Psy5130 Week 2 Assignment
O R I G I N A L P A P E R
Systems Theory and the Development of Sexual Identity for Individuals with Intellectual/Developmental Disability
Amy Swango-Wilson
Published online: 12 June 2010 � Springer Science+Business Media, LLC 2010
Abstract The purpose of this paper is to examine social systems theory as it relates to the inclusion of disenfranchised populations into the larger social system by enabling these
populations to receive education and resources which can allow them to develop skills
needed to achieve inclusion. Specifically this study is concerned with using elements of
social systems theory to develop a sexual education program for a population identified
with an Intellectually/Developmentally Disability (ID/DD). In order to do this, it is nec-
essary to work within the family or caregiver system where these individuals live and
function. Caregivers must be helped to recognize the potential for inclusion in this area of
life for this population, and educational tools appropriate to the developmental and cog-
nitive levels of the participants must be made available. Acknowledgment of the indi-
vidual’s role within the system and understanding of the individual’s experience of that
systems interaction with the environment and with other systems is primary in developing
effective programming which can increase the quality of the participants’ interactions and
relationships, making life a more productive and more satisfying experience.
Keywords Systems theory � Intellectual disability � Developmental disability, sexuality
Introduction
Systems theory addresses the equity of value of all participants within a system. This is not
always easily apparent to outside observers, or even at times to those within the system.
Inequities appear based on ability and hierarchically assigned power; however, as systems
grow and change these inequities often prove to be temporary and fluid. In the task of
maintaining a sense of order within the system, every role has its value, and the loss of one
whose role may have seemed of lesser value can have as great an impact on the total
system as the loss of one whose role had seemed of more value. Even in the midst of chaos
A. Swango-Wilson (&) College of Nursing, East Tennessee State University, Johnson City, TN, USA e-mail: wilsonal@etsu.edu
123
Sex Disabil (2010) 28:157–164 DOI 10.1007/s11195-010-9167-3
and dysfunction, the balance and order that living systems strive to maintain is dependent
upon every participant playing their part [1].
Persons with intellectual and/or developmental disabilities (ID/DD) have the same
rights and needs for access to comprehensive health care programs, including sexual
health, as others within the population. Unfortunately, many of these individuals are
viewed by others within the system as being perpetually child-like, and this image results
in the denial of opportunities to learn the skills needed to make informed choices regarding
sexuality. The result is often an increased vulnerability to abuse and/or assault [2].
These individuals are often dependent on caretakers (frequently parents or other family
members) for meeting their daily needs. Because this is true, and because these caretakers
often have difficulty coping with the striving by these individuals for greater independence,
it becomes essential that the caregiver/family member be included in the effort to develop
programming to assist these individuals in dealing with relationship issues as well as in
other aspects of training. The more the caretaker/family member is able to understand and
accept the individual’s efforts and needs, the more likely they are to support the individual
appropriately in their efforts. For this reason, any programming developed to assist the
individual with ID/DD to take a greater part in social interactions must include an initial
component for training the caregiver/family member to better understand the need and the
ability of these individuals.
Study of Literature
Hierarchies are necessary within systems to maintain order. Ideally these hierarchies exist
with an understanding of the equity of the total system, and function to maintain order
while still respecting value and encouraging growth, allowing participants to rise within the
hierarchy as development of abilities and knowledge increases. This is not, however,
always the case. There are abuses of power within some systems, resulting in biases which
prevent the acknowledgment of personal value for many within the system [1].
