A discussion of adulthood in general and that of individuals with severe cognitive impairments was presented. The meaning of adulthood in our culture raises issues regarding the disparity between status as an adult and status as a person with a severe cognitive impairment. An examination of the traditional roles, rites, and rituals of adulthood (e.g., voting, marriage, consensual sex, and moving out of the family home) was provided. Personal deliberations on how the first author intends to assist her daughter in accessing these markers of adulthood are included. Our overall goal in this article is to promote discussion regarding adulthood and significant disabilities and to encourage additional movement toward full societal membership of adults with severe cognitive impairments.
The transition from childhood to adulthood is a significant phase in anyone's life. This transition can be particularly poignant for parents of children with disabilities (Ferguson, Ferguson, & Jones, 1988; Gallivan-Fenlon, 1994; Thorin & Irvin, 1992; Thorin, Yovanoff, & Irvin, 1996). Historically, segregation and institutionalization were the only options for adults with severe cognitive impairments (Howe, Horner, & Newton, 1998). This dismal view of the future is heart breaking for many parents. However, in recent years the independent supported living and employment models have provided encouragement for individuals with disabilities to participate in community life to the fullest extent possible (Howe, Horner, & Newton, 1998; Racino, Walker, O'Connor, & Taylor, 1993). In spite of these advancements, the full rights, status, and respect of adulthood conferred on typically developing adults are often overlooked for individuals with severe cognitive impairments (Gadacz, 1994). In addition, the literature is very limited on individuals with severe cognitive impairments accessing such traditional markers of adulthood as voting, marriage, and sexual consent.
In this article we present a discussion of what constitutes adulthood in our society, followed by a more detailed discussion of the traditional roles and rituals of adulthood, such as voting, sexual consent, marriage, and moving out of the family home. Each section includes a discussion on what accessing these rights would mean in terms of safety considerations and the specifics of supports for the first author's daughter, who has a severe level of cognitive impairments. The purpose of this discussion is not to create a map or an example for others to follow but to promote further consideration of the difficulty of creating a vision in a media vacuum. The term media vacuum refers to the paucity of images and information in our popular magazines, television shows, movies, and newspapers of people with severe cognitive impairments. We do not see images of such individuals in the popular media living happy typical adult lives, nor are they represented in our commercials as consumers. On our movie screens, we see beautiful, competent people falling in love, but never with a beautiful person with severe cognitive impairments. This lack of recognition by mainstream media connotes a devalued position for such people in our society. This is a broader issue than the limited information that is available in professional journals. It is our hope that this article will promote discussion on what accessing the traditional rites and roles of adulthood means for individuals with cognitive impairments in order to help others to create visions of adulthood for their children that are increasingly consistent with a more inclusive and participatory society.
Because this article includes both personal and professional deliberations, it is written using a layered account format (e.g., Ronai, 1992, 1997). The layered account is an ethnographic reporting format that enables researchers to include their thoughts and emotions in the written accounts (Ellis, 1991; Ellis & Bochner, 1996; Kirklighter, Vincent, & Moxley, 1997). Italics have been used to delineate a shift between the researcher perspective and the more personal parent perspective of the first author.
Because this article contains personal deliberations, the following paragraph contains a brief description of the first author and her daughter. Our society frequently views people with disabilities in terms of being less able, different, and less valuable than other members of society (Danforth, 1998; Racino & Walker, 1993). Labels are very inadequate ways to describe a person; yet, we all do it. The first author is currently a doctoral candidate in the field of special education, a researcher, and a parent of two children, including Cassandra. Cassandra has acquired numerous labels during her 17 years of life, including profound cognitive impairments, visual impairment, cerebral palsy, and autism.
The experience of truly loving and valuing someone that the rest of society devalues leads to a perspective that challenges the devaluing, underlying assumptions on which many service systems for people with severe cognitive impairments were built. Having service systems presume your acceptance of practices and placements (e.g., segregation, institutionalization, self-contained classrooms, and sheltered workshops) that are based on undervaluing your loved one is an extremely painful and frustrating experience.
