This was the second session at the Advocacy Sector Conversations forum held at St Michael’s Hall on 9 July 2019.
Overview
Sexuality is often overlooked, or left until last in the practice of supporting people with disability. Deakin University has long reflected on the broader themes in research and practice relating to sexuality and disability including developing a rights approach, sexual ableism and how to promote voice and lived experience, particularly for people with intellectual disability and acquired brain injury. Dr Amie O’Shea, National Co-ordinator and a Research Fellow, Monica Wellington, Program Assistant and : Linda Stokoe, Lead Peer Educator, introduce the rights-based program Sexual Lives & Respectful Relationships that they have all been involved with.
Scroll to the bottom of this post for links to resources mentioned in this presentation.
Transcript & Audio
MELISSA HALE, DARU COORDINATOR
On to our next session. Deakin University is running this amazing program called Sexual Lives and Respectful Relationships. I won’t go into too much about what all that is about but I would like to welcome Doctor Amie O’Shea, Monica Wellington and Linda Stokoe. Thank you.
DR AMIE O’SHAE, NATIONAL COORDINATOR & RESEARCH FELLOW, DEAKIN UNIVERSITY:
Hi everyone and to begin with we all would like to just acknowledge that we’re here on the land of the Kulin nations and pay our respects to elders past and present and emerging. We also graciously acknowledge any Aboriginal people who are here today in the room or online. We all give you our thanks for the generous way that you’ve shared knowledge, including in the earlier presentation today which enriches what we all can do and how we can continue to do it. We also acknowledge the Auslan interpreters that are working hard alongside us.
LINDA STOKOE, PEER EDUCATOR – DEAKIN UNIVERSITY:
Welcome, my name is Linda Stokoe. My two colleagues is Amie and Monica that works with me because I’m a peer educator for this program.
MONICA WELLINGTON, PROGRAM ASSISTANT, DEAKIN UNIVERSITY:
We want to tell you about what Sexual Lives and Respectful Relationships is. Do you want to start us off?
LINDA STOCKOE:
It’s a program that works with peer educators, that’s got intellectual disability. We work around sexual, our rights, and respectful relationships and violence and abuse as well. We work with other organisations that will come up a bit later as well. I’ll talk a bit more about that, one of us will called Program Partners and they work with the peer education, their peers in the program.
MONICA WELLINGTON:
They work together to run the program.
LINDA SOKOE:
Yeah, to run the program and work everything out.
DR AMIE O’SHAE:
Here’s an image that if you’ve seen us speak before you’ve probably/definitely seen before. Linda what is it?
LINDA STOKOE:
The onion.
DR AMIE O’SHAE:
We call this our onion and one of the peer educators from Gippsland, Emily called it that because it’s got lots of layers. Do you want to tell people Linda about what’s here at the middle, inner circle of the model?
LINDA STOKOE:
That’s for peer educators that work in the program as a peer.
DR AMIE O’SHAE:
What about the next one?
LINDA STOKOE:
The other one is learning partners, they work with other people it could be program partners, could be a family member, could be anyone you can work with with learning partners.
MONICA WELLINGTON:
If you want to ask someone to help you with what you’ve learnt in the program.
LINDA STOKOE:
Yeah.
MONICA WELLINGTON:
The blue one?
LINDA STOKOE:
The other one is for program partners like all the organisations that come in and help in the program, and helps with the peers when we do run the program.
MONICA WELLINGTON:
The outside one?
LINDA STOKOE:
The other one is like researching. We do researching evaluations. We do a lot of researching in things, all different things like our program what we’re doing and other researches, what others we do as well, what we work with.
DR AMIE O’SHAE:
Thanks Linda, if anyone has seen an ecological model, ecological approach to violence, abuse prevention you would recognise this onion idea. That’s the way we think about our work, starting in the middle with the individual and working out through the layers of which they interact. Thank you Linda for explaining it. What we know particularly at the white point, at the middle, is that in our practice working with peer educators for how long have you been a peer educator?
LINDA STOKOE:
Ten years.
DR AMIE O’SHAE:
So over the last decade of really leading this work and evaluating and understanding how it happens we know that peer education from its beginning challenges people’s ideas about capacity. It also challenges ideas about knowledge, whose allowed to have knowledge and who and how are they allowed to share it.
There’s a guy called Freer who wrote about democratising education, education doesn’t belong up there we all have access to it and all can share it and what makes somebody an expert or have the right to educate. We will talk in a little bit about some ways that we’ve worked across particularly groups of people within the program.
