It is not present only in particular settings or under specific circumstances. It is a quality of her personality that exceeds the norm and holds with it a genuineness that defies reproach. She has an awe-inspiring sensitivity to the needs of others around her. Although she has learned to discriminate, there are few she encounters in her world who are not candidates to be her friends, A trip on the city subway in her younger years found her welcoming each new rider, and everyone within proximity was asked to reveal their name, hometown, and destination.
     One can say with certainty that she truly loves people and invites a comparable response. Is this happiness? Is this happiness somehow more evident in those with a 47th chromosome? If yes, what about its presence is determinative? What causes it's unique appearance? Is it a quality that most of the "non-47" chromosome set (i.e., the rest of humanity) conditions away? What might be so harmful about the happiness known peculiarly to one, being shared with others? What really is happiness?
     Most Americans hold fast to their right to the "pursuit of happiness" as guaranteed by the Declaration of Independence. Often, we are quick to comment that it is only the pursuit that is guaranteed and, therefore, the pursuit is a pre-eminent goal of many. Exactly what that happiness looks like is unclear, for it does seem to vary by individual. For some it is material success, for others it might be sexual fulfillment, and for still others, spiritual contentment. Clearly, the forebears of our uniquely American ideal of the quest for happiness never Intended that one individual's quest should be at the violation of another or completed at any expense. For instance, author C. S. Lewis once commented chat happiness would not be tolerated if it comes at the price of murder, rape, or violations of the rights of others, that would be too great an expense. Surely, he felt a price for happiness this great exceeds the expectations of the framers of our American government and of our new world society.
     In ancient ethical/moral literature (such as found in the Old Testament), happiness is viewed as "Shalom" or 'peace" within the society, a sense of harmony and wholeness. In New Testament references, happiness is viewed as blessings from the divine, such as those described by Matthew's Beatitudes: "Blessed (or Happy) are the meek for they shall inherit the earth." For many, and perhaps this describes the 47th chromosome type, happiness is closely aligned with a sense of deep abiding peace, well-being. or contentment.
     Ghandi equated happiness with purity, which is the practice of virtue in thought, speech, and body. It is closely associated with the cardinal virtue "as you sow, so will you reap." No good work goes without good results, no bad work goes unpunished.
     Gardner (1993) discussed the concept of multiple intelligences and noted that he is highly suspect of expressing the strengths of humanity through a single standardized measure, such as that of IQ. Individuals with Down syndrome have not faired well on the IQ question and have consequently experienced undervaluing as a result. Yet proceeding along the lines of Gardner's thought, perhaps there is here an opportunity to define an "HQ." or Happiness Quotient, that may have at its core some of the characteristics instilled by possessing a 47th chromosome. The HQ would be a measure of an individual's ability to contribute to a sense of the well-being of others. Perhaps that is what I have witnessed in the drawn faces of the tired parishioners who suddenly reach within the depth of some internal reserve and become transformed by the smile and touch of the hand of the young woman with the extra chromosome.
     Another example is my friend Ann Forts, who so eloquently and enthusiastically illustrated her take on the world of what she describes as "Up Syndrome." For her there is simply nothing to be down about.
     At this year's Thanksgiving table, unsolicited, Amy came prepared with her own handwritten list of the things she is thankful for:
  1. I am thankful for my family.
  2. I am thankful for my friends.
  3. I am thankful for my fans.
  4. I am thankful for my sister.
  5. I am thankful for my mom who gave me the flowers (after my play performance at school).
  6. I love my mom. I love my dad. I love my sister and my brother.
Jesus related happiness to joy that is made "perfect in weakness." Through simple, enthusiastic expressions of gratitude, the simple becomes profound and imbeds the soul of those around her.
     Recently, Amy was in a video store with her mother. When they walked in, they found a Friday night crowd of children and their parents searching the store shelves. Having just come from her after-school job in a day care center, she was intent on making a quick selection and heading home. As she moved through the store, she noticed a young girl of kindergarten age standing close to her own mother. The girls' eyes met and before either of morn could prevent it, the two girls embraced. Neither of the morns knew each other. Amy is in high school, and one of her regular lessons is about the dangers and difficulties of hugging other children, particularly in public. (Hugging too much is a second stereotypic characteristic of the happiness possessed by children with Down syndrome.) Amy's mother could feel the embarrassment in her cheeks and began co gently, but firmly pull Amy away. She was prepared co chastise her for her repeated inappropriate behavior of hugging strangers.
     The little girl's mother moved in to rescue her daughter from the unanticipated advances of this inappropriate teenager with Down syndrome. Fortunately, each mother, fearful of making a bigger scene, resisted the impulse to move too quickly. Their brief hesitation allowed the encounter to come co a natural conclusion. The embrace ended as hastily as it began. Amy asked the girl about the video she bad selected. They exchanged good-byes and went their separate ways.
     As they moved away from each other, the little girl looked at her mother's face, which by now wore the question, "Haven't I told you not to speak to strangers?" Meanwhile, Amy. sensing her own mother's embarrassment, said to her, "That's Sherrie! She's from my group at the afterschool program (Amy's pan-time job). Then it happened! Sherrie announced in a loud, excited voice to her mom, "That's Amy, she's my teacher!" In fact, Amy had just read a story to the little girl's group that very afternoon.
