9/11/2019

DISABLED SEX

Kim AustinBaker Barbara Hill, OTRL

Americans with Disabilities  To empower people with disabilities to make 2015 Census Data  38 million Americans living with informed decisions regarding their sexual and disability  18.5 million with Cognitive and to provide a better and/or Ambulatory Disabilities between ages 18 and 65. understanding of the need for sexual education and  All of which are sexual beings! resources as related to the disabled community.

Disabled Population Cognitive or Ambulatory

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Yes, disabled people can and do have sex, relationships and Today’s Topics families!

Health Dating, Functionality Services & Sex Intimacy & & Sex Aides Education Relationships

Fertility, & & Consent Birth

2014 STUDY BY DYER & NAIR Change and Awareness is 97% of professionals Necessary to believed that the topic Enhance & of relationships and intimacy should be Promote FullLife discussed, but only 36% Recovery actually addressed these issues with their following clients. Traumatic Injury

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“ Sexual Abuse & ” Consent

 Sexual consent is actively agreeing to participate in a sexual activity Both people must agree to sex before being sexual — every single time — with someone. for it to be consensual.

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“A person is guilty of criminal sexual  The term “” means any conduct if the person engages in sexual unwanted, non penetration or contact and the actor knows consensual sexual contact of any kind or has reason to know that the victim is (including kissing) mentally incapable, mentally obtained through the incapacitated, or physically helpless”. use of force, threat of force, intimidation, or RAINN 2019 coercion

Unwanted, nonconsensual sexual contact that includes penetration (i.e. vaginal or anal penetration, , and genital touching) obtained through the use of force, threat of force, intimidation, or coercion.

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According to 2017 Bureau of Justice’s Who can people with  Persons with disabilities are twice more disabilities turn to, talk likely to be sexually assaulted than people without a disability. with in private and  18% of all and sexual assaults express themselves are reported to be committed by freely without fear of This Photo by Unknow n Author is licensed under strangers, which means that most of CC BYSANC these crimes are committed by backlash? someone the victim knows, is close with or related to.

The sexual wellbeing of people with disabilities is SEXUAL HEALTH extremely important and it’s SERVICESSERVICESSERVICES time we expressed that need!

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Life After TBI

Care needs to be managed by a team of healthcare professionals to oversee the physical and TBI is known to cause Changes to sexual changes in thinking, behavior after TBI could psychological needs of their behavior and body include erectile problems, function which alters the reduced , the inability patients. way a person experiences to , and the and expresses their reduction in frequency of sexuality. sex.

This Photo by Unknown Author is licensed under CC BYND

Everyone is entitled to express their sexuality, ACCESS TO receive appropriate important information HEALTH regarding their sexual health and receive proper guidance. SERVICES

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Dating, Intimacy & Relationships (S)EXPLORING DISABILITY  Sexuality is one of the most complex aspects of life but, the sexual lives of people with disabilities have been DATING, INTIMACY & disregarded and stigmatized.  As a result, sexuality as a form RELATIONSHIPS of pleasure and an expression of love is not taken into account or even recognized for individuals with disabilities.

Dating, Intimacy & Relationships Fertility, Pregnancy and Birth

 Research has shown that TBI and SCI MEN WOMEN survivors report significant changes that  Fertility  Pregnancy and Birth impact relationships which can include Erectile problems  Assessable doctors’ offices behavioral and emotional changes,  Reduced libido options dwindle cognitive and physical changes, significantly because of hormones difficulties communicating, role changes Inability to orgasm and other ingredients included in pills, patches, injections or from significant other to caregiver and Reduction in implanted devices. changes in selfesteem, as well as, self frequency of sex identity.  Women with disabilities often need specialists to handle their pregnancy and birth.

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The Disabled Body: Functionality and Pleasure The Disabled Sexual expression is influenced by cognitive and emotional Body: processes and is dependent on functioning anatomical and physiological systems, in other FUNCTIONALITY AND words, our brains control our PLEASURE sexual organs and responses.