Another little bit from me to tell you about the outer layer of the onion which is the research we do around understanding this model and the practices and experiences of people at all stages across the model.
We know that key elements for success can be summarised in this five piece puzzle. We want to show you that because we see a number of you in the roles that you’re in fitting into these really clearly. The writing is a bit small I’m sorry but the top one says Cross Sector Partnerships. When Linda tells you more about the program partners and the partner organisations we work with you will see really clearly how important those connections are.
Linking targeted programs to the mainstream, but also that bottom one which is red that says Champions and Drivers. One of the things which has been essential to the success of this kind of approach has been people who pick up this work and go hey this is important and we’re going to keep doing it. Linda is one of those people as a peer educator who has been committed for 10 years but also a number of program partners and partner organisations have worked with us for that long as well, haven’t they?
LINDA STOKOE:
Yeah.
DR AMIE O’SHAE:
Yeah, and really been committed to this work as well. What we’ve learnt and after this I will stop telling you about research but I’m a researcher I can’t help it.
What we’ve learnt, from our work alongside the model over the last 10 years is that what we have seen is taking this approach, taking a peer education approach which centralises the lives and experiences of people with intellectual disability means that we can even talk about sexuality, violence and abuse in people’s lives differently. It immediately shifts the way discussions are held.
We also have learnt that everyone is always learning. Because we have ten years of work now we can really see how that learning gets deeper and more enriched as peoples commitment continues and new people come in. Linda, you’ve trained I don’t even know how many peer educators you’ve trained?
LINDA STOKOE:
I don’t remember there is that many and program partners too.
DR AMIE O’SHAE:
You’ve seen people you’ve trained now work alongside you give presentations with you. So learning continues and enriches. We also have seen that the partnerships that happen between people with intellectual disability and community professionals show how people with intellectual disability can have their own say about sexuality, violence and abuse in their lives.
The people are actually a rightful and essential part of work, all work and any work that is about them or any of their local communities. People are sexual beings with sexual agency and that intellectual disability also will intersect with other identities for example around culture, our sexuality.
MONICA WELLINTON:
Here it demonstrates how many, our different partner organisations who have partnered with us and worked with us in sexual lives and respectful relationships.
LINDA STOKOE:
We’ve got that many people we’ve worked with
MONICA WELLINGTON:
YEAH WE DO, DON’T WE.
LINDA STOKOE:
Like people like South West CASA against sexual assault and family violence, Councils, and Synapse. There’s a lot of places.
MONICA WELLINGTON:
Yeah, a lot of different background and backgrounds of work they work in and they all come together and work together in the program. They all bring different information from their programs which works in a really collaborative way.
LINDA STOKOE:
Yep and then they try and put it into our program.
MONICA WELLINTON:
Yeah, so partner organisations is a term that we use to describe the workplace that the program partners work at.
LINDA STOKOE:
Yeah, and they help the peer educators and work with the peer educators with working out when they do the program where they’re going to have their venues and all the other stuff like their funding, find all that. That’s all their job to do.
MONICA WELLINGTON:
What do you think the program partners get out of working in Sexual Lives and Respectful Relationships?
LINDA STOKOE:
They get to know how to do the program with a person that has an intellectual disability and working with peer educators and that. Then they get to know the program and then they’ll get to know the person they’re working with as well.
MONICA WELLINTON:
People have told us that they’ve gained some insight when they’ve worked with SL&RR and they’ve also learnt a little bit about rights and sexuality rights and relationship rights. Then what they’ve done and what they’ve found is they’ve taken that information back to the people they work with and they’ve said, they’ve shared that information and that’s been a good thing for them and their organisations as a whole.
DR AMIE O’SHAE:
I’m just thinking of an example of that and one that comes to mind is West CASA which is the Centre Against Sexual Assault which runs around Melbourne’s West. We had a SL&RR site based around the Footscray area and auspice by Co Health. The councillor advocate from the CASA who was connected with the site there was asked to go and give a presentation to a professional group.
She said where normally I would just have gone and done that I now thought of another way that I could do it and I could approach the peer educators I work with in these sites and ask if anyone was interested in coming with me. We’ve talked about capacity building and increasing the ability of services to engage with people. It happens at a local level, communities engage with communities.
MONICA WELLINGTON:
.We’ve dug up the numbers a little bit, and we’ve found that there’s been over 70 partner organisations connected over the time of SL&RR.
LINDA STOKOE:
That we’ve trained.
