Like Ethnicity, Gender, and Sexuality

Like ethnicity, gender, and sexuality,

disability is simply one of many

characteristics of being human.

When I see people with disabilities marry, I recognize that the march to the alter to stand before God is long. They must march past societal bigotry, family disapproval, religious intolerance, and agency dictates…

Dave Hingsburger

(IMPACT feature issue)

The Colorado Developmental Disabilities Council (CDDC) advocates in collaboration with and on behalf of people with developmental and intellectual disabilities for the establishment and implementation of public policy that furthers independence, community employment, and full inclusion into every aspect of life.

The D.D. Council is committed to including people with disabilities in all areas of community life. The Council works toward system change via public policy as well as building capacity and grant making. The Developmental Disabilities Council is comprised of a 24- member body appointed by the Governor, with a 60% representation of people with disabilities and their family members.

The Council’s values concerning sexual expression are the same for people with disabilities and the general public. Because there are often misconceptions and fears around discussing the topic of sexual expression, the Council has chosen to update its policy on sexuality with the hope of increasing not only awareness of rights, but also of increasing communication and discussions of the topic in families, schools, and provider agencies (referred to in this document as the “support team”) that support people with disabilities.

This policy was developed to provide guidance and to affirm, defend, promote and respect the inherent sexual rights and basic human needs for all people living in Colorado, including people with disabilities.

The Council supports the following for people living with disabilities:

► Living in one’s own home or apartment, not a nursing or group home owned by a service provider agency;

► Real jobs with real pay and benefits, not piecework for a human service agency at sub-minimum wages;

► Students attending their neighborhood school in general classrooms rather than in separate classrooms only for students receiving special education supports;

► Public transportation rather than special busses going to special places;

► The use of recreational activities/facilities that everyone has access to such as the YMCA or Parks and Recreation, rather than segregated activities or Special Olympics.

WHY IGNORING ‘THE’ ISSUE CAUSES HARM

Dave Hingsburger, in his book, Just Say Know, related the story of a young man who lived in a group home and fell in love with one of his housemates. They arranged to have consensual sex downstairs when staff was routinely busy with tasks upstairs that did not involve them. The couple looked forward to spending time together at the group home as well as the workshop during the day. When staff found them having sex in the basement, the staff pulled them apart and the next day the young woman was immediately moved to another home and was found other work. What did the individuals learn from this? That all sex is wrong, that there is no time or place that is appropriate, no individual with which sex is an OK expression of affection, and that sex is something to avoid talking about and doing. Sex is to be punished and never to occur under any circumstance. This loss of ‘figure-ground’ leaves a person with a disability unable to distinguish from ‘good sex’ and ‘bad sex’. There is no context in which to discuss the topic, much less grow and develop as a result of experience and discussions. The young man developed behaviors of staring at anyone of the opposite sex and going into a fantasy world. Staff noticed this behavior and thought he might be a pedophile and referred him to Mr. Hingsburger along with a rather large file of suspicions about his alleged pedophilia.

Lucky for the young man, Dave Hingsburger is very skilled and did not refer him on to the criminal justice system for a life of prohibitions and a suspension of his rights.

There are two tragic consequences to this all too common approach. The first is that the individual who knows there is no appropriate time, place, or person still has a desire in need of expression and someone may assault someone unnecessarily. The second is that the person who gets assaulted will rarely tell and view him or herself as being involved in something that was terribly wrong and sinful. In short, oppression and avoidance of sex will lead to the oppression of natural desire and behavior and lead to other much more serious problems. Obtaining legal guardianship will not stop the sexual act from occurring in our children. The denial of appropriate relationships by any means robs people of the ability to discriminate between that which is acceptable and that which is not. Choice making is too often a foreign concept. People who are victimized will fear being punished for doing something sexual and therefore will not come forward.

PHILOSOPHY ON SEXUALITY

Sexuality is a basic biogenic need and integral to the way a person relates to their world. Much more than sexual activity, sexuality encompasses self-perception, self-esteem, personal history, personality, concepts of love and intimacy, orientation, and body image. Every person is a sexual being with inherent and basic human needs, including sexuality.

We are all sexual beings growing up with individually determined values of family, culture and community. Each of us deserves to have the opportunity to love and be loved and, as consenting adults, to establish relationships with the people we choose, and to express our sexuality. Support personnel, whether they are family or community support providers, can benefit from information and training to assist people in developing healthy and functional expressions of sexuality.

