SUPPORTIVE TOOLS: The Nuts & Bolts for Developing Self Advocates’ Healthy Social & Sexual Lives

1. SUPPORTIVE TOOLS: The Nuts & Bolts for Developing Self Advocates’ Healthy Social & Sexual Lives TASH Webinar Series - March 17, 2010 Presented by: Monica J. Foster, CC BUTTERFLYWHEELSM Motivation, Advocacy & Consulting www.butterflywheel.com

2. Stereotypes of People with Intellectual Disabilities • They are forever childlike • They’re not and never will be interested in sex or sexuality • They are unable to understand sexual desires • They have uncontrollable sex drives • They are always victims • They are potential sexual deviants, and should be denied sex education…it could 'give them ideas' Presented by Monica J. Foster, "The Life Beyond Limits Coach" BUTTERFLYWHEELSM Motivation, Advocacy & Consulting www.butterflywheel.com

3. REALITY CHECK We are ALL sexual beings from the day we’re born… To love yourself, others and be loved is a basic human need, regardless of your intellectual or physical abilities. • QUESTION: What is Sexuality? • ANSWER: Sexuality is: • the exploration of ourselves • our physical bodies • our emotions • our self-worth and image • our interrelations with others Presented by Monica J. Foster, CC, "The Life Beyond Limits Coach" BUTTERFLYWHEELSM Motivation, Advocacy & Consulting www.butterflywheel.com

4. Sex(uality) Education is IMPORTANT • QUESTION: In terms of whether we should or should not provide education, does level of physical or learning ability matter? • ANSWER: NO. Regardless of our level of physical or learning abilities, it is a natural part of being human to be sexually curious & have sexual desire. Education on whatever level suitable is necessary! Presented by Monica J. Foster, CC, "The Life Beyond Limits Coach" BUTTERFLYWHEELSM Motivation, Advocacy & Consulting www.butterflywheel.com

5. Sex(uality) Education is IMPORTANT • QUESTION: How do we determine how much to educate someone with an intellectual disability? • ANSWER: The extent of sexual education is determined by the ability to learn about: • Responsibilities • Consequences • Various aspects of sexual discovery: • Feelings • Behavior • Safety Presented by Monica J. Foster, CC, "The Life Beyond Limits Coach" BUTTERFLYWHEELSM Motivation, Advocacy www.butterflywheel.comy & Consulting

6. Why not traditional Sex Ed? • QUESTION: Traditional programs are often not enough for self advocates. Why? • ANSWER: Traditional programs historically focused disproportionately on three areas: “The No-No’s” or Bad Aspects of Sex • Avoidance of sexually transmitted diseases (Myth: Sex always kills or makes you sick) • Protection against unwanted sexual activity (Myth: Sex always makes you a victim) • Inappropriate sexual behavior (Myth: Sex is wrong) BUT…… Traditional programs have avoided teaching the necessary facts and skills to develop self worth, friendships & loving relationships. Well-rounded education is key. Presented by Monica J. Foster, CC, "The Life Beyond Limits Coach" BUTTERFLYWHEELSM Motivation, Advocacy & Consulting www.butterflywheel.com

7. So what if education is lacking? Avoiding a complete, appropriate sexual education means self advocates miss out on: • Necessary, healthy facts & social skills • Relationships beyond family and caregivers • The fullness of “The Human Experience” Presented by Monica J. Foster, CC, "The Life Beyond Limits Coach" BUTTERFLYWHEELSM Motivation, Advocacy & Consulting www.butterflywheel.com

8. So what if education is lacking? Avoiding a complete, appropriate sexual education means a person with a disability may: • Behave inappropriately or act out • Making certain behaviors that feel good totally forbidden could escalate the behavior’s negative effects in public, towards others and toward the individual in terms of self injury • Have increased risk of becoming a victim • Myth: Disability makes us victims, so self advocates should not have or learn about sex • Fact: Opportunity makes people with disabilities victims. There need to be more opportunities for education, random reviews and stricter criminal screening for service providers, as well as greater education and more opportunity for people with disabilities to report abuse • Become isolated, less confident or less independent Presented by Monica J. Foster, CC, "The Life Beyond Limits Coach" BUTTERFLYWHEELSM Motivation, Advocacy & Consulting www.butterflywheel.com