MONICA WELLINGTON:
And around the same numbers of peer educators as well. They work together in things that were called sites. Do you want to explain what sites are?
LINDA STOKOE:
All different sites like the council, worked with them. Synapse they’re like an organisation that works with people with brain injuries.
MONICA WELLINGTON:
L&RR and they’re all over Australia.
LINDA STOKOE:
Yeah, everywhere. Bendigo, Gippsland, Morwell, the Peninsula.
MONICA WELLINGTON:
Melbourne. Sydney…
Dr amie o’shah:
You trained people in Hobart, Burney.
LINDA STOKOE:
Tried to train people in Geelong where I live.
MONICA WELLINGTON:
YEP, All over Australia.
LINDA STOKOE:
Everywhere.
MONICA WELLINGTON:
We’ve started a project with Synapse and Synapse is the brain injury organisation of Australia and they’re based in Sydney. This project came about because there was an information session for SL&RR in Sydney and it was at MDAA which is the Multicultural Disability Advocacy Association. It was for anyone that was interested in SL&RR to come along and learn a bit more about what it was about. There was a person there from Synapse and she came up and said this is fantastic we really want to do this but how it is at the moment doesn’t quite work for us. They went away and gathered some funding, an ILC grant funding then we partnered with them to do some research and develop a SL&RR program for people with brain injury.
LINDA STOKOE:
Then we trained this group as well. We trained them and they are coming I think they’re about to start to do training to train other people as well in brain injury.
MONICA WELLINGTON:
Yeah, the project has been happening for about a year now. It started off with some research so it started off with a literature review which kind of found out that people with brain injury considered in more of a medical model. There hasn’t been a lot of things out there that talk about peoples relationship or peoples sexual lives in a really personal and personhood way.
The next stage of that research was about a narrative research process where we collected some stories from people with brain injury about their sexuality and their relationships.
LINDA STOKOE:
Yeah, we did four stories about people with a brain injury and we trained the people within it and we did the stories with them. When we done another activity thing called Reach In and Reach Out so they can reach out to people and go to other communication places.
MONICA WELLINGTON:
Yeah, in the program we use some activities alongside the stories to really develop and develop learning from the stories. We developed some new activities like the Reach In and Reach Out activity because that’s because some of the themes that were coming up in the stories were different to what we’ve seen in the past and they were around mental health and taking care of yourself. That Reaching In is about –
LINDA STOKOE:
Self-care.
DR AMIE O’SHAE:
Yeah. In the site, how many people in that site did we train?
LINDA STOKOE:
I think it was three peer educators and three program partners.
MONICA WELLINGTON:
Yeah, and they’re about to run a program which is fantastic. We’re keen to hear how they go.
When we were working with the site and through the research we noticed there was a bit of a gap. There is an opportunity to do some work with people who don’t have a single incident brain injury or people who don’t identify as having a brain injury. That’s some kind of future work that we’re interested in that might come about.
DR AMIE O’SHAE:
.Another thing we got to explore in this program was in partnership with Inclusion Melbourne and with funding from Pride Foundation Australia, which used to be called Gay & Lesbian Foundation Australia. Inclusion Melbourne asked us to look particularly at piloting a version of the program which was particularly by for and about LGBTIQ people with intellectual disability.
We did that and the first step again just like with Synapse was to conduct a research project and make sure that we were hearing the voices and stories of LGBTIQ people with intellectual disability. We did that and two of the stories that were produced there is a few little exerts from here on the screen. I’ll talk about those in the sec with Linda but those stories along with other stories and some of our existing activities were used in a program which we ran at Inclusion Melbourne.
You can see the advertising flyer there, we ran that with the support of South Eastern Centre Against Sexual Assault and some of our peer educators. All of the training team were LGBTIQ identified people and it was also evaluated by the University of Melbourne. If you’re keen to read evaluations you will find that on our website.
The picture on the far right here is something that was produced shortly after the program by one of the participants who found the messages in the program really powerful and went home and created that on her computer. We share that with pride in her work and as a way of also sharing her voice.
The stories that we produced for that pilot don’t just stay in a separate pilot. They’ve been incorporated into our program to ensure that it is also diverse and inclusive. Alongside that we did a review of our program materials and manual to make sure that it explicitly respected all relationships, all genders and all sexualities.
The two stories that we’ve put up here are from Carol and Jono and Linda, Carol says something about how sex-ed at school wasn’t much good, doesn’t she?
LINDA STOKOE:
She didn’t want to learn about it.
DR AMIE O’SHAE:
Hmm and she feels like it wasn’t for her. It was about straight people so she just didn’t listen.