People living with a cognitive or developmental disability have the right to:

► develop self-identity, self-esteem, and self-respect;

► make choices regarding healthy and safe relationships and sexual expression;

► be supported to make informed choices;

► grow up and be considered an adult by their family and support team;

► be treated with respect and dignity;

To be supported in their decisions about sexual relationships through a person-centered process;

► have the support they need to meet their goals and aspirations, including sexuality and relationships.

To ensure this happens, the support team will:

►Value the voice of, and advocate for the rights of, people living with cognitive and developmental disabilities.

► Support and advocate with families.

► Promote inclusion.

► Involve people in decisions about their own lives.

► Provide support that promotes self-development and independence.

► Treat people and their families with respect.

► Respect the cultural, family, and community values of each person and their family.

POLICY STATEMENT ON FRIENDSHIPS AND RELATIONSHIPS

People living with a cognitive or developmental disability have the right to develop and participate in relationships and to determine the nature of their relationships.

While some individuals may need support in developing and maintaining friendships and relationships, others will not. Relationships may be physically affectionate and/or sexual. All people have a right to be physically affectionate with an agreeable party.

The support team will:

► Ensure that people are afforded the opportunity to choose friends and partners outside of their homes and to entertain friends and partners in their homes;

►Ensure that people are given support and education on how to develop the kinds of relationships that they desire;

► Acknowledge and honor all relationships that individuals may wish to have as long as there is not harm, abuse, or exploitation;

► Consistently support the right of individuals to have relationships in the manner that they feel most comfortable;

► Respect people’s right to make mistakes in relationships as long as they are not unduly hurt, exploited or harmed;

► Support people living in residential services who choose to invite friends and partners to visit and/or stay over as long as the health and safety of themselves and others is ensured

► Support people to understand their responsibilities within relationships

POLICY STATEMENT ON SEXUAL EXPRESSION

All people have sexual feelings and a right to sexual expression, including the rights to develop sexual relationships and to express /their sexual identity and orientation.

People with a developmental disability have sexual feelings and the right to express those feelings in a responsible manner.

The support team will ensure that:

► There are private environments in residential settings where people are free to express emotional and sexual feelings alone or with a consenting partner;

►All people shall have the opportunity to decide upon and express personal variations in sexual expression (e.g. celibacy, masturbation, homosexuality, bisexuality, transgender, heterosexuality);

►People can express their sexual feelings in a way that will not cause undue harm, abuse, or exploitation to themselves or others.

POLICY STATEMENT ON PRIVACY

All people shall have the right to privacy in seeking guidance and support in matters relating to their personal lives. They shall also have access to privacy for engaging in physical affection or sexual expression with another consenting adult of their choice.

People with developmental disabilities, like all United States citizens, enjoy the right to privacy provided by the US Constitution. Exercising one’s fundamental right to privacy includes the ability to engage in consensual sexual activity, purchase and use contraceptives, marry, procreate, and refuse medical treatment.

The support team will ensure that:

►People will have the opportunity to discuss sexuality with the people of their choice and in a setting that is comfortable for them, whether the conversation is happening on a formal, informal, or private level;

► Personal or intimate sexuality issues are not discussed in group settings (i.e. Individual Plans, etc.) only at the discretion of the person. Support team consultations with other professionals may only occur with the permission of the person;

►Any information pertaining to sexuality, including Sexually Transmitted Infections, is kept in a separate file for privacy and confidentiality;

► Opportunities to privately pursue sexual expression either alone or with another consenting adult shall be provided.

► Sexual expression and choices of people to be sexual with are private and subject to the same rules of confidentiality as other matters.

POLICY STATEMENT ON SEXUAL BEHAVIORS

All people have a right to their sexual expression providing it is not illegal or imposed upon others.

People with cognitive and developmental disabilities may be more likely to be charged with a crime compared those without disabilities whenever illegal sexual activity is reported. This may be due to an inability to hide behaviors as well as others do. Additionally, people with disabilities may not realize their behavior is unhealthy, hurtful, or illegal because of a lack of education and experience with appropriate social expression of sexuality or general decision-making. Frequently, others who do not know the individual well may misinterpret their behavior.

