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Mr. Miller is currently Educational Supervisor
at the Perkins School for the Blind in Watertown, Massachusetts. He has
worked in the field of deafblindness and blindness for the past 25 years.
He continues to develop and implement social/sex education programs and
to consult and lecture both nationally and internationally on this topic.
"DREAM FADES AWAY": sex among clients controversy leads to closing of group home for mentally handicapped. "I am convinced that it is not a question of IF our child should have sex, but WHEN and WHERE. And we must accept the fact that sexuality education cannot be too early-- but it can be too late." (Betty Pendler, special needs parent and advocate)
The above newspaper headlines and quotes point to the ongoing controversy in social/sex education among families of children with and without disabilities. It is a topic which is both personal and highly public and which throughout the history of both regular and special education has been viewed as a subject of top priority and then subsequently ignored. It is a topic overladen with emotion and a diversity of personal and cultural values, and especially in the area of disability education, ignored until a crisis or problem erupts.
In the early 1970s, a great deal of awareness
and activity occurred regarding the social/sexual rights of people with
disabilities. A variety of curriculums, articles, workshops, and policies
were developed to address the needs of both students and adults with single
or multiple disabilities. Unfortunately due to a variety of factors, the
intensity of these efforts gradually waned and social/sex education for
the disabled continues to this day to be a severely underdeveloped component
of both school and community living programs. All too often, social/sex
"education" occurs only on an informal and reactive level, i.e. as a response
to a student crisis. The purpose of this presentation will be to offer
a concrete and "proactive" approach to addressing the social/sexual issues
of children and young adults with visual impairments.
Why does the child or young adult with visual impairments often make significant strides in the structured activities of self-help skills or prevocational training, and then demonstrate such severe social deficits as the lack of initiative, the inability to structure his/her own free time, poor decision-making skills, or the inability to form social relationships? What are some of the factors which lie at the root of this issue? This lack of social-emotional development seems to stem from the interplay of many factors which can not be truly isolated from one another. The purpose of this overview, however, will be to reflect upon some of the causes of this social lag and to illustrate the role of both staff and parents in remediation of social/sexual learning deficits.
Social/sex education individuals with visual impairments, indeed for all children and youth, is a life long learning task which needs to be addressed from infancy onward. The basic premise of this presentation is that the child or young adult with visual impairments, at any level of functioning, has both social/sexual rights and responsibilities and that both staff and parents have a responsibility to educate and create environments which allows these individuals to develop to their fullest potential. The information which will be presented covers a broad range of functioning levels and has been used successfully with children and young adults with visual impairments. The approaches and information also recognize the diversity of cultural and ethical opinions on social/sex education, but experience with their use has again shown them to be adaptable to a diverse set of values and across a wide range of individuals.
Since there has been very little written in the area of social/sex education for persons with visual impairments, this presentation offers a compilation of some of the successful interventions used with children and youth with visual impairments over the past 15 years. These approaches have been adapted from literature related to both individuals with and without disabilities. The following provides an outline of topics which will be covered in this presentation:
WHAT ARE SOME ASPECTS TO CONSIDER IN SOCIAL/SEX
EDUCATION FOR INDIVIDUALS WITH DISABILITIES?
OURSELVES AND SOCIETY
In order to understand issues in social/sex education for children and young adults with visual impairments, we need to briefly look at the topic of sex education in general. The primary issue is dealing with the topic of "sexuality" and not just for the disabled. Social/sex education is a controversial topic, for each of us and society in general. Just pick up the papers, watch television or videos, listen to music on the radio, and we are bombarded with images of social expectations and sexual images of who we are supposed to be or at least what certain segments of society believe we should be. Based upon these images and considering the sample opening statements to this presentation on curriculums within public schools, stereotypes and misconceptions, it is apparent that a great deal of social confusion exists relative within the area of social/sex education as to what is to be taught, who is to teach it, and how it is to be taught. In general, unfortunately, among children and youth with and without disabilities social/sex education, if it occurs at all, occurs in a "reactive" mode. All too often the result is non-teaching or ignoring the topic until it becomes a crisis, often prefaced by adults in the situation with a giant "OH NO!!!". The crisis is generally handled in a negative manner through suspension, punishment, or the "just say no" approach with little emphasis on constructive learning or enabling the child to better understand and problem solve in the future. As adults and caregivers, however, particularly in the area of social/sex education, we have to begin to realize that ignoring or not addressing this issue creates a situation where children and youth with or without disabilities are left to fumble along to interpret and form values and impressions relative to social/sexual lifestyles and relationships without guidance or input.