     What does this indicate about a child with Down syndrome and her ability to bring happiness to others as compared simply to the stereotype of the hugging and happy one? I saw several things happen here: Thinking that I might find an answer to this mysterious quality of her personality, I asked Amy to help me describe her. Taking my point of view, she wrote:
This is my second teenage daughter. She is famous and popular. She likes school and gets A's, B+'s and B's on her report card. She is smart. She's been in plays like 'A Winter's Tale', and 'Love's Labor Lost' by W. Shakespeare. She sings in chorale concerts and at School assemblies. She's in clubs like 'Best Buddies', also the Backstreet Boys Fan Club. And she has a crush on Nick Carter (of the Backstreet Boys). She is a collector: she collects friends, and books and books on tape and videos and CD's. She is so cool. She likes guys, reads magazines, and loves make-up. She watches a lot of TV and surfs the web. When she grows up, she wants to be an actress.
If there is any stereotype to explore here, it appears to me to be that of a modern teenager, except that she is truly happy most of the time and generally content to be a teenager.
     Having made these observations about the happiness of this one person leaves me with somewhat of a dilemma. As described, one might be led to overcharacterize her as "the eternal and happy" child with Down syndrome. This, however, negates the reality that she, like each of us, also experiences a full range of emotions, struggles with the challenges of daily life, and confronts a higher than normal risk of exposure to discrimination or misunderstanding as a result of her disability. There is considerable literature to suggest that persons with Down syndrome are also at increased risk to be diagnosed with depression.
     Several very articulate and accomplished young people with Down syndrome have moved to prominence in our society in recent years. Chris Burke starred in the TV Series, Life Goes On; Kingsley and Levitz co-authored their autobiographies In their well-acclaimed book Count Us In-Growing up with Down Syndrome. Ann Forts has become a widely sought inspirational speaker with her focus on "Up Syndrome." Other individuals with Down syndrome arc establishing themselves as well. Raymond Hu is an accomplished artist. Gretchen Josephson a published poet. In addition to Jason Kingsley, Family Circle Magazine ("Down Syndrome," 2000) recently focused attention on Nannie Sanchez, the first person with Down syndrome in the United Slates to run for public office; Ashley Wolfe, who has completed the 2-year Threshold Program at Lesley College; and Ellen Kuhn, the first child with Down syndrome in rural Pennsylvania to graduate from a fully demanding high school schedule. What is striking about each of these individuals is their determined struggles to overcome the preconceived notions they have experienced. Each has learned his or her own lessons about how people try to put people with Down syndrome in a box. It is the expectation that they cannot and will not do what people without Down syndrome do as they grow up. These stereotypes arc pan of the society and often perpetuated by the media. The examples of these young adults with Down syndrome, who are the first generation of those receiving early intervention, arc breaking the mold as they achieve in ways never before known. It is far more common today to encounter individuals with Down syndrome who hold a competitive job, drive a car, or who are listed on their high school honor roll. Yet there is still a long way to go.
     In 1981, The United Methodist Board of Global Ministries held an ecumenical symposium that raised the uneasy question, "Is our theology disabled?" (1982), Recognizing the broad implications of this question, the group focused on the thoughts of German theologian, Jurgen Moltman, who wrote. "The world surrounding the person with a disability views him or her as a threat, an insecurity, and a disturbance of its sense of value; people develop defense reactions that are coupled with guilt." He went on to state, "We divide people into two groups; persons we 'welcome' and persons we 'put up with'. Par too often people with disabilities suffer the fate of being 'put up with'" (p. 5). If Moltman is correct, we might further suggest that individuals with Down syndrome who meet the stereotype of "happiness" offer a comfort to individuals without disability who encounter their own discomfort. For the individual with a disability who is treated this way, feelings of isolation, subservience, and inferiority are often produced. Prophetically, Perske (1980) predicted that our "civilization would put on a better pair of glasses" (p. 12) and that people with disabilities who face "an obstacle course" will begin to overcome those challenges and learn to live with the wounds they experienced while growing up.
     The gift of a child with a "sunny disposition" need not be discounted nor dismissed. The blessings of a young adult who has the ability to make others feel good about themselves should be celebrated and welcomed. Identifying the secrets of the evolution of the development of a new generation of leaders who have the talent for bringing out the best in people demands a priority for research funding in order to replicate these characteristics in the general population.
     More than ever, individuals with Down syndrome are rightly assuming their places in the center of our society. Obstacles are being removed as they break the stereotypes and mold of the innocent adult child. New frontiers will be confronting this new generation of adults, who like each of us will require the ongoing support and encouragement of their social networks, including their families and friends. The social revolution of the 1970s, which allowed many disenfranchised members of our society to finally emerge, can no longer be denied for individuals with Down syndrome. The "early intervention" generation is now coming of age, with the full complement of high quality educational experiences and participation in the general society. Self-advocacy is the critical new path that will witness citizens with Down syndrome taking their place in unprecedented ways alongside their peers who do not have disabilities. These young people on pioneering paths will embrace their challenging places. Yet, the endearing personalities of the talented individuals who have already asserted new places for themselves are only a preview of the good chat is still to come.
     Nannie Sanchez, in her recent interview stated, "Down syndrome doesn't mean I can't. It just means it takes me a little longer" (Family Circle, 2000). Personally, I would be pleased to revel in "happiness" with the best of them.

Down syndrome doesn't mean "I can't." Four success stories. (2000, March 7). Family Circle Magazine, p. 63.
Gardner, H. (1993). Multiple lntelligences: The theory in practice. New York: Basic Books.
Kingsley, J., & Levitz. M. (1994), Count us in: Growing up with Down syndrome. New York: Harcourt Brace.
Perske, R., & Perske, M. (1980). New life in the neighborhood. Nashville: Abingdon Press.
United Methodist Board of Global Ministries. (1982), Is our theology disabled? Nashville: United Methodist Board.

Revised: June 10, 2001.