Sexuality and relationship education for adults with an intellectual disability has had a narrow protective focus and has failed to include people with an intellectual disability in roles other than learners. Today I would like to speak to you about some work we have been doing to change the focus of sexuality and relationship education from a more protective, rules based approach to a peer led, ‘person owned’ adult and experiential approach.I will first provide a background to the reasons why this shift is needed, outlining the current situation for pwid in Australia and internationally in relation to sexuality, sexual expression, relationships and the outcomes they are having.I will then share some results of the work we have been doing in a program – Living Safer Sexual Lives: Respectful Relationships. In particular focussing on how a peer education approach has been used to bring people, in particular women with an intellectual disability into ‘powerful’ roles in a sexuality and relationship education program within an abuse prevention model.
These two articles were in newspapers in the last yearThey highlight two key issues facing people and in particular women with an intellectual disability in Australia and as the research suggests internationally. Non-therapeutic sterilisation of girls and young women with an intellectual disability is regulated by Guardianship legislation in Australia however the Human Rights Commission and WWD advocates are calling for criminalisation of sterilisation as I understand is the current status in Sweden. What is clear though is that either with or without a legal framework sterilisation continues and as a paper by a Swedish researcher suggested in 2005 – raises further questions about education, support and decision making about contraception and reproduction.The second is a newspaper article about reported abuse of people with an intellectual disability highlighting both individual cases of abuse reported in one Non-government organisation and the overall problem reported by government watchdogs the Office of the Public Advocate and the Disability Commissioner. These reports tabled in our State Parliament make it clear that people and in particular women with an intellectual disability are experiencing sexual abuse in group homes and that little is being done to address it.Research about sexuality and relationships and people with an intellectual disability confirms that people with an intellectual disability are experiencing rights abuses in this area. They are at a higher risk of experiencing abuse than the general population and than people with other disabilities; they are being sterilised and not being involved in making decisions about becoming or being parents; they are denied their rights to have and conduct intimate relationships and for men and boys they are more likely to be in trouble with the criminal justice system because of sexual crimes.
Advocate researchers highlight two key issues - there is a problem evident by the outcomes outlined in the previous slide and there is little being done about it – primarily because those of us without an intellectual disability and who influence what happens for pwid have not and do not prioritise sexuality, sexual expression and relationships including intimate relationships for pwid.Tom Shakespeare suggests that at the heart of the problem is an overall lack of acceptance of the sexuality of people with an intellectual disability – and a view that the most human thing that we engage in – sexuality, sexual expression and intimate relationships is not ‘for’ people with an intellectual disability.
Much research has been undertaken on attitudes of staff and families about the sexuality of pwid – less has been undertaken on those of the community.Overall – attitudes of staff and families have been reported to be pretty conservative – with the most conservative views being held by older parents and older staff, about more severely intellectually disabled people about issues like parenting, homosexuality and people being able to determine their sexual expression.This is I suggest concerning – painting a picture that says – you need young, well educated family and staff and you need to have a mild intellectual disability – but regardless you are likely to achieve very little if you are a woman with an intellectual disability and your aspirations are to be a lesbian mother.
LSSL research was the first of its kind in AustraliaA reference group was formed with academics doing the research, representatives from advocacy and other disability organisations interested in the rights of pwid and pwid.The stories were gathered over a number of encounters with each person – for some this was a long engagement – up to a year, for others it was shorterAll encounters were transcribed and then the stories co-developed – the researcher read through the transcript and began to develop it into a story form – nothing apart from names and other identifying information was changed. After many drafts there were 2 versions of the story – a long version and a shorter Plain English version.These were brought back to the reference group a number of times – when the whole collection was completed the reference group developed three actions – to use the stories as the basis of a training package for staff, families and pwid, to use the stories as the basis for policy advocacy and to try to develop some social opportunities for pwid to meet up and form relationships. The first two continued – with a training package being trialled, developed and evaluated and members of the reference group working with the state government to develop a new policy on sexuality and relationships.The training package has been used internationally since 2003 and an updated edition published in 2010.The findings of the research which were used to shape the training package and policy were – that like everyone else their stories of relationships and sexuality were complex, painful, joyful and a struggle at times – and that in particular people struggled because they had not been given access to information/education and support, were not seen as sexual so nobody engaged with them in a positive way about their sexuality and that this usually led to secrecy and unsafe sexual experiences. But that what people wanted was very similar to what everyone else wants – long term, equal, happy intimate relationships.