My relationship with Cassandra, my daughter, is one of the most intimate and fulfilling relationships I have had the pleasure of experiencing. She has a gentle spirit that has a calming effect on me whenever I am close to her. She has a sweetness, innocence, and vulnerability that are coupled with an amazing strength of character. She has a sincerity and honesty that is hard to match. Even as a small child, she was not swayed by television commercials or peer pressure about toys or food items. This type of independence, an independence of thought, is rarely discussed in the literature.
Cassandra needs assistance with daily living activities. She has a present and expected future need for 24-hours-a-day of support or supervision. She is nonverbal, has emergent use of picture communication, and can answer questions with gestures for yes or no, but is often reluctant to do so.
Cassandra genuinely values people, although she is very particular about whom she allows in her inner circle, as most discerning people are. Yet she is very sincere and caring with those with whom she chooses to communicate. She likes to sit close and hold your hand (if you are one of the chosen). She will lightly toy with your hand with her fingers and place your hand on a nearby toy or musical instrument for you to play it for her. This closeness and touching that she controls is important to both of us. My heart fills with joy when I witness someone else taking the time to allow Cassandra to communicate with them in this way.
Construction of Adulthood
How a culture defines adulthood has implications for the transition policies and practices of that society. If adulthood is defined by the functioning level of an individual, then individuals with severe cognitive disabilities will have problems accessing the roles and rights of adulthood. Adult status is not defined consciously, but occurs by accepting the underlying, often hidden, assumptions that create a set of beliefs to which a society adheres. Becker (1935) labeled this process the “climate of opinion.” An important issue is whether today's climate of opinion about the abilities of individuals with severe cognitive impairments causes people to automatically dismiss rights and rituals conferred on individuals without disabilities as being inappropriate for individuals with severe cognitive disabilities.
The construction of adulthood differs across time, culture, and the phases of adulthood (i.e., young adult, middle age, and senior citizen). Also, adulthood can be considered from several different perspectives (i.e., medical, chronological age, social/cultural, or mental age).
One perspective is to view adulthood in terms of physical growth (medical perspective). Adulthood considered from the medical perspective would occur immediately after puberty. Interestingly, the typical age of onset of puberty has changed from 16 years in 1850 to 13 years today (Cote, Allahar, & Anton, 1996; Sprinthall & Collins, 1984). These emerging physical changes are connected to the onset of certain cultural chronological markers of adulthood. For example, the ages of sexual consent and access to one's first driver's licenses are similar to the traditional typical onset of puberty (16 years) in many states. Cultural and societal constructs of when adulthood occurs often coincide with certain physical and growth changes.
Physical maturation is a part of adulthood, but adulthood constitutes more than a mere physical change. When considered from the perspective of functioning level, adulthood creates barriers for individuals with severe cognitive impairments to accessing the traditional rites, roles, and rituals of adulthood accessed by their peers without disabilities. Ours laws and court cases on capacity to consent, as well as guardianship, stem from this perspective. A person legally labeled incompetent may be subject to greater control over his or her life than one convicted of a crime (Schmidt, 1995). In most states, a finding of legal incompetence restricts a person's right to marry, make contracts, decide where to live, to vote, refuse medical treatment, keep and care for children, and manage a business (Dinerstein, Herr, & O'Sullivan, 1999; Schmidt, 1995). Schmidt called the declaring of an adult as incompetent “legal infantilization.” He further noted that, nationally, guardianship does not seem to decrease the risk of erroneous deprivation of the liberty or property of the ward. Under Florida law, a person may have a guardian advocate to assist them without the person being legally declared incompetent.
The construct of competence can be viewed from many different perspectives and as many different continua, depending upon the context and the environmental circumstances. No person is fully competent in all of life's decisions and domains. We all need and seek supports in our decision-making, whether in the form of direct advice and guidance from family, friends, and professionals or in the less obvious supports that form the rules and rituals of our society. Our level of competence varies greatly with the demands and circumstances of the contexts, and in those contexts where our competence is limited, our dependence on external supports becomes more conspicuous. Acknowledgment of this kind of interdependency makes the notion of competence less definitive, and society may be more inclined to regard individuals with intellectual support needs with dignity and value.
