The Promise of Adulthood Dianne L. Ferguson Philip M. Ferguson

The Promise of Adulthood Dianne L. Ferguson Philip M. Ferguson activities as the making of sound effects.Furthermore, the drama teacher at Ian’s high school just happened to be quite active in community theater in our town. Our objective, then, was really to see if we could figure out how Ian might participate in community theater productions as an adult leisure activity, possibly networking with the drama teacher to gain an entree into that group. To our pleasure, Ian benefited in many more unexpected ways from his introduction to the dramatic arts: memorization, articulation, expressiveness, and social interaction. He also learned to “fly.” A major part of the first few weeks of class involved Ian’s participation in “trust” exercises. Some students fell off ladders, trusting their classmates to catch them. Others dived off a runway with the same belief that their friends would break their fall.The exercise that Joe Zeller, the teacher, picked to challenge Ian was called “flying.”Seven or eight of Ian’s classmates were to take him out of his wheelchair and raise him up and down in the air, tossing him just a little above their heads. Now, the first time they tried this, everyone was very tense. Both Mr. Zeller and Leah Howard (Ian’s support teacher) were nervous; it was an adventure for them as well.The students released Ian’s feet from their heel straps, unbuckled his seatbelt, and, leaning In his last year of high school, Ian Ferguson learned to fly. This was quite an accomplishment for someone labeled “severely mentally retarded” and physically disabled. As Ian’s parents,we marveled at his achievement and worried about the law of gravity. Let us explain. As part of Ian’s final year as a student—nearly 20 years ago now—he enrolled in “Beginning Drama.” Following his carefully designed transition plan, Ian spent most of the rest of his day out in the community working at various job sites, shopping at various stores, eating at various restaurants. But he began each day in drama class with a roomful of other would-be thespians.The logic behind Ian’s participation in the class at the time was that it might lead somehow to his adult participation in some aspect or other of community theater.You see, while Ian’s vision is poor, his hearing is great. In fact, he finds odd or unexpected sounds (human or otherwise) to be endlessly amusing. During high school, one of our more insightful friends bought Ian a set of sound effects tapes of the type used by theater groups (e.g., “Sound A-24, woman screaming, 27 seconds” [screaming ensues]; Sound A-25, man sneezing, 15 seconds . . .”) as called for by various productions. Surely, we reasoned, Ian could learn to control his laughter long enough to help in such offstage 612 ISBN 1-269-33051-9 Instruction of Students with Severe Disabilities, Seventh Edition, by Martha E. Snell and Fredda Brown. Published by Pearson. Copyright © 2011 by Pearson Education, Inc. over en masse, lifted him out of his chair. Joe and Leah positioned themselves at the most crucial locations on either side of Ian and slowly—together with the students—began to raise Ian’s supine body with their hands.Now it was Ian’s turn to be nervous. Ian’s spasticity makes it impossible for him to break a fall by throwing out his arms. Several painful crashes have left him with a strong fear of falling at the first sensation of being off balance or awkwardly positioned. Like many folks who experience his kind of physical disability, Ian has a hard time trusting strangers to move the body that he has so little control over. As the students lifted him, he clutched nervously at the only wrist within reach of the one hand he can use, trying to find something to hold onto.His voice anxiously wavered, “Leah, Leah,” seeking reassurance that this was, in fact, a wise course of action. It was pretty scary for Ian and pretty risky for everyone else. But the exercise went well. Months later, when the drama class repeated some of the same trust exercises, Ian greeted the suggestion that he “fly” with an eager response of “Out of chair! Out of chair!” That is how Ian learned to “fly” in his last year of school.The secret was building on his eagerness to be a true member of the class to learn to control his fear of falling. It is a lesson that has served us all well in the ensuing years. We tell this story about “flying” in drama class because it also captures the simultaneous sensations of excitement and anxiety that we experienced as Ian finished high school and launched into adulthood.We were fairly certain that Ian had some mixed feelings as his old routines and familiar settings vanished and new activities and settings took their place.The people in Ian’s social network of formal and informal supports and friendship also recognized the responsibility that enough hands be there to “catch” Ian if he started to fall. As Ian left the relative stability of public school, grounded as it is in legal mandates and cultural