The Disabled Body: Functionality and Pleasure

 Before resuming sex with a  You may need to change your partner, boyfriend, girlfriend or same old lovemaking style and spouse, talk about it with your experiment with other sexual doctor or therapist and be activities which can include oral sex and mutual guided by their advice. .  Make sure you are clear and  To increase intimacy, talk with your mate about your concentrate on boosting the expectations, fears and in your relationship by feelings, including consent. offering lots of affection, Communication is key! complementing and saying nice things to each other and From a Survivor’s Perspective  Remember to not put too celebrating big and small much pressure on yourself, occasions. to a Therapist’s Perspective focus on pleasure and not technique

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KEY DEFINITIONS The Role of the Therapist World Health Organization:

Sexual health:  Sexuality is an integral “…a state of physical, emotional, mental and social well- part of the human being in relation to sexuality; it is not merely the absence of experience and disease, dysfunction or infirmity. Sexual health requires a contributes to an positive and respectful approach to sexuality and sexual individual’s quality of relationships, as well as, the possibility of having pleasurable life, satisfaction and and safe sexual experiences, free of coercion, discrimination overall health. and violence. For sexual health to be attained and (Crooks & Bauer, 2013) maintained, the sexual rights of all persons must be respected, protected and fulfilled”

MultiDisciplinary Approach

SERC SEXUALITY RESOURCE EDUCATION CENTRE MB

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Occupational Therapy Framework Defines: Who Should be Addressing Sexuality?  Physiatrists  Primary Care Physicians Sexual Activity as an  Urologists, Gynecologists, “Activity of Daily Living” Endocrinologists  Behavioral Health (Psychologist / Managing Intimate Relationships as an Psychiatrists) “Instrumental Activity of Daily Living”  OT / PT / Speech Language Pathology  Nurses

AOTA, 2014; Estes 2014  Social Workers  Fertility Specialists  Certified Sex Counselors or Therapists

Why An Interdisciplinary Therapy Team? Research Findings

 Improved quality of life (Sale et al., 2012)  May mitigate depression, anxiety, & self-esteem issues My Adv ise to other disabled people would be, (Hough et al. & Barbonetti et al., 2012) concentrate on things your disability doesn’t prev ent you doing well, and don’t regret the  Avoid general health symptoms associated with sexual things it interferes with. Don’t be disabled in spirit, dysfunction (Khak et al. 2016) as well as physically.  Improved knowledge Stephen Hawking  Provision of support  Reduce feelings of isolation  Reduce unevenness of services provided

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Physical / Sensory Barriers

 Motor Function (paralysis, spasticity, coordination) Direct and Indirect Injury  Medical Complications Effects  Medication and Side Effects  Fatigue  Sensory Tolerance and Changes Impacting Sexuality and  Various Levels of Pain Wellness  Bowel / Bladder Challenges  Seizures  Endocrine Abnormalities Leading to Fluctuating Hormone Levels and Effects Goldwin, 2015

Cognitive Barriers Emotional and Behavioral Barriers

 Attention  Personality Changes  Memory  Adjustment and Loss  Depression  Awareness  Anxiety  Language and Communication  Difficulties with Perception and Expression of Emotions  Decreased Initiation  Apathy  Disinhibition  Impulsivity  Lability  Regulation of Behaviors and Emotions  Self Esteem  Planning and Time Management Goldwin, 2015 Goldwin, 2015

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Predictors of Lower Sexual Social Barriers Functioning  Greater injury severity measured by Post Traumatic  Self-Esteem Amnesia duration  Decreased Social Contact  Lower Levels of Independence with ADLs  Relationship Changes  Mood/Psychological Adjustment  Role Status  Higher Levels of Depression  Socioeconomic Status  Lower Self-Esteem  Shorter time post injury  Transportation Obstacles  Age and Age of Injury (Younger adults fare best 24-49  Residential Obstacles Goldwin, 2015 years old) Stolwyk et al., 2013

Staff Barriers to the Provision of Sexuality in Rehabilitation

Challenges / False  Levels of Staff Discomfort Beliefs  Perception of Expertise Elsewhere Therapist’s Perspective  Client Readiness  Staff Attitudes

