Policies affecting sexual expression for those with ID
According to the Arc and the American Association on Intellectual and Developmental Disabilities, “People with intellectual disabilities and/or developmental disabilities, like all people, have inherent sexual rights. These rights and needs must be affirmed, defended, and respected” (Arc & AAIDD, 2008). Sexual expression for people with intellectual disabilities (ID) is a dividing topic, with general attitudes ranging from paternalistic and over-protective to permissive. Both of those dichotomic views are based on concern for the well-being of those in the ID population. It is a fact that a person with ID is significantly more at risk for sexual assault and abuse than those in the typical population (UWOSH, 2008), but the UN has also acknowledged universal right to sexual determination (Economic and Social Council, 1994). Seeking balance and acknowledging the concerns surrounding coercion and abuse, there is a movement within the care community and in legal statutes that recognize the autonomy of people with intellectual disabilities regarding their sexual habits.
Regardless of where on the spectrum one’s opinions may fall, it is important to address some facts before determining the best course of action. It is estimated that between 70% to 90% of people with ID will experience sexual exploitation, abuse or assault in their lifetime (DPPC, 2011). Of these, 49% will be victimized more than 10 times (DPPC, 2011). When looking at the perpetrators of abuse, 91% of perpetrators fall into the categories of friend, family or caregiver (UWOSH, 2008). Looking at these statistics, the reactionary position of limiting consent is sympathetic.
While looking at concerns about sexual safety for those with ID, it is necessary to debunk the myth that people with ID are asexual or childlike. In the Swedish Life and Health: Young People 2005 and 2007, data supported that teens with disabilities were more likely to engage in sexual activity than their typical peers. The data also indicated that teens with disability had an earlier sexual debut. With the possibly conflicting messages that people with ID are sexually naïve and cannot consent to sexual activity but also are sexually active, it is important to assess the state of policy at the agency, state, and federal levels.
Martin Lyden opens his article, Assessment of Sexual Capacity to Consent, thusly. “There is a presumption in American law that an individual has the prerequisite capacity to engage in a sexual relationship once he/she reaches the age of consent. An adult is entitled to all of his or her rights and privileges under the law, unless limitations are imposed by a court of law or by a professional judgment acceptable under the law” (2007, p.3). In light of the precedents set in Roe v. Wade (1973) and In re Moe (1991), this indicates that once a person with ID reaches the age of consent for their locale, they have the legal right to consent to sexual activity.
With legality falling consistently on the side of self-determination for people with ID regarding their sexual lives, where is the breakdown between law and practice occurring? “Too often program staff members are confused as to how to balance the issues of rights versus protection in sexual matters for the people they serve, and many agencies are reluctant…to set clear policies in matters of sexuality” (Ames & Samowitz, 1995, p. 264). The lack of official support on behalf of provider agencies is mentioned in much of the literature as the primary interruption between the ideal of supported sexual decision making and the paternalistic, overprotective reality.
In revisiting the state of sexual determination since beginning his advocacy work, Perry Samowitz said, “Recently I was at a meeting with a number of psychologists and other staff members from a state system who said that they did not want the mentioning of sexual issues in a curriculum that will support people with ID/DD. They didn’t want ‘to open that can of worms.’ When I asked why, they just laughed and said it was better not to go in that direction. Yet people with ID/DD have sexual needs that if not fulfilled have resulted in unhappiness and sometimes aberrant behaviors” (IMPACT, 2010, p. 18).
This attitude is echoed in many areas of the ID advocacy community. Speicker and Stutel in their ethical examination of the issue of consent to sexual activity between people with ID determined that, for a sexual act to be consented to by both parties, a staff representative must be involved in the consent process.
“The essence of our proposal is that sexual interaction between people who are moderately mentally retarded, and sexual interaction between individuals with mild mental retardation in relatively complex situations, is only morally permissible under adult supervision that is both moral and paternalistic” (2002, p. 165).
In principle, while trying to affirm the right of people with ID to have sexual encounters, Speicker and Stutel add an extra barrier to the process.
Many authors took exception to the moral evaluation by Speiker and Stutel, notably, Stephen Greenspan, a US ID advocate, responded in the journal where the article was initially published.