Reynolds et al. [3] address concerns related to stereotyping and its effect on the ability
of individuals within a system to achieve appropriate levels of power. The link between
stereotyping and power suggests that ‘‘stereotyping is an instrument wielded primarily by
the powerful in a way that furthers their interests to the detriment of the powerless’’
(p. 275). Impressions of others, if they are to be valid, take time and effort. For many, the
time and energy required to make this effort are for whatever reason determined to be too
great a demand, and these individuals chose to rely on social categories to make stereo-
typical judgments of others. ‘‘It should follow that the desire to be accurate should
encourage attentional investment…and the desire to be accurate has been linked with interdependence’’ (p. 275). Studies have tested the prediction that interdependence brings a
need for prediction and control, resulting in interdependent individuals that will care more
about accuracy and less in the stereotype (p. 275). The authors found that for individuals
existing in systems with open boundaries, accuracy in impression of other was more highly
valued, while those existing in closed systems tended to rely more on stereotyping and are
less willing to invest the time and attention to view others more accurately. In addition,
those in open group systems tended to view others from outside the group in a favorable
light based on higher status group members’ views. It is suggested that ‘‘whether power
reduction of power enlargement occurs within an organization depends on the way the
relationship between groups is defined—either intergroup (us vs. them) or intragroup (‘‘we
are all in this together’’). The powerless and powerful may judge the social context and
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group relations differently depending on their group interests, goals, and motivations’’
(p. 286).
Bernik [4] considers the limitations placed on the political systems established within
the larger society to regulate such concerns. These systems are often expected to regulate
the separate smaller systems that make up the larger society, but are ineffective in doing so
due in great part to the inherent limitations, leading to disenchantment rooted in ongoing
change in political rules and the inability to live up to the growing needs of changing
societies. ‘‘The emergence of a polycentric society, i.e., of a society composed of highly
autonomous but nevertheless interdependent functional subsystems, is a long evolutionary
process. It means that the political system as a risk-absorbing center of society will long be
exposed to demands which largely exceed its regulative potential. The task of moderating
the contradictions of societal transformation, which is ascribed to the political system,
could intensify contradictions and instabilities in the political system’’ (p. 354). Certainly
evidence of this limitation to regulate systems can be seen in efforts to legislate against
discrimination, which, while effective to some degree in the public sector, has not elim-
inated the inequities faced by those groups who are the victims of discrimination.
Colomy [5] collected works also examining the political structure of social systems as
they affect the integration of parts into the whole of society, and often demonstrating the
same limitations in the ability to do this. In fact there is evidence that the power structure
inherent in political systems is often too open to abuses and may only change the language
with which the system refers to its discriminatory practices, while supporting ongoing
abuses in power and ongoing inequality within the larger social structure. The use of media
to reach the masses with political messages is one example of the political systems
inconsistency in providing needed understanding of policy. ‘‘Articulation of televised
political campaigning with the traditional concept of the body politic would require
institutions that allow the public to test the claims of those who would use the media to
create influence; authentic two-sided debate’’ (p. 211).
Certainly stereotyping has been a barrier for many individuals identified as being in the
disabled population within the social context. Michailakis [6] argues that disability is a
function of perspective as drawn from the specific systems view from which one observes
the disability. ‘‘The particular ways in which social systems observe and communicate
about disability determines exactly its meaning in the different systems, how the group is
treated and the problems they face. Just like archaic societies, organized into segments;
families, clans and tribes, the structure of stratified societies—that is societies structured in
hierarchical layers—is governed by the principle of placing people in different groups; in
this case in different layers. In segmental as well as hierarchical societies, the relationship
between society and the individual is determined by total inclusion. Individuality and
social position are identical. Belonging to a tribe, family, corporation, or estate encom-
passes all aspects of an individual. Now the central thesis of systems theory is that, with the
formation of functionally differentiated society, the very principle of social differentia-
tion—placing individuals in families or social layers—has become obsolete; it is no longer
groups of people that are distinguished but types of communication’’ (p. 220).
In the differentiation of groups, Michailakis [6] argues, the demand for inclusion
implied a need for new ways to communicate regarding the social problems represented by
those with disabilities. He says that social change has led to the identification of certain
persons as disabled who once would have had no such label. This relates in large part to the
social distinctions made with the rise of capitalist society and its demands for ‘‘work
ability,’’ leading to the labeling as disabled of those unable to perform demanded work
tasks in the age of technological labor.
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A phenomenon that has been observed repeatedly in studies of discrimination within
systems is the passivity of victims of discrimination in the face of inequality. Louis and
Taylor [7] studied this phenomenon, specifically focusing on the apparent individual
response patterns of these victims. The study started with observations that individuals
experiencing discrimination often avoided group support in dealing with issues of dis-
crimination, choosing instead to deal individually and usually ineffectively with these
issues as they arose. Their conclusions suggested that individual response grew out of the
expectation of individualism, especially as it is presented in the United States. It also was
suggested that many times failure to participate in collective efforts to deal with dis-
crimination was the result of limited leadership and lack of clear group goals.