Although in dealing with social/sexual issues, we can never totally overcome the feeling of "oh no", we can approach the topic of sexuality for the disabled in a proactive manner, that is trying to consciously teach and address social/sexual issues throughout the individual's lifespan. Utilizing a proactive approach places an emphasis on education and intervention which views social/sexual experiences for children and youth with or without disabilities as "opportunities" for learning, signs of growing up, and as a stepping stone to further develop decision making skills to the best of the person's individual abilities.
Essential to deciding upon our actions in dealing with social/sex education for children and youth with visual impairments is developing a level of self-knowledge and awareness of our own feelings and attitudes toward social/sexual topics both for ourselves and for the disabled. Beyond a greater emphasis on developmental play and social tasks during early childhood, the first step in social/sex education of children and youth with visual impairments is staff/parent attitude and values clarification and education. Given the confusion that exists concerning social/sex education among individuals without disabilities, the exploration by staff and parents of both their personal social/sexual values and their ability to deal with this topic becomes of primary importance. Through workshops and by making resources available which deal with both attitudinal and informational topics regarding social/sexual development and people with disabilities, both parents and staff can be aided in identifying and clarifying their personal values.
In order to begin to provide social/sexual education to children and young adults with visual impairments, we need to reflect upon our attitudes toward sexuality, our level of accurate knowledge regarding sexuality, and even more importantly our attitudes, feelings and beliefs regarding sexuality for people with disabilities. We need to examine our feelings regarding the rights and responsibilities of individuals with visual impairments in the areas of sexual expression, privacy, access to information and services, the ability to choose relationships and living arrangements, and in general to make decisions which affect their social/sexual lives and allow them to develop to their fullest potential. (Gordon, 1974)
Do we hold any of the myths regarding sexuality and the disabled for example that they are asexual; oversexed; dependent and childlike; a threat to others in the community? (Chipouras, 1979) Do we react to the idea of sexuality and the need for social/sex education for the disabled with disbelief; revulsion; avoidance; suppression; or active encouragement? (Chipouras, 1979)
The first step toward a social/sex education program for people with visual impairments is the realization that the person with a disability, whether it is blindness, deafness, cerebral palsy or multiple handicaps, does not by virtue or his/her disability cease to be a social/sexual being. It is coming to the realization through self reflection and seeking out accurate information that it is most often our misconceptions about sexuality and disability that hinders not only our ability to view the disabled as social/sexual beings, but even more stifles their development of appropriate social/sexual expression, self-concept, and the motivation to live as independently as possible. (Chipouras, 1979) It is achieving the realization that just as our own social/sexual attitudes and behaviors are shaped or distorted by our daily interaction with others, the media, and experiences, the person with disabilities, no matter the type or degree of infirmity is daily being molded and affected as to his or her social/sexual development by the social attitudes and interactions with the people in his or her social situation. Finally, it is achieving the realization that the loss of incidental learning through the senses of vision and hearing for the individual with visual impairments makes it even more imperative for us to intervene and interpret life experiences and to provide access to information to allow them to achieve social/sexual independence to their fullest potential.
The development of a social/sex education
program for children and youth with visual impairments begins with the
belief that the children and youth with visual impairments have the same
basic social/sexual rights and responsibilities as we do. It begins with
expanding the definition of "sex" beyond the "act" to the realization that
: " Sexuality can be defined as the integration of the physical, emotional,
intellectual and social aspects of an individual's personality which express
maleness and femaleness." (Chipouras,1979) Sexuality refers not just to
body parts or the "physical aspects of sexual expression," but to the total
person, the individual, and the full range of his/her social values, social
relationships, and awareness and performance of social responsibilities.
Social/sexual development is not limited to the home or classroom, but
is totally integrated into our daily existence." (Chipouras, 1979)
THE INDIVIDUAL WITH VISUAL IMPAIRMENTS
Since social/sexual development is an ongoing process, it is necessary to consider some of the early childhood factors which might hinder the progression of the social/sexual learning for the individual with visual impairments with or without additional disabilities.
Unlike a child without disabilities, who is able, beginning at birth, to receive and respond to physical, verbal, and social stimulation from his environment and those around him, the child with visual impairments begins life in a state of sensory deprivation. The nature and extent of the child's impairment of near and far senses imposes upon him or her varying degrees of social isolation. For the child with visual impairments, the loss of auditory social language and full visual interaction with the environment creates severe limits on the child's early mobility, directed exploration of his world, and, most importantly, vicarious social learning input.