familiarity, we worried about the thin air of adulthood where formal support systems seemed to promise little and accomplish even less. Ian turned 40 in September 2009. He lives in his own home, works at a job that he has enjoyed for nearly 20 years, and actively participates in a full schedule of household tasks, social engagements, parties, chores,weekends away, and an occasional longer vacation. He did participate as a member of the cast in a local production of Oklahoma! that was directed by his high school drama teacher as we had hoped. He is supported in his adult life by a network of paid and unpaid persons, a personal support agent who also provides direct support, and our ongoing involvement to ensure that his life is more okay than not okay from his point of view most of the time. Our journey through these years has been difficult, often confusing and frustrating, but also filled with many exciting achievements.We have all learned a good deal about how one young man can negotiate an adult life and the kinds of supports that this requires. Equally important,we have come to meet many other individuals (and their families) who have had similar experiences. Each journey is unique, but also is filled with a common mix of frustration and achievement. Moreover, all those with whom we have met continue to wrestle—to some degree or another—with a similar set of thorny questions. How can a family make sure that an adult-age child’s life is really his life and not one that merely reflects the regulations, individual support plan procedures, agency practices, and other formal services trappings? How do we assure ourselves that our children are somehow authentically contributing to all of the choices that get made about what constitutes a good adult life for them? Over the past two decades or so—since Ian left school—families have helped create new options for a whole generation of people like Ian as they sought answers to these questions. We have also increased our understanding of what it means for someone who has a variety of severe disabilities to be an adult. Exploring the Promise of Adulthood In this chapter,we explore this status of adulthood and how it applies to people with severe disabilities. Our point is not that persons with severe disabilities who are over the age of 18 or 21 are somehow not adults; of course,they are adults.The problem is that our field has not spent enough time thinking through exactly what that means in our culture and era. Adulthood is more than simply a chronological marker that indicates that someone is over a certain age. As important as having a meaningful job or living as independently as possible is, adulthood seems to involve more than this. As one social commentator has framed this distinction, “In many ways, children may always be children and adults may always be adults, but conceptions of ‘childhood’ and ‘adulthood’ are infinitely variable” (Meyrowitz, The Promise of Adulthood 613 ISBN 1-269-33051-9 Instruction of Students with Severe Disabilities, Seventh Edition, by Martha E. Snell and Fredda Brown. Published by Pearson. Copyright © 2011 by Pearson Education, Inc. 614 Chapter 16 1984, p. 25). If it is our responsibility as the teachers and parents of students with severe disabilities to launch them as successfully as possible into adulthood, then it should be worthwhile to reflect on what promises such a role should hold.What is the promise of adulthood for people with severe disabilities? We are not so bold as to think that we can fully answer that question in this chapter. Our efforts here will be to begin a discussion of the issue that we think needs to continue within the field of severe disabilities in general.We will organize our efforts into three main sections: (a) understanding adulthood, (b) denying adulthood, and (c) achieving adulthood. Finally, throughout our discussion, our perspective will be unavoidably personal as well as professional.We will not pretend to be some anonymous and objective scholars writing dispassionately about the abstraction of adulthood for people with severe disabilities.Our son,Ian, is one of those people and he is far from an abstraction to us.We will mention him throughout this chapter to illustrate some points that we make and to explain our perspective better. As mentioned, though, Ian is far from being alone with his story. So by way of comparison, we will also share stories about another young man named Douglas who we have known for more than 20 years, and whose journey as an adult with significant disabilities is both similar to and different from Ian’s. While Douglas has never officially been placed along the autism spectrum, certainly a number of his responses to people and to his environment have raised that type of label as a possibility. For Douglas’s family, it has been a long time since the specific labels have seemed particularly useful or important. For them, Douglas is Douglas. _____ Douglas _____ greets us each time. He seems to be most excited to see Phil—especially