The type of supports one may need in assisting a person in decision-making is a complex process for which one should take into consideration the unique needs of each individual and their family and friends. The complexities of informing a person about a choice, assessing and interpreting a person's decision, and communicating that decision to others is at the crux of the ability for a person to act with autonomy and enjoy the rights, roles, and rituals of being an adult.
I take the role of supporting Cassandra in her decision making very seriously. It is a complex and difficult thing to do, and I am not always sure that I am explaining and interpreting her choices in a fair and correct manner. Respecting her right to autonomy, competence, and choice is of great importance to me, and I cannot allow the fear of misinterpreting her, or of offering a choice from a prejudicial perspective, to stop her from having choice. Having a choice as an adult is much more complicated than having choice as a child. If I misinterpreted her choice when she was a child, she may have gone to the pool instead of the playground. As an adult, her life will still be filled with choices of lesser consequences, such as whether to buy red or gray sneakers, but the many choices adults make carry with them much more serious consequences than owning a less valued pair of shoes.
I view Cassandra as competent; she needs supports. She needs someone to explain to her the myriad of decisions she, as an adult, will have the opportunity to make. She will need someone to interpret her responses and to communicate her decisions to others. The reason that I have gone to great lengths to think about adulthood, and what roles and rites Cassandra would access if she did not have a disability, is to better prepare myself to advocate for her so that she can have the same opportunities as her peers without disabilities. I believe equal opportunity is what she would want if she could advocate for herself. I have had significant difficulty envisioning my daughter accessing some of the traditional markers of adulthood. However, the issue is not whether I find it difficult to envision my daughter having sex or getting married, but whether it is something that she may want to do.
Another perspective from which to view adulthood, besides medical or skill level, is the sociocultural perspective. This perspective concerns the expectations a society has for adults. This article is focused on this sociocultural perspective.
What does our society consider adulthood to be? Traditionally, adulthood is associated with independence, autonomy, and physical and emotional separation from parents (Garber & Dubas, 1996; Mandell, Porter, Tesson, & Lewko, 1994; Modell, 1989), although recent changes in the definition of autonomy are changing this perception (Cunningham, 1995). These changes have significant implications for individuals with severe cognitive disabilities with regard to their ability to access roles traditionally associated with adulthood but not traditionally associated with individuals who have severe disabilities. In the past, autonomy for such individuals has been defined as independence from the assistance of others. However, due to recent developments in the fields of family systems and special education, autonomy has been redefined as an individual's capacity to take responsibility for one's own actions, to make decisions regarding one's own life, and to maintain supportive relationships (Crittenden, 1990). Wehmeyer (1992) defined self-determination as “acting as the primary causal agent in one's life and making choices and decisions regarding one's quality of life, free from undue external influence or interference” (p. 305). Wehmeyer posited that being a primary causal agent in one's life translates into acting autonomously.
Another emphasis of this movement has been to focus on the resources and opportunities made available to persons with a disability through the political process by influencing policy decisions and law (Gadacz, 1994; Turnbull & Turnbull, 1985). However, little attention has been given in the literature to voting supports for individuals with severe cognitive impairments.
The literature on the development of adolescents without disabilities shows a similar change in the definition of autonomy. In earlier studies authors defined it in terms of detachment from parents, capacity to function adequately on one's own, individuation, and independence from parents (Blos, 1979; Freud, 1958; Greenberger, 1984). More recent works have been focused on decision-making capacities and acceptance of responsibility. Currently, the emphasis is on greater mutuality in the parent–child relationship (Grotevant & Cooper, 1986) and the importance of peer relationships (Rubin & Pepler, 1980; Selman, 1981). Again, autonomy is no longer concerned with how much one can do by oneself, but the accepting of responsibility and making decisions for oneself in a context of social connectedness. The old definitions of autonomy would prevent society from viewing anyone with significant physical or cognitive disabilities as ever being autonomous. Recent attention to the concept of interdependence as opposed to independence has helped us realize that none of us are truly independent, and it is simply a matter of degree and type of dependence that we have on each other (Condeluci, 1991).
What are the rites and roles we confer on people who reach a certain age, skill level, or position in our society? There are many rites and activities from which children are restricted, such as voting, sexual intimacy, marriage, drinking alcoholic beverages, getting a tattoo, moving from the family home, and getting a job. The following discussion concentrates on several of these issues.
