Sex, Disability and the DSP: Ethically Supporting Sexual Choices
by Samuel Arnold and Alexina Vincent-Pennisi
Direct Support Professionals (DSPs) have a rewarding, though at times challenging, role to fulfill. Challenges can be found particularly around support relating to sexuality. Perhaps this is because sex is often still a taboo subject for many people, and because of the contrasting values and beliefs different people have towards sexuality. And perhaps it is also due to the many myths regarding sexuality and disability, such as beliefs that people with disabilities are asexual or are incapable of having an intimate sexual relationship.
In response to this challenge we wish to propose nine general pointers for DSPs to consider about supporting a person's sexuality and sexual choices. They are based on the premise that for the vast majority of people with a disability, there is very little difference, if any, between sexuality as they experience it and sexuality as experienced by a person without disability. The pointers are as follows:
You don't have to have all the answers; get to know local support services. If concerns regarding sexuality arise that are beyond your expertise or knowledge, and cannot be solved through simple education or a supportive conversation, talk with your agency or organization. As part of the person's support team you may help to develop strategies to address the person's sexual support needs as part of their Individual Support Planning (ISP) process. If the person requests and consents to support in this area, in collaboration with your organization a strategy may be to seek out the services of a local sexual health clinic, sex therapist or other health professional. You may be able to locate a professional who specializes in sexuality for people with disabilities. There are also many simple educational materials and pamphlets available. Often providing some information in a format that can be understood is enough to manage difficulties that may arise. There may also be sex education courses that the person is interested in attending.
Be sensitive to other people's values and beliefs. Sexuality can be a sensitive subject when there are so many conflicting cultural, religious, and personal differences relating to it. For example, some religions strongly believe in not having sex before marriage. Spend time with the person you support finding out what their beliefs about their own sexuality are. Be aware of your own values and beliefs, and do not impose these on the person you support. If the person's values and your values are in conflict, then you may not be the appropriate DSP to provide support to the person in this area.
Know whether the person is able to give informed consent for sexual activity. Sexual relationships need to be consensual. A person needs to know and understand the relevant information in order to make an informed decision. Consent needs to be given freely. A person cannot be pressured to make a decision, and needs to understand the possible consequences for this decision to be considered as valid, informed consent. People need to be of a certain age to give informed consent relating to sexuality, which varies depending on your location. Some people may have or need a legal guardian or conservator who may need to be consulted before providing support relating to sexuality. Talk with your organization if there are concerns about the person's capacity to give consent, or concerns that a person has been pressured to give consent.
Be aware of ethical guidelines, particularly privacy and confidentiality. Respect for the privacy and the confidentiality of information in relation to individuals you support are key issues in ethical guidelines for DSPs. For example, if the person you are supporting is an adult, and they tell you something about their sexuality or intimate relationships in confidence, then it is not acceptable for you to share that information with the person's parents or a colleague unless you have the person's consent, the person or others are at risk of serious harm, or the guardianship arrangement for the person makes sharing with a guardian appropriate.
Be aware of organizational policies and local laws. It is first of all important to know the boundaries of your job description and the policies of your organization regarding assisting someone to engage in different kinds of sexual activities. It is also important to know the legal implications for some of the choices the person you are supporting might be faced with. For example, facilitated sex, that is, providing physical support so that a person can engage in sex, may or may not be within the scope of your job description, and may or may not be legal in your state. Possessing certain types of sexually explicit materials may be illegal, and if you facilitate access to an illegal activity, then you could be in trouble with the law as well. It is advised that you consult with your employer regarding your role as a DSP in providing support for specific sexual activities.
Support the development of intimate relationships. Intimate relationships, for many people, are one of the most rewarding parts of life. For some people with disabilities, developing an intimate relationship can be more difficult. For example, a person living in a group setting may not be able to invite a partner over for dinner without having to share the kitchen with their co-residents. Some people even have to share their bedroom with a co-resident. You may want to facilitate opportunities for privacy, such as support to have dinner at a restaurant or to go on a holiday, so that the couple can have time to themselves. You may also want to facilitate opportunities to meet new people, which can lead to relationships, such as attending social groups or leisure activities. Many people use online dating, though they may need support to be aware of possible dangers in meeting people online.
Support safe sex. If a person is engaging in sexual intercourse, you may want to check if the person knows how to have safe sex. For example, you may want to ask, "Do you need me to support you to purchase condoms?" If a person doesn't know about safe sex, there are many educational materials available to help. You don't have to teach the person about safe sex if you are not comfortable doing this, but it is important to address this need in the person's ISP, which may include seeking out support from a sexual health clinic or other health care provider.
Sexual aids can be helpful. For some people, things like "sex toys" (assistive sexual devices) or sexually explicit literature can be very enjoyable. For a few people with certain types of physical disability, using a sex toy may be one of the few ways that they can enjoy sex. If your job description, agency policies, and local laws allow, you may be asked to support a person to purchase materials or sex toys. A person may need to be taught about the appropriateness of some activities, such showing explicit materials or sex toys to others. They may additionally need education about safe and hygienic use of sex toys; if a person needs such sexual education, ways to address this need should be identified through the Individual Support Planning process.
Sexual health checks are just as important for people with disabilities. Remember that regular pap smears, mammograms, and testicular checks are just as important for people with disabilities as they are for people without disabilities. It is important that these checks are part of a person's regular health exams. If their current health care professional is unwilling or unable to provide such checks (for example, some health care providers may be unfamiliar with strategies for giving mammograms or pelvic exams to women with certain types of disabilities) you may need to help to advocate for the person and may be asked to work with their care team to connect the person with a health care provider who can provide these exams.
Finally, remember that most people with disabilities enjoy sexual activity and will start to develop their own sexuality at the same chronological age as people without disabilities. Sexuality will continue to develop over the course of the person's lifespan and will be as diverse and colorful as it is for any other person in the community. Knowing that a person is enjoying their sexuality or a healthy intimate relationship can be very rewarding, particularly if you have been part of supporting this to be a possibility.
Samuel Arnold is a Research Fellow and Analytical Psychologist with the Centre for Disability Studies, University of Sydney, Sydney, Australia. He may be reached at firstname.lastname@example.org or +61-2-8878-0500. Alexina Vincent-Pennisi is a Case Management Consultant with Ability Options, Sydney. She may be reached at email@example.com or +61-2-8811-1777.
Retrieved from the Web site of the Institute on Community Integration, University of Minnesota (http://ici.umn.edu/products/impact/232). Citation: Fager, S., Hancox, D., Ely, C., Stenhjem, P., & Gaylord, V. (Eds.). (Spring/Summer 2010). Impact: Feature Issue on Sexuality and People with Intellectual, Developmental and Other Disabilities, 23(2). [Minneapolis: University of Minnesota, Institute on Community Integration].