now that they wear similar short beards— but we take his enthusiastic greeting as a welcome to us both. Douglas expresses himself clearly, but rarely with words that anyone but his family understands. He has a variety of health problems that have plagued him and his family over the years and he has an attention to order and detail that can be useful, but also annoying to live with. He is, nevertheless, a presence in his home, in his town, and in our memories of each of our summers in this part of Canada. We first met Douglas and his family a little more than 20 years ago when we started teaching each summer in Atlantic Canada at a local university. During the summer of 2009, he turned 38. For three weeks each July, our lives alternate among teaching classes to teachers, exploring the Maritime Provinces, and spending time with friends. Douglas’s mother was a professor at the university and she invited us not only to teach, but to dinner, and through her we met, over the years, not just Douglas but the whole family. After the first year or two, we have come to appreciate as one of the best parts of our visit how Douglas Finally, we will write not only as Ian’s parents or Douglas’s friend, but we also will draw on our own research and that of other professionals and scholars in disability studies to bolster our discussion as well.Such a mixture of the personal and professional perspectives does not only affect us as the writers, it should also affect you as the reader.You should read and respond to this chapter as a discussion of the concept of adulthood in general, but also as it fits (or does not fit) your own personal experiences with persons with severe disabilities. Understanding Adulthood The concept of adulthood is a fluid one that changes from era to era and from culture to culture (Ingstad & Whyte, 1995). For most European cultures, adulthood has a strong individualistic (or egocentric in anthropological terms) emphasis on personal independence and achievement. For many non-Western cultures,however, adulthood has a stronger emphasis on familial and social (or sociocentric) affiliations and connectedness (Klingner, Blanchett, & Harry, 2007; Rueda, Monzó, Shapiro, Gomez, & Blacher, 2005).Within a single culture, the status of adulthood might vary depending on the context. For example, a religious tradition might consider the beginning of adulthood to be at one age (e.g., age 13 in Judaism), while the legal status for the same person comes several years later (e.g., age 18), and the secular status might not be fully achieved until some time after that (say, age 21 or when undergraduate study has been completed). Even within our own American culture, the interpretation of adulthood has always undergone gradual historical shifts, influenced by all of the factors that go into our social profile; demographic trends,economic developments,educational ISBN 1-269-33051-9 Instruction of Students with Severe Disabilities, Seventh Edition, by Martha E. Snell and Fredda Brown. Published by Pearson. Copyright © 2011 by Pearson Education, Inc. The Promise of Adulthood 615 patterns, cultural diversity, and even technology (think about how the availability of the automobile—both front and backseat—has changed the experience of adolescence). A quick historical review may help. The Changing Status of Adulthood The status of adulthood in our society is simple and complex, obvious and obscure. At one level, it is a straightforward matter of age.Anyone who is over the age of 18 (or, for some activities, 21) is an adult, pure and simple. The process is automatic: One achieves adulthood through simple endurance. If you live long enough, you cease being a child and become an adult. In legal terms, one could even be judged incompetent to manage one’s affairs but still remain an adult in this chronological sense. At an equally basic level, adulthood can mean simply a state of biological maturity. In such terms, an adult is someone who has passed through the pubertal stage and is physiologically fully developed. As with the chronological meaning, this biological interpretation also is still common and largely accurate as far as it goes: To be an adult, at least in the physical sense, is to be grown up, mature, fully developed. However, it seems clear to us that the matter has always been more complicated than either chronology or biology (Blatterer, 2007; Kett, 1977; Molgat, 2007; Shanahan, 2000). These factors convey a sense of precision and permanence about the concept that simply ignores the process of social construction by which every culture imbues such terms with meaning (Blatterer, 2007; Ingstad & Whyte, 1995; Kalyanpur & Harry, 1999). Moreover, as Rueda and his colleagues (2005) have pointed out, cultures themselves are seldom homogeneous. So, conceptions of adulthood vary not only across cultures, but also within individual cultures. For example, historically, we know that the beginning age for adulthood has been a surprisingly flexible concept even within the confines of Western