LINDA STOKOE:
No, because she’s a lesbian.
DR AMIE O’SHAE:
.When we read Carol’s story at the pilot group everyone in the room of all genders went yes that’s me too I felt like that. An action we did as a result is we invited Thorne Harbour Health to come and give us their sex-ed program. There was dams, and there was condoms and there was lube and questions. It was an amazing, amazing empowering thing for everybody. We discovered that that was a way that we could really ensure the information is available to people.
Jono talks about a couple of things that we really learnt from.
LINDA STOKOE:
Yeah, he’s a guy that’s gay. He likes to get back into a relationship with a guy but there’s one guy doesn’t like him talking about he’s gay and that’s Laurie. It was a staff member and that doesn’t like the idea.
MONICA WELLINGTON:
So Jono lives in a house where paid staff support him and he says he can’t talk about being gay in front of Laurie. He also talks about not feeling safe in public and worrying about being down the street and being abused or yelled at or being called slur words or terms that made him feel unsafe.
LINDA STOKOE:
Some names they call him.
DR AMIE O’SHE:
Yeah. He also talks about some nice things doesn’t he, he talks about he has that friend and I forget the name that we gave his friend.
LINDA STOKOE:
I think it’s Steve.
DR AMIE O’SHAE:
Yeah, they go out for coffee.
LINDA STOKOE:
Yeah, I think he wants to get back. I think they had a relationship and I think he wants to get back with him but I don’t know what’s going to happen.
DR AMIE O’SHAE:
Yep.
MONICA WELLINGTON:
.Let’s talk a bit more about what is in SL&RR. How many sessions is it Linda?
LINDA STOKOE:
We have four sessions.
MONICA WELLINGTON:
.Each of the sessions covers a different thing.
LINDA STOKOE:
Yeah, they all have different themes of the sessions. We’ve got six stories in there we used to have only four or five but we’ve gone up to six. Now we talk about stories in our program every session. There’s always a story in every session, the four sessions. We talk about them.
DR AMIE O’SHAE:
What do we always say before we introduce a story? Do we make up the stories?
LINDA STOKOE:
No, they’re real stories but the person that’s in the story is just we act, there is actors in it when you show the video. The names are all changed, where they live is all changed.
MONICA WELLIINGTON:
And after the stories we –
LINDA STOKOE:
We always have key messages after it, there is all different key messages about the story.
MONICA WELLINGTON:
How do we make the key messages?
LINDA STOKOE:
I remember her doing some of these messages. We used to go through the story and then we used to have to pick out what good messages go good with that message and we used to work it all out for different areas in the story.
MONICA WELLINGTON:
We spoke to lots of different people to get their input on developing the key messages. They’re nice and rounded and have different perspectives. They’re always in evolution, always changing and evolving as we go along.
LINDA STOKOE:
Yeah, we get them changed.
MONICA WELLINGTON:
Then after the key messages?
LINDA STOKO:
Sometimes we do activities and that. After it we might talk about our rights and we do an activity with rights cards and or if there is a story about sexual assault in it we always have a booklet, we’ve got a booklet about sexual assault when sex is not okay. We always have someone from CASA, from sexual assault centres to talk a bit about that if things like that are in stories.
Then we’ve got another little activity. We usually have In Relationship cards they’re called and we talk about all different relationships and things.
MONICA WELLINGTON:
Some of the other activities as well are about being safe online.
LINDA STOKOE:
The danger cards, dealing with danger cards. We play a little activity with that.
MONICA WELLINGTON:
And we talk about self-care and also about gender and sexual diversities as well. Then we always have the information at the end of each session which tells people about where they can go to get more information or to get help if there’s anything else that they want information about.
All the guidelines for the sessions are in the manual. How thick is the manual?
LINDA STOKOE:
It’s very thick.
MONICA WELLINGTON:
It’s a bit book isn’t it?
LINDA STOKOE:
Yes, it’s lucky I didn’t bring it.
MONICA WELLINGTON:
We didn’t bring one along but we can share if yourself interested. It’s a big book that has –
LINDA STOKOE:
It should be on the website isn’t it?
MONICA WELLINGTON:
It is, yep.
DR AMIE O’SHAE:
Sometimes it’s fun to be a bit provocative isn’t it and having said all of that I would also say we don’t actually teach anybody anything. We say that really deliberately because there is a fairly monotone idea about sexuality when it comes to people with intellectual disability which is that they exist as empty vessels which wiser people than they have to fill up.