Certainly the group in which participants initially find support and validation is
expected to be the family system. Support is a primary function of any group, especially
the effective family group. Dunst et al. [8] address the effects of family on adolescents,
specifically pregnant teenagers. The study looks at the effects of stress in crisis on the
health and wellbeing of the pregnant teen, and the role social support plays in providing a
buffer against extreme stress. Results of the study demonstrated that ‘‘(a) psychological
well-being and family climate during the teenager’s pregnancies; and (b) birth related
problems, mode of delivery, emotional and physical well-being, and commitment to the
care of their children after delivery, were related to a number of interpersonal, family-
related, and extra family (support) characteristics’’ (p. 45).
After the family, the community is the basic structure of the social system in this
country. When the community is functioning properly, the education, socialization and
health of its residents will be enhanced. Because this is true, it is imperative that com-
munity leaders evaluate their communities and plan for needs provision [9].
Reicherter and Billek-Sawhney [9] addressed the needs of older individuals, another
segment of the population often disenfranchised due to age related issues including health,
financial limitations, etc. These issues can often lead to the loss of familiar home place-
ments, as well as increasing isolation within the community. ‘‘Retirement communities,
assisted living, and nursing homes are frequently designed to accommodate the special
social and physical needs of the older population. However, for the older adult with
advancing medical needs, these unfamiliar surroundings and frequent displacements can be
very unsettling and detrimental to their health’’ (p. 300). Continuum of care communities
as addressed in the article discussed here make an effort to create a viable community for
these individuals, providing resources to assure the meeting of needs while encouraging an
ongoing social interaction to maintain the synergy of the community through individual
connection.
Norlin and Chess [10] address the need of the caretaker to understand the systems and
subsystems within which client participants exist, as well as the suprasystem or environ-
ment in which the systems exist. In order to effectively meet the needs of the individual, a
grasp of the system is essential. ‘‘Many of today’s problems are so massive and so
destabilizing to society that intervention at any one level is insufficient, for example, the
rising tide of violence. Intervention is required at all levels—the individual, group, family,
organization, community, and the society itself’’ (p. 347). Intervening at only one level will
fail to meet the participant’s needs, as support in one level may be met with discrimination
or opposition in another which will negate any positive effects from the limited support. It
is essential for caregivers and other professionals who work with the disabled and other
disenfranchised groups work with these people by relating to their systems as a whole and
acknowledging the importance of those systems and subsystems to the integrity of the
individual if any work done is to be truly effective.
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The primary human need met by the system is that of belonging. Affiliation with a
system is the method by which this need is met. Affiliation may be compulsory, through
kinship or citizenship, or they may be voluntary, as in marriage, membership or ownership.
Four main types of systems one affiliates with are family, state, voluntary organizations,
and business enterprises. Ahrne [11] examines how the same action may take on different
meanings and levels of importance when enacted in different subsystems.
Discussion
Systems theory is applicable to almost every aspect of human experience, from family to
political party to national identity, with a vast number of systems falling in between these
systems. Affiliation with a system provides identity and validation. It says that the indi-
vidual is capable of performing the tasks required to maintain affiliation with that system.
But what of those individuals who cannot perform as expected to establish and maintain
affiliation with societally valued systems? What allows them to find belonging, one of the
basic human needs? What gives them a sense of self-worth and validation as human
beings? What type of value system can they be expected to adopt when they are denied
access to the source of support and training considered a right by the majority?
Those within the population who are labeled as developmentally or intellectually dis-
abled are often separated from the mainstream population, maintained within the primary
family or perhaps placed in institutional settings. In either case, it is likely that the ‘‘dis-
abled’’ individual will be further disabled by denial of access to the flow of information and
communication common to the general public within the larger social system. Marked as
less capable, these individuals are denied control in their own lives and are assumed to be
in need of constant management by caregivers and other professionals. While it is true that
these individuals may require a larger amount of support to function adequately, this
should not be seen as a reason to assume they are not capable of functioning. If, instead of
maintaining them at a minimal level of functioning, the caregiver or professional involved
in their lives can provide appropriate stimulation and training to help them increase their
functioning ability, they are often able to achieve far more than had initially been expected.