The child with visual impairments very often lacks contact with other children, and quite often both parents and staff are confused as to how to best stimulate or interact with the child beyond basic needs fulfillment. Basic developmental interaction patterns such as meaningfully playing with or seeking out objects, playing with parents, imitative play, and cooperative play with others are therefore often limited experiences for the child. Sensory impairments decrease exposure to the repeated social/sexual experiences which sighted children and youth visually experience throughout their day. Opportunities to observe parent to parent hugs or affection, the use of simple phrases of politeness, expressions of emotion, flirtatious behaviors and/or body language cues, verbal innuendoes, moments shared between best friends, variations in styles of dress, etc., all taken for granted by individuals with vision and hearing, are all too often inaccessible to the child with visual impairments and thus leads to a cumulative deprivation in the area of social/sexual learning. As a result, the child with visual impairments often builds his/her own little world and finds satisfaction in self-stimulating behaviors.
What happens when this socially and emotionally underdeveloped person enters adolescence? The adolescent with visual impairments must not only puzzle out the physical changes of this period, but he or she must also deal with its new social demands. Because of physical growth and often adequate development in other areas of learning, the adolescent with visual impairments is suddenly confronted with efforts to adapt his or her social behaviors to age-appropriate guidelines within specific contexts (e.g.: the work or home). Some behaviors, for example hugging or being physical with staff, are no longer viewed as cute or appropriate and become instead "problem" behaviors in need of modification.
During this period, the individual with visual impairments often remains in a state of social isolation relative to peer interaction. Because of the unique modes of communication used by learners with visual impairments or the limited ability to acquire language, an inability to express feelings and emotions may exist, and often result in frustration and acting out behaviors. The school or work site with its emphasis on structure may foster further frustration and/or continued compliance or rigidity, without offering opportunities for making choices or moving toward greater personal growth. Even the student's leisure time may continue to be so programmed that opportunities for spontaneous social interaction and initiative may be hindered. Finally, a lack of role models within the living situation and/or a lack of awareness on the part of staff or parents as to how to observe and foster social and sexual development may further impede movement toward social-emotional maturity.
Development of these social/sexual skills and behaviors are essential for integration into society and for enabling children and youth with visual impairments to achieve and develop social relationships to their fullest potential. Our role as parents and professional becomes one of mediators or facilitators. We need to help bring the realities of social/sexual experiences into focus for the individual with visual impairments and to expose and interpret the multitude of social/sexual cues which are lost given decreased sensory awareness. Ideally our role will be one of partnership where school and parents alike work together to develop the social/sexual skills ESSENTIAL to the lifetime success of children and youth with visual impairments at every level of functioning. To do this requires openness and a willingness to work together to look at the realities of life which children and youth with visual impairments will face in the REAL WORLD and to identify the resources and/or how each of us will personally bring them this essential knowledge. Since social/sex education is really an ongoing process which occurs whenever staff or parents and students interact, the implementation of a social/sex education program requires each of us to identify, particularly in the area of sexuality issues, our level of comfort with various topics and to develop our own skills or to seek out appropriate knowledge, resources and/or individuals to teach these essential life tasks.
Within social/sexual learning situations,
a model developed by Annon (1974) offers a decision making hierarchy to
enable each of us to determine our level of comfort with a topic and to
seek additional personal or professional resources as needed. The model
provides a progression from simple permission giving to providing limited
information and specific suggestions, and/or to seeking intensive therapeutic
intervention. (Annon, 1974) It offers an opportunity for staff and parents
to work together in defining their respective roles in dealing with social/sexual
issues in the lives of children and youth with visual impairments and realize
that it is okay to seek help and not to have all the answers in how to
intervene or facilitate each child or young adult's social/sexual development.
CONTENT--WHAT/WHEN TO TEACH
Social/sex education is more than just the facts, its a way of life. Social/sex education is an intimate part of our daily life with the child, adolescent, or young adult with visual impairments whatever their level of functioning. The social/sexual life tasks are the same for individuals with visual impairments as they are for individuals without disabilities, but due to an array of developmental and experiential issues the rate and type of access to information will vary.
The content of what we teach in the area of social/sex education needs to be seen as fully integrated into all the life skills that our children learn from birth onward.
The roots of social/sexual development for children and youth with visual impairments individual lie in the development of self-esteem, communication, choice and decision making skills, control, and forming a network of supports and relationships. The wings of social/sexual development are the content areas of social/sexual skills and knowledge needed to enable one to participate as fully as possible in life.