We reject that idea, we reject it clearly through the use and the value of peer education but more than that through a really poor set of educational principles two of which I want to mention.
One is Linda has given some amazing examples of the discussions which are peer led and allow for adult learning principles to take place. The second if you can remember just some of the organisations that were on that slide of Program Partner Organisations, such as Bendigo Community Health for example are and contain the experts on our program partners from there are mens and womens sexual health nurses.
Just like any of us if I need specific advice from a sexual health nurse I will go and ask a sexual health nurse. The organisation which houses and employs that sexual health nurse will support me as they should support anybody else. The principle is that we all access expertise from the experts. There is not a break-off point which is weirdly alluded to an idea of IQ.
LINDA STOKOE:
Our rights cards these always come up in our program. We always talk about these all the time in our program because they’re important about a person who has an intellectual disability has got to have rights. They’re very important.
We’re thinking about doing a little activity with our rights cards.
MONICA WELLINGTON:
Where did the rights cards come from?
LINDA STOKOE:
We got these from a person called Anne Craft a long time ago, in the 90s. Sort of research.
DR AMIE O’SHAE:
She was the first person back in the UK in the 90s to stop talking about all the deficits that people with intellectual disability have and start saying hang on people have rights. That just shifted the way sexuality could be talked about for people with intellectual disability. When we first started working together Linda 10 years ago, you and I and Patsy Frawley and Janice Slattery who is a self-advocate that I imagine some people know, retired now unfortunately.
LINDA STOKOE:
And Danny.
DR AMIE O’SHAE:
Danny from Wise, Women’s Health in the North. We loved these because we thought yes rights is where we need to start this discussion. We went through a lot of discussion making them in more plain English. These aren’t Anne Craft’s words we have turned them into plain English and come up with images and ways of explaining them that we thought were more accessible.
LINDA STOKOE:
And look a bit better. I remember I had to take photos sometimes.
DR AMIE O’SHAE:
Yeah, they’ve been improved over the years haven’t they?
LINDA STOKOE:
Yeah.
DR AMIE O’SHAE:
So we would really like to hear from you now. I’m going to hand over to Linda in a second, Monica is going to be her assistant. We’re going to invite Linda to run a shortened version of the card activity that we would run in the program. Linda is going to put her trainer hat on and we’re going to look for three people who are willing. You can do it from your seat, three people who are willing to join in when Linda gets to that point. Put your hand up and we will be able to come around to you and we have a microphone.
MONICA WELLINGTON:
Do you want to read them out aloud first?
LINDA STOKOE:
To be able to do these things without other people stopping you. To make your own decisions about relationships. To be sexual.
DR AMIE O’SHAE:
What are we going to ask people to volunteer to do?
LINDA STOKOE:
To talk about one of these cards.
DR AMIE O’SHAE:
Hmm, what about?
LINDA STOKOE:
Like if someone picked whatever card and they can talk about that card.
DR AMIE O’SHAE:
Okay.
LINDA STOKOE:
What it’s about and that.
DR AMIE O’SHAE;
What they think about it?
LNDA STOKOE:
Yeah, what they could think about it and things like that.
DR AMIE O’SHAE:
Yep, their experience or work.
LINDA STOKOE:
Yeah, it could be any.
DR AMIE O’SHAE:
Cool, awesome. Should we ask for any brave volunteers to put up their hand?
LINDA STOKOE:
We’ve got one. Depends which card they want.
VOLUNTEER:
I’ve got the mic so I will go first. Mine is to be able to do these things without other people stopping you, do you want me to talk about what that means?
LINDA STOKOE:
It could be about you or whoever.
VOLUNTEER:
I guess as a person with a disability, growing up with a disability, going to special school we didn’t really have much sex-ed, there definitely wasn’t LGBTIQ so I really relate to that point before. Because no one ever talked about this stuff it took me a long time to think that I could do any of this stuff in my life.
There was a lot of people that were scared and wanted to stop me expressing my sexuality. I think that’s really powerful for a lot of people with disabilities to think what that means and what they might want to do. If you’re not given those options a lot it’s hard to think through what that might look like and where to go to get people to be your allies in that space. The end, off my soap box now…
DR AMIE O’SHAE”
It’s good to have company on the soap box sometimes.
[APPLAUSE]
VOLUNTEER:
I have the card that says people with disabilities have the right to be sexual. I think for me this card it means so many different things. One of them being I guess that throughout my experience of working with disabled people is that people are often denied the basic right to have relationships due to many different reasons.