► Ensure that there is support for people who have difficulty understanding boundaries relating to sexuality;

► Adhere to the understanding that any behaviors that are not illegal are to be allowed if all parties are consenting and no apparent undue harm, abuse, or exploitation is indicated;

► Ensure that the purchase of stimulating materials or sexual toys is completed in a discreet manner

►Persons are provided with physical assistance and/or adaptations, when necessary, for purposes of sexual expressions and activity;

►People who have maladaptive sexual behavior or sexual dysfunctions have access to meaningful education and support.

POLICY STATEMENT ON MARRIAGE AND PARENTING

All people have the opportunity to participate in commitment ceremonies, marry, and/or have children.

People have the right to make informed choices about committed relationships, their reproductive health and child bearing.

The support team will ensure that people:

► Will receive education and information that supports their informed decision-making in committed relationships including personal counseling and benefits counseling;

► Are educated about their reproductive health, including protection from Sexually Transmitted Infections;

► Have regular medical support and check-ups relating to their reproductive health;

► Have unbiased and adequate information regarding contraception options and side effects to support informed decision making about the use and selection of contraceptives,

►Have access to the contraception or family planning method of their choice;

► Will receive education and information about having and raising children that is individualized to reflect individual abilities to understand;

►Will make their own decisions related to having and raising children with supports as necessary;

►Are supported to be the primary decision maker when deciding upon vasectomy, tubal ligation, or hysterectomy.

POLICY ON ACCESS TO EDUCATION AND SERVICES

All people have the right to access information, education, resources, support and services in a form they can understand and relate to.

Sexuality education and services are not limited to biological issues alone, but should also reflect the holistic nature of human sexuality.

The support team will ensure that:

►Education and training is available and individualized to meet the person’s needs and level of understanding. It should include the opportunity for actual practice, role play or assisted experience, or mentoring whenever possible;

► Education and training can include such topic areas as: puberty and adolescence; dating, relationship building, social skills including public and private considerations, decision making, values clarification, birth control, safe sexual practices and family planning, premarital and marital counseling, childbirth education and parenting, and awareness of laws relating to sexual expression.

► Specialized counseling is available to people interested in marriage and/or parenting, and on-going support and assistance is provided to couples;

►Information is provided on sexually transmitted diseases, including prevention, consent for testing, treatment, and rights to confidentiality;

►Training in self-protection and avoidance of exploitation is available. This includes assertiveness training, learning how to say “no”, reporting incidents of abuse and exploitation, and self-defense training.

►People are provided training in the appropriate and safe expressions of personal sexuality including masturbation and the use of sexual toys;

POLICY ON: SEXUAL ABUSE AND EXPLOITATION PREVENTION

All persons have the right to receive training and supports to learn how to avoid being exploited.

POLICY STATEMENT ON CONSENT

Adults living with cognitive or developmental disabilities have the right to make their own decisions about relationships.

A person of legal age and with the ability to give consent has the right to be sexually active in a way that is appropriate and safe for them and their partners. Family members, guardians, staff, or other interested parties can neither consent nor deny the right to sexual expression of a person living with a cognitive or developmental disability. Consent laws are in place to protect individuals from coerced sexual acts; however they should not deny two consenting adults the ability to enjoy a relationship to its fullest sexual potential. If a person is engaging in sexual behavior that causes undue harm, abuse, or exploitation to him/herself or partner, then efforts will be made to understand the behavior and to support the person to engage in healthy sexual activity.

Support teams may assist the person to access improved social opportunities, assistive technology, practice in decision making, or environmental changes that re-direct a person towards a lower-risk activity that he or she can manage right away (holding hands, dancing, going out to eat, etc.) until they have gained the needed skills. (Luckassen & Walker-Hirsch).

(See Appendix 3: Consent and Guardianship for additional information).

The support team will ensure that:

► All people are given the opportunity to make decisions about their own lives.

► When a person is unable to consent verbally other means of seeking consent are used such as pictures, symbols, signs, or other assistive technology.

GUARDIANSHIP

Guardianship does not preclude an individual with a disability from having sex, as some guardians may hope. There are many ways of supporting an individual in lieu of obtaining full guardianship and in the process, restricting rights. In the past, total guardianship was the norm; now people with disabilities and their families are beginning to consider partial guardianships and/or assigning power of attorney. Establishing a guardianship may remove considerable rights from an individual and should only be considered after alternatives to guardianships have proven to be ineffective or unavailable. If a guardianship seems necessary, it will be important to consider what the guardian will have control over—where the youth will live, who he or she can see, what level of intimacy a person may pursue, if the guardian will authorize or prevent access to contraception. A court must authorize any guardianship for an adult.