Determination of what can be achieved by the individual with disability is in large part a
function of systems expectations and values. What is presented as a worthy undertaking by
the family of origin is likely to become the perceived reality of what is worth working
toward. While the individual with a disability may take additional effort and training, such
effort is more likely to seem worth making if the family system is supportive and finds a
means of providing the additional supports needed.
This was a primary consideration when this author began working on developing a
program in sexuality education for individuals with ID/DD. The reason for considering
such a program is twofold. Lack of understanding about sexuality, both by the individual
and caretakers of that individual, can prevent the fulfilling participation in a primary aspect
of human life, that of intimacy within a relationship. In addition, lack of adequate edu-
cation in sexual mores frequently results in incidents of sexual abuse, and indeed the rate of
sexual abuse and assault perpetrated against this population is significantly higher than
among the ‘‘normal’’ population [2]. The response to this victimization tends to be different
based of gender. Women among the group identified as being disabled tend to respond with
a somewhat passive, accepting attitude reflective of their lower degree of power within the
abusive relationship. They often assume the abuse is normal, and when they object they
tend to be discouraged from speaking about the subject. Because of their place on the
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power structure within their system, they usually comply with abuser demands to ‘‘keep
quiet.’’ Male victims, on the other hand, are more likely to imitate the abusive behavior and
victimize others. Often when these men are reported to be involved in perpetration of
sexual offenses, their status as disabled individuals prevents them from being convicted.
The result of both scenarios (male and female) tends to be the repetition of sexual
aggression as no intervention to change the understanding of the individual is likely to take
place. It is important to note that in both scenarios, the individuals involved often assume
that sexual aggression is a normal behavior based on their experience within their
respective systems [2, 12–16].
Because there is a difference in ability and learning style between individuals with ID/
DD individual and other members of the population, efforts to educate these individuals
must be designed to meet the comprehension needs of those involved and should include
techniques of teaching likely to anchor concepts in their consciousness in a manner ade-
quate to allow retention and assimilation. It is, however, first imperative that those within
the individual’s system, who are most influential, including primarily parents and other
caregivers, be educated in the needs and abilities of the cared for individual in the area of
sexuality. Because these caretakers often think of their disabled family member or
dependent as being child like and removed from thoughts of sexuality, it becomes nec-
essary for them to better understand the reality of sexual development as it truly affects
most of these disabled individuals. Their refusal to accept this or to support the person with
disability in the effort to develop improved sexual understanding can sabotage any effort to
aid the individual, as the influence of the caretaker may well be so much a pert of the
individual’s internal acceptance system that it cannot be over-ridden. Because such abuses
of power, often done in the belief that ‘‘it’s for the best,’’ are common among disen-
franchised sections of the population such as the ID/DD, winning over the power structure
as embodied in the caretaker becomes imperative if change is to be accomplished [2].
Anderson et al. [1] explain this power relationship thusly: ‘‘A has power over B to the
extent that he can get B to do something B would not otherwise do…A’s power over B is (a) directly proportional to the importance B places on the goals medicated by A, and (b)
inversely proportional to the availability of these goals outside the A–B relation…Such power is based on ‘manipulating rewards and punishments important to the other person’’
(p. 126). In the relationship between the individual with ID/DD and the caretaker, the
caretaker’s goals are usually related to maintenance of a protective environment which
often separates the individual with a disability from the larger social system. This goal
often precludes goals the individual with a disability might desire, but because the rejection
of the caregiver goal could lead to loss of not only belonging, but even more basic survival
needs related to safety and survival, the individual with ID/DD may be trapped in the
caregiver’s preferred setting. Isolating the individual with ID/DD away from the larger
system and the environment in which that system functions is the ultimate consequence if
the caregiver cannot be convinced of the benefits of opening the system to allow new
experiences. For these reason educational opportunities, including education in sexuality
must be presented in a non-threatening and rational manner to the caregiver. If the care-
giver can see such programming as beneficial to the cared for individual, he or she is more
likely to accept that individual’s participation, thus allowing an opening for the disabled
individual to reach through the limiting boundaries of his or her system to explore and
experience suprasystem in previously denied ways. If supplied with the right support and
informational tools, this expanding into the environment should be a freeing and positive
experience not only for the individual with ID/DD, but also for the caretaker who had
initially reinforced closing those boundaries.