The right to vote is one of the key political indicators that an individual is an adult. Voting signifies that one is deemed old enough to have a say in the way society decides its laws and leaders. Because making choices and participating in community life to the fullest extent possible are desirable goals (Racino et al., 1993), then it is reasonable to postulate that individuals with cognitive impairments should join other adults in choosing community and national leaders. Voting is a right given to all nonfelonious citizens, regardless of race, creed, color, or IQ, and it may be argued that voting should be given more consideration in “functional” school curricula for individuals with cognitive disabilities. Every citizen is entitled to vote at the age of 18 years. Not to inform (or prepare) an isolated segment of the population of their right to vote can be considered discriminatory.
I believe that parents and professionals should assist individuals with severe cognitive impairments in exercising their inalienable right to vote. I will introduce Cassandra to the process of voting in a logical manner. The first step is to register to vote. In Florida, individuals are asked to designate a party affiliation (i.e., Democrat, Republican, or Independent) when registering. This is a difficult choice for many 18-year-olds to make and having a cognitive impairments adds to the level of difficulty. I would begin the party identification process by identifying relevant individuals in her life and their party affiliations. For example, grandma is a Democrat, whereas dad and grandpa are Republicans. Together, Cassandra and I can write a letter to the candidates introducing her to them and asking the candidates about their stand on issues she finds pertinent. The benefits of such a letter would be two-fold. First, representatives would become aware of the existence of this emerging, politically active population. Second, Cassandra would enjoy receiving mail. Her interest might be about accessible parking or the rising cost of good ice cream.
The issues that Cassandra would understand and respond to most readily would be those issues that involve or regulate a part of her life; the more immediate the connection to her life, the more likely she will be to comprehend and respond. Of course, this is likely to be true for the vast majority of voters. Competence can be viewed as relational. For example, some may question whether a person who has been labeled with a severe cognitive impairment can truly understand the complexities of elections and the relevant issues. However, it is undoubtedly true that many, or most, people vote without understanding the complexities of the issues. If such understanding were a requirement, then it may be safely assumed that a large proportion of the electorate would be judged incompetent to vote. The point is that we have choice. Cassandra may choose to vote for someone I would never dream of voting for, just as my parents did not always appreciate my choices; or she may choose not to vote at all. Her ability to express her choice, as do her peers without disabilities, is the primary issue and question.
The actual voting process could be conducted by absentee ballot or in the voting booth. Safeguards are needed to prevent the caretaker or personal care attendant from filling out the absentee ballot in a manner inconsistent with the wishes of the individual with a disability. Indeed, many issues will emerge as individuals with disabilities, especially those with severe cognitive impairments, are expected to access the same rights that their peers without disabilities have. However, such issues can be discussed and resolved. A major question is how other parents and professionals might facilitate access to the voting process for individuals with severe cognitive challenges.
Our society is changing the expectation that marriage is a necessary part of adulthood. The 1976 replication of the 1957 study of “well being” analyzed by Veroff-Douvan and Kulka (Modell, 1989) shows a loosening of the normative necessity of being someone's wife or husband in order to be a valued adult. Even family law reflects this change. The law had previously defined marriage as a lifetime contract unless the flawed behavior of one spouse was destructive to the other party. Many states no longer assert a moral interest in perpetuating marriage and have introduced no-fault divorces. No-fault marriages are formally assumed to be contracts entered for the length of time the parties jointly prefer to continue the arrangement.
Although getting married is no longer a critical component of the construct of adulthood, it is a right that adults without disabilities enjoy. Adults with severe cognitive disabilities should have the opportunity to avail themselves of the companionship, emotional stability, and financial benefits enjoyed by married people.
According to our laws, parties who wish to marry must have the capacity to do so. For example, if, due to drunkenness, mental illness, cognitive impairments, or some other issue, one or both parties lack “capacity,” the marriage could be ruled invalid (Goulenpaul, 1997).
The capacity clause is problematic for individuals with severe and moderate cognitive impairments who wish to marry. Families who want to prevent a marriage that they feel would cause harm to a vulnerable loved one can invoke the capacity clause. In addition, because many individuals with severe cognitive impairments have guardians, a marriage without the consent of the guardian would be fraught with legal difficulty.