Eglseder, K.L. 2017

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Modeling and Authentic Activity Building Scaffolding Coaching / Reflection Principal Community / Reflection Reflection

Phase / Introduction & Extensive Literature Data Collection Data Analysis via Reflection via Guided Discussion Reviews via Interviews Guided Discussion Guided Discussion Technique of Research

• Personal Bias • Group • Themes Discussion • Enhance Identified • Discussion of Outcome • Beliefs Comfort • Member Therapist • Exchange Checking for Roles • Develop Knowledge accuracy of Group Norms information

Eglseder, 2017

Clinical Model for Sexuality and Clinical Assessment for Sexuality Wellness and Wellness

 Assessment:  Model: • Occupational Profile • PLISSIT • Quality of Life After Brain Injury Scale • Intentional Relationship Model (QoLIBRI) • Mindfulness • Brain Injury Sexuality Questionnaire (BIQS) • Index of Sexual Satisfaction (ISS) PLISSIT Model (Permission-Limited Information-Specific Suggestions-Intensive Therapy approach) • Sexual Quality of Life Questionnaire (Annon 1976) and the Therapeutic Use of Self through Intentional Relationship Model (Taylor 2008) and Mindfulness (Kabat-Zinn 2011) (SQoL)

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Timing and Approach Thoughts to Consider

 Understand “client’s” definition of Sexual Health  Initiate conversation early on:  Normalize sex as one of many ADL’s  Provide client options  Identify who they can talk to  Identify options and resources  Don’t make assumptions as providers  “Not ready to talk about it” Ellis, 2015  “Shouldn’t they be focused on rehab”

Environment: (Social & Physical Conditions) Context Surrounding the Person: (Access to the Activity and Influences on the Quality of Satisfaction (Interrelated conditions that are within and surround the person and influence performance) with Performance) * Trust, Responsibility, Emotional Availability, Attitude, * Social Groups, Family Dynamics Sharing and Understanding, Empathy, SelfEsteem, Past * Living Situation (Physical & Social Needs of Involved Relationships, Body Image Parties) * Personal Factors (Age, Gender) * Access to (Health Provisions, Education and * Temporal Factors (Stage of Life, Time of Day, Duration of Resources) Activity) * Virtual Contexts (Interactions such as Simulated, Real Time, * Media Influences Near Time Situations absent of physical content) * Expectations of Spouse, Significant Other, Guardian, * Cultural & Religious Beliefs Friends, Caregivers

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Occupation: (Act “of”/ Activity) Context Surrounding * Spending Quality Time Environment: the Person:

* Care for Each Other (Social & Physical Conditions) (Interrelated conditions that are within and surround the person Occupation: (Access to the Activity and and influence performance) * Using Safe Practices Influences on the Quality of * Self-Care Satisfaction with Performance) (“Act of”/Activity) * Sharing Through Feelings * Emotional Intimacy Relationships * Intellectual Intimacy and * Intimacy

Question 3: Have You Talked To A Question 6: Do You Know Where To Go Professional (Doctor, Therapist, For Sexual Education And Resources? Counselor) About Sex?

0% 24% YES 32% Intimacy Intimacy YES 45% NO 55% NO Survey Survey

INTERESTED 44% NOT INTERESTED

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Question 7: Have You Ever Had Question 9: Would You Feel Questions Or Concerns Regarding Comfortable Talking To A Health Sexual Health? Professional About Your Sexual Needs / Concerns?

YES 26% Intimacy 22% Intimacy YES NO NO Survey Survey

74% 78%

Question 10: Has Anyone Addressed Your Sexual Functionality Or Ability To Engage In Intimate Relations? DISABILITY YES Intimacy & NO 47% 53% Survey SEXUALITY

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 Sexual Educat ion Resource Cent er ( n.d.). Sexuality Wheel. Retrieved from ht t ps://serc.mb.ca/sexualhealt hinfo/sexualit y/sexualit yw heel/

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