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Having moved into newer experiential territory, the individual with ID/DD needs to be
supported in learning the decision making skills which will enable them to establish new
relationships, including sexual relationships. Currently community involvement for this
population often means placement in group homes or work in sheltered workshops. This
practice again limits experience, placing the population identified with ID/DD in smaller
communities composed mainly of others with similar disabilities. While this allows them
to cultivate relationships with others of shared experience, it denies them access to
experiences shared by the mainstream population. This separation from the mainstream can
reinforce the sense of devaluation among populations identified with disabilities and is
accompanied by feelings of isolation and loneliness [2].
Inclusion in the larger population is important for this group, and part of learning to
belong to a social group is learning to understand expectations about behaviors. For the
individual with ID/DD, sexual behavior is often an obstacle to inclusion in mainstream
social systems. The solution to this is exposure to those who model accepted behaviors, as
this population tends to learn best through viewing appropriate behavioral models, then
being encouraged to practice appropriate behaviors in the learning setting. This often
means pointing out inappropriate behaviors, explaining how these behaviors create
alienation or other negative consequences, demonstrating more acceptable behaviors, then
allowing opportunity to practice those behaviors. This includes sexually suggestive com-
ments, boundary intrusion, and other common public behaviors which often result in
rejection by mainstream society [2].
Another aspect of sexuality education important for this group is the opportunity to ask
questions about concerns and receive honest answers. Often this requires an initial offering
of information as many may not know what questions to ask initially. The concerns about
how to meet people, how to date, and how to introduce new people to those in the
individual’s primary support system are as important, as questions about birth control and
sexually transmitted disease to many of these individuals. All are valid aspects of devel-
oping intimate relationships and allowing the individual to feel that they are developing
some control over their life experiences. All need to be answered honestly and with equal
respect for the desire to know [2].
Individuals identified as having ID/DD share the right to sexual freedoms enjoyed by
the mainstream populace, including the right to be informed about sexuality, the right to
enjoy sexual activity (assuming the capacity to give consent is present), the right to
contraceptive access and use, the right to information on sexually transmitted diseases and
related preventative measures, the right to form sexual relationships and marry (again
assuming ability to consent), the right to parenthood, and the right to be protected from
sexual abuse [2]. These rights can help the individual feel a greater sense of inclusion in the
social system and a greater sense of self as fully human. In determining the ability to
consent as used above, one should be able to make choices based on knowledge, com-
municate willingness to participate in the action involved, and be free from coercion of
those with greater power.
The majority of sexuality education programs currently in existence have been devel-
oped with no input from individuals with ID/DD. Failure to seek input from those whose
lives will be affected by this programming results in limited understanding of self-per-
ceived needs and so limited responsiveness to those needs. To develop a truly effective
program it is necessary to have a free flow of communication between information pro-
vider and the individual seeking knowledge. While there is a tendency, and justifiably so,
to assume the provider has a greater fund of information to contribute in a learning
situation, it is an abuse of power to assume that the recipient of this knowledge has nothing
Sex Disabil (2010) 28:157–164 163
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to contribute in turn. Indeed, by seeking information from the students regarding their
perception of needed information, one is more likely to gain a commitment to the process.
At the same time, the individual seeking knowledge begins to feel an affiliation to the
process and so begins the establishment of ties to this new system of learning.
All humans need to feel they belong. All humans want to know they are heard. Seeking
input from those with the greatest need about their perception of their needs seems only a
logical and natural approach to entering into an educational relationship. Engaging the total
system, especially when that system retains significant power over the individual involved,
is a logical step in assuring the highest quality of interaction for the individual participant.
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