The stories from this research make it clear however that the attitudes and practices of ‘others’ shaped their outcomes. - not seen as an adult – seen as a child - not given privacy to conduct relationships - knowing that people do not want you to be sexual/express your sexuality/ have sex - being restricted as a result – not allowed to have relationships, have sex at home - on woman had a very active sex life over 30 years but had never had sex in her own bed - being abused and not getting any support after the abuse – feeling ‘responsible’ for the abuse.
Todays paper presents research situated within a 2 year pilot project that implemented an ecological model of abuse prevention in Australia from 2009 to 2011.The model had 4 components – Peer education by pwid in a respectul relationship programParticipation of a broader community of supporters through training co-facilitators from the community and disability sector to support the implementation of the program and to work alongside peer educatorsEngagement of ‘supporters’ /’allies’ of pwid through learning supportResearch and evaluation to ensure findings were used to inform social change.The model was developed within 5 communities using a community development approach – local planning groups that included pwid, professionals from the community and disability sector were responsible for promoting and ensuring the implementation of the program locally
4 aims 1.Engagement with the mainstream/community ownership – beyond disability servicesBuilding capacity of sector – including pwid in this + building a network of trained providers – inclusive model/in partnershipPwid involved in all aspects – accessible and inclusive model of development and deliveryDevelop a comprehensive relationship program – experiential, adult learning principles and develop and an evidence base
This slide summarises the themes found in the research about the motivation, aims and expected or actual outcomes of peer educators.The strongest theme when looking at motivators for participation was the opportunity peer education in this relationship program gave these pwid to use their personal experiences to help others. There was a strong benevolent aim – to help others so they would not have bad experiences in relationships. However the peer educators also expected that they would get something out of it too – in particular knowledge about rights in relationships and the skills to share ideas about these with their peers.The idea of ‘being in their shoes’ was a strong theme – peer educators reported that they would be more able to relate to their peers than professionals and could better understand, give empathy and lead by example to share through their own stories and their reflections on the program stories about rights in relationships and ways of having respectful relationships.
Turner & Shepherd in their research about peer education claim that one of the strongest justifications for peer education is that peer educators have credibility with their peers – their research looked at reports on peer education in the mainstream – mainly in health promotion programs. Peer education has been used extensively in areas like drug and alcohol programs and is used extensively in mainstream violence prevention.What is most interesting about the findings in our study is that despite others questioning the capacity and credibility of pwid to be peer educators the pwid themselves who are given a chance to lead and educate recognised that their credibility with their peers is really important and in this program this credibility was strengthened by the strong link between the experiences of peer educators, the people in the stories and the pwid in the programs. As one peer educator said – “Well some of my story could affect, like go good with their stories..” and others who saw the link between their own stories and presented this to the people in the groups who often then shared their own stories, eg Molly’s story raises issues about pregnancy and views others hold about the capacity of women with id to have children (read quote re Molly’s story)
There was widespread scepticism about the ability of pwid to be peer educators in this relationships program. Gatekeeping by advocates and service providers is reported in the evaluation of the program as one of the biggest issues in getting the program implemented.Despite this – the peer educators managed – there were no examples where peer educators were not able to run the program, co-facilitators certainly helped peer educators to manage a group or an issue within a group – however the peer educators coped. They managed questions about rights, abuse, same sex relationships and pregnancy – questions about their personal experiences and were often asked advice from their peers. The peer educators noted that for them it was important to be able to do this – one peer educator reported that ‘answering a scary question’ was one of the biggest achievements for them as a peer educator