Although many parents do not approve of their child's choice for a spouse, a key difference is that the parents of a person with a disability can legally stop the marriage of their child by bringing into question their child's capacity to make a decision on such an important issue. The legal tool of questioning a person's capacity may be a mixed blessing. Parents, family members, and concerned professionals can use it to protect very vulnerable individuals from harm, but it can also be used as a form of control. Control erodes a person's right to the dignity of risk and the right to make one's own decisions, including making one's own mistakes.
The issue is not whether individuals with severe cognitive impairments should be allowed to marry, but rather how safeguards can be put into place that ensure the safety of all vulnerable individuals who enter into a relationship where the power balance is unequal (e.g., one person has disabilities or for some other reason is physically, mentally, or emotionally weaker than the other). Many individuals without disabilities become victims of abuse in relationships where there is an unequal balance of power. Because being in an isolated, segregated setting presents more opportunities for abuse than an open, inclusive setting, an important safeguard for all individuals is to have a circle of friends, relatives, neighbors, and professionals with whom they are in regular contact. Open avenues of communication with a person whose main form of communication is nonverbal means frequent face to face visits.
I have to acknowledge that it is hard for me at the present time to envision Cassandra ever being married. This is due to the isolated life style that she experiences; no one calls her on the telephone to chat (she would listen and smile, although she is nonverbal) or comes over to visit. I would love for Cassandra to have the company of someone that she really enjoyed. If Cassandra found a partner that truly treated her with dignity and love, I would be very happy for her. Cassandra would love the process of getting a beautiful dress and having a big ceremony followed by a party. She would also love to have an attentive, kind, and considerate spouse to love and live with the rest of her life.
When I began to imagine Cassandra being married, I envisioned her partner having a similar or more severe disability. This emergent vision made me question why I could only visualize her married to another person “like her.” One reason is my assumption that if they both had similar disabilities, the balance of power would be equal. Another reason is that it was difficult for me to envision anyone without a disability falling in love with her. This difficulty I encountered in trying to picture Cassandra married to a person without a disability initially caused me to feel ashamed. Even though I have always been an avid advocate for Cassandra's inclusion, I have anguished over my inability to picture this kind of close relationship. I attribute the difficulty to several factors, including, first of all, the absence of cultural images in the media. Although Cassandra is a physically, emotionally, and spiritually beautiful person, it is extremely hard to escape our society's underlying, devaluing assumptions about people with cognitive disabilities, which cause people to have difficulty envisioning a typically developing person falling in love with Cassandra and others like her. I do not believe that it is any particular “reality” of the disability itself. It is the assumption that creates the reality, not the other way around.
I am also concerned about the amount of control/influence that I may inadvertently exert over Cassandra's decision to marry and to manage her relationship, perhaps even involving the concept of divorce. Cassandra does not initiate conversations, and she may always require some assistance in forming major life decisions. To assist in the process, I would try to find qualified counselors to assist the couple in decisions about their relationship. However, despite the presence of the normalization concept, most professional marriage counselors are ill equipped to counsel nonverbal couples who have cognitive challenges. Because of this lack of attention to my daughter's potential needs, I will need to be more aware and informed of ways to assist her than if she were typically developing.
I have tried to visualize an ideal marriage for Cassandra. I envision the happy couple in a cottage by the beach; they both love swimming and boating and have ample opportunity to do both. Cassandra would have a personal assistant who would be available 24 hours a day to care for her needs, but would leave her private time with her husband. If her husband is higher functioning, then he may carry a pager or another communication device to facilitate quick access to her assistant. Her spouse would be very sensitive to her needs, compliment her often, spend quality time with her, and respect her wishes about having children without pressuring her.
There is abundant literature on women with and those without disabilities being abused and denied medical treatment by their spouse. Incidences involving battering account for at least 20% of women's visits to hospital emergency rooms. The Colorado Department of Health estimates that 85% of women with disabilities are victims of domestic violence in comparison with 25% to 50% of the general population of women (Welner, 1999). The type of abuse reported consisted of medications withheld, wheelchairs dismantled, phones disconnected, disability checks stolen, threats of being placed in a nursing home, and threats of children being taken because of the disability. A perception exists in our society that women with disabilities should be grateful that any man would want to marry, date, or have sex with them (Welner, 1999).