culture (Modell, Furstenberg, & Hershberg, 1978). Philippe Aries (1962) has even argued that childhood itself, as a social distinction, was not discovered in Europe until the 16th century. Before then, he argues, children were treated as little more than “miniature adults”—much like they were portrayed in medieval art (Aries, 1962). Adolescence, for example, was reported in a 16thcentury French compilation of “informed opinion” as being the third stage of life, lasting until 28 or even 35 years of age (Aries, 1962). On the other hand, in colonial New England, legal responsibility for one’s personal behavior began at “the age of discretion,” which usually meant 14 to 16 years old (Beales, 1985), and many children left home for their vocational apprenticeships as early as age 10 or 12 (Beales, 1985;Kett, 1977). At the end of the 19th century in Europe and America and continuing today, a period of postadolescent youth emerged where the children of the upper and middle classes (mainly males at first, but now also females) could choose to postpone their adulthood by extending their professional training into their late 20s. The key distinction for this delayed adulthood was the extended status of economic dependency for these college students (e.g.,Wohl, 1979).Taylor (1988) is even more specific:“Physically and psychologically adults, these individuals have not yet committed to those institutions which society defines as adult— namely, work, marriage and family” (p. 649). In many areas of the country, both urban and rural, this extended economic dependency continues to shape the cultural expectations of a successful transition to adulthood (Furstenberg, Cook, Eccles, Elder, & Sameroff, 1999;Magnussen,1997). Most social historians seem to agree that after a period of compression and inflexibility in the decades following World War II, the “acceptable” time span for transition from childhood to adulthood has become a mosaic of psychological and sociological variations (Arnett & Tanner, 2006; Blatterer, 2007; Modell et al., 1978). The National Academy of Sciences has postponed the end of adolescence to age 30 in today’s United States (cited in Danesi,2003,pp.103–104).If there ever was one,there is no longer a “standard” adulthood (Blatterer, 2007). What remains is a curious interaction of fixed periods of institutional transitions (e.g., graduation, voting, legal status) with fluid patterns of social and structural change (e.g., economic separation, living apart from parents, sexual activity, postsecondary education) (Blatterer, 2007; Molgat, 2007). As America grows more diverse, it seems likely that the traditional cultural markers of adulthood will only become more problematic and situational (Molgat, 2007). Kalyanpur and Harry (1999), for example, point out that for many non-Anglo families,“it is assumed that the son will continue to live in the parents’ home, regardless of economic or marital status, and that the daughter will leave after marriage only to move in with her husband’s family”(p. 106). Rueda et al. (2005), in a study of Latina mothers of transition-age sons and daughters, found that “the notion of having one’s young adult go ISBN 1-269-33051-9 Instruction of Students with Severe Disabilities, Seventh Edition, by Martha E. Snell and Fredda Brown. Published by Pearson. Copyright © 2011 by Pearson Education, Inc. 616 Chapter 16 off on his or her own was not part of the mindset of these mothers, irrespective of whether a developmental disability was involved” (p. 406). At the same time, many children from poor families feel early pressure to contribute to the economic survival of the family and their own material well-being. In many aspects of social life, teenagers engage in “adult” behavior at earlier and earlier ages (Furstenberg et al., 1999). Given this cultural and historical variability, how might we elaborate on an understanding of adulthood that goes beyond age? How can we describe the social and cultural dimensions of adulthood? Finally, how do these social and cultural dimensions affect the experiences and opportunities of persons with severe disabilities? We will address these questions by examining some of the dimensions of adulthood and their symbolic significance. The Dimensions of Adulthood As Ian’s parents, we naturally thought that it was important that Ian graduate from high school. More to the point, however, we felt that it was extremely important that he participate as fully as possible in his high school’s commencement exercises.The graduation ritual itself seemed crucial to us. It took planning, coordination, cooperation, and compromise by a number of people to make that participation happen, but happen it did, as the picture of Ian in his cap and gown shows (Figure 16–1). Now, while Ian certainly enjoyed his graduation (especially the part where people applauded as he crossed the stage), we don’t know if he fully appreciated all of the cultural symbolism attached to such events by many of the other participants. Missing the graduation