9. The Problem with Sex is NOT Sex • Usually the sexual act is not the problem. • The problem is: • WHERE it is done (public vs. private) • with WHOM it was done (safe & consensual) • WHEN it was done (age) Presented by Monica J. Foster, CC, "The Life Beyond Limits Coach" BUTTERFLYWHEELSM Motivation, Advocacy & Consulting www.butterflywheel.com

10. Form an Educational Alliance • Educators, service providers, direct support professionals and families must communicate and collaborate to create models of healthy behavior, principles, guidelines and policies to address healthy, safe and appropriate: • social-sexual needs • psychological needs • individualized learning processes Presented by Monica J. Foster, CC, "The Life Beyond Limits Coach" BUTTERFLYWHEELSM Motivation, Advocacy & Consulting www.butterflywheel.com

11. Setting Sex Education Guidelines • KEY POLICY GUIDELINES MUST: • Honor person-centered rights • Complement individualized learning needs Presented by Monica J. Foster, CC, "The Life Beyond Limits Coach" BUTTERFLYWHEELSM Motivation, Advocacy & Consulting www.butterflywheel.com

12. Establishing Key Points KEY POLICY MUST HONOR PEOPLE WITH DISABILTIES’ RIGHTS AS PEOPLE • Self advocates have the right: • to develop expressions of sexuality reflective of age, cultural values, social development and social responsibility • to request information about sexuality and all forms of social relationships • to learn about sex, sexual exploitation, sexual abuse, safe sex and other issues regarding sexuality Presented by Monica J. Foster, CC, "The Life Beyond Limits Coach" BUTTERFLYWHEELSM Motivation, Advocacy & Consulting www.butterflywheel.com

13. Establishing Key Points KEY POLICY MUST ACCOMMODATE INDIVIDUALIZED NEEDS • People with disabilities MAY want extra support in recognizing opportunities and in developing skills and knowledge to create loving relationships • People with disabilities MAY need individualized opportunities to meet their unique learning needs. • People with disabilities MAY require continuing education regarding sexual/physical abuse and protection against victimization Presented by Monica J. Foster, CC, "The Life Beyond Limits Coach" BUTTERFLYWHEELSM Motivation, Advocacy & Consulting www.butterflywheel.com

14. Talking About It All • How to talk about sexuality with a person with a disability • How to support the person with a disability in having relationships • How to understand different types of love • How to prepare for dating • How to learn the appropriate expression of feelings • How to teach personal boundaries on a basic level Presented by Monica J. Foster, CC, "The Life Beyond Limits Coach" BUTTERFLYWHEELSM Motivation, Advocacy & Consulting www.butterflywheel.com

15. Discussing Sex & Sexuality GUIDELINES FOR TALKING ABOUT OR TEACHING SEX & SEXUALITY • Repeat, repeat and repeat again. • Use concrete examples. • Avoid information overload. • Start with the basics. • Appreciate self advocates as sexual beings who express themselves differently. • Be open to questions as they come. • Teach the right to refuse. • Context is everything! • Help with practicing appropriate expressions of affection. • Be prepared to discuss fullest range of topics Presented by Monica J. Foster, CC, "The Life Beyond Limits Coach" BUTTERFLYWHEELSM Motivation, Advocacy & Consulting www.butterflywheel.com

16. Supporting Healthy Self Image • Engage in more television-free time with a person with a disability • Encourage interests and trying new things • Emphasize disability is only a part of who they are • Ensure self advocate knows they are likeable • Encourage healthy hygiene & eating habits • Encourage good manners • Validate person with a disability’s desire to communicate • Reinforce healthy choices • Expose person with a disability to positive role models in books, art, community… • Explore ways for self advocates to communicate thoughts and concerns Presented by Monica J. Foster, "The Life Beyond Limits Coach" BUTTERFLYWHEELSM Motivation, Advocacy & Consulting www.butterflywheel.com

17. Supporting Healthy Relationships Realizations • They are going to mimic or respond to what they learn. • They are going to develop crushes. • They are going to experiment with dating, flirting and sexual behavior. • They are going to hang out with others you may or may not like. Presented by Monica J. Foster, CC, "The Life Beyond Limits Coach" BUTTERFLYWHEELSM Motivation, Advocacy & Consulting www.butterflywheel.com