I would be more worried about abuse and control issues if she married a person without a disability because of the power difference, but I worry about those issues regardless of her marital status. People with disabilities are also abused within the disability service system (Mansell, Sobsey, & Moskal, 1998; Sobsey & Doe, 1991) by staff. I would need the right to see her often to check on and monitor her supports. Even if her husband were higher functioning or did not have a disability, I would not want him to be solely responsible for making decisions about her supports or medical treatment. I would not want that for her if she were typically developing. I would want to remain her guardian advocate.
In today's society, childhood is considered a time of sexual innocence. Children are protected by laws that punish adults who do not respect this societal construct. Therefore, the age at which society no longer legally feels the need to protect a person's sexual innocence is an indicator of adulthood. The age of sexual consent is the age at which an individual can become sexually active without falling under a law that was created to protect children from sexual predators. In most states, the age of sexual consent is 16 years (Golenpaul, 1997).
Once again, this aspect of adulthood affects people with severe cognitive impairments. Consent has been defined as the knowing, intelligent, and voluntary agreement to engage in a given activity (Kaeser, 1992; Stavis, 1987). In the case of Commonwealth v. Saltzberger (1951), indicators used to demonstrate an individual's capacity were the ability to read, write, and tell time. In the case of People v. Blunt (1965), capacity to consent was determined by the ability to understand the sexual act, its nature, and possible consequences. Finally, in the 1977 court case of People v. Easley, the ability to appreciate how coitus would be considered within the framework of societal environment was used to determine the capacity to consent to the sexual act (Kaeser, 1992). These standards of competency were established to protect people who are cognitively challenged from sexual coercion. However, these same standards exclude individuals with cognitive impairments from ever engaging in mutual sex. It is important that the need for laws to protect an individual from harm not be so restrictive as to categorically preclude the opportunity for personal choice and the right to privacy (Hepner, 1979; Kaeser, 1992).
Consent is a complex issue that involves societal, cultural, and familial standards. From a societal perspective, consent must be defined to ensure opportunity to choose to engage in a mutual sexual activity and simultaneously protect an individual from sexual coercion. Kaeser (1992) called for a redefining of consent by positing that the definition should include a determination of what the individual would want if he or she could advocate and speak for him- or herself and a determination of what is in the individual's best interest as defined by an interdisciplinary team. As professionals, it is reasonable to believe that if a typically developing individual has the right to engage in mutually agreed-upon sexual activity at 16 years, then an individual with cognitive impairments should have the same right.
However, this viewpoint does not always fit with cultural or parental perspectives. In this respect, a limitation of Kaeser's (1992) model may be that it was created for use in institutions, intermediate care centers, and group homes. A family's concept of what is appropriate may not be entirely consistent with this view or with the general notion of sexual expression during the years of transition to adulthood. This is an extremely delicate, personal, and complex matter for any teenager (and family), and having a severe cognitive challenge adds to its complexity.
Although numerous studies have been conducted on the sexuality of people with acquired physical disabilities, there is a paucity of data on the sexuality of people with congenital disabilities (McCabe, 1999). Until the 1960s, there were negative and repressive attitudes held towards sexual expression among people with intellectual disabilities, whether they lived at home or in the community. In the late 1960s, the field recognized the sexual needs and rights of people with intellectual disabilities (McCabe, 1999).
Consensual sex in our society often begins with the dating ritual. Many parents of typically developing teens are eased into the concept of their child having a sexual relationship through the gradual process of dating in groups, followed by individual dating, and then to dating one person exclusively. These dating patterns allow the parents to know the other individuals in their child's life. These cultural rituals are often absent for individuals with significant disabilities.
I would love for Cassandra to have a social life, enjoy dating, and have the opportunity to be with someone special. Because she is so isolated, I have never before considered the potential issues of Cassandra having a sexual encounter. A positive side of having a teenager with a significant disability is that she is not out all night doing drugs, drinking, and getting pregnant. Even if she were aware of and wanted to engage in such activities, she would need supports that are not currently available.