ceremony would not have lessened the skills that Ian had learned in high school, threatened the friendships he had forged, or worsened his prospects for a smooth transition from school to work. In other words, the importance of Ian’s participation in commencement was largely symbolic. It symbolized for us many of the same things that a son or daughter’s graduation from high school symbolizes for most parents.We’ll have more to say about Douglas’s graduation later, but like Ian, his family valued the importance of his participation and for many of the same reasons. Few events are as loaded with symbolism as a graduation ceremony. It is perhaps the closest that our particular society comes to a formal rite of passage from childhood to adulthood. Of course, other societies and traditions might have other symbols that are equally powerful that do not include anything related to ceremonies about finishing schooling. Much of what we are trying to capture in an understanding of adulthood occurs at this symbolic level of meaning. There are three important dimensions to this symbolic understanding as shown in Table 16–1. The Dimension of Autonomy Perhaps the most familiar and common symbols of adulthood in our society are those that convey a sense of personal autonomy.This dimension emphasizes the status of adulthood as an outcome or a completion. It is the achieving of adulthood that is the main focus; what happens throughout the adult years in terms of learning and growth or the physical changes that accompany aging are less the point. More specific features of autonomy can be seen in several aspects of life commonly associated with adulthood. Self-Sufficiency. One of the most often cited features of adulthood is an expectation of self-sufficiency. At the FIGURE 16–1 Ian at His High School Graduation Ceremony ISBN 1-269-33051-9 Instruction of Students with Severe Disabilities, Seventh Edition, by Martha E. Snell and Fredda Brown. Published by Pearson. Copyright © 2011 by Pearson Education, Inc. The Promise of Adulthood 617 most fundamental level, this usually means economic self-sufficiency. Whether by employment, inherited wealth, or social subsidy, adulthood entails the belief that one has the resources to take care of oneself. This sense of self-sufficiency entails a transition from a primary existence of economic consumption and dependency to one of rough balance between consumption and production.Theoretically, even our welfare system works to preserve and enhance the self-sufficiency of individuals by providing temporary support and training. However, self-sufficiency goes beyond this economic sense to also include elements of emotional adequacy. Adulthood usually brings the sense of having the emotional and economic resources to “make it on one’s own.”People who whine about trivial complaints are often told to “grow up” or “quit acting like a baby.” Moreover, there are important gender differences in how our culture portrays emotional maturity. Still, in some sense or another, emotional competence in the face of life’s adversities is presented as an expectation for adults. Last year, Ian earned about $4,000 in his job at the university.This annual income has varied over time from a high of $4,500 to a low of $3,000 as his responsibilities changed, as supervisors changed, and as other parts of his life took precedence.While this job and these earnings are important to his life as an adult, they do not begin to cover his living expenses, to say nothing of his recreational expenses. Even with the social services support dollars made available to him, the life that he is creating for himself exceeds his available economic resources too much of the time. However, Ian has a job and social services dollars to support his efforts. Many persons with severe disabilities have no such support, or what they do have is woefully inadequate.Poverty and disability have a long history, and self-sufficiency and poverty are incompatible. One of the ongoing frustrations for Douglas and his family is that his employment has been episodic, with sometimes long periods of unemployment. In the last few years, for example, he has worked alongside a local man named John, who involves him in his jobs and activities around town, although without pay. But currently, he is again unemployed because John and a friend started up a new restaurant in a nearby town. Once the restaurant is operating smoothly, Douglas will join the team to assist with kitchen cleanup, stocking, and the other critical chores that are required for a small business.However, even then, the prospects are that this will also be on an unpaid basis for the foreseeable future. Self-Determination. Self-determination and selfsufficiency are often treated as synonymous features of adulthood. However, while recognizing that the TABLE 16–1 The Dimensions of Adulthood Autonomy: Being your own person, expressed through the symbols of Self-sufficiency: Especially economic self-sufficiency, or having the resources to take care of oneself.