In reviewing the tasks of social/sexual development for children ages birth through young adulthood, it is important to remember that children with disabilities also need to go through these life tasks, but as we noted earlier their rate of development may vary with the degree of their disabilities. Our task as facilitators or mediators, however, requires that we keep these tasks in focus and realize that all of the skills, such as self-help, communication, play, fine motor and mobility, which we so conscientiously put into our individualized education plans, have as their ultimate goal the development of self-esteem and social/sexual independence.
The social/sexual challenges or issues for the adolescent and young adult with visual impairments are the same as for individuals without disabilities, but their ability to grow in these areas is often more limited by their social environments and learning opportunities than that of their peers. For many of us, as both parents and caregivers, we are faced with the challenge of creating age appropriate learning situations in areas such as friendships or dating, while we ourselves still wrestle with these issues in our own personal lives. Or we are challenged as to how to communicate social/sexual cues, which are often non-verbal for us, into language and/or concepts understandable to the person with visual impairments. Later in a discussion of techniques, we will see that the limitations of teaching and expressing these concepts are most often a function of our need to be creative and to socially engineer learning opportunities for children and young adults with visual impairments.
The content of a social/sex education program
for learners with visual impairments parallels in content what each of
us needed to learn in early childhood and young adulthood. Since within
the space of this presentation, a detailed explanation of each of the curriculum
content areas can not be given, the reader is encouraged to utilize the
curricula and resource materials cited in the references to fully grasp
the range and scope of resources available.
SOCIAL /SEX EDUCATION CORE CURRICULUM
* UNDERSTANDING ONESELF: SELF AWARENESS
(e.g. body parts; body language; feelings; self-control; physical development; gender, etc.)
* UNDERSTANDING BODILY FUNCTIONS
(e.g. toileting; grooming; hygiene; menstruation; etc.)
*UNDERSTANDING INDIVIDUAL DIFFERENCES
(e.g. uniqueness; puberty; body image; positive self-concept, etc.)
* UNDERSTANDING THE NEED TO RESPECT SELF
(e.g. privacy; self-image; assertiveness; etc.)
* UNDERSTANDING RELATIONSHIPS WITH OTHERS
(e.g. family; friends; strangers; dates; decision-making skills; avoiding abuse and
* UNDERSTANDING ADULT LIFESTYLES
(e.g. single; married; gay; parenting; group home; etc.)
* UNDERSTANDING MEDICAL ASPECTS OF SEXUALITY
(e.g. conception; birth control; aids; sexually transmitted diseases; prevention; etc.)
* UNDERSTANDING SEXUALITY TERMS (SIGNS)
(e.g. body parts; actions; etc.)
In reviewing this list, it might be easy to say that these topics only apply to higher functioning children and youth with visual impairments, but access to this knowledge to the highest degree of their potential is a basic right of all individuals with visual impairments. The lack of social/sexual development all too often is the result of waiting to expose the child or young adult with visual impairments to these essential life concepts when we feel that they are ready to learn them. If, as stated earlier, even persons without disabilities often do not fully access knowledge in these core areas, how can we expect progress among children and young adults with visual impairments if we do not attempt to supply them with this information? For the more severely disabled exposure to experiences and information will differ in degree than the level of social/sexual knowledge required by the higher functioning child or young adult with visual impairments, but across all functioning ranges staff awareness of the individual's right to such knowledge is essential. This isn't easy, but once again the difficulty lies not with the child so much as with we as adults beginning to make social/sexual learning a conscious part of our day-to-day interactions with our children.
The individual education plans of each child and youth with visual impairments must begin to incorporate goals related to their present level of social/sexual development and challenge the attainment of greater independence and skills. Often we neglect to deal with social/sexual issues stating that the person with visual impairments is not ready to be exposed to or learn a specific topic, but in this area, as in other areas of learning, children will not internalize and/or act upon that which they do not understand. We need to be careful that in our waiting for moments of readiness that we are not simply avoiding the topic of social/sexual education.
Adolescence will occur for all, we can not stop the processes of physical development, but hopefully the social/sexual knowledge we have shared with children with visual impairments will better prepare them for its occurrence. The tasks of adolescence for the individual with visual impairments will be the same as for all teens, but the rate and how the information is presented may vary, along with the opportunities to practice and master the social/sexual skills of this period. The content of this adolescent/young adult period, which continues into adulthood, is once again the content that each of us needed and continues to need to learn in our social/sexual dealings with one another. It is the content of self-development and self-care and the tasks of relating to others socially and sexually.