“It shows a lack of historical sensitivity to write an article calling for a restriction of the sexual rights of people with mental retardation (sic) without acknowledging the century of suffering inflicted by previous sex police, who also—in most cases—believed they were acting in the best interests of the people being controlled” (2002, p. 173) and continues “A major problem with the paternalistic approach to sex is that it denies people with mental retardation (sic) the opportunity to make, and learn from, their mistakes” (p. 176).
Acknowledging the inherent problems in a paternalistic approach to consent between people with ID gives space to those interested examining a best practices approach to facilitating consent.
Greenspan points out that it is unreasonable to expect people with ID to make better decisions about their sexual lives than those in the typical population and that, considering the likely fallibility of those in care positions, allowing them to make decisions in the best interests of the person with ID doesn’t make much sense. Greenspan plainly sums up the general attitude of those who advocate on behalf of sexuality training for people with ID, “the notion that people with mental retardation (sic) are clearly distinct from other human beings is a myth empirically, and deeply offensive philosophically” (p. 175).
Clearly the idea of typically intelligent carers making “best interest” decisions about the sexual lives of those with ID is unpopular, but movements away from this practice are also substantiated within the legal system. In his article about the abortion and sterilization in women with ID, Daniel Pollack addresses capacity to consent defining it as “a client's cognitive understanding of benefits, risks, and voluntariness” regarding a decision (2005, p.253). Regarding a very specific subset of reproductive rights issues, Pollack identifies multiple state level court cases surrounding the Roe v. Wade (1973) decisions which identified termination of a pregnancy as a fundamental human right.
Citing the In re Moe (1991) case,
“Substituted judgment directs that judges base their decisions on what the incompetent person would decide ‘if he or she were competent.’ This doctrine does not imply that the judge has to make the best decision in light of the facts. Instead, ‘[t]he courts. , . must endeavor, as accurately as possible, to determine the wants and needs of this ward as they relate to the abortion procedure’” (p. 720).
If, in the case of an extreme medical and sexuality decision, adjudicated incompetency is deemed less important than the wishes of the person with ID, is it reasonable to transfer this practice onto daily sexual life?
In the US, there are three basic requirements for legal consent:
“(a) knowledge of the important aspects of a decision and its risks and attendant benefits; (b) intelligence, reason, or understanding showing that the knowledge is comprehended and/or is applied in a manner consistent with a person’s values or beliefs; and (c) voluntariness, meaning that a person is not subjected to coercion and understands that there is a choice and he or she has the ability to say yes or no to it” (Sundram & Stavis, 1994, p. 258).
In individual states, these ideals have varying applications. For example, in New York, a person, to be deemed capable of consent, needs to understand the act and consequences along with the moral implications of the act. In neighboring New Jersey, one only needs to understand the sexual nature of an act to consent to it (Lyden, 2007, p. 6)
One of the issues in these assessments of capacity to consent is that it nearly excludes those with profound and severe ID. Ames and Somowitz address this through the lens of assessing individual sexual interaction. They put forth six parameters to determine consent between people who have varying degrees of capability that rely on interpersonal behavior rather than verbal skill to be used in conjunction with knowledge and capacity assessments. The first is that the parties be able to make decisions free from coercion. The next three, avoidance of harm, exploitation, and abuse are interrelated and require awareness on the part of carers. The role of the carer in this case is not to restrict sexual activity, but to make sure that there are not problematic power dynamics that result in coercion.
The fifth parameter is the ability to stop an interactive sexual behavior by saying or indicating no through expressive function or being able to physically leave the situation. While one may find this parameter to be limiting, it could be thought of along the lines of a safe word in BDSM scenes. The final part is that the person be aware of the appropriate context for sexual behavior. To be clear, this is not a moral guideline (e.g. within a monogamous relationship), but rather a physical one that corresponds with things like masturbating in the bedroom rather than on the bus (1995, pp. 266-267).
When discussing capacity to consent, it is important to address the role of guardianship. There is a pervasive myth that all decisions defer to the will of the guardian. The way guardianship is being appointed has changed substantially over the last 50 years, in conjunction with deinstitutionalization, to align with the idea that care is to be provided in the least restrictive manner. It is simply untrue that guardians have the ability to make unilateral decisions on behalf of their wards, especially in the case of sexuality. According to the National Guardianship Association (NGA);
“The guardian shall acknowledge the ward's right to interpersonal relationships and sexual expression. The guardian must take steps to ensure that a ward's sexual expression is consensual, that the ward is not victimized, and that an environment conducive to this expression in privacy is provided” (NGA, 2007, p. 7).