Relationships and sexuality – developing a positive approach to education and support
latrobe.edu.auCRICOS Provider 00115MCRICOS Provider 00115MRelationships and sexuality – developing apositive approach to education and supportDr Patsie FrawleyResearch FellowLiving with Disability Research Group, LaTrobe University,Melbourne AustraliaYvette Keanne – Peer Educator: Bendigo LSSL:RR programSEXUALITY AND DISABILITY FORUM MELBOURNE – JUNE2013
Introduction• Women and girls with an intellectualdisability still undergoing forcedsterilization (WWDA, 2001) and havelimited choices re contraception andreproductive decisions (Areschoug, 2003• People with an intellectual disability areat the highest risk of abuse of all peoplewith an intellectual disability (Horner-Johnson & Drum, 2006)• Parenting seen as a problem for people(in particular women) with anintellectual disability (Kroese, et al., 2002)• People with an intellectual disabilityliving in group homes not allowedprivacy to conduct intimaterelationships – risk averse culture(Hollomotz, 2008)• Sexuality and relationship educationlimited –narrow focus -needs to becomprehensive and involve people withan intellectual disability in developmentand delivery(Barger et al ., 2009)Abuse by carers covered upThe Age Newspaper -July 16,2012MORE than 100 intellectuallydisabled people in state-fundedcare are alleged to havesuffered sexual abuse and otherharm at the hands of theircarers, amid accusations thatsenior public servants are tryingto cover up incidents.The Department of HumanServices recorded 112 cases ofalleged "staff-to-client" abusein 2011-12 in government andcommunity managed housingfor the intellectually disabledacross Melbourne...One of the most seriousunresolved Melbourne eastcases involves a male carer whohas been the subject of severalsexual assault and misconductallegations.
3La Trobe UniversityMarginalisation and regulation“Policy and provision around disability often neglect to consider sexuality as one ofthe basic human needs. While housing, transport, education and other needs aredealt with, albeit inadequately, consideration of social and sexual factors is not highon the welfare agenda. Disabled people in day centres or residential homes are oftendenied privacy, or the opportunity to form emotional or sexual relationships. Thisfailure to prioritise matters which are highly significant to most adults, reflects afailure to consider disabled people as fully human” (Shakespeare, 1996. p. 87)“ The reasons for the marginalisation and regulation of thesexuality of people with intellectual disabilities are both historicaland contemporary and are closely related to ....the fears associatedwith the increased rights of people with intellectual disabilities andto prevailing attitudes towards people with intellectual disabilities”(Johnson, Hillier, Harrison, Frawley, 2001)Not human - High risk - Not competent - No insight or feelings - “Not like us”Genderless
4La Trobe UniversityDominant attitudesGeneral population – stigma towards the sexuality of people with an intellectual disability. Inparticular, less favourable views about the sexuality of people with an intellectual disabilitythan people with a physical disability (Katz et al, 2000)Scotti et al (1996) found that students (without disabilities) viewed the sexual behaviour ofpeople with intellectual disabilities as being less acceptable than their own sexual behaviourKarellou (2003) – attitudes of staff - age and level of education were the main factors; older lessliberal & lower education level more negative. Oliver et al (2002) also found age to be aninfluence on attitudesVariable attitudes in relation to level of disability of people and type of expression of sexuality ;–liberal attitudes towards masturbation, less liberal regarding sexual intercourse, homosexualrelationships (Yool et al , 2003; Valios, 2002) & involvement of people with intellectualdisabilities in determining their sexual expression (Yool et al, 2003)Attitudes of staff supporting people with an intellectual disability; less institutional setting moreliberal attitudes – correlates with attitudes towards people with higher support needs,homosexuality. Most conservative views are about males living in more institutional settingsand homosexuality. (Grieve et al, 2008)Parents attitudes are reported to be more conservative than paid carers (Brown, 1994; Rose &Jones, 1994) with older parents being most conservative