Our task is to act as a support or sounding
board to enable the child or young adult with visual impairments to balance
their needs and to master the social/sexual tasks of this period to the
level of their fullest potential.
How do we do this? What techniques can we most effectively use to teach the person with visual impairments these essential life tasks given their wide range of functioning levels and living situations? This is where the actual teaching of social/sexual skills to children and young adults with visual impairments has often run into its greatest difficulty. We can usually convince ourselves that we need to address this topic, but when we look at the individual with visual impairments, we shake our heads and wonder where to begin. The key point, however, is not where to begin, but how and when to most effectively deliver or better facilitate social/sexual learning for the deafblind individual.
Children and adolescents with visual impairments are so diverse in terms of their levels of functioning, living situations, and levels of social supports, that no one answer can be given as to how or when to teach them. Since each child, youth, or adult brings to each situation their own unique personality, level of skills, and learning style, their needs and intervention strategies must be considered from an individual perspective. Monat (1982) has outlined the factors which affect the individual with multiple disabilities ability to exercise their social/sexual rights and responsibilities in the following manner:
COGNITIVE LEVEL: i.e. the degree of impairment
(e.g.: mild, moderate, severe, profound).
ADAPTIVE SKILLS: i.e. self-concept, social attitudes, peers, parents, staff, laws, etc.
ENVIRONMENT: i.e. living situation -- independent, group home, family home, residential facility, etc. (Monat, 1982)
Each of these factors would affect both the type of approach used in communicating social/sexual rights and responsibilities to the individual and the degree to which they will effectively be able to exercise those rights. For example, at the lower end of the developmental and living spectrum, the intervention approach may be more behaviorally oriented and/or concentrate more on staff behavior regarding client rights to privacy and age-appropriate physical handling. While at the higher end of the spectrum, more formal instruction and education coupled with providing the individual with the freedom and opportunity to exercise their rights and responsibilities would be the method of intervention. The following chart (Miller, 1994) attempts to graphically outline the internal/external factors in decision-making for planning social/sex education interventions.
An effective intervention must achieve a balance in the often conflicting forces of the person with visual impairment's physical development, his/her functional levels of language, cognitive, and social/emotional development, his/her living situation, and the additional environmental factors of social, parental, and staff expectations.
The level and method of intervention needs to be viewed as a continuum, variations in approach are needed based upon the child/young adult's level of adaptive and cognitive skills and their present--future living situations.
In utilizing all of the following techniques, the emphasis needs to be upon "action". We all learn by "doing" and the learning of functional social/sexual skills can be "a lot of fun".
The key components of a method for instructing children, adolescents, or adults with visual impairments with or without additional disabilities in social/sexual skill development are having an approach which is both adaptable to their wide range of functioning levels and which raises staff confidence and comfort in dealing with these issues. One such approach, which has been used successfully with severe to high functioning students has been developed by Jean Edwards in her two curricula, BEING ME (1979) and FEELING FREE (1982). A brief summary explanation of her approach is presented below.
The key concepts proposed by Edwards (1982) offer a method of defining social/sexual behaviors and tasks into the four workable categories of:
"Appropriate/inappropriate" is used to refer not to whether a situation is right or wrong, but to whether or not the behavior matches the situation. In many instances, it is a common sense decision (for example, choosing whether or not it is appropriate to wear sandals in the snow), while in other instances it is tied to societal expectations or judgments (for example, how we meet or greet strangers as opposed to more intimate greetings with family members).
The second set of categories, "public/private," is defined as follows:
PRIVATE = any place where no one can see you and there is little or no chance of being seen (e.g. bathroom or bedroom with doors and curtains closed).
PUBLIC = any place where people can or may see you.
The use of these categories offers concrete terms to aid parents, staff, and clients in defining and finding solutions or alternative behaviors in social/sexual situations. These terms also stress age-appropriate behaviors and encourage decision-making skills by children and youth with visual impairments with or without additional disabilities. Finally, these categories are adaptable to planning interventions for a wide range of functioning levels and in relaxing attitudes toward dealing with social/sexual situations.
Although discussions around cultural sensitivity need to occur and be taken into account as to how to define certain behaviors within situations (e.g. home vs. school), in our experience, these terms can be used to define reached the majority of social/sexual behaviors and serve as a jumping off point to develop intervention plans and social/sex education lesson plans.
For example, whether in the home or residence, it is inappropriate for an adolescent with visual impairments to masturbate in public. A learning sequence can then be developed based upon the individual's level of functioning to teach the appropriate time and place to masturbate in each living situation.