It’s sometimes due to fear, due to basic – sometimes just geographical distance, due to people living in segregated environments and often this fear is based on the fact that people think there is a lack of capacity, what you touched on before.
There is this notion of people with an intellectual disability being childlike and that if you are although you’re an adult but because you’re childlike therefore the same rights don’t apply. Obviously people with disability have the same rights as anyone else to have relationships and to be sexual.
Often particularly when people live in for example, in supportive residential units might often be prevented from having boyfriends and girlfriends and partners and what not and for them to stay over. It’s very difficult to have a relationship when you can’t have your partner come over and to stay over. That’s a barrier often for people who lives in those types of environments unfortunately.
Or they might need to seek permission whether it’s from a parent or from some sort of care giver to have a boyfriend or to be able to have a sexual relationship. Obviously that’s not right either because when you’re an adult and you’re a consenting adult you can have relationship with whoever you want to have. That’s what this card represents to me. I could talk more but I won’t so someone else can have a say.
VOLUNTEER:
The card I got is people with disabilities have the right to make your own decisions about relationships. So this is not entirely relevant but I had a little nephew with a profound intellectual disability. He was just hitting puberty and I remember the Doctors and nurses who worked with him were very worried that once he hit puberty he would start to do things in public that would upset other people.
I remember thinking that he would grow into a young man and he would have the right to do what he liked as long as it didn’t hurt other people. I hope that other people who work with young men like my nephew or anybody else remember that it’s everybody’s right to do what they like as long as they’re not hurting other people.
LINDA STOKOE:
Thanks for reading the cards out, thanks for that.
DR AMIE O’SHAE:
Great work. We’ve got time for a chat which is great.
LINDA STOKOE:
And time for questions, if you’re interested to give us some questions.
DR AMIE O’SHAE:
Over to you, any questions.
QUESTION: LANCE YOUSTEN (RIAC)
Thank you for sharing your experiences and great learnings. I had a question about which areas are you working in around Victoria?
MONICA WELLINGTON:
Do you want to say where our Victorian sites are?
LINDA STOKOE:
Victoria, that would be Melbourne, we’ve got Geelong.
MONICA WELLINGTON:
We’ve got a few in Melbourne.
LINDA STOKOE:
The North area of Melbourne, the West of Melbourne.
MONICA WELLINGTON:
and the South East.
LINDA STOKOE:
And the South East.
MONICA WELLINGTON:
Bendigo and Gippsland.
QUESTION:
Quite a big coverage. There is a self-interest in this question. RIAC is involved in a peer and self-education project in Horsham area so I was wondering if you would be willing to either recommend or travel for future projects, sometime in the next 12 months. Let’s talk after.
QUESTION:
I’m Janette from Yooralla. How do you go about assisting people with disabilities that say I just want to have sex and not necessarily have a relationship? They want maybe to have some sexual experiences like going to brothels and stuff like that?
DR AMIE O’SHAE:
So as Linda said the program runs over four sessions. Our aim in delivering the program is to share our focus on rights and the right for people to have the kind of sexual expression, relationship expression that matters to them.
LINDA STOKOE:
And they’ve got to be respectful.
DR AMIE O’SHAE:
Right and respectful relationships, thanks Linda. The program itself sits in that space. So somebody might come to the program. They might say I would really like to have sex, I don’t really – if I’m catching what you said correctly, I don’t necessarily want a relationship but I’d like to explore whether I can find a sex worker – am I on the right track – yeah. I would like to find a sex worker I can go and see who’s going to be a good person for me to be around and that’s going to understand what I need.
The same principle that I talked about for example with sexual health nurses applies in this setting. It’s about saying okay, how would that happen, who would that be. We don’t engage with people to provide that sort of support work but we then take that on and say there is touching base for example. We contact people who might know the kind of answers to those specific things.
It’s the principle of connecting people with the experts outside. Having said that’s that’s a question which generally comes from audiences like this and not from people with intellectual disability. I don’t see the same interest in that in our practice as I do in a kind of abstract question.
QUESTION:
I just had a query, what sort of age range is it targeted for? I think it would be a really good program. I have a daughter who is one and a half, when she gets older and that sort of high school terrible sex education experience, having access to a program like this and how does that work?
DR AMIE O’SHAE:
At the moment people who come to our program are 18 and up. To be honest there’s a whole heap of moral panic around sex education or even the word sex around kids in schools which in the safe schools debate has just ignited to be a maelstrom that’s probably made us think we do need to expand the kind of work we do to work in that space.