5La Trobe UniversityShifting attitudes - rights
6La Trobe UniversityShifting attitudes – ‘listening to’ and being informed by the livedexperience of people with an intellectual disabilityAims Findings•to identify key issues around sexualityand relationships for people withlearning disabilities• to place sexuality and relationships inthe broader context of the lives ofpeople with learning disabilities• to develop, trial and evaluateworkshops and other resources basedon stories contributed by people withlearning disabilities to assist them tolive safer sexual lives.•Stories are complex, emotional,passionate, painful, joyful – tell aboutadults struggling with issues aboutsexuality and relationships•Secret sexual lives – risk and abuse•Leading unsafe sexual lives•People wanted/aspired to long-termintimate relationships•Isolation, rejection•Limited access to information aboutrelationships and sexuality•Balancing protection and rightsLiving Safer Sexual Lives (Johnson, et al 2001; Frawley et al.,2003) Research with 25 people withan intellectual disability in Victoria, Australia – developed stories of their lives – focus onrelationships and sexuality
7La Trobe UniversityWhat the people in the stories SAY• Other adults treat me like a child ‘Well I just asked mum and dad if I could getmarried to Peter. And me mum said “No”. I was nearly 30. Me mum said “You’ve onlygot one hand, you can’t cook, you can’t do ironing, you can’t do anything”. I said“Well, I’ll find a nice man”. I said “He will do it”. Mum said “No”.’ (Elaine)• People think I shouldn’t have sex “I can’t talk about stuff like that with myfamily’ (Molly)• There’s no privacy‘ Before we shared our room, a staff member knocked on thedoor and found us together. She said ‘Get into your own bed’. I didn’t like her thatmuch doin’ that. (Hanna)• Fertility is taken out of my control “There was a time when I would have likedto have children, but I never had the chance...well it would have been nice to at leasthave the choice”• I learned about sex through abuse ‘There was no messages about safe sex. Ifmy stepfather couldnt get sex or my brother in law, they would come to me. Themessage was, ‘come here’. (Gina)
8La Trobe UniversityLSSL: RR modelResearch andEvaluation –SocialchangeLearning PartnersResourcing naturalsupportsCo-FacilitationSector DevelopmentPeer EducationRespectful Relationshipsprogram ran by and forpeople with anintellectual disability
9La Trobe University 9Developing the LSSL:RR programLa Trobe UniversityEngagement withmainstream - Communitybased ModelBuilding capacity/sectordevelopmentPeople with an intellectual disabilityand community professionalsworking togetherInclusive programdevelopment withpeople with anintellectual disabilityNew comprehensive programfor people with anintellectual disability–resources /research/evaluationSituated in 5 sites (3 Vic; 2Tasmania)Trained 20 people with an intellectualdisability as peer educatorsProject team – 3 womenwith an intellectualdisability; 2 projectworkersLSSL:RR program:4 sessions; Talking aboutrelationships and sexuality;Having rights and being safe;Respectful Relationships; Menand respectful relationshipsPlanning with representativesfrom disability and communitysector, including people with anintellectual disabilityTrained 20+ communityprofessionals as co-facilitatorsUsed accessible programas basis (LSSL, 2003 –stories of pwid andrelationships)ResearchPeer education model –findingsabout involving people with anintellectual disability aseducators in a violence andabuse prevention programEngaged local organisations– auspice and coordinate theprogram, using existingresourcesFacilitated educators to promote theprogram locallyProlonged engagement –fortnightly for 6 + monthsModel evaluationBarriers and enablers todeveloping a community basedcross sector violence andabuse prevention program forpeople with an intellectualdisabilityDeveloped LSSL:RR network Linked people into communityprevention activitiesPwid as trainers Papers and presentations –broad dissemination
10La Trobe University 10LSSL:RR Program 4 key ideas: Respectful relationships; Not putting upwith violence and abuse; Values – equality, fairness and respect; RightsFour Stories Four ThemesMolly’s story “My dream is to getmarriedAngela’s story “I like to ride ontrains”Hanna’s story “It’s hard to getprivacy”Kevin’s story “I’ll spend my lifewith her”Talking about relationships andsexualityHaving rights and being safeRespectful RelationshipsMen and respectful relationships