Although the Edwards curricula (1979;1982) provides us a concrete framework to define many topics of social/sexual learning in the home, school, group home, or other community living situations, one needs to use a variety of techniques or approaches to put the curriculum into action.
The approaches which I will overview have one overriding concept, as staff and caregivers we need to both SEIZE THE MOMENT---AND SOMETIMES CREATE THE MOMENT to optimize social/sexual learning opportunities for the child or young adult with visual impairments whatever their level of developmental functioning or degree of independence.
The following are some techniques which have been useful in developing concepts of social/sexual rights and responsibilities among children and youth with visual impairments:
1. Role Playing: This technique can be utilized across the full spectrum of functioning levels. For example, to prepare a child within the severe to moderate range for the onset of menstruation, since many children with visual impairments within this functional range have difficulty dealing with changes in their routine, the child should be introduced to the wearing of a sanitary pad on a monthly basis.
Role playing situations (e.g. on an actual mobility lesson), where staff who are not known to the student approach the student to try to get them to come with them, can be used to teach children and young adults in the mid to high functioning range about self-protection techniques and how to deal with strangers.
Activities, such as dancing, eating in a restaurant, or dating can also be rehearsed through role playing with follow-up practice opportunities in real life situations. Finally, role playing and/or reverse role playing, where the staff or caregivers act out the child's behaviors, can be used to "debrief" or review social/sexual situations, such as workplace or community behaviors, after community experiences have occurred.
2. In Vivo Counseling/Teaching: This technique involves using moments of opportunity for social/sexual learning which occur across the day. Especially for children and young adults who may not be able to learn out of actual contexts, this technique involves replaying or demonstrating the appropriate behavior and language within the actual situation. For example, if a child consistently leaves the bathroom with his pants undone and returns to class, staff would not fix the child's clothing within the hallway or classroom area, but rather return to the bathroom to illustrate the appropriate time, place and behavior to fix one's pants. In the case of another student, who consistently would lift up her shirt in public to adjust her bra, staff and family members intervened by taking the student to a restroom or other private area and rehearsing and teaching the appropriate language and behaviors for a private activity.
3. Photos; Slides; Pictures; Drawings: can be utilized in both fostering language and choicemaking around both public/private and appropriate/inappropriate social/sexual behaviors. This medium whether using hand drawn pictures; self produced slides or photos; or commercially available slides or photos (Edwards, 1979;1982; Stanfield Publishing, 1997; Sexual Exploitation Curriculum, 1979) allows the child or young adult with visual impairments both time and multiple opportunities to review images of social/sexual situations; expressions of emotion or feelings; and/or to learn basic bodyparts or gender concepts. For example, language experience stories or the Van Dijk method of conversational signing, magazine pictures or actual photos of the child or adolescent with visual impairments within certain situations could be used to offer language about feelings or behaviors within those situations.
4. Video: offers the opportunity to actually replay actual social/sexual situations to reinforce both positive behaviors and to offer options or learning opportunities for dealing with inappropriate behaviors. For example, while videotaping a group of adolescents who were deafblind in the work activity center, a female student was observed to periodically be reaching under the table to rub the thigh of a male student sitting next to her. Both students had been involved in a social/sex education program and exposed to the concepts of public/private and appropriate inappropriate. (Edwards, 1978;1982) The videotape was replayed individually with the students to review and provide language around the topics of public and private behavior in the workplace, where such behavior might be more appropriate, and public and private body parts and the right of the person to refuse or allow such touch.
5. Models: Although it is best for children and youth with visual impairments to be given the names/signs for their sexual body parts during normally occurring opportunities from an early age (e.g. bathing), life like models of sexual body parts (Jackson Pelvic Models) and/or anatomically correct dolls (e.g. Teach a Bodies; Victoria House Dolls ) can be utilized as instructional and intervention aids. The case study which follows this technique overview illustrates one such use for these models.
6. Books; Audiotapes: Although there still needs to be an increase in the number of books which are brailled or recorded in the area of social/sexual education for use by children and young adults with visual impairments, this is often an overlooked medium for mid to high functioning students. An audiotape such as Your Changing Body (Allen, 1974) offers a time for guided self exploration and can build both language and concept skills and offer a base for instruction in bodily changes and development. Books on tape or in Braille can also offer such a common jumping off point for parents, staff and the child or young adult to share information on social/sexual topics.
