SESA - Spring '02 Reference Shelf - Sexuality and Puberty
By James K. McAfee and Pamela Wolfe
Background and Concepts
Webster’s New World dictionary defines consent as “to give assent
or approval.” In the context of sexuality and persons with cognitive
disabilities, the issue of consent is clearly intertwined with the legal
issues of competence and protection from abuse and exploitation. The latter
point is especially critical when we consider the fact that solicitation
for prostitution is one of the most common crimes with which persons with
developmental disabilities are charged and sexual abuse of persons with
developmental disabilities is a pervasive social problem. The court in Gray
v. Grunnagle (423 Pa 144, 1966) defined consent as “an act of reason,
accompanied with deliberation, the mind weighing as in balance the good
and bad on each side. It means voluntary agreement by a person in the possession
and exercise of sufficient mentality to make an intelligent choice to do
something proposed by another.”
Lest we view persons with disabilities only as the objects of sexual offers,
sexual consent must be examined in three forms: (a) the right to say no
to a request from another, (b) the right to say yes to a request from another,
and (c) the right to initiate a request. The three aspects may be viewed
in an educational and developmental sense. First, individuals learn how
to protect themselves from predatory, inappropriate or undesired advances.
Second, individuals learn about entering into voluntary relationships that
may have sexual elements. Finally, individuals learn how to initiate interpersonal
relationships that may have sexual elements.
Consent includes three components (a) knowingness – having sufficient
information about the nature of the proposal of the other, (b) voluntariness
– absence of coercion either positive (unreasonable inducement) or
negative (threats of loss), and (c) competence – the ability to use
the knowledge and consider outcomes (potential consequences and strategic
thinking about short and long-term possibilities) (Burgdorf & Spicer,
1983). The complexity of consent is further multiplied by the vagaries of
law. According to Mezer and Rheingold (1962) there are over 100 legal definitions
of competence. Determinations of competence are influenced by age, physical
and mental capacity, and situation.
Obviously, the age variable in competence to consent is determined for the
most part by statutory law. Thus, states promulgate standards for the age
of consent. The second concept – capacity – is ever changing because
better and more effective education, combined with opportunity to practice
decision- making, has resulted in higher estimates of capacity. This change
is evidenced in the abrogation of statues that formerly permitted wholesale
sterilization of classes of citizens (persons with mental retardation, epilepsy
and other disabilities) merely because they belonged to the class.
Today, it is unlikely that a statute would stand the tests of discrimination
on the basis of disability if it automatically permitted denial of self-determination
rights to a class of citizens (i.e., those whose IQ is below a predetermined
cutoff). Capacity decisions are more appropriately made on the basis of
the individual’s experience, history and performance in the face of
similar consent demands. Furthermore, determination of capacity to consent
is temporal. It is amenable to instruction and learning. Statutory definitions
of capacity to consent vary widely from state to state, but generally include
understanding the physiological nature of the act and/or understanding the
moral nature of the act (Slavis & Walker-Hirsch, 1999).
Finally, situational considerations are critical to analysis of the need
for external interference (i.e., control by parent, guardian, agency or
court) in the individual’s freedom to consent (or to deny consent).
The AAMR (formerly the American Association on Mental Retardation) published
a small text entitled A Guide to Consent in which Slavis and Walker-Hirsch
outline the situational aspects of consent to sexual activity. According
to Slavis and Walker-Hirsch, professionals must develop a balance between
traditional roles as protectors of persons with developmental disabilities
and their more contemporary roles as advocates for the right to exercise
choice. This balance is ever-changing because of changes in mores, laws
and knowledge about the ability of persons with developmental disabilities
to make reasonable choices.
The right to make choices about sexuality and sexual expression is interpreted
as a privacy right from the Bill of Rights. Furthermore, the AAMR 1992 redefinition
of mental retardation emphasizes the need for varying levels of support
to move individuals toward greater autonomy. Thus, capacity to consent is
dynamic, situational and modifiable. Slavis and Walker-Hirsch provide a
hierarchical analysis of sexual situations upon which differential standards
for capacity to consent may be based. At the lowest level are those activities
that are not generally regulated. This includes solitary activities (masturbation
and access to certain erotic material) and pre-sexual activities such as
dancing and friendship.
The issues for professionals at this level are appropriateness (e.g., public
masturbation) as opposed to potential for harm. At this level, familial
and professional intervention is appropriately limited to teaching the appropriate
choices for time, place and circumstances. At the next level are activities
that involve mutual consent, for example, activities such as petting and
sexual stimulation by another. At this level, the appropriate role of professionals
includes the instruction in the aforementioned appropriate choice for time,
place and circumstances and the development of understanding that both persons
enter into the relationship freely, may withdraw freely, and that neither
has the right to offer inducement or threaten harm as a means of initiating
or sustaining the relationship.
At the highest level of consent are those activities for which potential
outcomes threaten safety. The primary activity at this level is sexual intercourse.
Potential damaging outcomes include pregnancy, sexually transmitted diseases
(STD), and criminal charges (for prostitution, pandering, rape, and assault).
At this level, professional and family members must consider appropriate
choice of circumstances, mutuality, and the ability to act safely and legally.