11La Trobe UniversityPeer educator’s motivation, aims outcomesWhy people gotinvolved – motivationto be peer educatorPersonal experienceof relationships – goodbasis for being a peereducatorAlready have skills –program goodopportunity to developthese furtherSelf advocacy – link forpeer educators toprogram; place wherethey have learned to„speak up‟ and shareexperiencesHow they saw theirrole – aimsHelping peers so theycan have betterexperiences inrelationshipsTo share ownexperiences, helppeople talk aboutrelationships throughthe stories and ownexperiencesCan be an educatorbecause I am “in theirshoes”Being a role modelWhat people got outof it - benefitsHelping others andselfMore confidence andbeing respectedNew knowledge andskills – aboutrelationships, supportservices and being afacilitator
12La Trobe UniversityPeer educators are credible sources ofinformation...Link between peer educators’ experiences, the storiesand the experiences of the program participants....“Well, some of my story could affect, like, go good with their stories as well sometimes...Like, like certain bits in my story could help them. They might, they might think it -they’re like what I’ve been through....Like if, like some, like if it’s a woman it, theymight think, like after they’ve had a kid or something, they might think how I feel,how they’ve, how I lost my daughter and I can only see her monthlies..”.(P4).“Like talking, like when we show stories to ‘em they think they’re like, like Molly’s storyand that....And they talk about – when we talk about Molly’s story they talksomething about really about their own self and that.: (P4)“They ripped it *private sign+ down on them. Like these *people with an intellectualdisability+ are grown adults, consenting adults. They don’t need to be treated likethey’re children. And yeah, that really got on my nerves. I had to go home and cooldown after hearing that. Yeah, I was quite grrr (P1).
13La Trobe UniversityPeer educators are role models...Despite concerns about capacity to ‘handle the job’ peer educators managed and lead byexample and experience“Hey, look at them! They can do it; we can do it too!” .... And that’s what got megoing. (P2)“Personally it’s better with people with disabilities. As I said, you can reflect. Soyou’re going to listen, you’re going to be interested because, “Hey! They’re just likeme.” And I think that’s a big draw card is, “Hey look, if they can do it, I can do ittoo.” (P 6)Evaluation question –”What was a good thing about the program”?Participant –”*names the peer educator+ I want to do what she is doing” (ER 0411)•Peer education is beneficial for peer educators with an intellectual disability•People with an intellectual disability can manage the complexity of facilitating arelationship program – with collegial support, an experiential learning program andrigorous training•Shared experiences between peer educator and program participants – stronglearning –empowerment•Relationship programs enhanced through peer education
Where to for relationship and sexuality education with peoplewith an intellectual disability?• Based on lived experiences – acknowledges reality of people’slives – “same as me”• Make clear the disabling nature of attitudes and practices thatdo not acknowledge the sexuality of people with an intellectualdisability – identify these and focus for change• Gendered understanding of relationships, sexuality and disability•Inclusion of people with an intellectual disability in shapingpolicy, education and practice
Thank youlatrobe.edu.au CRICOS Provider 00115MFrawley, P., & Bigby, C “I’m in their shoes” Experiences of Peer Educators in Sexuality andRelationship Education (in press)Frawley, P., Slattery, J., Stokoe, L., Houghton, D., & OShea, A. (2011). Living Safer SexualLives: Respectful Relationships. Peer educator and co-facilitator manual. Melbourne:Australian Research Centre in Sex, Health & Society, LaTrobe University.Frawley, P., Johnson, K., Hillier, L., & Harrison, L. (2003). Living Safer Sexual Lives: Atraining and resource pack for people with learning disabilities and those whosupport them. Brighton Uk: Pavilion Publishing.Johnson, K., Frawley, P., Hillier, L., & Harrison, L. (2002). Living safer sexual lives:Research to practice. Tizard learning disability review, 7(3), 4-9.Johnson, K., Hillier, L., Harrison, L., & Frawley, P. (2001). People with intellectualdisabilities Living Safer Sexual Lives. Melbourne: Australian Research Centre in Sex,Health and Society. Faculty of Health Sciences LaTrobe University.Some references from the presenter