7. Peer Support Groups: offer an
opportunity for children and youth with visual impairments to explore social/sexual
issues within a safe context. Such groups offer an opportunity for discussion
and/or role playing to enable children and youth with visual impairments
to be exposed to, practice or review strategies for dealing with social/sexual
issues in their lives. Teen weekends sponsored by schools for the blind,
deaf, or deafblind or community based organizations for the deafblind could
be utilized to provide an opportunity for career and social/sexual education.
PULLING IT ALL TOGETHER
Let's spend a moment, briefly trying to pull all of this together to develop an action plan to raise our awareness of how we might begin to better foster the development of these essential life skills among deaf-blind individuals at all ages.
The above planning sheet enables both staff and parents to begin to approach and work through social/sexual situations from a common framework. This framework looks at clarifying each individual's level of comfort and ability to deal with social/sexual situations and to participate in the definition of workable outcomes. The questions are ones which can be easily internalized so that the development of social/sexual knowledge or reactions to social/sexual situations for children and youth with visual impairments at any age can become as automatic a part of our home or school curriculums as the activities of daily living.
POLICY DEVELOPMENT: MOVING AHEAD
Social/sex education for children and youth with visual impairments needs to occur as a home-school partnership. At present, all too often both parties at best defer to the other or at worst do not address the issue until some developmental crisis ensues. The school and parents need to work together to develop a living atmosphere which offers optimal opportunities for the social/sexual development of each student as a unique individual personality. As with all areas of learning, perhaps even more so in the area of social/sex education, the need to balance staff expertise with parental cultural and/or other beliefs and with the uniqueness of each individual child or young adult with visual impairments is essential if optimal growth is to occur in this area. Schools, group homes, residential facilities, and agencies who provide services to children, youth and adults with visual impairments should develop policies which outline clearly individual rights and staff and client responsibilities in the area of social/sex education and behaviors. Inservices and trainings for both parents and staff should be offered to clearly communicate that the goals of the school or agency, as with all other areas of learning is to enable the individual with visual impairments to achieve the fullest level of social/sexual independence as possible.
A clearly defined policy, developed wherever possible with the input and review of staff, parents, and consumers, should outline not only the school or agency's philosophy, but even more importantly the roles and responsibilities of the child, youth, or adult with visual impairments and the staff to enhance social/sexual learning. Since policies will vary with individual settings, the reader is referred to the Human Sexuality Handbook: Guiding People Toward Positive Expressions of Sexuality (Brown, 1994) and to Being Me (Edwards, 1979) for examples of useful policies.
SUMMARY AND LIST OF KEY POINTS
This presentation has offered a brief overview of some of the critical areas in the development of social/sex education programs for children and youth with visual impairments. As outlined in the key points below the challenge to both improve and enrich the lives of children and youth with visual impairments in the area of social/sexual development belongs to each of us and the rewards for the implementation of effective programs will be fuller and more effective lives for all.
1. Social/sex education continues to be a controversial and generally ignored part of curricula and training materials for children and youth with visual impairments.
2.A proactive approach needs to be implemented in teaching social/sexual skills to children and youth with visual impairments.
3. The first step in developing and implementing a social/sex education program for children and youth with visual impairments is to clarify our own personal values and attitudes toward sexuality and sexuality for the disabled.
4. Children and youth with visual impairments do not cease to be social/sexual beings because of their disabilities and possess the same social/sexual rights and responsibilities as persons without disabilities.
5. Visual impairment may severely limit access to both incidental and direct social/sexual learnings and opportunities.
6. The role of parents and staff is to mediate, facilitate, clarify, and provide opportunities for social/sexual learning for children and youth with visual impairments.
7. The content of a social/sex education program for children and youth with visual impairments is intricately related to all facets of deafblind education, but particular attention needs to be given to increasing self esteem and access to social/sexual learning opportunities.
8. As parents and staff, our role is to seize and create optimal moments for social/sex education within the real life experiences of children and youth with visual impairments.
9. Program planning and implementation need to consider the functioning level of children and youth with visual impairments, their present and future living situation, and the utilization of appropriate communicative and interactive techniques.
10. Schools and community agencies serving
children and youth with visual impairments need to develop policy statements
which facilitate opportunities for persons with visual impairments to access
their social/sexual rights and responsibilities to their fullest potential.
Allen, Pat, and Lipke, LeeAnn, Your
Changing Body: Audiotape, Perennial Education,
Inc.: Illinois, 1974
Annon, Jack S., The Behavioral Treatment of Sexual Problems, Vol. 1 and 2, Enabling Systems, Inc., Hawaii, 1974.