We don’t at the moment, but we’re working with a couple of partners to try and think about how we could bring peer education, which is really the most important bit of what we do. How do we bring peer education back to that environment so graduates from a specialist school, becoming peer educators, returning to the school, that kind of idea. But politically much much more charged environment that we’re even currently in. Pretty challenging.
QUESTION:
I’m just interested in the content of the four sessions and how much of it is focused on violence prevention kind of message and how much of it might be focused on sexuality and gender education stuff?
MONICA WELLINGTON:
Maybe we could tell people about the activities that we run or the themes for each of the days and that will kind of give you a sense I think. Unfortunately my experience they’re often difficult to disentangle. They are both and to talk about one with people with intellectual disability is to talk about the other. The activities that we run, you’ve told people about the rights cards.
LINDA STOKOE:
Yeah, the rights cards. We do dealing with danger cards.
MONICA WELLINGTON:
We got those from South Eastern Centre Against Sexual Assault. Do you want to tell people what they’re about?
LINDA STOKOE:
The danger cards, we do a little activity like if someone, an example, if someone was talking to you online would you accept them if you know them. You go yes or no or not sure. You could put it into them areas.
MONICA WELLINGTON:
Another one is sending a nude photo.
LINDA STOKOE:
Yeah, a text or something, a picture or something.
MONICA WELLINGTON:
What’s another activity that we do?
LINDA STOKOE:
We do the strength cards. Sometimes we talk about our strengths in the program as well. We could talk about ourselves or sometimes the strength cards we use we sometimes do it after a story and talk about the strength about that story.
MONICA WELLINGTON:
As an example there’s a strength card that Linda always picks, will you tell people about that one for yourself?
LINDA STOKOE:
It’s more – it can be for myself or one of the stories and it’s always independence because it’s in the story. In these stories people have got independence they do what they want to do and it’s like me, I do what I want to do. I do my thing I go places everywhere. I’m independent.
DR AMIE O’SHAE:
You do the relationship cards.
LINDA STOKOE:
Yeah, the relationship cards, we usually do that can go with one of the stories because there’s like a couple in the program. A couple and it’s good in a relationship we talk about very close or not close or and we can put certain cards in between what they are like for example tongue kissing would that go very close or not close or you might want it about the middle.
MONICA WELLINGTON:
It’s about intimacy.
LINDA STOKOE:
Yeah, that’s what they used to be called but we changed the name.
MONICA WELLINGTON:
So is there one right answer or people might put them in different spots.
LINDA STOKOE:
A lot of people can put them wherever they’re sure they can put them. If that card wants to be in very close it will sit there or if it doesn’t it goes in about the middle or wherever or up the other end.
When all the cards are down we talk about all of them, about that card and where you put it and if you don’t like where it is you could move to it where you would like it to be because you might be more sure it might be better to go in that spot.
DR AMIE O’SHAE:
.That’s not some kind of circles program. We don’t tell people that goes there, no you’re wrong that goes over there. We talk about for some of those things different things are intimate.
One we talk about is sleeping together but not sex, just actually physically sleeping together. For some people that’s very intimate and close and then other people are no if someone needs a place to stay they can stay. We talk about how different things create intimacies although we’ve change that word because it was too much of a tongue twister between people.
Another one that comes up there and there is lots of sex acts as well, another one that comes up is sharing secrets.
LINDA STOKOE:
Or going to the movies.
DR AMIE O’SHAE:
That sharing secrets idea is an example of how violence and abuse prevention and sexual expression or sexuality rights, do this a lot come together a lot.
QUESTION:
Thank you that was really helpful.
MONICA WELLINGTON:
You’re really welcome to see our manual, Linda is the expert on our manual.
LINDA STOKOE:
That’s if she had it with her…
Monica Wellington:
Any last questions, anything you want to add? No.
MELISSA HALE:
There is one more.
QUESTION:
I’m curious if you work with people who have different disabilities as well as an intellectual disability say autism and an intellectual disability?
DR AMIE O’SHAE:
.We do yeah. So the program is run by sites in their local areas and they advertise it in different ways according to what they think works in their community. They say this is a program for people with intellectual disability to talk about rights in relationships. Anybody who looks at that and goes oh yeah that’s me comes along.
QUESTION:
I was also curious how many people are actually in the sessions? It seems you’re having quite in-depth discussions and I was wondering how you facilitate that?
DR AMIE O’SHAE:
When we run the training, when we train sites to become peer educators there is usually about –
LINDA STOKOE:
We could have sometimes about ten in the group.