18. Supporting Healthy Relationships • Treat people with disabilities the same as any other person. • Teach them your family’s moral and cultural values. • Talk about their needs for privacy. • Talk about what they are watching on TV or in the media with them. • Talk with them in a way that doesn’t make them feel cornered, accused or ashamed. • Allow room for ‘dignity of risk’ • Model healthy relationship behaviors. • Encourage friendships and mixed gender group outings. • Explain why you do or don’t like a particular person using concrete examples. Try not to make their choice seem wrong or like you’re punishing them. • Express the same expectations for them as you would someone without a disability. • Be prepared to talk and do the research...but, where? Have open (even uncomfortable) conversations. If you don’t know, find someone who does! Presented by Monica J. Foster, CC, "The Life Beyond Limits Coach" BUTTERFLYWHEELSM Motivation, Advocacy & Consulting www.butterflywheel.com

19. Different Types of Love Scene from the movie “Forrest Gump” http://www.youtube.com/watch?v=Usmb_UCiNGk “I know what love is…” Different types of love can be shared among: • Friends • Family • Dating Couples (Mr. or Ms. Right Now) • Married Couples (Mr. or Ms. Right) Discussing types of love that may be difficult to explain to a self advocate could be closely compared to the ideals touched on in the more concrete Circle of Friends model. Presented by Monica J. Foster, CC, "The Life Beyond Limits Coach" BUTTERFLYWHEELSM Motivation, Advocacy & Consulting www.butterflywheel.com

20. Safe Dating Tips • DATING DO’s • Do practice asking someone out • Do be your best self (clean, comfortable, caring) • Do listen to your date • Do ask your date about their interests (it’s not all about you) • Do relax and have fun (nervous is normal) • Do speak up and say, “No” if you don’t want to do something. • Do go with a group of friends if you are nervous alone. • Do meet in a public place (disability or not, it’s about safety!) • Do tell others where you’re going. We aren’t nosy. YOU are safe & responsible for you and your date! • Do keep a cell phone with you for an emergency Presented by Monica J. Foster, "The Life Beyond Limits Coach" BUTTERFLYWHEELSM Motivation, Advocacy & Consulting www.butterflywheel.com

21. Safe Dating Tips • DATING DON’T’s • Don’t force yourself if they say, “No.” STOP! • Don’t expect love on first date - Friends FIRST • Don’t assume who pays - ASK!! • Don’t judge the person too quickly. Take your time. • Don’t leave the other person wondering if you’ll go out again. Be honest. • Don’t keep texting or calling friends. Pay attention to your date. Presented by Monica J. Foster, "The Life Beyond Limits Coach" BUTTERFLYWHEELSM Motivation, Advocacy & Consulting www.butterflywheel.com

22. Online Dating Safety • Trust Your Gut Instinct • Don't Provide Personal Information Too Soon • Use a Free Email Account • Use a Cell Phone or Anonymous Phone Service to Chat • Beware of Married People • Look for Dangerous Behaviors • Ask for a Recent Photo • Meet in a Public Place for Your First Meeting • Tell Friends or Family Member About First Date • Consider a Group or Double Date Presented by Monica J. Foster, CC, "The Life Beyond Limits Coach" BUTTERFLYWHEELSM Motivation, Advocacy & Consulting www.butterflywheel.com

23. Encouraging Decision Making • Parents & Caregivers: Allow self advocates to make honest and open choices about simple and complex issues in their lives as they are able to. (again, dignity of risk) If they cannot safely and assertively request something different for dinner, how can we expect them to assertively claim privacy over her or his body or say, “Yes” or “No” in a social/sexual situation? Presented by Monica J. Foster, CC, "The Life Beyond Limits Coach" BUTTERFLYWHEELSM Motivation, Advocacy & Consulting www.butterflywheel.com

24. Respecting Boundaries • People with disabilities often require assistance with: • Communicating • Transportation • Eating • Bathing • Dressing • Other aspects of daily living • Privacy is STILL important to: • Maintain healthy boundaries • Help develop a sense of ownership over one’s own body • Prevent abuse and maintain a personal sense of safety and sacred space • Preserve basic human rights • Use role play and discussion • People with disabilities’ exploration of problem solving and decision making can best be facilitated through role playing scenarios and discussing various solutions. Include interpersonal and social situations in these scenarios. Presented by Monica J. Foster, CC, "The Life Beyond Limits Coach" BUTTERFLYWHEELSM Motivation, Advocacy & Consulting www.butterflywheel.com