Even when Cassandra engages in the same activities as her peers who do not have disabilities, she still seems isolated. She has yet to develop the type of friendships that are similar to those of her peers without disabilities. In the past, I have escorted Cassandra on all community activities. I am in the process of hiring a young personal care attendant to assist her with community experiences and to provide her with more normalized peer encounters. I am nervous about letting go, but I want her to have friends and fun. This could develop into situations where sexual consent becomes more of an immediate issue.
I have been neglectful in educating Cassandra about sexual issues. How would I inform Cassandra about the sex act in a way that would have meaning for her? First, I would explain that some touches are enjoyable; she likes to have her arm touched lightly. Then I would remind her that sometimes the same kind of touch that she likes from one person, she may not like from another person and confirm that this feeling is acceptable. Third, I would share that even if you like the person and the way the person touches you, there are times that you still do not want to be touched and confirm that this feeling is also acceptable. I would reiterate that when someone touches you; you must like the person touching you, the way they are touching you, and you must feel like being touched at the time the touching occurs. I would have symbol cards for the person, the way, and the time. If Cassandra liked the person, and the time, but not the way, it would be nice if she could communicate that she preferred a light or firm touch.
The most important issue would be confirming that her feelings are appropriate and that saying “no” is always acceptable. Fortunately, Cassandra is very independent in her opinions and not easily swayed. However, her difficulties in communication do make her vulnerable, and I would need to suggest several different mechanisms for saying no. A related concern would be protecting her from someone who does not care enough to listen when she communicates. Allowing for privacy and enough supports for protection is a fine balance. I have considered having cameras or sound monitors, but there are many questions about who would be the monitor and how to construct an appropriate balance between invasiveness and protection. These decisions are difficult to make, and making them in a “what if” context adds to the level of difficulty. Decisions about the level of safeguards would also depend on the nature of her partner's personality. If her partner were very meek and mild (my preference), I may opt for less invasive safeguards.
In addition, like many parents, I would stress the importance of the relationship and that a strong mutual commitment to the happiness of the other person is a prerequisite to considering having a sexual relationship. I would also want Cassandra and her partner to be tested regularly for AIDS and sexually transmitted diseases. I envision Cassandra using the birth control pill for protection against pregnancy, but if there were reasons she could not take the pill, I would want another effective form of protection (e.g., a vasectomy for her partner).
Because of the isolation that Cassandra experiences, it is very difficult for me to envision all of the potential issues that may occur if she were sexually active. However, the pain of envisioning Cassandra living a lifetime of isolation without real friends or people (other than myself and her siblings) who love her is much greater than the pain of the possibility of her having a negative experience.
Leaving home and getting a place of one's own is a traditional marker of full adult status (Cote et al., 1996; Cunningham, 1995; Ferguson et al., 1988; Garber & Dubas, 1996; Hurrelman 1992; Modell, 1989). The onset of puberty used to be the key indicator of adulthood (Cunningham, 1995), and individuals were placed out of the home in preindustrial times around the time of puberty. In addition, our closest relatives from an evolutionary perspective, primates, evict their offspring from the family dwelling at puberty if they have not left on their own (Steinberg, 1987). However, the current trend is for individuals to delay leaving home (Garber & Dubas, 1996). Cote et al. posited unemployment and low wages as reasons for this change. Further, leaving home is not the tradition in some family cultures. Many families have a tradition that family members with and those without disabilities continue to live in the parental home even after they become adults (Turnbull & Turnbull, 1996).
The independent supported living movement provides for a more normalized transition for those who choose to move from the family home. The independent supported living model emphasizes personal choice, empowerment, and having the person with the disability's name on the lease agreement or deed. However, individuals who need care 24 hours a day often do not experience an increase of choice-making opportunities (Stancliffe, 1997).
The image of a life in a group home or institution is not a popular or pleasant one for many parents to foresee. Because I had such strong fears about where Cassandra would live as an adult and who would take care of her, I avoided envisioning that part of her future. I did not avoid preparing for it, just envisioning it. As parents, we do daily activities that help our children envision a positive future for themselves. The areas of moving out and employment are discussed and imagined by typically developing youth from a very early age. While Cassandra was growing up, her relatives and I periodically discussed future employment opportunities with her by making such comments as “Boy you sure are good with music; maybe you would like to work in a music store.” These types of comments always elicited a smile from Cassandra. When Cassandra was 16, I asked her if she would like to live in an apartment. She responded with a definite shudder and a head shake indicating no.