Bell, Ruth, Changing Bodies, Changing Lives, Random House, New York, 1980.
Brown, Gail T. Human Sexuality Handbook: Guiding People Toward Positive Expressions of Sexuality, The Association for Community Living, Massachusetts, 1994
Briggs, Dorothy, Your Child's Self-Esteem, Doubleday and Company, New York, 1975
Chipouras, S., Cornelius, D., et al, Who Care? A Handbook of Sex Education and Counseling Services, George Washington University, Washington, D.C., 1979
Curriculum for Developing an Awareness of Sexual Exploitation and Self-Protective Techniques, Comprehensive Health Education Foundation, 20814 Pacific Highway So., Seattle, WA, 98188
Dechesne, B.H.H., Pons, C., and Schellen, A.M.C.M., (edited by), Sexuality and Handicap, Charles C. Thomas Publisher, Springfield, Illinois, 1986
Edwards, J. and Wapnick, S., Being Me (1979) and Feeling Free (1982), Ednick Communications, Box 3612, Portland, OR, 97208
Frank, Roger, and Edwards, Jean, Building Self-Esteem in Persons with Developmental Disabilities, Ednick Communications, Oregon, 1988
Greenberg, Polly, Character Development: Encouraging Self-Esteem and Self-Discipline in Infants, Toddlers and Two-Year-Olds, National Association for the Education of Young Children, Washington, D.C., 1991
Griffiths, Dorothy M., Quinsey, Vernon L., and Hingsburger, David, Changing Inappropriate Sexual Behavior, Paul H. Brookes Publishing Co., Baltimore, Maryland, 1989
Gordon, S. Sexual Rights for the People...Who Happen To Be Handicapped, Syracuse: Center on Human Policy development, Syracuse University,1974
Hargie, Owen, Saunders, Christine, and Dickson, David, Social Skills in Interpersonal Communication, Croom Helm, London, England, 1987
Jackson Pelvic Models, 33 Richdale Avenue, Cambridge, MA 02140; 617-864-9063
Katchadourian, H.A., and Lunde, D.T., Fundamental of Human Sexuality, Holt, Rinehart and Winston, N.Y., 1975
Kolodny, R., Masters, J., and Johnson, V., Textbook of Sexual Medicine, Little, Brown and Co., Boston, MA, 1979
Kroll, Ken, and Klein, Erica Levy, Enabling Romance, Woodbine House, Bethesda, MD, 1995
Marshall, Hermine, "The Development of Self-Concept", Young Children, 1989, pp.44-51
McGinnis, Ellen, and Goldstein, Arnold, Skillstreaming in Early Childhood, Research Press Company, Champaign, Illinois, 1990
Miller, T., Social/Sex Education for the Deafblind, Keynote Presentation: Fourth Canadian Conference on Deafblindness, New Brunswick, Canada, 1994
Monat, Rosalyn Kramer, Sexuality and the Mentally Retarded, College-Hill Press, San Diego, California, 1982
Monat-Haller, Rosalyn Kramer, Understanding and Expressing Sexuality, Paul H. Brookes Publishing Co., Baltimore, MD, 1992
O'Day, Bonnie, Preventing Sexual Abuse of Persons with Disabilities, Minnesota Program or Victims of Sexual Assault, St.Paul, MN, 1983
Pomeroy, Wardell B.(Ph.D.), Boys and Sex, Dell Publishing Co., Inc., New York, NY, 1981
Pomeroy, Wardell B. (Ph.D.), Girls and Sex, Dell Publishing Co., Inc., New York, NY, 1981
Project MORE., Developing Responsible Sexuality, Hubbard: Illinois, 1978
Ratner, Marilyn and Chamlin, Susan, Straight Talk, Viking Penguin Inc., New York, NY, 1987
Santa Clara County Social Skills Curriculum, developed under SCORE Regionalization Project, to order contact B.J. McCallum, 1296 Maripose Ave., San Jose, CA, 95126, at (408) 971-1353
Teach-a-Bodies Instructional Dolls,
P.O. Box 101444, Ft. Worth, TX 76185; 817-923-
Tymchuk, Alexander J., Effective Decision Making, Ednick Communications, Inc., Portland, Oregon, 1985
Victoria House Dolls, P.O. Box 663, Forestville, CA 95436; 707-887-1516
Zilbergeld, Bernie, Male Sexuality, Bantam Books Inc., New York, NY, 1978
Zimbardo, Phillip, Shyness, Addison-Wesley Publishing Company, MA, 1978