25. Creating More Space for Growth • Set boundaries around personal space and touching. • Address personal issues in private settings. • Validate and respect feelings about personal attendants. • Support independent development of friendships. • Ask permission before speaking to others. • Encourage problem solving skills & self-protection. • Gradually allow more privacy as trust and responsibility grows. • Allow locks or keys for private belongings. • Respect privacy of communication devices/adaptive equipment. IN ALL THESE THINGS: Presume and treat people with disabilities as human beings with natural desires, hopes and dreams. Presented by Monica J. Foster, CC, "The Life Beyond Limits Coach" BUTTERFLYWHEELSM Motivation, Advocacy & Consulting www.butterflywheel.com

26. Questions & Answers Presented by Monica J. Foster, "The Life Beyond Limits Coach" BUTTERFLYWHEELSM Motivation, Advocacy & Consulting www.butterflywheel.com

27. RESOURCES Disclaimer The following page highlights resources that were used to construct this presentation on sex, sexuality and social education for people with intellectual and developmental disabilities, some of which feature explicit information that may be offensive to certain cultural and moral values. No offense is intended and the use of these resources merely serves as a guide. Presented by Monica J. Foster, "The Life Beyond Limits Coach" BUTTERFLYWHEELSM Motivation, Advocacy & Consulting www.butterflywheel.com

28. RESOURCES Disabled World – Disability Sexuality and Disabled Dating • http://www.disabled-world.com/artman/publish/disabilitysexuality.shtml Planned Parenthood: Developmental Disabilities and Sexuality Curriculum • http://www.plannedparenthood.org/ppnne/development-disabilites-sexuality-31307.htm Sexual Health Network • http://www.sexualhealth.com/channel/view/disability-illness/ Sexuality and Autism Independent UK • http://www.autismuk.com/index9sub1.htm#sexed SexualityandU.ca – Your Link to Sexual Well-Being • http://www.sexualityandu.ca/teachers/tools-10-1.aspx Social/Sexual Awareness For Persons With Disabilities – Autism Research Institute article • http://www.autism.com/families/older/sexual.htm Speak Up: Safeguarding People Who Use Augmentative and Alternative Communication • http://www.accpc.ca/Speak_Up/resources-sexhealthk&saac.htm#7 Susan Fitzmaurice’s Sex Support Site • http://www.sexsupport.org/DisabilityLinks.html TheSite.org – Dating and Disabilities • http://www.thesite.org/sexandrelationships/havingsex/sexanddisability/datinganddisabilities Presented by Monica J. Foster, "The Life Beyond Limits Coach" BUTTERFLYWHEELSM Motivation, Advocacy & Consulting www.butterflywheel.com

29. ABOUT MONICA Monica J. Foster is Chief Motivational Officer (CMO) of BUTTERFLYWHEELSM Motivation Advocacy & Consulting. As a certified life coach, peer mentor, disabilities advocate, trainer and motivational speaker, she has dedicated her life to doing what others said she couldn’t. Known as the “Life Beyond Limits Coach,” she uses her story of strength, courage and triumph to educate, entertain and encourage others to face their obstacles with success in mind. She avidly works with other people with disabilities in an effort to help them maximize their self-esteem, achieve greater independence and seek richer human relationships. This Landis, North Carolina native was born with spina bifida and has used a wheelchair for mobility her entire life. Then, in January 2010, she became a left above knee amputee after a life-threatening infection took over her left leg. Regardless of her physical challenges, Monica has enjoyed careers as a disability civil rights advocate and a journalist. Monica writes for several local and national print and online publications. She has also wheeled on Capitol Hill and North Carolina’s state capital as a professional and citizen advocate. Monica has also served as a Governor’s appointee to the North Carolina Council on Developmental Disabilities for two terms. In these roles, she honed her skills for speaking to various policy-making entities concerning fair treatment and inclusion of all people with disabilities across a wide range of human experiences. A highly sought after motivational speaker and lecturer, she travels the country educating others on multiple disability issues, as well as motivational topics, encouraging everyone to live a life beyond limits. Monica and her loving husband, Bryan, recently returned to her hometown as first-time, accessible homeowners where she spends her days helping others accept what is, in order to discover what can be. Presented by Monica J. Foster, "The Life Beyond Limits Coach" BUTTERFLYWHEELSM Motivation, Advocacy & Consulting www.butterflywheel.com