In the section under sexual expression, the standard for guardians is clear—to inform and support, not to hinder and protect. The NGA specifically places responsibility for providing opportunities for access and information to their ward.
Because of this shift in ideology, guardians are beginning to serve the primary function of supported decision making. It is becoming more common for guardians to have limited power and be responsible for a single facet of the person’s life, such as a representative payee or health care proxy. A movement that is slowly gaining ground is for judges to use specific language in the guardianship decree regarding sexuality and limitations on guardian interference (Dinerstein, 2010, pp. 12-13).
Looking at the clear conflict between protection of the person and protection of rights, it is understandable why many agencies and care providers are hesitant put policies in place on either side. Without a policy in place, it is easy to address cases piecemeal and in their varying shades of grey. However, the lack of a strong policy on the side of sexual expression leaves ambiguity. That ambiguity allows for the insidious circumvention of rights under the guise of protection. Because the topic is uncomfortable and delicate, many would prefer to avoid it, and in doing so, put those with ID in danger. By addressing the issue head on with informational and educational support, people with ID would be made less vulnerable to abuse and exploitation.
Arc of the United States & American Association on Intellectual and Developmental Disabilities (2008). Position statement on sexuality. Retrieved 6/30/10 from http://www.aamr.org/content_154.cfm?navID=31.
Brunnberg, E. (2009). Sexuality of 15/16-Year-Old Girls and Boys With or Without Modest Disabilities. Sexuality and Disability, 139-153. Doi: 10.1007/s11195-009-9123-2
Dinerstein, R. (Spring/Summer, 2010). Sexual expression for adults with disabilities: the role of guardianship. IMPACT, 23 (2). Retrieved from: http://ici.umn.edu/products/impact/232/232.pdf
Economic and Social Council: General Comment 5, Implementation of the international covenant on economic social and cultural rights. United Nations Document E/C. 12/1994/13. United Nations, New York (1994).
Greenspan, S. (2002). A sex police for adults with "mental retardation"? comment on Spiecker and Steutel. Journal of Moral Education, 31(2), 171-179. doi: 10.1080/03057240220143278
Lyden, M. (2007). Assessment of sexual consent capacity. Sexuality & Disability, 25(1), 3-20. doi: 10.1007/s11195-006-9028-2
National Guardianship Association (2007). Standards of practice. Retrieved 6/30/10 from http://www.guardianship.org/pdf/standards.pdf.
Pollack, D. (2005). The capacity of a mentally challenged person to consent to abortion and sterilization. Health & Social Work, 30(3), 253-257. Permalink: http://0-search.ebscohost.com.libcat.widener.edu/login.aspx?direct=true&db=aph&AN=17796358&site=ehost-live
Roe v. Wade. 410 U.S. 113, 93 S. Ct. 705, 35 L. Ed. 2d 147 (1973).
Roe v. Wade, In re Moe. In re Moe, 385 Mass. 555, 559, 432. N.E.2d 712, 716 (1982).
Somowitz, P. (Spring/Summer, 2010). A sexuality policy that truly supports people with disabilities. IMPACT, 23 (2). Retrieved from: http://ici.umn.edu/products/impact/232/232.pdf
Spiecker, B., & Steutel, J. (2002). Sex between people with "mental retardation": An ethical evaluation. Journal of Moral Education, 31(2), 155-169. doi: 10.1080/03057240220143269
Sundram, C. J., & Stavis, P. F. (1994). Sexuality and mental retardation: Unmet challenges. Mental Retardation, 32(4), 255. Doi: 10.1016/S0160-2527(98)00033-8
Wisconsin Caregiver Abuse and Neglect Prevention Project. (2008). Sexual Assault Statistics for Older Adults and People with Disabilities. Oshkosh, WI: University of Wisconsin, Oshkosh. Accessed 10/2012: http://www.dhs.wisconsin.gov/caregiver/pdfscenarios/pamelastatcssex.pdf