MONICA WELLINGTON:
Eight to ten usually.
DR AMIE O’SHAE:
And when the sites run the program so we’ve trained the trainer model, when they run the program they might have six to eight. Your right time for people to have discussion and listen to each other is really important. Each session runs for about –
LINDA STOKOE:
Two hours.
QUESTION:
Awesome, thank you.
QUESTION::
Hi, my name is Robyn I’m from Independent Family Advocacy and Support. I was curious about people that might – conversations around contraception and particularly when mainstream may be pushing particular forms of contraception onto people in the program. Leading on from that thing conversations that may occur with people in the group around their rights to be a parent.
MONICA WELLINGTON:
So, one of the stories talks about contraception.
LINDA STOKOE:
Yeah, we’ve got a story that talks about that, contraception and she wants to have a kid and everything. She does have one, she was expecting one but she has a miscarriage then she goes on the needle. Everyone always when we do the program, they always point to their arms like the rod all the time. We talk a bit about contraception a lot.
DR AMIE O’SHAE:
So if someone was in the group you’re in and they said to you say, I want to know more about why I have to have this rod in my arm, what would you say to them?
LINDA STOKOE:
Like it’s up to them if they want the rod in their arm. If they don’t want it in their arm they’re just going to get pregnant, if they want to be a family and that. It’s up to them if they want to fall pregnant or have the contraception or the things they usually have for contraception. We talk a lot about contraception and all about safe sex and stuff.
MONICA WELLINGTON:
We talk about parenting too.
DR AMIE O’SHAE:
What do people – what sort of things do people say when they talk about being a parent, wanting to be a parent?
LINDA STOKOE:
Well it might be good to be a parent or some people might not want to be a parent.
MONICA WELLINGTON:
There’s an excellent program done by the Speak Out Self-Advocacy Organisation in Tassie, particularly by Sonia. They’re push is support before report. I don’t know if you’ve seen that but I recommend that as a place to start looking for more useful and productive ways of engaging with people with intellectual disability who are parents.
We might talk about their work, and you’rE friends with Sonia, and the type of advocacy she does with other women.
LINDA STOKOE:
I know how she feels sometimes when she has her kids and that. I remember when she said she was having problems with her daughter. She had been taken off her for a while and then she fought it and fought it and got her back. I know how she feels.
MELISSA HALE:
We’ve got time for one more question if anyone has one. I just had a query actually. I’m a parent of teenagers so this is really scaring me a little bit. I was wondering if there were resources or programs available for parents or a kid with disability to learn about their rights exactly the same as children without disability and how to have those conversations?
DR AMIE O’SHAE:
For parents with children with disability, yeah I think – you’ve got one.
LINDA STOKOE:
Yeah, my daughter.
DR AMIE O’SHAE:
And has there been stuff to help you talk about sex and relationships?
LINDA STOKOE:
I think I got that from RIAC.
MONICA WELLINGTON:
I think it’s back to Jackie Brown’s reflection on the poor quality of education generally given to kids with disabilities and particularly when it comes to talking about sex. If we’re la la la la, if we don’t talk about it it won’t happen.
I take your question on notice, I’m going to get back to you Melissa with some answers about resources we use that are good for parents. Theoretically the Victorian curriculum on respectful relationships should include and target all children in Victorian schools. It doesn’t and it’s a failing and been a failing for a long time.
The answer should be our kids are educated inclusively and ways that are meaningful to them about respectful relationships, their rights. As I said with the safe schools debacle we’ve seen how poorly done that can be and how politicised the space can be.
The answer is they should be doing it but we’ve definitely got some stuff we can tell you about.
MELISSA HALE:
I think it’s definitely a fantastic start. You guys have started some really really important learning processes. It’s wonderful. We’ve got one more question before we go to a break.
QUESTION:
Just in response to that question. The Association for Children with a disability have a resource on their website called PEP Talks and it’s about how to start that conversation with your child with a disability. There is resources there and that might be useful for parents who have a child with a disability. It will about the full range of disabilities and not just cognitive disability as well. That could be a place to start.
MELISSA HALE:
You can take the question off there now because it’s just been answered. Thank you so much thank you for sharing your work and sharing this quite fascinating stuff. I think we’ve all really enjoyed hearing from you today.
Thank you very much. We will go to a break. If you can come back at 2.30 pm that would be fantastic. See you then.
Sexual Lives & Respectful Relationships website (off-site)- Author:
- DARU
- Date published:
- Tue 9th Jul, 2019