The last two components, safety and legality are most complex. Therefore,
capacity to consent to sexual intercourse is measured by the individual’s
demonstrated behaviors related to appropriate birth control and reduction
of STD risks. Capacity is also related to understanding the legal restrictions
placed on sexual intercourse. These include sex for compensation (prostitution),
pedophilia (sex with a minor), involuntary sex (rape and assault), public
sex (indecent and lewd behavior) and statutory restrictions on sexual relations
with a person who doesn’t have the capacity to consent.
Assessing Capacity to Consent
Slavis and Walker-Hirsch offer a list of 23 dimensions on which capacity
to consent should be assessed. They include: knowledge of sexual activities,
understanding of wrongful sexual behavior, understanding of rights, understanding
of consequences of sexual behavior, understanding of mutuality, ability
to seek assistance and understanding appropriate context for sexual behavior.
The reader is directed to the discussion in the Slavis and Walker-Hirsch
chapter for more details.
Programming for Capacity to Consent
The capacity to consent is developed over an extended period of time. For
persons who do not have cognitive disabilities, the legal assumption is
that the capacity is developed upon reaching the age of majority (generally
18). Obviously, some individuals may achieve the capacity (meaning understanding)
to consent earlier than 18. However, the law provides few exceptions (marriage).
In contrast, some individuals may never demonstrate the behaviors indicative
of responsible sexuality. They may engage in risky behavior although they
understand the risks or they may never fully understand the risks.
Professionals, family members and persons with developmental disabilities
who seek to improve capacity to consent and, hence, expand the array of
sexual experience must realize that development of capacity to consent begins
in infancy. It arises from experience, experimentation, explicit instruction,
incidental learning and the positive reinforcement of success and the lessons
of failure and opportunity try again. Thus, it would be foolish to develop
a capacity/consent curriculum that is implemented only upon attainment of
adolescence or adulthood. On the other hand, to expect sexual competence
to arise in the absence of instruction is even more imprudent.
Schweir and Hingsburger (2000) describe the development of sexual competence
for persons with intellectual disabilities. The text is specifically designed
for parents of persons with intellectual disabilities, but the content is
at least partially adaptable to professional instruction. Their text progresses
through developmental experiences that enhance sexual competence and hence
capacity to consent. Topics include modesty, peer pressure, homosexuality,
abuse, saying no, marriage and family, and financial and legal consequences.
Not all persons with intellectual disabilities have had the opportunity
to develop sexual competence through a natural developmental process. In
fact, based upon widely reported criminal statistics, we know that persons
with intellectual disabilities are often prosecuted for sexual crimes that
indicate lack of sexual competence (see for example, Shapiro, 1986). Thus,
more formal programs are required and it is beyond the scope of this article
to detail such programs. The content is relatively easy to identify. The
aforementioned list of 23 areas provided by Slavis and Walker-Hirsch is
certainly a good foundation for a curriculum. However, good content is a
necessary but insufficient condition for development of capacity to consent.
Additional essential conditions include opportunities to practice newly
learned behaviors in appropriate contexts and assessment of understanding.
Obviously, privacy needs preclude direct observation and feedback and some
individuals may choose not to engage in sexual activity. Discussion of situations,
group analysis of appropriate responses to sexual situations and individual
follow up to difficulties are effective procedures.
Over the past 30 years, the authors have had the opportunity to be involved
in several programs designed to promote self-determination. In one such
program, Linda, a 32 year old woman with a mild intellectual disability
sought emancipation from a program and from a guardianship that had been
enacted during her early adolescence. At a competency hearing, her sister
(who was her guardian) challenged Linda’s capacity. The primary point
of contention was Linda’s capacity to consent to sexual activity. This
was especially critical because Linda had announced intent to marry. Linda’s
responses to the judge were articulate, specific and to the point. One question
put to her was, “What will you do if you become pregnant?” Linda’s
response shocked most of those in attendance. She stated, “That is
not a concern because my sister had me sterilized when I was fifteen!”
A check of medical records indicated that Linda’s response was accurate.
Her response also indicated that she had knowledge of her own sexual situation
beyond that which others anticipated because to the best of our knowledge,
none of the professionals working with Linda were aware of her state. Linda’s
sister testified that she had never told Linda about the purpose of the
surgery. The culminating exchange in the hearing was one in which the attorney
for the sister attempted to downplay Linda’s apt responses by asking
her if she had been coached. Linda’s response was, “I have been
taught, and I have learned.” Linda’s emancipation was granted.
Conclusions
Consent to sexual activity is a complex legal, social, behavioral and instructional
issue. Professionals, parents and persons with developmental disabilities
who are interested in improving capacity to consent should:
• Understand the legal nature of consent.
• Understand the differing situational demands for capacity to consent.
• Teach sexual competence throughout development.
• Understand that risk must be balanced with opportunity to grow.
• Provide increasingly complex opportunities for choice.
• Provide opportunities for feedback and analysis of choice including
legal, financial, and strategic consequences.
• Maintain documentation of criteria used to determine capacity to
consent.
• Maintain documentation of intervention and educational efforts.
• Include family and persons with developmental disabilities in the
development of policies, curricula and implementation.
Permission to reprint granted by TASH. For more information: 29 W. Susquehanna
Avenue, Suite 210, Baltimore, MD 21204; Tel:(410) 828-8274; Web site at
http://www.tash.org
Back to top
