Posted: December 10th, 2014

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.