I have failed to assist my daughter in envisioning herself in her own home. In retrospect, I cite two important reasons for this failure. First, my knowledge of the opportunities for people labeled severely mentally retarded consisted of Intermediate Care Facilities for the Mentally Retarded (ICFs-MR) and group homes. These two options were too dismal and devaluing for me to comfortably envision. Second, envisioning a positive future for Cassandra years ago, when she was younger, elicited an unflattering response from professionals. I was seen as unable to accept my child's disability. I do accept her disability but not the way society treats individuals with her level (or any level) of disability. I wish I had had more knowledge about the redefining of autonomy and the independent living movement when Cassandra was 2 years old. That knowledge would have given me the courage to give her the dream of independence and the resources to defend my position.
I believe in honoring Cassandra's choices, regardless of why she makes her decisions. If Cassandra wishes to remain in our family home, I would like her to have that opportunity. We are in the process of interviewing personal care assistants to render in-home supports. As I become less able to care for Cassandra, I would like to increase the amount of supports she receives. After my death, if Cassandra is unmarried, I would like her to have a relative who does not have a disability or a family friend for a roommate. This could be one of her many step-cousins. I do not wish the roommate to be responsible for assisting Cassandra with her daily living skills but simply share her house. I would like for the relative without disabilities to have friends over and simply be at home in a comfortable setting.
The neighbors know and like Cassandra and would immediately report any suspicious treatment of her. I could ensure this safeguard by informing all the neighbors of the appropriate steps for reporting abuse. I feel more comfortable with Cassandra living in a familiar neighborhood with friends and neighbors who are already aware of what to look for and how to report abuse.
Although having Cassandra remain in the family home may seem overprotective, this is a common occurrence in my family. My house was built next to my parents. Three of my cousins in another part of Florida are neighbors, and one lives next to his mother (he moved and built his house first, then his mother moved in next door.) I come from a very close family. In addition, several of my neighbors built houses next to their parents. If Cassandra chooses to live in our home instead of a romantic cottage on the beach, she would be following family tradition. However, as Cassandra matures and experiences more opportunities, she may opt to move to her own apartment with supports. The important issue is for Cassandra to have choice.
As stated earlier, our goal in this article was not an attempt to create a map for others to follow, nor was it intended to be a concrete, rigid formula for Cassandra's adult life. This article is our attempt to be thoughtful and creative about adulthood and an attempt to be imaginative and to set the foundation for acting on one's dreams. The deliberations we have emphasized reveal society's devaluing assumptions about people with severe cognitive impairments. Devaluing assumptions can be restrictive and hurtful for people with severe disabilities and their families. They have caused a climate of opinion that treats people with severe cognitive impairments as non-adults and as unequal to their peers without disabilities. The current circumstances in which youth with disabilities transition to adulthood can cause monumental questions, concerns, uncertainties, and stress for families. In this article, we have attempted to highlight some of these areas. We hope that these deliberations about adulthood and disabilities, along with the personal reflections and anticipations regarding Cassandra's transition and future adult life, contribute to a dialogue in the field that will lead to increasing examinations about society's underlying assumptions and the creation of new options for people with significant disabilities.
NOTE: The authors acknowledge Cassandra D'Amario for her extensive and special contributions to this article. Preparation of this manuscript was supported by the NIDRR Rehabilitation Research and Training Center on Positive Behavioral Support (Grant No. H133B980005) and by the Florida Center for Autism and Related Disabilities. However, no endorsement by any agency of the views expressed in this article should be inferred.
Authors:Barbara Jordan, MS, Doctoral Candidate, andGlen Dunlap, PhD, Director, Department of Child& Family Studies, Division of Applied Researchand Educational Support at the Louis de la ParteFlorida Mental Health Institute, University ofSouth Florida, 13301 N. Bruce B. Downs Blvd.,Tampa, FL 33612–3807.